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Why are My Prescriptions So Expensive? | Alex Oshmyanksy + Dr. Vincent Rajkumar

Why are My Prescriptions So Expensive?

Cost Plus Drugs Founder & Mayo Clinic Doctor Explain

Alex Oshmyanksy feature

Prescription drug prices in the United States are significantly higher than in other nations. In fact, 1,200 prescription drug prices rose faster than the rate of inflation between 2021 and 2022.

In this conversation, Alex Oshmyansky, founder and CEO of the Mark Cuban Cost Plus Drug Company, and Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, talk about the exorbitant costs of medicines, the impact it has on patients and families, and why the current system needs to change.

The interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



The more you delve into it, you find it’s not simple and that’s why no one is able to fix it… You just don’t even know where to start if you want to pick something.

Dr. Vincent Rajkumar

Introduction

Dr. Vincent Rajkumar, Mayo Clinic: I work at the Mayo Clinic. I’m a hematologist oncologist and my disease specialty is multiple myeloma. I do research, education, and practice as far as myeloma is concerned.

I also have an interest in drug pricing, which started because I run a lot of clinical trials and work with new drugs. I do studies on racial disparities so I’m aware of the impact [of] cost of medicines and health care [on] various communities.

I also edit the Blood Cancer Journal along with my colleague, Dr. Tefferi.

When it comes to drug prices, there’s [an] impact on the patients, who are the people actually affected by the disease, as well as the cost of taking care of the disease. [I] hear not only from patients that I myself treat but also from patients across the country.

I wrote my first paper on [the] cost of prescription drugs in 2012 and it was focused on cancer — the high price of cancer drugs and what we can do about it. It was mainly because I worked on Thalidomide, which was the drug that was banned in the 1950s because it caused teratogenicity.

I’m probably the only physician in the world who actually used Thalidomide to treat leprosy, which was approved for, and subsequently started using it for myeloma. I was in India using Thalidomide for leprosy and it was given to us basically free of cost in huge buckets that you could use to treat patients.

Then I come to the US and I find Thalidomide costs $10,000 a month. This drug should cost $10!

Lenalidomide

I see the price of Lenalidomide launched at around $4,500 and then going up every year to $5,000, $6,000, $8,000, $10,000… and you’re going, What’s happening? That’s when I said I really need to understand the root cause of these problems.

The more you delve into it, you find it’s not simple and that’s why no one is able to fix it. It starts with monopolistic pricing then the middlemen and the whole infrastructure that you just don’t even know where to start if you want to pick something.

Alex Oshmyanksy, Mark Cuban Cost Plus Drug Company: I’m a board-certified diagnostic radiologist. I have a PhD in applied mathematics. When I was a kid, I was going to be a string theorist, so a high-energy particle physicist. I was being fast-tracked into that. With all the wisdom of a teenager, I decided that wasn’t going to be impactful enough in the real world so [I] made a hard shift [in] my last year of college and decided to major in biochemistry instead. [I] graduated at 18 and went on to medical school and completed an MD-PhD program.

While I was at Hopkins, I was working with a pulmonologist on a research project. One day, he came in infuriated because two of his patients died over the same weekend. They both needed a drug called Bosentan, which treats primary pulmonary artery hypertension — hypertension specifically of the big blood vessel that comes out of the heart and goes to the lungs — and they both needed it urgently.

At the time, the medication cost $10,000 for a month’s supply, despite the fact that it was long off-patent [and] was a generic product at that point. They were meant to apply to a patient assistance program set up as a nonprofit by the manufacturer who made the product, got caught in the red tape, and both of them tragically died [on] the same weekend.

Martin Shkreli

I had been angry about these topics for some time and you think that’d be enough to set me off. But what really became the straw that broke the camel’s back was Martin Shkreli, the so-called pharma bro.

In 2015, he was a social media villain-of-the-day type [of] guy. He was a hedge fund manager who took over a pharmaceutical company and increased the price of a drug called Daraprim — generic Pyrimethamine, primarily used by indigent patients or immunocompromised — by over 10,000%, hundreds of dollars a tablet.

I got very mad and some of my friends, who are also doctors, [also] did. We decided very naively, “Let’s set up a nonprofit pharmaceutical company that will make drugs [and] sell them at cost.” While working as a doctor, [I] went out for the better part of three to four years trying to raise funding for the nonprofit and did not succeed. Failed spectacularly — raised $0 beyond what I put in myself.

Eventually, [I] got talked into converting it to a for-profit public benefit corporation — [a] for-profit company but with a registered public mission with the state. [I] sent Mark Cuban a cold email on a whim and surprise, surprise! He reads all his emails. And the rest, as they say, is history.

The path is incredibly complicated. It’s very convoluted and that’s by design.

Alex Oshmyansky
pharma to pharmacy

The path from pharma to pharmacy

Stephanie, The Patient Story: There is this path that goes from the pharmaceutical companies — with the research and development of these drugs — to the pharmacies where you and I go to pick up the drugs and the prescriptions. Could you summarize what happens? What is in this path here?

Alex, Cost Plus Drugs: The path is incredibly complicated. It’s very convoluted and that’s by design. There’s a layer of financial engineering that takes place between you and actually purchasing the product.

Pharmacy benefit managers are firms [that] are outsourced to by insurance companies to decide which products are covered by insurance. They manage all the payments. Back in the 1980s, before computers were as widespread, they were initially there to literally process payments. They would get paid to do the paperwork when a prescription insurance claim was submitted.

What they realized over time was, Since we’re paying for the drugs anyway, we can collectively bargain for the drugs. They turned into negotiators for drug prices, which sounds good.

Eventually, what they realized was, The way we’re getting paid is we take a percentage of the savings. The best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.

Imagine you wanted to buy a [car] but you hate negotiating at the car lot. It’s miserable. Everybody hates that. Somebody comes up to you and [says], “Hey, I will do the negotiating for you and in exchange, I get 10% or 20%,” or whatever the amount of money they save you. You’re like, “You know what? That’s worth it to me. I hate negotiating.”

The negotiator comes back and says, “Hey, amazing news. I got you a great deal. I got you 90% off of your [car].” “That’s amazing. How did you do that?” “I’m really, really good at negotiating.” Come to find out the sticker price on the [car] was $1,000,000 and you’re paying $100,000 for your [car] plus the fee from the negotiator, which is another $90,000. All of a sudden, you’re paying $200,000 for your [car]. That sounds like a crazy, over-the-top example, but it really happens.

What they (pharmacy benefit managers) realized was… the best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.

Alex Oshmyansky

The example drug that I use all the time — because it’s the most extreme edge case — is a product we offer called Imatinib, which is a chemotherapy product. It’s a tyrosine kinase inhibitor for chronic myelogenous leukemia and you need to be on it for many, many years. The list price, the so-called average wholesale price, is $10,000 for a month’s supply.

Now, if you get it through your insurance and you have a high deductible plan, it’ll be “adjudicated” at between $2,000 and $3,200 as the negotiated discount price plus the margin for the PBM. Meanwhile, if you get it from the Mark Cuban Cost Plus Drug Company, it’s $39 for a month’s supply. That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer. It’s the intermediaries in the pharmaceutical supply chain taking a percentage of the rebate. It’s just one of the many, many scams [that] has evolved over the past 30 years to take advantage of the sick and vulnerable and it’s absolutely morally repugnant.

That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer.

Alex Oshmyansky

Drug price disparity

Dr. Rajkumar, Mayo Clinic: You don’t see that kind of spread anywhere else with any other product. It’s happening because there are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.

Unless the patients are aware, you could be vulnerable to high prices, whether it’s insulin, Gleevec, a new cancer medicine, [or] an old medicine. What we find is where the prescription goes, how the prescription is written, [and] what you’re aware of as far as the coupons and rebates you get can really affect how much you pay for that medicine. And it’s not a small dollar amount.

There are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.

Dr. Vincent Rajkumar

Stephanie, The Patient Story: We know about pharma companies and the R&D that happens there. There’s a price set. Can you describe the path?

Alex, Cost Plus Drugs: Basically, the wholesalers do take a markup. On specific products, it can be a very, very high markup. Our initial product, Albendazole, an antiparasitic drug, is available from us for [about] $30 for two pills and a complete course of treatment tends to be two pills. But, as far as we could tell, about $70 a pill from the pharmaceutical wholesalers if you purchase it directly from them.

There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles once you purchase from a wholesaler. That sounds like a lot and it is. It’s perhaps a bit too much but at least they serve a function. They send the products around the country.

The best way I can describe it is it’s basically a pile of spaghetti with lines going [in] every direction from all the various different actors — PSAOs (Pharmacy Services Administrative Organizations), GPOs (Group Purchasing Organizations), the insurance companies, the pharmacy benefit managers, patients — about the way money winds up flowing in the pharmaceutical industry.

The way I think about it is this is a feature, not a bug. The system is so artificially complicated that it permits basically theft in the service of it.

There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles.

Alex Oshmyansky
pharma to PBM to insurance

Understanding drug pricing

Stephanie, The Patient Story: Let’s just give an example for a $10 pill. Let’s say that’s what the pharmaceutical company has set the price on. Can you give an example of “roughly” what that could look like by the time it gets to us?

Alex, Cost Plus Drugs: On average, it’ll be about $20 from the wholesaler. The pharmacy will probably add on let’s say $10 just to keep the numbers round. It’s usually maybe more $6 to $8, but let’s say at the pharmacy, it’s about $30. Then the price manipulation starts to happen and that’ll be the actual price at the end of the day.

There’ll be a number of artificial prices put on it depending on if it’s a brand name drug [or] a generic drug. Let’s say it’s a generic drug for the sake of argument. Generally, a generic drug is priced at a pharmacy benefit manager at about an 85% discount. They will say that the price of the drug is, in this case, $200 so that’ll be the price you see if you try to pay cash at a pharmacy without using a special program of some kind. It’ll be artificially inflated to $200 so they can negotiate it back down to $30 and then charge a little bit more for the service of negotiating.

The manufacturer will have to pay a rebate to the PBM, who in turn takes a cut and forwards part of the rebate to the insurance company that’s paying the ultimate bill. But the insurance company has to pay the whole thing first. [Plus] the wholesaler, somewhere in the mix of all of this, holds the money for six months and makes money off of the interest. It’s a whole morass.

Dr. Rajkumar, Mayo Clinic: Unfortunately, there’s no rhyme or reason for these prices. Patients can go and play around on some websites, like GoodRx.com. [If] you enter the name of a drug and order a 30-day supply, you would find a coupon for [a] 90% discount. If you order [a] 60-day supply or a 90-day supply, you may get a [bigger] discount.

For example, Lenalidomide, which is Revlimid. Medicare spends more money on Lenalidomide than just about every other drug. The drug costs the same whether it’s a 5 mg tablet, 10 mg tablet, 15 mg, or 25. [If] you take two 5 mg tablets, [you’ll] be paying double the amount — $36,000 instead of $18,000. I’m giving an extreme example but [for] many drugs, you have to really look. Taking the drug twice a day just because you want to break it down is not going to be the same price. You pay double.

Stephanie, The Patient Story: How can there be such a disparity going from point A, which is the same, but in a hundred different locations? It’s just all over the map.

Dr. Rajkumar, Mayo Clinic: Yeah, and it’s hard to regulate. There is no transparency. If you try to say let’s not have rebates, then the people in the middle could just convert rebates into fees. This is how much I charge for me to buy the drug from someone and give it to you. They can add five different types of fees in between so that the price of the drug gets marked up.

I think government and regulators have to take a close look at this. The Federal Trade Commission [has] to really look into who’s making profits, how, what is competitive, what is anti-competitive — all of that has to be looked into.

Meanwhile, patients, as well as physicians, can be aware of the system. Be aware that it’s not just simply getting a prescription and getting it filled at the closest pharmacy. Be aware that your copay for insurance might be higher than if you just paid cash for the same drug without going through your insurance company. And that could be substantial.

After I posted my tweet, people were posting, “It cost me $250 with insurance and $10 cash.” Then why have insurance? Unfortunately, even physicians are not aware of all of the disparities. You must be aware of it. Just check. Make sure your physicians check.

I tell my colleagues [to] make sure you ask patients about affordability. Can you afford this medicine? What is your insurance like? How much copay do you have? Just talking to patients and inquiring [about] their situation so that if somebody says, “No, doc, don’t worry. My prescription drugs are fully covered. I have a $10 fixed copay.” Fine, no problem. But if someone says, “I pay 5% of my prescription cost as a coinsurance,” then you better be careful how much that drug is billed, that you’re sending it to the right pharmacy.

woman at the pharmacy

Finding the best price for your prescription

Alex, Cost Plus Drugs: As a general rule, the worst prices will be at your big national chain pharmacies. Obviously, I’m biased but generally, for most products, we tend to have the best price or at least close to it.

We are a registered pharmaceutical wholesaler. We buy the products [directly] from the manufacturers at our flat 15% markup on top of it, a $3 dispense fee, and $5 shipping and handling at CostPlusDrugs.com. You can get any of about 1,000 generic products from our site as of today and we’ll be adding on brand-name products in the near future.

Dr. Rajkumar, Mayo Clinic: Many, many people are finding out that just going to Cost Plus Drugs and getting the generic might be much cheaper than paying the coinsurance and that shouldn’t be that way. It just doesn’t make sense.

Stephanie, The Patient Story: What can people do? What about the people who don’t have their drugs covered yet by Cost Plus? I know you’re working on that. What can they do at home?

Alex, Cost Plus Drugs: There [are] a number of different resources. Always check with the manufacturer’s website. There may be a co-payment assistance card or other cash assistance program. They might not be the most convenient things in the world but, oftentimes, you can get the cash out of pocket. You have to pay down significantly that way.

Discount card programs, like GoodRx or SingleCare, might be an opportunity. They tend to be more generic-focused as opposed to brand-name products. I think those would be the two easiest things if you need a brand-name, on-patent medication.

Generally, the easiest way to know is if it has a really easy name to pronounce, it tends to be a brand-name medicine. Google the name of the medicine, check the manufacturer’s webpage, and see if there’s a program available to help you afford it.

If it’s a generic one, check CostPlusDrugs.com. If we don’t have it, look for a discount card program; maybe there’s a discount available there. You can even ask your pharmacy, “Can I pay cash?” and see. Oftentimes, the discount cards are unnecessary and they’ll just sell you the drug cheaply.

Always check with the manufacturer’s website… Discount card programs might be an opportunity.

Alex Oshmyansky

The road ahead

Stephanie, The Patient Story: That’s amazing advice. Between the brand name and the generic, has it been much harder with one than the other?

Alex, Cost Plus Drugs: The generic companies, it’s been easier to get ahold of those products just because there [are] more of them. There’s more competition and more people looking at ways to get their products across

The brand-name companies [are] not necessarily beholden to the PBMs but it’s a big risk to them to go outside of the PBM structure, which is not great. They’re not thrilled with it because, from their perspective, they do all the R&D, they take all the legal risks, [and] they take all the bad publicity from the public when people complain about high drug costs. They’re like, Why are these companies getting a third of the revenue from our products? It’s insane.

At the same time, the status quo works for them. It’s a bit of a risk going with us but I think in our conversations behind the scenes, they’re willing to take that risk at this point. They’re kind of sick of the status quo as well. We’ll be bringing them on in the near future.

shaking hands

Stephanie, The Patient Story: What is the next big vision of what this landscape will be like for people?

Alex, Cost Plus Drugs: Adding more and more products, brand-name products, on a very tactical level. Beginning to work with insurance companies over the course of the next year — on our terms, of course.

Hoping long-term to change the status quo to something more sustainable based on taking the pharmaceutical marketplace and making it like any other marketplace — where you can see what the prices are and make rational, informed decisions as a patient and as a consumer based on real prices instead of make-believe numbers.

Thankfully, things are changing and they’re changing for the better.

Dr. Vincent Rajkumar

Advice for patients and families

Stephanie, The Patient Story: This was a huge eye-opening conversation. Is there anything else you’d like patients and families to know?

Dr. Rajkumar, Mayo Clinic: I just want patients and families to know, number one, people are taking notice and people are aware. People are becoming aware that this is a problem and have decided we have to change. People like me, Patients for Affordable Drugs, [and] many others are now taking notice that the others in the system are not playing well — pharmacy benefit managers, wholesalers, pharmacies — and we have to advocate for reform in that area.

I am also very happy that people like Mark Cuban have taken it on themselves. When the CEO was talking at Mayo, he said they started with 12 drugs and within a year, they’ve got almost 1,000 drugs at prices that are lower than any pharmacy in the US. Then now, hopefully, they can negotiate with pharmaceutical companies and get insulin and brand-name drugs. We’ll have to wait and see.

I don’t have any inside information, but patients should be aware that, thankfully, things are changing and they’re changing for the better. As long as they are aware that prices can be varied and physicians are aware, then even within the current system, they can find a lot of drugs — including cancer drugs — at affordable pricing.

Hoping long-term to change the status quo to something more sustainable… taking the pharmaceutical marketplace and making it like any other marketplace.

Alex Oshmyansky

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Valarie’s Multiple Myeloma Story

Valarie’s Multiple Myeloma Story

Valarie T. feature profile

Before being diagnosed with multiple myeloma and breast cancer, Valarie worked in the human resources field. Since being on the cancer journey, her focus has shifted to patient education and advocacy.

As a cancer survivor, her goal is to learn more about the diseases, educate others and bring light to health inequity. She wants to use her voice for those who cannot speak up for themselves to ensure that they receive equitable access to good healthcare, clinical trials and proper treatment.

Valarie’s journey in patient education, mentorship and advocacy began when she became a support group leader. She is now a myeloma coach, mentor angel and leader of the Black Myeloma Health Community. She has had the opportunity to talk about disparities myeloma patients face and looks for solutions through partnerships with healthcare providers.

  • Name: Valarie T.
  • Primary Diagnosis:
    • Multiple Myeloma
  • Initial Symptoms:
    • Nose bleeds
    • Fatigue
    • Back pain
  • Treatment:
    • Chemotherapy
    • Stem cell transplant
  • Secondary Diagnosis:
    • Breast Cancer, Triple-Negative
  • Staging: 1A
  • Initial Symptoms:
    • None; caught at a regular screening mammogram
  • Treatment:
    • Chemotherapy
    • Mastectomy

Get educated about your disease. Understand what it is. Knowledge is power. When you get that knowledge, do something with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.

Valarie T.
Valarie T. timeline

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Valarie T.

Pre-diagnosis

Introduction

I’m [a] pretty down-to-earth person. I enjoy the great outdoors when it’s warm [and] spending time with friends and family.

What I do is work that’s around myeloma and patient education. I also enjoy doing things at my church. I’m really involved with my church and that brings me great joy.

Initial symptoms

It was late 2014. The first incident happened around Thanksgiving. I went back to school. I was studying and working on some homework on my computer [when] I got a nosebleed. I didn’t think anything of it. I just stopped for a little bit, held my head back, and [it] kind of dissipated [so] I got back to doing what I was doing.

The exact same thing happened [again] a couple of weeks later but this time, it bled a little bit more, a little longer than the first time. I still wasn’t concerned. I thought it was the weather. I’d asked some of my friends, “What do you think’s going on?” And they’re like, “Oh, it’s changing seasons and you probably got just some dry sinuses.” They told me to “just put a little Vaseline in there. You’ll be okay and keep going.” I did that and I thought it was working.

When I got a bout of flu, it just wouldn’t go away.

Valarie T.

About a month later, I got sick with the flu and I just felt tired, overly tired. At that time, I was working full-time in HR. I was overly tired when it came to work, but I didn’t think anything of it. I was working, doing schoolwork, [and] very involved in church, so I just chalked it up to just trying to do too much at one time.

But when I got a bout of flu, it just wouldn’t go away. I went to the doctor. I got all the things that you take [that] should [make you] feel better. It was Christmas Day [and] I couldn’t even celebrate because I was sick in bed so I knew something was going on. I went over to my local [pharmacy]. They gave me more meds and said, “If you’re not better by Monday, go see your primary care.” And that’s what I did.

I went to see my primary care physician. I told her what was going on with the tiredness. At that time, I did have some back pain. It was nothing major. I told her about the back pain and the nosebleeds. She listened to what I had to say. She ran a complete panel of blood work and that came back showing high protein so immediately, she sent me to see a hematologist-oncologist. That’s how things started.

When she sent me to the hematologist and I saw ‘oncologist’ tagged on, I knew something was not like it should have been.

Valarie T.
Initial hematologist-oncologist appointment

When my primary care referred me to the hematologist, I didn’t think anything of that because I had been diagnosed with anemia many, many years ago and I was taking iron supplements.

It wasn’t until I went to see the hematologist and found out that he was an oncologist as well. I’m like, “Why would I need to see an oncologist?” It was something that snapped in my head at that moment. This is a little bit more than what I’m thinking, but I still didn’t think anything too drastic.

I make this joke all the time. I tell people, “I went to see my hematologist thinking I was going to get a prescription for iron and I came back with a cancer diagnosis.” That’s literally how it happened.

When she sent me to the hematologist and I saw “oncologist” tagged on, I knew something was not like it should have been.

I heard the term ‘biopsy’ and I’m like, ‘Okay, this is really serious.’

Valarie T.
Testing

They were a little suspicious from the blood work. At this time, they were still doing the full body X-ray. It was when they did the full body X-rays and the bone marrow biopsy [that] all the pieces started to come together.

Another incident that let me know it was a little bit more serious [was] when they asked me to come back. I went and did blood work for the hematologist early one morning and before I had gotten home, the nurse called and said, “We need you to come back. The doctor wants to do some more tests.” I’m like, “Well, what does he see? What is he expecting?” She wouldn’t say anything so that was another thing. Something’s going on because I haven’t even gotten home and you want me to come back right away.

She told me to come back because they needed to do a bone test. I didn’t know what that was. Little did I know that that was a bone marrow biopsy. When I got there, I heard the term “biopsy” and I’m like, “Okay, this is really serious.”

Valarie T.
Importance of a good support system

Luckily, my friend went with me. She said, “I’m not going to let you go back over there by yourself.” I did have some support when things started to unfold.

I remember the doctor talking to me and I heard the words, “You have myeloma. It’s incurable.” I went blank for a minute. It is always helpful to have someone with you [to] maybe ask some questions that you wouldn’t even think to ask [or be] a second set of ears, second set of hands. You want to have somebody there.

How to help someone with cancer »

Valarie T.

Diagnosis

Reaction to the diagnosis

It wasn’t as shocking because I had just learned about my chart. I had been looking at every single test that had come back. If this is high, what does it mean? Multiple myeloma kept coming up and I’m like, “What in the world is that?” But I still put it out of my head.

It wasn’t until that moment I went into the office and was sitting there and heard those words. It was like somebody kicking me in the gut. What? Cancer? An incurable cancer? And that’s when the flood of fear came. I’m going to die. I’m too young to die. Why me? All of those range of emotions. How am I going to tell my family? What do I say? Where do I even start to talk about this?

Reacting to a cancer diagnosis »

Valarie T.

My friend, Judy, went with me to that appointment. She’s a cancer survivor as well so she was like, “I’m not going to let you go by yourself.” That was very helpful to have someone who has heard those words before. She knew exactly what I could have been feeling so she was there to help me keep it together.

Breaking the news to loved ones

It was hard. I didn’t do it right away. It [took] a couple of weeks. I knew they would have questions that I didn’t know [the] answers [to] or where to even begin.

My friends see me every day and they want to know what’s going on. It was easier for me to say, “Hey, this is what’s going on,” and just left it at that because I didn’t know what to expect.

I don’t live near my family so it was a little difficult. It was hard because I didn’t know what to tell them. I didn’t know the answers. That was one of the most difficult things to do. I finally got the courage to just say, “I’ve got multiple myeloma and this is what it is. I don’t know where it came from. I don’t know anything, but this is what I’ve got. This is what I’m looking at.”

How to tell your family and friends you have cancer »

Valarie T.

What was very helpful to me was the advocacy agencies… Places like that are very good to provide information.

Learning about multiple myeloma

It was tough to begin with because [of] the shock that you have myeloma. But I learned very, very early. I wanted to learn as much as I possibly could about whatever was invading my body. If I can learn about it, I can at least try to get one step ahead.

For me, I always say it was just a control thing. I felt the more I knew about it, at least I would have some control. That was my mindset so I went on this mission to find out whatever I could about the disease.

It just stuck with me, actually, this whole time. I’m always on a mission to find out a little bit more about the disease.

Valarie T.
Finding the right information

It’s different for everyone. What was very helpful to me was the advocacy agencies. I went to the IMF (International Myeloma Foundation) website to find out what you’re going to need to know and some questions. They have some cool tip cards and brochures.

I utilized the MMRF (Multiple Myeloma Research Foundation) website [and] found out what was going on. Places like that are very good to provide information.

At that time, HealthTree was just coming up so I was looking to see what I could find that was going to help me figure out what to ask at what point in the journey.

What is health literacy and why is it important? »

Treatment

I got diagnosed and they wanted me to start treatment the next day. I was like, “Okay, I guess I should go ahead and do this,” because what do you do when you get cancer? You want to get it out of you.

I didn’t start right away. It was probably a week or two later when I went in. I followed what they said because I didn’t know the right questions to ask. I went along with what the doctor [said]. I hadn’t sought a second opinion. I didn’t realize that I needed to see a specialist.

I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility.

Valarie T.
Deciding to get a second opinion

About three treatments [in], I just felt horrible. At the urging of my family, they were like, “You got to get a second opinion. You have to. You’re up there where all those doctors are. You have the ability to do that.” I decided to get a second opinion and it’s one of the best things that I could have ever done.

I saw a hematologist at a local hospital. He treated other cancers as well so I realized that that was not the best thing for me.

They started me out with Thalidomide, Velcade, and Dex — that was my treatment regimen to begin with. I didn’t realize that was an old regimen that wasn’t being used and my doctor probably didn’t realize that either that’s why he gave me that. I did about three- or four-week cycles worth and by that time, I was able to get that second opinion. 

I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility. I knew something was wrong because that was not me at all. Two months ago, I could still walk and was coherent.

Where I live, there is a facility called the Cancer Treatment Centers of America. Everyone was like, “You’ve got to go there. That’s all they do — cancer, cancer, cancer. You’re going to be in good hands.” I decided to go there.

Should patients get second opinions? »

Valarie T.

It was[then] I started learning a lot more about myeloma and the different treatments available. It was through them that I got connected with the specialists.

I came to find out that my hemoglobin was at 4.6 so that’s why I was feeling horrible. I learned that [my regimen] was not the latest treatment. [It] was standard of care, but there was something better.

I also learned about stem cell transplant. We talked about [it] and what that looked like. I learned a lot more than what my local oncologist shared with me. I feel that with my local oncologist, [there] was a lack of communication. I was told, “You’re going to do four cycles of this, then you’re going to go for a stem cell transplant, then you may do a couple more cycles, and then you’ll be back to your new normal.” And I was like, “Oh, okay, so maybe [in] a year things will be back to normal?” And that was not the case.

When I got to the other doctor, he really explained what the process entailed and [that] there’s no certain time. It’s not like you’re going to do this and you’ll be back to your normal life. It was eye-opening because I wanted to believe what I had been told. It sounded so much better and it would have worked for me if that were the case. But life’s not like that.

At first, I was a little angry. How does this even happen? But it happens. It helped me understand that there has to be more done when it comes to awareness and letting people know about myeloma. Letting people know that this is what myeloma is, but also letting them know what treatments are out there, what you should be getting and what [is] probably not the best thing for you to be receiving either.

Valarie T.
Side effects

When I switched from Revlimid to Pomalyst, it took a little bit of getting used to because my body was like, “Oh, I don’t think I like that.” I had major GI issues and most people don’t have GI issues with Pomalyst but that’s something that I was struggling with.

Taking those in combination, I had shortness of breath [which] slowed me down even further. I was concerned. There’s the risk of cardiac issues when you’re taking Kyprolis. I got afraid. I’m like, “I don’t want to take that because it may be doing something to my heart. I’m having shortness of breath already.” They sent me to see a cardiologist a couple of times just to make sure everything was okay and [it’s] one of the side effects. I eventually adjusted to that. That’s just part of the new normal so I adjusted and kept going.

I was very vocal. Even if I thought it was a side effect, I would say something because I didn’t know. I looked at the list of everything that could happen but maybe this is something that hadn’t been reported. It is possible.

With Velcade, I did have some neuropathy in my toe area to start with. My doctors would always ask, every week when I would come in to get it, “Are you feeling any numbness, tingling, or anything of that nature?” Even if it was a small amount, I would make sure that I said something so they could do something about it and that was very helpful.

Hear directly from patients who shared what side effects they experienced after undergoing treatments »

Valarie T.

Velcade is a subcu (subcutaneous injection) and I’m sure most people would have those little spots on their abdominal area wherever the shot was given. Sometimes it could be painful and I would tell them so they could guide me on what to do. [There] wasn’t a whole bunch they could do. It’s just unsightly. It’s a reminder of what you’re going through but still, I was very vocal in letting them know what was going on.

With Revlimid, one of the first things that scared me is I woke up itching one morning. It started as an itch on my legs. Did something bite me? Is it a mosquito bite? Before the end of the day, I was just itching all over uncontrollably. The more I scratched, the worse it got. Nothing would take it away. I called the doctor and they called in a prescription that would help. But people need to be aware of that. I didn’t know that could happen. I was surprised. What the heck is going on? It was really bad.

I realized that I’m not in control of this or anything else.

Valarie T.
Dealing with treatment roadblocks

It was that word: control. It was then that I realized I’m not in control of this or anything else. I did all the things that I was supposed to do. I got my knowledge. I have no control.

All of those feelings, I just sat with them. I didn’t try to push them away. I just said, “You’ve got to deal with this. You’re going to have to deal with this.” And I just dealt with it.

My faith played a very important role. I had my prayer partners praying and that helped me tremendously. And I sought some therapy because I knew I can’t do this by myself. It’s not something that I can just pray away. I really needed some outside help.

I needed somebody that was going to listen and just listen. I couldn’t talk to my friends because they didn’t understand. They just hadn’t been there. They didn’t know. Therapy was one of the best things I could have done because my therapists helped me through the process.

My faith played a very important role… And I sought some therapy because I knew I can’t do this by myself.

Valarie T.

Stem cell transplant

Preparing for stem cell transplant

I did four cycles of treatment thinking it was going to bring down the disease burden to where I could move forward with [the] transplant. At the end of my four cycles, I’m thinking, “Yes! It’s [the] transplant.” It didn’t happen. I hadn’t eliminated enough of the cancer cells in order to move forward.

Then comes the conversation of [needing] to do more therapy. We’re going to continue the induction therapy. That’s when I found out about myeloma clones. Never heard of that until I was about six months in. It’s those little things that if you know, then you can be better prepared.

I wasn’t prepared to be told [I] can’t go to transplant. It’s so funny because I went and shaved my head. I was like, “I’m going to shave it all off before it happens.” And they’re like, “No, you can’t. You’re not ready for that yet.” I was disappointed, a little angry, [and] just bewildered. What’s happening now? Another gut punch.

Find answers to popular stem cell transplant questions and experiences »

Induction therapy

I got switched to Revlimid, Velcade, and Dex. I did four additional cycles. [When] it wasn’t working anymore, I was switched over to Kyprolis, Pomalyst and Dex, and I had [an] immediate response. That’s what really got me ready for the transplant.

Valarie T.
Expectation setting

Going into the transplant, I was told what I could expect. I used to follow The Myeloma Beacon. I started following Pat Killingsworth and listened to what he said. I got his book about stem cell transplants. I read the book and I’m like, “I’m going to make sure I do everything that they say to do.” 

Follow the advice of your doctors and nurses. They do this every single day. They can tell you how to prepare. I listened and followed some of the big names out there. These people know what’s going on and that helped me prepare for the transplant.

The week before the transplant, I found out my insurance was not going to cover [it] where I wanted to do it. That was something else that had to be worked out. Eventually, we got it taken care of but that was a very stressful time just trying to figure [it] out. What am I going to do if the insurance is not going to cover it here? What do I do?

Valarie T.
Dealing with insurance issues

I was working with the stem cell transplant navigator at the hospital. She was such a godsend because I didn’t know what to do. I did not need the stress. She was like, “Hey, this happened. We’re going to take care of it,” and she just knew the right things to do.

I had everything in place. My family was coming out to spend time with me. A couple of my friends had taken off work. They had taken vacation time to be there for me. So when I heard this, I’m like, “Whoa, everything’s in place. It can’t just not happen because it’s going to affect other things.”

She helped me get it all worked out. Have somebody working on your behalf. Don’t try to do it all by yourself. If you’re one of those people [who thinks] you don’t need help, you do need help. Someone to help you with paperwork, to make phone calls for you, to do that type of work for you. People want to do that so let them.

The stem cell transplant navigator was excellent. My other friend, Karen, was excellent [at] making phone calls and doing things. I didn’t have to stress a lot because they made sure that things were taken care of. They [took] the pressure off of me.

Don’t try to do it all by yourself. If you’re one of those people that think you don’t need help, you do need help. People want to do that so let them. When things come up, let them.

Valarie T.
Stem cell transplant process

It was a little scary at first. I was going into the unknown. I didn’t know what to expect. They told me, “On this day, you’ll go in. You’ll get the high-dose Melphalan. Make sure you chew ice chips. Then you’ll have a rest day and then you’ll get your stem cells back.”

A couple of weeks before, they give you shots that stimulate the stem cells. I had to give myself those shots in my stomach and that was a process because I never had to give myself shots before.

After four days of shots, I went to the facility to harvest the stem cells. They put this big catheter in your neck, which feels really, really weird. It was very painful for me to do the apheresis and get the circulating stem cells from the blood. That process was a little scary because you don’t know what to expect. You’re laying in bed hooked up to this machine and you see the blood going out of your body and being flushed back in.

I was very fortunate. I got all of the cells I needed in two days so I didn’t have to come back. They told me it could take four days to collect the cells.

Valarie T.

I didn’t go for the transplant right away. I waited a couple of weeks and something was going on with my schedule and I wasn’t able to go.

Then came the insurance issue. My cells were frozen for a couple of weeks. I [went] back to the facility and had to reinsert the Hickman port — very uncomfortable to go through that process.

I’m admitted to the hospital. They test for C. diff (clostridium difficile infection) and lo and behold, I’m positive for C. diff so there’s another component that you don’t expect. That means I’ve got to be isolated in addition to the transplant. Other precautions had to be taken as well.

I remember it was a Wednesday evening. It was a very long day. I get the high-dose Melphalan and I’m chewing on ice chips. Thursday was my rest day. Bright and early Friday morning, the nurse comes in, checks all my vitals and she’s like, “This is it. This is the big day.”

A couple of hours later, the other nurse came in with this little bag of cells and I’m like, “This is the life-sustaining things that I’m going to get back.” At that time, a couple of members of my family had come up. My friends had taken off work to be there for me, supporting me. They kept a chart to let me know what was going on outside of the hospital.

Valarie T.

I received my cells back. It was Friday morning [at] about 11:40, [I] celebrated my new birthday and the rest is just waiting to see what happens.

Recovering from the stem cell transplant

One of the most trying times was waiting for that engraftment period. I didn’t feel too bad the first couple of days. [On] the third day, I could start to feel something’s going on. The fourth day [was] okay.

On the fifth day, my head started to hurt. Every time I would run my fingers through my hair, it would just hurt tremendously. I’m like, “What the heck is going on?” Little did I know that was the beginning of the hair getting ready to fall out. And that was tough, even though I knew it was going to happen. It was still tough when it did happen.

Valarie T.

Like clockwork, on day five, all my numbers bottomed out. I was feeling horrible [and] had the worst diarrhea that you can imagine. I felt that I was going to die. I woke up that morning and I was like, “Oh my God, I could die from this.” At that time, I was alone. My visitors hadn’t come in yet and I was just sitting there like, “I could die. If I get an infection, I could die. There’s no way I can fight it off.”

There was another patient undergoing stem cell transplant [who] had been there a few days before I’d gotten there, caught an infection and didn’t make it. Just knowing that on top of everything else, I was a basket case.

But I had great doctors, great nurses [and] a great team of people [who] took care of me and pulled me through it. They would come in every day, check on me, do what they had to do, and say, “Hey, you got to keep positive. You will get through this.” And I believed them because they do this every day. Why would I doubt them?

Recovery was really hard. The thing that surprised me most was the overwhelming fatigue. I would get up, sit on the side of the bed and go, “Oh, I can’t do this today,” and lay back down for a little bit. Then realize, “Okay, you’ve got to get up. You can’t just lay here in the bed. That’s not going to be helpful to you,” so I managed to get up. Then it was like, “Okay, let’s get to the shower,” so I would manage to get a shower, but I [got] out of the shower and I [had] to lay back down again. I’m like, “What in the world is going on? I can’t even hold my arm up.” That went on for a pretty good while.

Valarie T. mom's party

I didn’t have to worry about cooking, cleaning, or anything like that. My friends were very good with making sure I was taken care of [so I could] take my time and get better. I made myself get out, walk to the mailbox, [and] walk around the block just to get some exercise. When I did that, I did feel better. There were times when it was 1:00 or 2:00 in the afternoon and I felt I needed a nap. I listened to my body.

Maintenance therapy post-SCT

We talked about what was going to happen after the transplant and we agreed on consolidation therapy. That was very popular at the time. Some doctors were doing it, some were [not]. We talked about doing consolidation for about two to three months after the stem cell transplant.

Consolidation therapy is just a continuation of the therapy you were on before you went for the transplant. You just do it a little bit longer to deepen the response to try and get rid of more of the disease burden.

Valarie T.

When you look at that myeloma iceberg, consolidation therapy chips away at that iceberg a little bit more. We talked about doing that for two to three cycles more and that eventually turned into a 12-month cycle.

I really didn’t fully understand that at first. “We talked about two to three months. What are you talking about?” But when they explained to me how we want to deepen the response, I’m like, “Oh, okay. I guess I can go through this a little bit longer.” In my mind, that’s going to give me a longer remission, help me live longer, [and] help me live as much as normal life as I possibly can. I fought it at first but when I saw the risk-benefit, why not?

Consolidation therapy

We talked about what’s next long before the end of 12 months because I [didn’t] want any surprises. We talked about just doing Pomalyst, going on a single regimen for maintenance.

[While] I was going through consolidation therapy, I did MRD testing. I did find out I was MRD negative, which I was really excited about. I understood what MRD negative meant so I [asked], “Do I still need to do maintenance?” Because we had talked about going on maintenance indefinitely.

Valarie T.
Side effects from Pomalyst

Once I completed the consolidation therapy, I went right into maintenance therapy. I didn’t have any problems with it [initially] but eventually, it did weaken my immune system to a greater magnitude to where my counts were always low.

I was doing monthly blood work. I had to do that in order to get Pomalyst. My counts were consistently low. I was having to get the Neupogen [and] Neulasta shots to build my ANC (absolute neutrophil count) up.

At that time, my hemoglobin was still borderline. I was still often fatigued. I had a conversation with my doctor about that and they were like, “Okay, maybe we can do a dose reduction.” We talked about that, what that meant and what it looked like. I did a dose reduction and that did help improve my numbers to where I was not as bad all of the time.

I stayed on that particular dose for a couple of years then the same thing started to happen. I was experiencing bone marrow suppression. It was really bad so we did another dose reduction. I told him what was going on, how I was feeling, [and] how it wasn’t improving. You could see it in my blood work. Every month, it was the same thing.

Valarie T.

We decided to do another dose reduction and found a happy spot where I’m comfortable. I can live freely, so to speak. I’m comfortable doing things without fear my counts are low. And this is before COVID. You have to go out in a mask and it’s like, “I don’t want to do this.” You [can’t] participate in events because you’re afraid. If I get this least little thing, I’m going to be sick and down for days. It relieved that. It made things better.

Testing for minimal residual disease (MRD)

MRD stands for minimal residual disease. It is the test to determine if they can detect any myeloma cells after transplant or induction therapy. It wasn’t something they did on a regular basis back [then]. When I had that test done, I was very happy to hear that I was MRD negative.

My doctor and I had talked. “After you finish consolidation therapy, we’re going to put you on a single agent Pomalyst as maintenance.” My question was, “What if I’m MRD negative? You just said I don’t have any traces. Why should I take this? Why should I want to continue with the maintenance again?” They explained to me [that] the goal is to get rid of as much myeloma as possible, chip away at as much of that iceberg as possible.

When I saw the benefits, I made that [decision]. It was ultimately up to me if I didn’t want to do maintenance. All I had to do was say, “No, I don’t want to do that.” The doctors would have been okay with that.

Valarie T.

That’s one thing I learned: shared decision-making. You have to have a say in it because ultimately, it’s your body, it’s your quality of life so make sure you have a say in what’s going on. Don’t just go along with it.

Receiving a second cancer diagnosis

I was doing well, trying to get back on track to my new normal and along came a breast cancer diagnosis. This was out of nowhere.

I was going for my yearly mammograms and always was told, “You have dense breasts. Just keep an eye out for things and we’ll see you back next year.” At this particular time, I went for my mammogram and got a callback. They [said] “We want you to come back. We need to do an ultrasound.” I didn’t think anything of it. I’m going to go back and they’ll do an ultrasound and tell me I’m good. That was not the case this time.

They picked up something on the screening mammogram [so] they pulled me back for a diagnostic mammogram and ultrasound. When they did the ultrasound, they did see a couple of things that were not on the previous year’s ultrasound so I was sent for a biopsy.

I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better.

Valarie T.

I was scared. At that point, I knew what biopsy meant. They’re looking for something. They don’t just send you for a biopsy. It was breast cancer. Here I am again, that whole gut kick. Again? Really? Where did this come from? What did I do to deserve this?

But I will say, having been on the myeloma journey and knowing a little bit more, it was a little easier to manage this. I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better than I did going into the multiple myeloma. That’s been an added step to my journey. I’d like to say [that] myeloma prepared me for the things that I went through with breast cancer.

Dealing with a second cancer diagnosis on top of myeloma treatment

With the breast cancer diagnosis, I was terribly scared. I’m going to have to get treatment for this. Is that going to trigger something in the myeloma? That brought about this fear. Am I safe to do this?

The breast cancer diagnosis was very early stage — it was stage 1A. There was no lymph node involvement but the location of the tumors [meant] I [had] to have a mastectomy. That is a whole ’nother beast. The blood cancer was almost like an invisible cancer. It was something that was going on within your body.

With breast cancer, it was a lot different. It was harder. Having to have [my] breast removed was very difficult for me to accept in the beginning. This was just too much. I can’t go through this. I just can’t do this. It’s just the thought of amputation. I was very fearful.

Valarie T.

Even though I was prepared as a patient, I was still very fearful because I didn’t know what the treatment would bring. I didn’t know [what] the side effects would be. Again, I tried to be positive about things and look for the silver lining.

My breast cancer was triple negative. There’s no pill that I can take to suppress anything. Again, I was very fearful. What if I go through all this — I have this chemo and I have my breast removed — what if it’s still there? What if it comes back because it’s triple negative and it’s not as easy to treat? I was dealing with a lot of fear in that instance as well, just like I was with the myeloma.

What helped me was I just sat there in the fear. I acknowledged that fear. I was thinking, Okay, you’ve gotten through myeloma. You can get through this, too. It’s very early stage. I was in a good position, if that makes sense. I don’t [think you’re] ever in a good position with any cancer, but I was in a good position where I wasn’t too concerned.

My doctor assured me early on. “We can take care of it. This will not take you out, Valarie.” That was very reassuring to hear. The oncologist said that the surgeon said the very same thing. Very supportive and [guided] me through that process as well.

Valarie T.

How culture influences health care

There are so many things that vary from culture to culture. A lot of times, cultural beliefs prevent people from moving forward with a certain treatment. Not just stem cell transplants, but certain treatments. Receiving blood — certain cultures just don’t do that. Those things have to be acknowledged.

You have to understand someone’s culture in order to understand why they would make certain decisions. Culture is a big influence on decision-making in many instances.

Dealing with the healthcare system as a black woman in America

Being a myeloma coach, I get to talk to myeloma patients, many [of] who have been newly diagnosed and [have] been on the journey for a while. I get to hear a lot of what they have been through or how many times they had to go to the doctor to get a proper diagnosis.

Valarie T.

I realize that I’m very fortunate. My primary care knew the tests to run, picked up on the high protein, and sent me to see a hematologist. I know that is not always the case. People may have to go to the doctor two or three times before they even are heard to say, “Hey, this is what’s going on.”

I talked to many people who, when they get to the doctor, find out that they’re in kidney failure. On top of having the disease, it’s the shock of how you are told that you have the disease. Those are the types of things patients deal with.

I was talking to this lady. She went to the doctor [and] finally got the diagnosis, but they wanted her to wait to start treatment. They didn’t want to start treatment right away. Why would they want you to wait? That doesn’t make sense. I see that that doesn’t make sense, but as a patient who doesn’t know how things are supposed to work, that may seem normal.

I was told about [the] stem cell transplant early on in the process. There are patients [who] are not told about that. They’re just told, “We’re going to utilize this treatment and if this doesn’t work, then we’ll go to something else.” This was before we had so many novel therapies so it’s not like you had a lot to choose from. It was just assumed you don’t want a stem cell transplant, you may not be able to get to the facility, or you may not have the support to go through a transplant. It’s just varying things that patients have to deal with when it comes to health inequities.

As a doctor, you have to talk to your patient and find out where there is hesitancy. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it.

Valarie T.

Sometimes it’s not discussed simply because it’s not talked about. And that’s very unfortunate because of the bias. You’re making that assumption just because I live in a certain zip code that maybe I shouldn’t do this, I wouldn’t want to do this or I don’t have the ability?

A lot of it is just access to care. We [have] to make sure that we’re getting the patients to the right place at the right time. We have to break down those barriers.

I’m not a doctor, but as a doctor, you have to talk to your patient and find out where there is hesitancy. Let’s say you talk to someone about a stem cell transplant and they decide they don’t want to do it. You have to find out why. Is it that they don’t want to do it or [do] they have other things creating barriers [that don’t allow] them to do it?

Child care. If you have children, you can’t just say, “Hey, I’m going to shut down for two weeks to be in the hospital and then I’ve got 100 days of recoup time.” Who’s going to take care of things? Who’s going to take care of the house, particularly if it’s not a two-person home? Getting back and forth to the clinic [for] follow-up visits. All of those things need to be taken into consideration. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it. There may be underlying reasons.

People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow.

Valarie T.
Importance of shared treatment decision-making

It’s a game changer, particularly for patients who are accustomed to just going along with what the doctors say. In the African-American community, that’s kind of the norm. The doctor knows best. He knows more than you do about the disease. You need to follow what you’ve been told. That’s just instilled in a lot of us. But that’s not the case. It doesn’t have to be like that.

People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow. You don’t have to follow what the doctor is saying blindly because you don’t think you can say anything. You can say something and you should. Because again, it’s your life. You have to live with the side effects. You have to live with the treatment schedule so you want to have as much say as possible in that.

Valarie T.

All of those feelings that I was still in, I just sat with them. I didn’t try to push them away.

Words of advice

It was my faith that really pulled me through and knowing I’m going to get through this. I believe that I’m going to get through this. I’m trusting the process, as they say. Just trust the process.

You have to acknowledge those feelings that you have because if you don’t acknowledge them, they would just eat away at you. Tell somebody. I told my friend, “I felt like I was going to die this morning. I really felt that. I didn’t know what was going to happen, what could happen.” And that was very helpful when I let that out, when I released that and said something.

You can’t ignore your feelings because they are not going to go anywhere. They’re going to be there. They want to be acknowledged. I acknowledged every thought that came. I’m scared. I might die. It was just getting it out there and releasing it. Having that release was very helpful in my situation.

Find something that’s going to give you hope. Very early on with the myeloma, I got connected with others [who] were on the journey. Get connected with others that have been on the journey.

About six months into my diagnosis, I met a 26-year survivor and that just brought me so much joy. I was like, “26 years? You lived? I can do that, too! It’s possible for me, too.” Meeting that individual gave me so much hope.

Finding power through the words of other patients »

Valarie T.

Don’t think you’re alone in this. You’re not alone. There are so many people dealing with a lot of the same things that you’re dealing with. Reach out to those people. Get connected. Whether it’s through a support group or a group at your church, get connected.

One thing that you don’t want to do is shut yourself off from people. Don’t shut yourself off because that’s not going to do you any good.

Make your needs known. People don’t know what you need. They can speculate. “Oh, she’s going through cancer. She may need this,” or “Oh, she just got out of the hospital. She may need this,” but don’t make people guess. Let it be known because people want to help. They’re willing to help but a lot of times, they just don’t know what to do so you got to tell them.

Valarie T.

Get educated about your disease whether it’s myeloma, breast cancer or any other kind of cancer. Find out about the disease. Understand what it is. Don’t just listen to what people tell you. I’m not saying you have to be this research advocate. Knowledge is power.

When you get that knowledge, do something with it. Don’t just sit on it. I think that’s where we make the mistake a lot of times. We have all this knowledge and then we don’t do anything with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.

Look for the positive. I try to be positive about everything. [There’s] a silver lining somewhere. Find that silver lining.

Listen to your body. Don’t think that you have to get back to life. You have to heal. You have to listen to your body and take the time that you need to get well.

Sometimes, people are afraid to speak up because of embarrassment. “I’ll just deal with it.” Don’t suffer through. There are things that can help you get through so take advantage of those things. Utilize those things. Communicate with your doctor. I know a lot of people are not comfortable talking to their doctors. Talk to the physician’s assistant. Talk with the nurse practitioner. That’s what they’re there for.

You [have] to speak up. If patients are heard or feel they are heard, that would change the whole dynamic. A lot of people, if they feel they’re not heard, they’re going to stop talking. It’s not going to benefit them.

Listening and understanding — listening for understanding and not just listening to say, “Well, I heard what they say. It still doesn’t make sense to me.” It may not make sense to you, but it’s still acknowledging what the patient said, what’s been said.

Find others on the journey. Connect with others. Educate yourself. Knowledge is power.

Don’t think you’re alone in this. You’re not alone.


Valarie T. warrior
Thank you for sharing your story, Valarie!

Inspired by Valarie's story?

Share your story, too!


Multiple Myeloma Stories

Clay

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Melissa

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
...

Elise D.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
Marti P multiple myeloma

Marti P.



Diagnosis: Multiple myeloma, stage 3



1st Symptoms: Dizziness, confusion, fatigue, vomiting, hives



Treatment: Chemotherapy (Bortezomib/Velcade), Daratumumab/ Darzalex, Lenalidomide, Revlimid) and stem cell transplant
...
Ray H. feature

Ray H.



1st signs: Hemorrhoids, low red blood cell count
Treatment: Immunotherapy, Chemotherapy, Stem Cell Transplant
...
Valarie T. feature profile

Valarie T.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...

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Cancers Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Primary Mediastinal B-Cell Lymphoma (PMBCL)

Stephanie’s Story: 5 Years Cancer-Free

Stephanie’s Story:
5 Years Cancer-Free

Lessons Learned & Top 10 Tips for Other Cancer Patients

Stephanie Chuang feature

It’s been 5 years since Stephanie Chuang, founder of The Patient Story, was told she was NED (no evidence of disease). As part of Blood Cancer Awareness Month, she celebrates by putting together a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.

She hopes her documented ups and downs will resonate with some of you out there and be helpful to you.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Looking back

December 10, 2016. Fun times on a date with my family in San Francisco. These would be the last non-cancer memories captured on my phone. Just three days later, I would hear, “I’m sorry you have lymphoma,” and be thrust into an out-of-body experience — stuck in the hospital while doctors ran tests and scans for an entire week to figure out what was wrong with me.

Alien-like images from dozens of tests and scans. This was the hardest period — not knowing what the diagnosis was and just trying to figure it out. There were tests upon tests in under a week. I was poked and prodded constantly, including an excisional biopsy (where I was fully under so they could remove and test the lymph node) to the bone marrow biopsy (that only required local anesthesia before the “drilling” began).

Now, no evidence of disease for five years and, for that, I am really grateful. This is a walk-through of all the high and low lights that I’ve gone through with the main goal of sharing the top tips I’ve learned throughout this process and throughout the years. I hope it will resonate with you and help you in a meaningful way.

A lot of this, I filed away and forgot that it happened. And that’s married with a lot of things that have happened in the recent years of survivorship. Feelings of anxiety, stress, and a lot of emotion. Anxiety from scares of recurrences and a lot of tears. Working in a space where it can get pretty somber and where we’ve lost some pretty incredible people.

However, the main message I hope you take away is, you are not alone. After speaking with hundreds of other people impacted by a cancer diagnosis and having in-depth conversations, we really do share a lot of the same thoughts, feelings, and emotions. You are not alone. We are definitely not alone.

Tip #1: Emergency Department may lead you to faster care

If you already have some test results — at least a partial diagnosis or a start of one — it may be faster to get care if you go to the hospital emergency department rather than try and schedule an oncology appointment. That’s what I did and it worked for me. It was advice from our friend David, a doctor at UC San Francisco, where I went for my cancer care.

Five years later, I can admit: my husband convinced me at one point to sneak out to go all the way across the street — but it was just the other side of UCSF.

What I found is that actions first can lead to emotions later and joy can follow.

Tip #2: Break the monotony

Find moments to break up the monotony of treatment, the tests, and everything that feels so sterile. [I’m] not encouraging you to break rules per se but to live a little.

What I found is actions first can lead to emotions later and joy can follow. It’s not easy, but it can happen.

Tip #3: Seek out the humor

Seek out the humor in situations, if you can. Of course, there are some [days] where it will seem next to impossible. But if you can, it really can help.

For instance, the nurses and physician’s assistants who were taking my temperature [during my] first week of hospitalization, it was happening all the time and they were announcing the number so often, I joked that it sounded like a radio jingle.

For me, my family really was everything.

Tip #4: Draw your boundaries

Draw your boundaries and pick your people. You don’t owe anyone a call. Let people know about your diagnosis if you want them in your corner and you know they’re going to give you the kind of support you want and need.

Though I have to say, my people started a support campaign and it was incredible. Love poured in from my closest inner circles to people I may have only met a couple of times. It was truly uplifting.

But for me, my family really was everything — from home-cooked food at every meal to helping me with blood thinner injections twice a day, every day. And those really added up.

UCSF doctors

Tip #5: You are a big part of decision-making during treatment

Don’t forget, you are a big part of treatment decision-making and with that also comes the quality of life decisions.

I was two months from getting married when I was diagnosed. The cancer was very aggressive — diffuse large B-cell lymphoma with double expressor, they said. My hematologist oncologist and my family all wanted me to go into treatment right away. I didn’t want to. I had read about how one of my chemo drugs, Cyclophosphamide or Cytoxan, was a high-dose alkylating agent, which meant it could cause or contribute to infertility. That scared me.

I went ahead and froze embryos with my then-fiancé. Again, people may not understand, but it was so important to me and I knew that.

First up: ovarian stimulation with lots of shots. I got a lot of help with some of those shots. Then came the egg retrieval surgery and then embryo freezing. They did try to preserve my fertility during chemo by giving me a shot of Lupron beforehand. (Spoiler alert: My husband and I were blessed with two children in the last few years without dipping into our reserve. And for that, I am so, so grateful.)

Next up was the first cycle of chemoimmunotherapy. Always really unsettling to see the nurses put on hazmat suits just to touch the bags — and that’s bags of stuff that would be going inside of me.

By the end of treatment, more than 600 hours of infusion. The drugs killed both the bad and the good cells, and that’s where side effects came in.

You are a big part of treatment decision-making and with that also come quality of life decisions.

Tip #6: Don’t chase the side effects, especially nausea

By the time you feel it, it’s too late. And trying to get rid of nausea with the pills after can be really, really hard.

One of the worst side effects and most well-known is hair loss. Many other patients I spoke with who also lost their hair due to chemo shared the same experience as me. It started to fall after the second cycle and this does depend on the treatment you get.

The worst feeling was seeing clumps of hair on my pillow. That’s when I decided to do the first step of getting a haircut. The shaved side that looked like Cassie, the singer. It’s a style I wouldn’t have ever gotten on my own.

I never wore the real human hair wig I got that cost a ton. It was too itchy for me. I liked the hair that was attached to the baseball cap because the top was so much more comfortable; that material actually felt okay.

The worst feeling was seeing clumps of hair on my pillow.

Tip #7: There will be ups & downs and that is okay

This experience is not going to be a straight line and that is okay. Anxiety is natural to have. I’ve struggled to push it away, but I’ve had some scares of the cancer coming back.

I pushed for extra scans a few years after treatment. My doctor did not advise it, but she also gave me room to decide and I appreciated that.

This experience is not going to be a straight line and that is okay.

Tip #8: Wear loose clothing without metal

For those of you headed to a scan, wear loose clothing without any metal. I didn’t have to change into a gown because I wore loose clothes and sweatpants. No buckles, no metal, no zippers. If you’re a woman, you use bras usually — just don’t have any wiring. That way, you don’t have to change. Again, loose clothing in case you need IV so that they have access.

Tip #9: Earlier appointments may help you get results faster

Schedule your appointments earlier in the day. It may help reduce the wait time, depending on where you go.

What I found in the past, at least at UCSF, getting the morning appointment sometimes really does let you have these results later that day, which is amazing. As you know, “scanxiety” is a huge part of not wanting to wait. Just give me something to go on so I can have a plan if I need to have one.

Tip #10: Speak up for yourself!

We are the only ones who can and will. For me, there’s never been a day that passed without feeling around my neck and my chest for swollen lymph nodes because that’s how I got diagnosed the first time.

I don’t want to waste my doctor’s time. I’ve thought a lot about that. Oh, she’s too busy. She’s got more important cases than me. We feel that way and we think that. But there was enough for me to feel like something wasn’t right so I worked up the courage to see her in person, where she would feel around my lymph nodes and check me in person.

At the end of the day, we want doctors who will listen to our concerns. The good ones do listen. And when it comes to treatment options, for the most part, the good ones also encourage second opinions.

Life with and after cancer is not easy, it’s not pretty, and it’s definitely more brutal for some than for others. But there is a lot of hope.

Give yourself grace

I try to remind myself all the time and I find it’s pretty hard to do, but that is to give yourself grace and don’t “should” all over yourself. It’s something I really do need to internalize.

I’ve struggled a lot throughout the work I do for The Patient Story to fight survivor’s guilt. Why do I get to live when others don’t or didn’t? It’s especially hard after becoming friends with incredible patients and advocates, and unbearable when we lose them.

I’m not going to say who, but there’s someone I got to know — an incredible woman — and she’s been letting me know in her words, “It’s getting pretty bad.” She said, “I’m going down fighting.” When I read her message, it really stung because it’s happened multiple times in the last few years that I’ve been working on this and it just gets hard.

I’m still a work in progress, but I try to remind myself to celebrate each win that we get to amplify the voices of these amazing people.

Ultimately, I hope you take my five years after treatment as a win not just for me but for you, too. [I’m] not saying my experience will be yours, but I am glad you found me and our community, and just know it is a lot more hopeful than all those outdated statistics we find everywhere.

Life with and after cancer is not easy, it’s not pretty, and it’s definitely more brutal for some than for others. But there is a lot of hope in how we can live in a meaningful way despite a diagnosis.

I celebrate these five years not just as chemo and cancer free but with gratitude because I’m also celebrating the fifth anniversary of our marriage. We eloped to keep our original wedding date so cancer couldn’t control that — it was between my second and third cycles of chemo. Then we had our big celebration after I was finally done with those hundreds of hours of treatment. I’ll never forget all the love that day.

I hope you never forget that throughout whatever experience — in cancer and in life in general — to give yourself grace.


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Medical Experts

Alex Oshmyansky | Cost Plus Drugs

Alex Oshmyansky | Cost Plus Drugs

Alex Oshmyanksy feature

Alex Oshmyansky, MD, PhD, is the Founder and CEO of the Mark Cuban Cost Plus Drug Company. He shares the catalyst that made him pivot from being a practicing physician to starting a pharmaceutical company.

In this conversation, he talks about the exorbitant costs of medicines along with Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, and the complicated and convoluted path from pharma to patient, and what his company is doing to offer drugs at the best prices possible.

The interview has been edited only for clarity.



Introduction

Alex Oshmyansky, MD, PhD: [I’m] a board-certified diagnostic radiologist. I have a PhD in applied mathematics. When I was a kid, I was going to be a string theorist, so a high-energy particle physicist. I was being fast-tracked into that. With all the wisdom of a teenager, I decided that wasn’t going to be impactful enough in the real world so [I] made a hard shift [in] my last year of college and decided to major in biochemistry instead.

I graduated at 18, went on to medical school and completed an MD-PhD program. [I] went on to do my internship in general surgery at Brigham and Women’s Hospital and then radiology residency and pediatric radiology fellowship at Johns Hopkins.

At Hopkins, I was working with a pulmonologist on a research project. One day, he came in infuriated because two of his patients died over the same weekend. They both needed a drug called Bosentan, which treats primary pulmonary artery hypertension — hypertension specifically of the big blood vessel that comes out of the heart and goes to the lungs — and they both needed it urgently.

holding dollar bills

At the time, the medication cost $10,000 for a month’s supply, despite the fact that it was long off-patent [and] was a generic product at that point. They were meant to apply to a patient assistance program set up as a nonprofit by the manufacturer who made the product, got caught in the red tape and both of them tragically died [on] the same weekend.

I had been angry about these topics for some time and you think that’d be enough to set me off. But what really became the straw that broke the camel’s back was Martin Shkreli.

In 2015, he was a social media villain-of-the-day type [of] guy. He was a hedge fund manager who took over a pharmaceutical company and increased the price of a drug called Daraprim — generic Pyrimethamine, primarily used by indigent patients or immunocompromised — by over 10,000%, hundreds of dollars a tablet.

I got very mad and some of my friends, who are also doctors, [also] did. We decided very naively, “Let’s set up a nonprofit pharmaceutical company that will make drugs [and] sell them at cost.” While working as a doctor, [I] went out for the better part of three or four years trying to raise funding for the nonprofit and did not succeed. Failed spectacularly — raised $0 beyond what I put in myself.

Eventually, [I] got talked into converting it to a for-profit public benefit corporation — but with a registered public mission with the state. [I] eventually sent Mark Cuban a cold email. I sent it on a whim and surprise, surprise! He reads all his emails. And the rest, as they say, is history.

Stephanie, The Patient Story: What’s really fascinating is Martin Shkreli became the symbol but what a lot of people didn’t realize was that he wasn’t the exception and he became the villain. There were so many other things happening.

Alex, Cost Plus Drugs: [He] seems to have a histrionic personality [and] likes attention. He’s really quite a small fish in a big pond of people who are much worse actors than he was. He took much of the blame because he seemed to enjoy it. But he was not the biggest actor in this space by far.

The path is incredibly complicated. It’s very convoluted and that’s by design.

Alex Oshmyansky

The path from pharma to pharmacy

Stephanie, The Patient Story: Which I think would surprise, still to this day, so many people. This is where there’s a lot of misunderstanding. I didn’t learn about the term PBM (pharmacy benefit manager) until fairly recently. There is this path that goes from the pharmaceutical companies — with the research and development of these drugs — to the pharmacies where you and I go to pick up the drugs and the prescriptions. Could you summarize what happens? What is in this path here?

Alex, Cost Plus Drugs: The path is incredibly complicated. It’s very convoluted and that’s by design. There’s a layer of financial engineering that takes place between you and actually purchasing the product.

Pharmacy benefit managers are firms [that] are outsourced to by insurance companies to decide which products are covered by insurance. They manage all the payments. Back in the 1980s, before computers were as widespread, they were initially there to literally process payments. They would get paid to do the paperwork when a prescription insurance claim was submitted.

What they (pharmacy benefit managers) realized was… the best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.

Alex Oshmyansky

What they realized over time was, since we’re paying for the drugs anyway, we can collectively bargain for the drugs. They turned into negotiators for drug prices. There’s a big to-do recently about Medicare negotiating for drug prices, which is a great thing, but we technically already have professional negotiators doing it. Those are the pharmacy benefit managers.

Eventually, what they realized was, The way we’re getting paid is we take a percentage of the savings. That’s how they structure their deals. The best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.

Imagine you wanted to buy a [car] but you hate negotiating at the car lot. It’s miserable. The guys are jerks. “Oh, I have to go to the back and talk to my manager.” Everybody hates that. Somebody comes up to you and [says], “Hey, I will do the negotiating for you and in exchange, I get 10% or 20%,” or whatever the amount of money they save you. You’re like, “You know what? That’s worth it to me. I hate negotiating.”

The negotiator comes back and says, “Hey, amazing news. I got you a great deal. I got you 90% off of your [car].” “Oh, my God, That’s amazing. How did you do that?” “I’m really, really good at negotiating.” Come to find out the sticker price on the [car] was $1,000,000 and you’re paying $100,000 for your [car] plus the fee from the negotiator, which is another $90,000, so you’re paying $200,000 all of a sudden for your [car]. That sounds like a crazy, over-the-top example, but it really happens.

That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer.

Alex Oshmyansky

The example drug that I use all the time — because it’s the most extreme edge case — is a product we offer called Imatinib, which is a chemotherapy product. It’s a tyrosine kinase inhibitor for chronic myelogenous leukemia and you need to be on it for many, many years. The list price, the so-called average wholesale price, is $10,000 for a month’s supply.

Now, if you get it through your insurance and you have a high deductible plan, it’ll be “adjudicated” at between $2,000 and $3,200 as the negotiated discount price plus the margin for the PBM. Meanwhile, if you get it from the Mark Cuban Cost Plus Drug Company, it’s $39 for a month’s supply. That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer. It’s the intermediaries and the pharmaceutical supply chain taking a percentage of the rebate. It’s just one of the many, many scams [that] has evolved over the past 30 years to take advantage of the sick and vulnerable and it’s absolutely morally repugnant.

Stephanie, The Patient Story: We know about pharma companies and the R&D that happens there. There’s a price set. Can you describe the path?

Alex, Cost Plus Drugs: Basically, the wholesalers do take a markup. On specific products, it can be a very, very high markup. Our initial product, Albendazole, an antiparasitic drug, is available from us for $30 for two pills and a complete course of treatment tends to be two pills. But, as far as we could tell, about $70 a pill from the pharmaceutical wholesalers if you purchase it directly from them.

There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles.

Alex Oshmyansky

There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles once you purchase from a wholesaler. That sounds like a lot and it is. It’s perhaps a bit too much but at least they serve a function. They send the products around the country.

The really egregious part of the payment processing comes from the pharmacy benefit managers who administer the payments to pharmacies on behalf of insurance companies. They also claw back payments from the pharmacy so the money goes both ways. They take money from the insurance companies, who in turn partially own them. They set up subsidiary companies called rebate aggregators in Switzerland that have more fees. There’s this spider web of interacting actors.

This is Adam Fein’s from Drug Channels. This is his famous slide, which is a simplified version of the way money flows in the pharmaceutical industry.

Adam Fein Drug Channels slide

Stephanie, The Patient Story: This is simplified?

Alex, Cost Plus Drugs: Yeah, this is reductive. It’s an absolute mess, essentially.

The best way I can describe it is it’s basically a pile of spaghetti with lines going [in] every direction from all the various different actors — PSAOs (Pharmacy Services Administrative Organizations), GPOs (Group Purchasing Organizations), the insurance companies, the pharmacy benefit managers, patients — about the way money winds up flowing in the pharmaceutical industry.

The way I think about it is this is a feature, not a bug. When I was coming out of my PhD, I was recruited to be a quantitative analyst at a hedge fund. Back in 2007, I was interviewing for these jobs and they did technical interviews to see if you knew how to do [the] math. They showed me these incredibly complicated financial instruments — credit default swaps, collateralized debt obligations — and I remember saying out loud at one of the interviews, “Oh, so this is a scam.”

You start with bad debt. You add a layer of indecipherable, stochastic calculus on top of it and then magically, it’s good debt. No one can understand what’s happening so it lets you get away with the scam. Basically, the same thing is happening here. The system is so artificially complicated that it permits theft in the service of it.

drug pricing

Understanding drug pricing

Stephanie, The Patient Story: Okay, I know it’s very convoluted. Let’s just give an example for a $10 pill. Let’s say that’s what the pharmaceutical company has set the price on. Can you give an example of “roughly” what that could look like by the time it gets to us?

Alex, Cost Plus Drugs: On average, it’ll be about probably $20 from the wholesaler. Let’s say $10 just to keep the numbers round — it’s usually maybe $6 to $8. Let’s say at the pharmacy, it’s about $30. Then the price manipulation starts to happen and that’ll be the actual price at the end of the day.

There’ll be a number of artificial prices put on it depending on if it’s a brand name drug [or] a generic drug. Let’s say it’s a generic drug for the sake of argument. Generally, a generic drug is priced at a pharmacy benefit manager at about an 85% discount. They will say that the price of the drug is, in this case, $200 so that’ll be the price you see if you try to pay cash at a pharmacy without using a special program of some kind. It’ll be artificially inflated to $200 so they can negotiate it back down to $30 and then charge a little bit more for the service of negotiating.

Stephanie, The Patient Story: And there’s a rebate also involved?

Alex, Cost Plus Drugs: The manufacturer will have to pay a rebate to the PBM, who in turn takes a cut and forwards part of the rebate to the insurance company that’s paying the ultimate bill. But the insurance company had to pay the whole thing first. [Plus] the wholesaler, somewhere in the mix of all of this, holds the money for six months and makes money off of the interest. It’s a whole morass.

woman at the pharmacy

Finding the best price for your prescription

Stephanie, The Patient Story: The impact, of course, is not just these incredibly high, exorbitant costs to patients who, if they don’t have good insurance plans, are then left with the short end of the stick. They’re screwed over, honestly. Talking to Dr. Rajkumar, there’s all this confusion in terms of going to different pharmacies. Can you talk about that a little bit, too, and what Cost Plus Drugs is doing to try and help?

Alex, Cost Plus Drugs: As a general rule, the worst prices will be at your big national chain pharmacies. Usually, the best prices you get at retail tend to be from the supermarket chains because they’re hoping that the business actually drives traffic into the other parts of buying.

Obviously, I’m biased but generally, for most products, we tend to have the best price or at least close to it. We are a registered pharmaceutical wholesaler. We buy the products directly from the manufacturers at our flat 15% markup on top of it, a $3 dispense fee, and $5 shipping and handling at CostPlusDrugs.com. You can get any of about 1,000 generic products from our site as of today and we’ll be adding on brand-name products in the near future.

Always check with the manufacturer’s website. Discount card programs might be an opportunity.

Alex Oshmyansky

Stephanie, The Patient Story: What can people do? What about the people who don’t have their drugs covered yet by Cost Plus? I know you’re working on that. What can they do at home?

Alex, Cost Plus Drugs: There are a number of different resources. Always check with the manufacturer’s website. There may be a co-payment assistance card or other cash assistance program. They might not be the most convenient things in the world but, often, you can get the cash out of pocket. You have to pay down significantly that way.

Discount card programs, like GoodRx or SingleCare, might be an opportunity. They tend to be more generic-focused as opposed to brand-name products. I think those would be the two easiest things if you need a brand-name, on-patent medication.

Generally, the easiest way to know is if it has a really easy name to pronounce, it tends to be a brand-name medicine. Google the name of the medicine, check the manufacturer’s webpage, and see if there’s a program available to help you afford it.

If it’s a generic one, check CostPlusDrugs.com. But if we don’t have it, I would look for a discount card program; maybe there’s a discount available there. You can even ask your pharmacy, “Can I pay cash?” and see. Oftentimes, the discount cards are unnecessary and they’ll just sell you the drug cheaply.

shaking hands

The road ahead

Stephanie, The Patient Story: Thank you for the work that you’re doing. Obviously, people are seeing the benefits. How much work is there left to be done?

Alex, Cost Plus Drugs: Aside from the big three PBMs, there’s a host of small ones that are trying to do the right thing, be more transparent, [and] go back to the old model where they just take a small fee for doing the paperwork and electronic transmissions. And they see us as a real value add to differentiate themselves from the big PBMs who aren’t as open to working with us at this point.

The key is we work with them on our terms, which means no rebates [and] no spread pricing. The price you see on our webpage is the price everybody pays — [whether you’re] a single indigent patient on the street or [you have] a Blue Cross Blue Shield plan. Everybody pays the same amount.

Hoping long-term to change the status quo to something more sustainable… taking the pharmaceutical marketplace and making it like any other marketplace.

Alex Oshmyansky

Stephanie, The Patient Story: Between the brand name and the generic, has it been much harder with one than the other?

Alex, Cost Plus Drugs: The generic companies, it’s been easier to get ahold of those products just because there [are] more of them. There’s more competition and more people looking at ways to get their products across

The brand-name companies [are] not necessarily beholden to the PBMs but it’s a big risk to them to go outside of the PBM structure, which is not great. They’re not thrilled with it because, from their perspective, they do all the R&D, they take all the legal risks, [and] they take all the bad publicity from the public when people complain about high drug costs. And they’re like, Why are these companies getting a third of the revenue from our products? It’s insane.

At the same time, the status quo works for them. It’s a bit of a risk going with us. But I think in our conversations behind the scenes, they’re willing to take that risk at this point. They’re kind of sick of the status quo as well. We’ll be bringing them on in the near future.

Stephanie, The Patient Story: What is the next big vision of what this landscape will be like for people?

Alex, Cost Plus Drugs: Adding more and more products, brand-name products on a very tactical level. Beginning to work with insurance companies over the course of the next year — on our terms, of course.

Hoping long-term to change the status quo to something more sustainable based on taking the pharmaceutical marketplace and making it like any other marketplace — where you can see what the prices are and make rational, informed decisions as a patient and as a consumer based on real prices instead of make-believe numbers.


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ABVD Bone marrow transplant Cancers Chemotherapy Classical Hodgkin Lymphoma ICE Neulasta Radiation Therapy Relapsed and Refractory

Manda’s Stage 2B Relapsed Hodgkin’s Lymphoma Story

Manda’s Stage 2B Relapsed Hodgkin’s Lymphoma Story

Manda M. profile

Manda was diagnosed with stage 2B Hodgkin’s Lymphoma at 19, which relapsed after eight years.

She shares what it was like being a young adult with cancer and the importance of knowing your fertility preservation options, no matter your age.

  • Name: Manda M.
  • Diagnosis:
    • Hodgkin’s Lymphoma
  • Staging: 2B
  • Symptoms:
    • Loss of menstrual cycles
    • Iron deficiency
    • Itching
    • Night sweats
    • Tiredness
    • Night terrors
    • Trouble breathing
    • Difficulty concentrating
    • Enlarged lymph nodes
  • Treatment:
    • ABVD chemotherapy
    • Radiation
  • Relapse Symptoms:
    • Swelling
    • Night sweats
    • Night terrors
    • Trouble breathing
    • Bloating
    • Weight gain
    • Difficulty concentrating
  • Treatment:
    • ICE chemotherapy
    • Autologous bone marrow transplant

“I wish I would have asked about fertility, honestly… I could have frozen my eggs or I could have prepared for what’s next.”

Manda M. timeline 1
Manda M. timeline 2

Thank you to Seagen for its support of our patient story series! The Patient Story retains full editorial control of our content. The interview has been edited only for clarity.


Table of Contents
  1. Pre-diagnosis
  2. Initial symptoms
  3. What was going through your head?
  4. Diagnosis
  5. Treatment
  6. Getting diagnosed with hypothyroidism after radiation
  7. Being a young adult with cancer
  8. Importance of knowing your fertility preservation options
  9. Relapse
  10. Treatment
  11. No evidence of disease
  12. Fertility preservation & family planning
  13. Words of advice

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Manda M. and kids go down slide

Pre-diagnosis

Tell us about yourself

I am 39 years old. I currently work in strategy and business development. I have two children and a husband.

I grew up in western North Carolina. I stayed in North Carolina [and] live here still. As far as hobbies go, I like to be outdoors. I play with my kids and just generally like to hang out with my family.

My son, he’s six. He’s very empathetic. He understands emotions so he can tell when I’m not happy and he likes to give me a hug when he sees that.

My daughter, she’s just goofy. She does goofy things and she tries to make everybody laugh.

Both of my kids are very independent. They like to do things themselves and they get upset when they can’t do [them]. They’re just really good kids. I think they’re just exactly like they should be. When they get on my nerves, I’m like, You’re my miracle children. I remind myself, You willingly had these children.

“I knew something was wrong because I just didn’t feel quite right.”

Initial symptoms

It started back when I was ending high school and the summer after that. I was having a lot of interesting symptoms in terms of itching and my menstrual cycles. I told my mom and she started to look into different doctors that I could go see.

That progressed into a little bit more intense itching. Then I started to have trouble sleeping. I had already started college, into my sophomore year. That’s when the intense symptoms started to happen.

I went to the dermatologist first because it was itching and it seemed like a logical thing to do. Then I started to feel like, “Maybe I’m allergic to something,” and so my PCP sent me to an allergist. They tested me for a lot of things and decided that I was allergic to a couple of different things so [they] started giving me allergy shots. Then I just kept seeing individual specialists for individual things.

“My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.”

What was going through your head?

I knew something was wrong because I just didn’t feel quite right, but I had started college and so things had changed from a lifestyle perspective. Maybe I wasn’t eating as well, I wasn’t exercising as much, and maybe I was stressed out. I just thought, Maybe it’s just the new normal.

But then I would go to the doctor and just be like, “It’s still not fixed.” My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.

Manda M. with Levi May 2016
Finding swollen lymph nodes 

I came home from school one break during my freshman year and my dad was like, “Why is your neck so big?”

I don’t think anybody thought lymph nodes because he was just like, “What are you doing?” I think you just think college. She must be getting into stuff she’s not supposed to be getting into and so that’s where it left off. I didn’t think of it then. It’s all hindsight.

Biopsy scheduled

I went to the ENT in Claremont, North Carolina, where I grew up and my parents specifically said, “Can we get a surgeon in Chapel Hill?” Because that’s where I was going to school. It took a little bit to make that all happen.

Did you think that cancer was a possibility?

No, that hadn’t even crossed my mind, actually. I thought maybe I just had mono or some infection that just had gone crazy.

Lymph node biopsy

I can’t remember exactly, but I know it was outpatient. It was just at the surgeon’s office. I didn’t go to the hospital or anything. I don’t think there was a complete incision. I think he just inserted something in there.

‘He’s in with a patient, but I can get ahold of them for you. You just stay on the line.’ That would have been a red flag because usually, they don’t drop everything.

Diagnosis

How did you learn that there was something serious going on?

A week had gone by and I haven’t heard from the doctor. My parents were constantly asking me. Finally, my dad was like, “We’re coming up and we’re going to figure out what the answer is.” They came up to Chapel Hill and called the surgeon’s office.

My dad was on the phone. My mom and I were sitting with him. The receptionist was like, “He’s in with a patient, but I can get ahold of them for you. You just stay on the line.” That would have been a red flag because usually, they don’t drop everything.

The surgeon came on the line and then my dad, I just saw his face drop, and that was when they were like, “Your daughter has Hodgkin’s lymphoma.” I looked at my dad and was like, “What’s happening?” He was like, “You have cancer.”

My dad, I just saw his face drop… I looked at my dad and I was like, ‘What’s happening?’ He was like, ‘You have cancer.’

What was it like hearing from your dad that you have cancer?

It was just weird because I didn’t actually get it from the surgeon. It was relayed from my dad, which, now that I think about it, probably was good because both my parents were there at the same time.

He’s stoic. It’s almost as if it was a relief because finally, I know what’s going on. But also scared, obviously, because I didn’t quite understand what it meant. A little uncertain and nervous about it.

Reacting to a cancer diagnosis: how cancer patients feel in the moment »

Manda M. UNC BMT reunion April 2012

Treatment

Starting treatment & deciding where to go

Choosing where to go was pretty easy because I was on campus already at UNC and they have a UNC Cancer Hospital there. That process went pretty quickly. I got in to see them within a week or two.

At that point, it was just talking about what the next few months were going to entail. I decided to stay there because they’re on campus so I could walk to treatment. It made it easier because I had everything I needed to reduce my course load.

I had ABVD every other Friday. My parents would come up and I would meet them at my class. They would pick me up, take me to outpatient chemotherapy, and then take me home for the weekend.

Side effects from ABVD chemotherapy

My major [side effect] was nausea and vomiting. I would actually start vomiting before I even got treatment because I was just so nervous. I think they called it anticipatory nausea. I would sit in my biology class and start getting sick without any treatment.

I did have some hair loss. I got my hair cut really, really short so it looked like I just had a really short haircut. It was falling out. But, at any given point, I don’t think I went entirely bald. Ultimately, nausea, vomiting, and the general overall ickiness that I felt [were] my main [side effects].

Managing nausea and vomiting from chemotherapy »

Side effects from radiation therapy

I just had a really, really sore throat. I actually ended radiation about a week before the last day of classes. I thought it would be cool to take a shot of something to commemorate the end. That was the worst thing I could have ever done because it just burned my throat down.

I went to my radiation oncologist. “I am sorry. I can’t do that,” and he was just laughing. He was like, “I’ve seen it before. There [are] a lot of college students that have come through here who’ve had cancer and radiation. I understand. Here’s the stuff.” He gave me this liquid and then he was like, “Take it like a shot.” I was like, “Okay, fine, whatever. I deserve it. I’m never doing that again.”

A month later, I had no problems. I would say after that, my radiation oncologist was really adamant about testing me for hypothyroidism. He was constantly checking my thyroid. That ended up being a long-term side effect of the radiation treatment.

Learn how other cancer patients got through the different side effects from cancer treatment »

Getting diagnosed with hypothyroidism after radiation

It wasn’t too bad. It was just understanding that for the rest of my life, I have to be tested for this and make sure my blood work is okay. But other than that, it was just trying to find the right dosage and sticking with a plan [to] make sure that you’re getting the right dosage over time. They walked me through that and then my primary care physician was brought on board. He understood what was going on.

Now it’s just routine where every couple times a year, I go and make sure my thyroid levels are correct. Then they [adjust] the medication [as necessary] to keep it stable.

It helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.

Being a young adult with cancer

What was that like being 19 & having to reconfigure your college life to this?

Looking back, it was probably the best thing I could have done because it gave me normalcy. I think if I moved back home and just stopped everything, I would have been unhappy. Having my friends around and a normal college life was actually helpful. Now, my GPA probably wouldn’t say the same thing, but as a person, it helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.

I actually met someone who had Hodgkin’s, an undergrad who was in law school at the time. The doctors put me in contact with him. He was like, “It seems daunting, but I think with the reduced course, you might be okay,” because he had done the same thing.

I was able to take my course slowed down to less than half and still be considered a full-time student. I took his advice. He was really helpful during that whole time.

I don’t know if I took it in stride. I felt like I didn’t really have a choice so I had to do it. It was probably the best-case scenario for me that I was at a campus that had a really great cancer hospital. It almost felt like it fell into place a little bit so it helped drive my decision-making.

Manda M. family Fall 2020
How did you cope with seeing your peers live normal lives?

I found my people. I had some really great friends who were willing to change their lifestyles for me. They knew that I couldn’t go out and have fun on most nights after treatments or when I got back.

My parents would drop me off after treatment. I would go home with them on Friday and then they would drop me back off Monday morning. Monday evening, my friends would come over with takeout and they would just watch a movie with me. It was just really having a support system that helped and allowing my friends to just be.

Sometimes they would come and sit with me during treatments. My parents were there but just knowing that they’re there was nice.

I found my people. I had some really great friends who were willing to change their lifestyles for me.

[Don’t] try to push people away. I felt like I can’t really make friends now because I’ve got all this stuff going on but [don’t] let your mind go there. Your friends want to help you and they want to be with you. It may not be ideal, but they’re willing to put the effort into helping you, too.

It was cool because UNC is a really big sports school. But if [my] platelets were low or [my] white blood cells were low, I can’t go. They were like, “Let’s just do something else.” They were really good about including me in things that they knew that I could go to and I wasn’t going to get sick.

Your friends want to help you and they want to be with you. It may not be ideal, but they’re willing to put the effort into helping you, too.

How did you open up about your diagnosis?

After the first diagnosis, I was pretty open to people about it because it was a huge part of me. I felt anybody that I was romantically involved with should know and just could tell if it was going to be a problem or not

A lot of my friends already knew because I was still talking with the same friends. The new friends that I had made maybe weren’t really privy to it, but I felt like they were really just supportive, good people so I didn’t worry too much.

I honestly don’t know how you would bring it up to people who don’t know. There’s a certain part of your life where you just think you’re never going to get it again so why bother telling people about it.

It’s just a select few where you’re like, Maybe this person should know. I just felt that way, at least with my boyfriend, because we had been dating for a long time and there was something there. I should probably make sure that he knew a lot about my health history.

How to tell your family and friends you have cancer »

Manda M. family November 2020
Was there any talk of fertility preservation or family planning options?

No, not at that time. Doctors never really mentioned it and I never really said anything because I just wasn’t thinking about it. I wasn’t really prepared to ask questions.

Is there anything that you would have done differently?

I wish I would have asked about fertility, honestly. I had just read everything about Hodgkin’s lymphoma, how usually it’s cured, and you never really have to deal with it again.

There was a span of eight years between my first diagnosis and then it coming back. I could have done something. I could have frozen my eggs or I could have prepared for what’s next. Even if I wouldn’t have needed it, it would have been nice to have had that opportunity to know that there is a chance that this could happen.

It’s not really part of the treatment plan going forward and so I just never really thought about it. I wish I would have.

Now, when I talk to other 19, 20-year-olds that are going through this, I’m always like, “You think you don’t need it and you may never need it, but just be sure that you ask about infertility and if there [are] options for freezing your eggs.”

Learn about fertility options before and after cancer treatment »

I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.

Importance of knowing your fertility preservation options

At that time, I feel like [the] doctors did what they were supposed to do. They cured my cancer, but they didn’t really tell me what’s life after that. What are the things you might have to deal with later? And it’s not just infertility.

I had hypothyroidism, which they told me a little bit about. But then you have the potential for heart problems, lung problems… There was a blood clot I had that ended up showing its head 20 years later, in terms of things that I had to go through during my pregnancies.

The cancer’s gone but then [there’s] all this other damage in the process that I wasn’t really privy to. You go through your health history and doctors are like, “Oh, okay. Well, that could be a problem,” then you have to deal with it over and over again.

I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.

I didn’t even bother going to my primary care physician. I just knew.

Relapse

What made you think something was wrong again?

I just didn’t feel right. I didn’t even bother going to my primary care physician. I just knew.

I tried to shove a lot of things into a couple of months that I know I really wanted to do. Then I was like, “Okay, now I’m ready to go tell somebody that this is back.” And that’s how that started in 2010.

‘I think I’m going to go to the doctor because I think something’s up.’

Manda M. pre-bone marrow transplant November 2010
Why did you decide to do a last hurrah before seeing your doctor?

I met my boyfriend, who’s now my husband, back in 2006. I had given him an overview of what I had gone through in 2002 and 2003 so he understood what was going on because he knew that I was getting scans and stuff still for that.

Then in 2009, I started grad school. In the back of my head, thinking, I really want to get through grad school. I want to marry this guy and start my life. When 2010 rolled around and I started feeling a little off, I was like, Uh-oh. Maybe this isn’t the plan anymore.

I scheduled a vacation for the summer between my 2009-2010 grad school year. There were a couple of steakhouses I wanted to eat at because once you’re on chemo, you don’t like to eat so I went and ate at some of my favorite places.

Then finally, I was telling my parents and my boyfriend, “I think I’m going to go to the doctor because I think something’s up.” They knew that if I were saying something, I probably felt it.

I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.

Why did you decide to wait?

How much worse can it get in two months? I went a whole year without treating it last time so if I spend the next two months just trying to get things settled, then I felt like I could do it.

I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.

Was there a worry?

There was [a] worry I wouldn’t be able to enjoy, that my boyfriend would probably not want to stick around — which wasn’t the case, by the way, but it was in the back of my head. This is just going to wreck my life and so let’s just savor it for the last few months and then deal with it as it comes.

Official relapse diagnosis

I was like, “What stage is it?” They were like, “We don’t stage. We just say it’s recurrence.”

Manda M. bone marrow transplant

Treatment

ICE chemotherapy & autologous bone marrow transplant

They were pretty much adamant about [getting a bone marrow transplant] from the beginning. That was going to be the endgame

[With] ICE chemotherapy, I did a lot of my own research and I realized that it was pretty serious. They told me, “It’s intense. You would have to be in the hospital over three days in order to get the treatment.”

I don’t remember how many weeks I had in between, but it took a good chunk of that time to get healthy enough to even think about having the next one. There were a couple of times where we had to postpone, which didn’t happen with ABVD.

They had to postpone because my platelets had tanked or I [needed] blood transfusions and wasn’t healthy enough to get the next treatment. I had never had a blood transfusion before then. I can’t even keep track of how many blood transfusions I had over the span of those ICE treatments.

Then being really, really careful about not getting sick. During the pandemic, I was joking around with a friend, “This was my life in 2010 — always wearing a mask and never going anywhere,” because you just didn’t want to get sick. You wanted your next treatment because you didn’t want to postpone it again and again.

No evidence of disease

How is it thinking about that?

It seems like time has flown by. It doesn’t feel like it was 12 years ago because some things are still very vivid in my memory and other things are really fuzzy.

Thinking back on it, I’ve forgotten a lot of things as well. I don’t know if that was on purpose or my mind was just like, Maybe we should just shove this way far back because you don’t want to remember it.

Manda M. fiance newly engaged 10 months post-BMT October 2011

Fertility preservation & family planning

What was the big difference between being diagnosed at 19 & again at 27?

At 19, it just wasn’t there at all. You spend a lot of your teenage years thinking, I can’t get pregnant. Don’t get pregnant. Then in [my] 20s, especially since I was in a committed relationship, I thought, Oh, I can see myself being a mom. It was pretty much at the forefront for me and the doctors as well.

The second time around, they actually mentioned about fertility and the impacts that my treatment would have on it. It went from being nothing to something that was talked about quite a bit when I was older.

Did you bring up fertility or did somebody else?

The doctors actually brought it up, but they brought it up in a really weird way. I couldn’t quite comprehend it at the time. I had to start treatment pretty quickly the second time around so there wasn’t really time to even think about freezing eggs or anything like that.

I was just laying in the hospital bed and a fertility specialist came in. I just received some of my ICE treatment and they were like, “Freezing your eggs is just not an option for you. This treatment, along with the bone marrow transplant, is underway and there’s just not going to be an option for you to have children.” It’s what I took from it. My mom, who was sitting there at the time, was just like, “Wait. She’s not really comprehending this,” because I was on medications.

They definitely had to explain it to me a couple of times. My BMT doctor also reiterated, “Let’s just get you better and we can talk about this later. But as of right now, there’s not going to be too many options for you.” I just took it as I guess I’m not going to have kids.

At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later.

How did you process the news?

It was just like mark this down. It’s another thing that’s just not happening. Okay, I guess grad school is on hold. Not happening. Maybe I’m not getting married. Why would this guy stay with me now that I can’t have kids? Let’s just keep marking things that aren’t going to happen.

At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later. You get a lot of bad news all at once and so it was a little bit disheartening. But the real thing that I really [wanted] was just to be done with the treatment. Let’s just get this over as fast as possible.

I talked to my parents quite a bit and my siblings. A couple of times, I called my dad crying, “All my hair’s falling out and all this is happening.” He would just be, “This is par for the course. Why are we crying about this?” And I was like, “Well, you know…” And he’s like, “You just have to keep pushing forward.”

I think it just all stemmed from because he had gone through a lot of stuff that I couldn’t even imagine. He was just like, “Sometimes, things just don’t go your way and you just have to go through it anyway. Just know that it can be better after it’s done. But it’s going to be worse before it gets better.”

There were just people like my dad who were like, “You can’t get down on yourself too much. Otherwise, you’re not going to get through this.” I think that was helpful to have that perspective of somebody who can just be like, “Pull up your big girl panties and just get it done.” That’s his mentality and that helped because otherwise, I would just sulk around and do nothing.

Feel bad for yourself, cry, and then get up and move on. Okay, fine. I’ll feel sorry for myself today and then I’ll move on. And so I tried. I tried waking up every day and like, “Okay, what’s the one good thing I’m going to do today that makes me feel good about myself?”

Find answers to the most popular fertility and cancer treatment questions »

Manda M. ultrasound of 1st child July 2015
Meeting with an oncofertility specialist

I went in for one of my scans, maybe my third-year scan. “Look. I got married and I’m thinking about having children and I just need to know my options. I don’t know what they are.” He’s like, “Oh, okay. Let me refer you to a fertility specialist that works with cancer patients.” I was like, “That would be wonderful.” Why do I have to ask for this?

He referred me to her and that got the ball rolling on understanding what my real options were. If I really wanted to have a kid, then let’s make this happen and this is how it’s going to happen.

It’s interesting because it’s still very much related to cancer. I wouldn’t be infertile if I hadn’t had cancer. It keeps coming up over and over again.

First, she wanted to see physically where I was from a fertility standpoint. She did ultrasounds, took bloodwork, and confirmed what we had suspected that physiologically, I was going to be able to have a child in the traditional way. She confirmed all of that. 

Then she took me and my husband and [went] through the different possibilities. There was surrogacy, adoption, frozen embryos that can be donated, and IVF with an egg donor. She laid out all those things and was like, “I think you would be a perfect candidate for IVF with [an] egg donor.” Then we just talked through what that process would be and why she thought that that would be a good option for me.

I could carry a pregnancy and then my husband could actually be the father of the child. We could plan it so that we could use multiple embryos from the same donor and they would actually be full siblings to each other.

She said, “The good news is you have a cute uterus.” I was like, “Oh, okay. Good to know. I didn’t know they could be cute.” The silver lining is that [I] have things that are still functioning in [my] body so let’s go, let’s use them. I thought that was pretty, pretty nice.

The bad news is that I was fully in menopause. My ovaries were not working. She even showed me a picture. They’re supposed to look like chocolate chip cookies, I think, and mine didn’t.

She reiterated, “A lot more people have to use this route than we think,” and made it sound more like it’s a normal way of doing things. “It’s being done, people are using it, and it’s working so it’s going to work for you. We have a really high success rate with this.” She was just really confident and very hopeful that this was going to be the answer.

During the whole conversation with me and my husband, [there] was never a moment where she didn’t think there was an option. “We’re going to get you pregnant. You’re going to have a baby. This is the way to go.” She was just very confident.

The whole time, I was like, “Well, I don’t know if this is going to work or anything.” She was just like, “Yeah, it’s going to work. I know what I’m doing.” It was just refreshing to have someone who was just like, “This is done all the time and it’s going to happen for you, too.”

I also have a little bit of reservation. Will she be a little bit upset that I’m a cancer survivor and that maybe I shouldn’t be having kids? But none of that came up. “You’re fine. You’re five years out. Your doctor gave you the go-ahead. We’re doing this.”

Manda M. kids Levi and Darci February 2020
Deciding to have children after cancer

Should I bring a child in this world that may have a mom that has cancer for [the] third time? A part of me was like, Maybe I shouldn’t have kids because I don’t want to put them through that process. But I thought, If I live that way, then I would never do anything.

I just thought through that a lot more because I wouldn’t want a child to have to see me suffer. But I quickly understood that I couldn’t live my life thinking that it would show up a third time.

It was just understanding that I got to point B in a really interesting way. And it was miraculous in some instances. When I think back about all that I went through and now that I look at my kids, I’m like, “They are truly unique and never would have existed had my story not existed.” When I think about that, it’s almost as if I would go back and do it all over again to get the same exact thing because it made it all worth it [in] the end.

It wasn’t the path I thought [I] would take, but I got what I had hoped for so why would I change that?

Before we could do the IVF, we had to go through counseling because it’s very important that your children understand where they come from and they were giving us pointers about how you talk to them about it. I just always tell them, “You are incredibly special because you came around in unfavorable circumstances. A lot of things had to happen for you to get here in a weird kind of way and so that kind of makes you extra special.”

It wasn’t the path I thought [I] would take, but I got what I had hoped for so why would I change that?

Process of choosing an egg donor

It was way easier than I ever thought it would be. They were really on top of it — the fertility doctor, all of her nurses. They walk you through the whole process and make it super easy.

They already had donors lined up that they thought met my expectations. I wanted someone who was Caucasian because I wanted them to look like me and my husband. I wanted someone who had a fairly good health history so they test them for a lot of different genetic diseases. As far as eye color [and] hair color, none of that really bothered me. I just wanted to make sure that they were healthy and kind of looked like me; that was my only thing. They were like, “Are you okay with having a first-time donor? We may not know if she’s going to be able to produce eggs or not.” I was like, “Yeah, that’s totally fine, too.”

I didn’t have too many requirements so they had quite a few donors that met the requirements and a little bit more. The donors can tell you about their ambition, their goals in life, what they do now, their personality, what they like to do, if they own pets, and the reason why they’re donating. 

This particular donor said she was donating because she watched her aunt go through a lot of infertility issues. She felt because she was healthy and at an age that she could donate eggs that she wanted to do that in honor of seeing her family member go through this.

If this doctor is for real, this is happening… And it did. The first implantation worked.

Manda M. family Christmas tree November 2019
Fertilization & preparing for embryo transfer

That process was lots of shots, lots of hormones, lots of things to make my body do things that I hadn’t done in years because I’ve gone through menopause at that point. That whole process was just injections and getting my uterus ready for implantation and then sustaining a baby after it was implanted.

There was a little bit of nervousness because if this doctor is for real, this is happening. At this point, I should probably start preparing to be a mom because this is going to happen.

And it did. The first implantation worked.

Financial impact of IVF

I know that they had financial help. You could pay over time or you could pay a set fee for three tries or something like that. I had opted out of the three-try one just because this is a lot of shots and I don’t know if I can do this for three rounds of IVF.

Because I had known that this was going to be the issue, we had prepared pretty well financially. When we met with the doctor, we knew it was either going to be adoption or something else. We knew that we would have to save up some money if we were going to do this and so we had been saving for quite some time.

The interesting thing is that [with] the first one, nothing was covered. It was a good sum of money. 

Since then, I think some insurance companies do actually cover infertility because for my daughter, I was able to cover the implantation. Things have changed a little bit. I joke around with my kids that I need a return on investment because [they’re] expensive.

Importance of fertility preservation options

It’s just part of the cancer journey. It’s part of the treatment, really, and I don’t think people understand that. It just should be a part of how you treat it.

A lot of times, it ends after that last scan and you’re on your own. But it just really isn’t that way. There’s a ton of things that aren’t included in that treatment plan that should be. And I don’t really know how to fix it because I don’t know if that’s [an] oncologist issue. There’s just no guidance after or any help or understanding of what specialists [I] should have in place for the next 10 years in my life because I’ve gone to all kinds of specialists since then.

Just some understanding of what’s going to happen next and the things that you need to look out for because not every primary care physician is going to know what you need. You need to know yourself. It would be nice to have somebody guide you through how to advocate for yourself and where you need to go when you have these things happening to you.

I just tried to do a little bit every day. If I didn’t feel like doing any of it, I didn’t really get down on myself.

Manda. M family Fall 2021

Words of advice

One of the things I really took to heart during that time… One of the PAs (physician assistant) who had had non-Hodgkin’s lymphoma and had worked with a lot of cancer patients came into my room. I was getting really down. He was like, “If you lose hope, then you lose everything. You just got to come in here and do your time. That’s all I’m asking you to do. Just come in here and do your time.” I was like, “It’s like prison here.” And he was like, “Yeah, like prison. Come in, do your time, but don’t lose hope.” And I was like, “Okay.”

I felt like I basically handed my body over and said, “I have no control over this thing anymore. You guys do your thing, get it better, and then hand it back to me when it’s done.” I just checked out mentally the whole time I was in my BMT. It was almost as if I was detached from what was going on because I had no control over it. It was just a really weird experience.

My advice would be that you just can’t lose hope and just do your time because there’s literally nothing else you can do. I think that was what he was getting across. Being here is all you can do right now. Just be here. That’s what I took to heart. Just sit here and do my time. There’s nothing else I can do.

I just tried to do a little bit every day. I didn’t try to make crazy goals for myself. I would say to myself, “Okay, you get up and you get a shower today and that’s a win.” And so I would just try to get up, shower, and then go back to my bed. But that was a win. I got up and showered. Just make small goals.

One day, I was like, “Okay, now you’re going to go for a walk around the neighborhood for five minutes and that’s it.” Tiny little steps day by day, trying to do something that maybe I didn’t do yesterday.

If I didn’t feel like doing any of it, I didn’t really get down on myself. I was just like, “Today’s not the day,” and tried to start over again the next day. Every day was like a new day, basically, where I had one small goal and that was it. I didn’t really get down on myself if I didn’t achieve that goal, but I tried really hard to see if I could.

‘If you lose hope, then you lose everything. You just got to come in here and do your time. That’s all I’m asking you to do. Just come in here and do your time.’


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Hodgkin’s Lymphoma Stories


Madi J., Hodgkin's, Stage 1B



Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
Treatment:
3 rounds (6 infusions) of ABVD chemo

Danielle D., Hodgkin's, Stage 2



Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)

Lani S., Hodgkin's, Stage 2



Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles

Jason F., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions

Logan A., Hodgkin's, Stage 2A



Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
Treatment:
4 cycles of ABVE-PC chemo

Helicon K., Hodgkin's, Stage 2A



Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Lauren

Lauren C., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Wade looking out over a lawn

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)

Moe C., Hodgkin's, 2B, Relapse



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Fabiola

Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab

Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)

Charlie B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy

Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: AAVD chemo, clinical trial w/brentuximab (Adcetris) + nivolumab (Opdivo) immunotherapy

Mara T., Stage 2BX (Bulky)



1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Tylere

Tylere P., Hodgkin, Stage 3



Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Kayla

Kayla T., Hodgkin's, Stage 3A



Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant

Erica H., Hodgkin's, Stage 3B



Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)

Nicole M., Hodgkin's, Stage 4



Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)

CC W., Hodgkin's, Stage 4



Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)

Lia S., Nodular Sclerosis, Stage 4A



Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
Treatment:
ABVD chemotherapy

Ava O., Stage 4B



1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go

Delishea A., Hodgkin's, Stage 4B



1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, immunotherapy (Adcetris)
Topics: Finding community & support, self-advocacy
Emmanuel S. feature profile

Emmanuel S., Relapsed Hodgkin’s Lymphoma



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: ABVD, ICE; autologous stem cell transplant; Targeted therapy: Brentuximab
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Kelsey R., Hodgkin’s, Stage 2A



Symptoms: Bad leg itching with no rash, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation
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Manda M., Stage 2B Relapsed Hodgkin’s Lymphoma



Symptoms: Loss of menstrual cycles, iron deficiency, itching, night sweats, tiredness, night terrors, trouble breathing, difficulty concentrating, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation, ICE chemotherapy, bone marrow transplant

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Cancers Chemotherapy Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma R-CHOP

Kris’ Stage 4 Diffuse Large B-Cell Lymphoma Story

Kris’ Stage 4 Diffuse Large B-Cell Lymphoma Story

Kris W.

Kris was diagnosed with stage 4 Diffuse Large B-Cell Lymphoma.

He shares what it was like finding out his cancer diagnosis on his own, having to retire earlier than planned and learning his twin brother was diagnosed with cancer, too. He also shares his experience going through treatment alone, due to COVID restrictions, and what it was like dealing with isolation.

  • Name: Kris W.
  • Diagnosis:
    • Diffuse Large B-Cell Lymphoma (DLBCL)
  • Staging: 4
  • Symptoms:
    • Pain in the side of the abdomen
  • Treatment:
    • R-CHOP chemotherapy

If you even have just this remote idea that there could be something amiss inside your body, get it checked out. There’s no reason not to.

Kris W. timeline 1
Kris W. timeline 2

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


There was pain that would keep me awake. I could sleep most nights but this one particular night, I woke up at about 3 o’clock in the morning and it just wasn’t feeling right.

Kris W. with twin brother Kurt and older sister

Pre-diagnosis

Share more about yourself

I was a senior developmental engineer in electronics for a total of about 40 years. Since the cancer diagnosis and the treatment, I’ve had to retire. But I really wish I hadn’t had to retire.

I have an identical twin brother and I have a sister that’s 10 years older. My brother really got me through the treatment and everything. He [drove] me to the hospital whenever I needed. I had a few infections and spent a lot of time in the hospital during the treatment. I just can’t thank him enough.

Initial symptoms

I noticed that [for] a few nights in a row, I had this pain in my abdomen and in my side. When I [lay] on that side, which I preferred to sleep on, there was pain that would keep me awake. I could sleep most nights but this one particular night, I woke up at about 3:00 in the morning and it just wasn’t feeling right.

There were some things that led up to this. Two months before, I had a blood clot in my leg and they told me, “You can’t take Ibuprofen anymore because of this blood clot. It’s going to make things much worse.”

What was going on in your head as they were performing all these tests?

When they did the CT scan, I thought, Well, that’s a little bit weird. I figured they should be able to see anything in the blood work that would have come up. But they went ahead and did as they saw fit.

We really didn’t come up with a lot other than there was a mass in there. [In] the first scan, the mass was about six centimeters in diameter or two and a half inches. They didn’t know what it was. They were thinking that they had done the surgery there, too, when I had the blood clot in my leg so it could just be a mass of blood… bleed out of the joint where they put the catheter in for my blood clot. They went ahead thinking that that’s what it was, that it was just some sort of a liquid mass and it was not pushing things around too much.

[They did additional blood work.] I think that’s where they started to think that the mass was more solid than just blood floating around.

The diagnosis was diffuse large B-cell lymphoma. That was a shock because I had heard of lymphoma before and it was never good. It was never in a good light.

Kris W. cancer diagnosis online results

Diagnosis

Finding out the results of the CT-guided biopsy

There was a listing of what the biopsy found — a bunch of numbers, CD 20s, and all kinds of different things. The diagnosis was diffuse large B-cell lymphoma. I looked at that, went back up to the top, and said, “Wait a minute. Is this my file? Did I accidentally get in somebody else’s file?” That was a shock because I had heard of lymphoma before and it was never good. It was never in a good light.

[The] first thing I did was call my brother and go, “Dude, what’s this lymphoma thing?” He says, “What?” I said, “Well, it looks like I have cancer.” And he says, “Oh, come on now.” And of course, I was interpreting the chart so he was like, “Well, who are you? You’re not a doctor, you know.” And I said, “But it says pretty clearly: lymphoma.”

I had a doctor’s appointment the next day with the oncologist. I, of course, had a little trouble sleeping that night, but I didn’t really get sad about it. I was thinking, They’ll just tell me that it was a mistake and I’ll carry on. When I went to the doctor, they said, “Oh, no, that wasn’t a mistake. And we really do want to start treating you pretty soon.”

How cancer patients feel the moment they get their diagnosis »

I knew what my diagnosis was before they actually told me. I spent the rest of the day looking everything up online, but none of them made any sense to me.

They started to set up all of the appointments outpatient. It was going to be three to four weeks to start chemo and another five weeks to do the PET scan. I was going, “Oh, can’t they get me in any sooner? I mean, it seems like I need it.” Then they said, “No, you really do have this,” and I thought, “Okay, well, we’ll wait.” They were going to try and bump them up sooner and let me know. But at that point, they had already said, “You’re not working for a while.”

How did you feel when they said you’re not going to work for a while?

The feeling was, “When can I go back to work?” I had intended to work another 10 years if I could. At the company I retired from, I was going into 10 years total with them. I had worked with them in the early 2000s, then I left, and came back. I told them I was planning on working at least 10 years. I want to work for 20 years if I can. My brain will hold out. But obviously, that wasn’t going to be the case.

Working during cancer treatment: is it possible? »

Reaction to the cancer diagnosis

I knew what my diagnosis was before they actually told me. I told them, “Nice system you got where you find out just ad hoc online that you’ve got cancer,” but they talked their way around it pretty well. It doesn’t happen all the time, but they’re trying to figure out a way to make it different.

It was interesting. I spent the rest of the day looking everything up online, but none of them made any sense to me so I just carried on. “I’ll find out tomorrow what’s going on.”

There really wasn’t a lot of information that I got [on] the first visit. They handed me a folder that was probably about [an inch] thick and I didn’t read any of it. The last thing I wanted to do is dig into a bunch of medical jargon that I didn’t understand anyway.

I talked to friends that had been through similar things and that was a lot of help. My brother’s in-law’s family had just a bad few years with cancer.

I had intended to work another 10 years if I could. My brain will hold out. But obviously, that wasn’t going to be the case.

The importance of having someone with you during appointments

It was incredible. [My brother] was taking me to all my doctor’s appointments so he could be there as a witness. I’ve heard so many people on The Patient Story videos say [that] after they had said “cancer,” everything else was gone.

Learn how other cancer survivors went about breaking the news to their family and friends »

Treatment

R-CHOP chemotherapy

The doctors didn’t really go into much detail. They just said, “We’re going to do chemo and it’s going to be R-CHOP.” They told me what drugs they were and all that. They said that the first one that I get is going to be a weird one because they have to decide how long the treatment has to be.

The first chemo in the hospital was 16 hours. When they figured out how fast I could take that first drug, they cut it down to seven hours. All of my chemo treatments after that were seven hours.

Find answers to popular chemotherapy questions »

There really wasn’t a lot of information that I got [on] the first visit. They handed me a folder that was probably about [an inch] thick and I didn’t read any of it.

Being admitted into the hospital for treatment

They called me and said, “We’re admitting you to the hospital. We have a room for you on the oncology worked in. We’re going to do all of the initial stuff inpatient — the first chemo and the PET scan and so on — because we can get you in much sooner.” They didn’t really say why they wanted to do it so much sooner. I just assumed it was some trick that the doctors could use to get me in there quicker. I appreciated it because it was much sooner than planned.

It came as a surprise, but I was ready for it. They told me that that was going to probably happen. My brother was able to hang out with me while all of that was going on. He took me to the hospital and we got all settled in the room. I was only there a few days, I think four or five days, and he was there every day to visit me all the way until March when they closed down visiting.

My brother really got me through the treatment and everything. I just can’t thank him enough.

Side effects from chemotherapy

They never really did define the infection that became septic. They were very concerned about that. I spent a few days in the hospital with each of those. It pushed out my chemo treatments by about the amount of time that I was in the hospital, usually about a week or a week and a half.

I was really looking to get those over with and see what happened because otherwise, I had no real side effects from the chemo. I was a little tired the day of the chemo and maybe a little bit the next day. But then I had a lot of fatigue from other things going on, too. All the drugs that I have to take and so on.

They gave me Neulasta. I had to go to the infusion center again and get shots for three days.

Hear from other cancer patients on how they got through the different side effects of treatment. »

Kris W. no hair

I’ve been shaving my head for so many years that I wouldn’t notice that. But I’ve always had a goatee or a full beard and it’s always been like Santa Claus in the natural sense, where the hair grows straight out and really thick. When I started growing my goatee back after the chemo was done, it was going sideways.

I heard that my dad, when he was going through chemo for his lung cancer many years ago, lost his hair. He had really white, perfectly straight hair. His hair grew back really curly. I thought, If I grew my hair out, it would probably be really curly because my hair was always really straight. Now it has this curl right down at the bottom and it all ends up over on the side. It’s not a big problem, but I just thought that was hilarious that it wouldn’t grow straight now.

I’ve never had heart issues, but I heard that it could have happened with the chemo, but I haven’t seen any of that come up.

How did you feel about losing your hair?

It didn’t bother me at all. I think I look funny without hair on my face, but everybody else said, “You look great!” I didn’t have eyebrows, eyelashes, or anything. The nice thing was I didn’t have to trim the hair sticking out of my ears or my nose. I didn’t have to shave and I thought that was really nice.

How to cope with hair loss after chemotherapy »

What was it like undergoing cancer treatment during the pandemic?

The hospital moved the infusion center to an easier place to get to so that most of us that were dealing with [infusions], which were mostly cancer patients, could just walk in a door and we’re in that area. That worked out really well but that was only one visit out of the six I had.

Then they moved it back to way down the hallway. It was strange because it seemed like there was doom at the end of this hallway. You couldn’t see all the way to the end. But when I got down to the [center], everybody was awesome to deal with. I used to show off my port and have the nurses all giggling.

My sons, I felt really, really bad for them. They were both in retail where they dealt with the public every day. Neither of them wanted to visit me because they just assumed that if they gave me COVID, I was going to die.

How was it like going through this experience alone due to COVID restrictions?

My brother found other ways to deal with it. When I wasn’t in the hospital, he would come meet me at my house and help me clean up. We’d have some takeout when they figured out how to do that with COVID. He probably took more time to come to my house to make me feel like there was somebody there.

I had a nurse that came to my house once a week to maintain the bandages and the surgical point for the nephrostomy tubes that I had to help with my kidney failure. I got to know her pretty well and she was a lot of fun.

My sons, I felt really, really bad for them. I knew they wanted to come and visit me but they were both in retail where they dealt with the public every day. There wasn’t any way they could [work from home] since they were dealing with the public every day. Neither of them wanted to visit me because they just assumed that if they gave me COVID, I was going to die. And they were probably right. I don’t know for sure.

There was always somebody that I could talk to though. There was no point where I was suicidal or anything like that. The doctors, at one point, were calling me every day.

How to deal with the feeling of isolation 

I’ve always been a happy person, even though I was diagnosed in 2014 with ADHD. I guess I was just so used to being alone. It didn’t bother me. I didn’t let it bother me at all. I felt the same loneliness that I had before I had the disease.

Every once in a while, I’ll go out for drinks with my friends. I had both men and women that I could talk to about anything. I liked working so much [because] I was hanging out with 700 of my closest friends. I knew everybody in the plant. I may not have known their name, [but] I knew their face and what their family history was and everything. I could talk to anybody in that facility and feel better when I walked away.

We ran three shifts so there was always somebody in the plant to go talk to even if it was just about work. It was always good. I like being technical with people and teaching them things. So many of the people in that facility appreciated the fact that I would talk to them as somebody at their level or try to bring them up to my level of knowledge. They all appreciated that a lot.

I’d give anything to be there again, to be there right now.

How can you show support when a loved one has been diagnosed with cancer? »

I guess I was just so used to being alone. It didn’t bother me. I didn’t let it bother me at all.

The impact of having to retire early

I worked until January before my doctor finally said, “You’re done.” There were several things that led up to it. One of the drugs that I was on for ADHD kept me awake during meetings and also kept my brain working at a point where I could do my job as I felt that it needed to be done. Everybody said they didn’t notice that I was incapable of doing my job. I felt like I was incapable.

When my doctor asked me if I could do it without Adderall, I said, “No, I can’t. I’ve got to have the Adderall.” But I’ve been losing teeth from grinding my teeth so much and I felt stressed in my head even though there wasn’t anything to stress me out.

That drug was having a profound effect on my left kidney — that was the one that was struggling after cancer, even after the treatment. He said, “You’ve got to do something else.” I said, “We’ve tried everything else and nothing else worked like this.” He said, “Well, then you’re not working anymore.” “What?” He said, “Nope, we can’t do it. It’s going to completely destroy your kidney.” And I said, “Well, I got another one.” He said, “No, that’s not good enough. We don’t do that.”

I went out on medical again in January of ’21. By December of 2021, I finally decided I was going to retire.

It’s been a lot rougher because the medical leave, I knew that at the end of it, I was probably going back to work. And I was so excited to go back to work after the cancer treatment. My doctor said, “You really shouldn’t. You should just retire now.” But I don’t want to and we couldn’t come up with a really good reason to present to the Social Security Disability Board because my legs hurt and they’re weak. Why? We don’t know. And to this day, we still don’t know.

The thing that finally got me through all of it was chemo brain, which was really weird because I was an advanced-level engineer and I sat at a desk staring at a computer all day. I’d get up and walk around once in a while, but apparently, it was the best situation because I was approved for Social Security Disability two weeks after I applied. I’ve heard people that have gone for years trying to get disability insurance from Social Security with really obvious physical problems. I was really surprised by that.

What benefits are available for cancer patients? »

I’d give anything to be [at work] again, to be there right now.

Twin brother gets diagnosed with bladder cancer

He got cancer right as I was coming out of it and that was disturbing.

We were sitting and talking in my house. I said I had so many issues with [my] kidney even after all the treatment [and] the UTIs. I had stents in the ureter for a little while [and a] nephrostomy bag and everything on me for over six months. With all of that, he told me that he was having trouble going to the bathroom and I said, “Get your butt into the doctor right now and don’t sidestep it. Tell them exactly what’s going on.”

He went to our doctor and did a urinalysis. They said, “Wait, there’s cancer cells in there,” and discovered he had bladder cancer but it was really early. He went through one round of chemo, but they put it right in his bladder. Then he did immunotherapy for, I think, eight visits or something. It was almost every three weeks, almost like my chemo. Then they set up a maintenance plan for him after they told him that he was cancer free. We were celebrating that one, too, but mildly celebrating because it was still COVID.

He came out of it really well. I am just so happy that happened because there were a couple of scares where they thought it might have gone into the muscle tissue and I’ve heard that that’s not a good sign.

Getting a second opinion post-treatment

The last time I’d seen the doctors at Beaumont, at the Rose Cancer Center, in one sentence they told me I was cured and in another sentence told me I was in remission so I didn’t know what to believe. This was partially the reason that I went to Karmanos.

They also told me that Karmanos would be the next step if the cancer did come back, that Beaumont could no longer perform the treatments. They couldn’t do the stem cell transplant or anything if the cancer came back.

I set [it] up with Karmanos on my own. She had seen all of my records from Beaumont. They had access to my online chart. When I went into her office, I said, “I don’t want to have baby powder thrown up in the air and everything else to make me so welcome here. I want to know what’s really going on.”

It was humorous, the story. She said, “There’s a 65% chance that your cancer is going to come back.” I said, “Really?” She said, “That means there’s [a] 45% chance that it won’t.” And I said, “Well, I’m not as smart as most doctors, I don’t think, but there would be 35% that it won’t.” And she said, “Oh, yeah. You are an engineer, aren’t you?” And I said, “Well, yeah, but that one’s easy enough.” But so far, I’m good.

The other thing was that at Beaumont, they said that I was stage 3 to 4 and that they don’t really stage these things because there’s no real help in the treatment. I thought that was a little bit weird.

Then Dr. Sano at Karmanos said, “No, you are not stage 3 to 4. You are late stage four.” I said, “Oh. Well, what does that mean?” She said, “You are probably within a month of dying.” And I said, “Oh, I never even thought about that.” She wasn’t brutal about it or anything. I was thinking it was a quota they had to keep. She said, “That’s sometimes a quota thing. I’m not going to admit that any kind of a medical institution would do that.”

She was treating me as somebody on the same level, I’d like to think. She realized that before I had chemo brain, I was pretty smart. Since then, they’ve been pretty good. I’m afraid to say that she has left the hospital at Karmanos so I [will have to] see a new doctor next time. And I’m not looking forward to that because she was so awesome. She was really young, too. She was under 30. It was just nice talking to somebody that could tell it straight. I don’t want to sugarcoat it and that seemed to be what Beaumont was really good at.

Learn more about how chemo brain feels, how long it lasts, and how to combat it »

Words of advice

Why did you start watching The Patient Story videos?

I was looking for confirmation that I was going to make it through all this. I’m not the type of person to be scared of a lot of things and this one scared me a little bit. I’ve been riding a motorcycle for 50 years and this one scared me a lot more than getting out in traffic on a motorcycle.

The videos were quite helpful in how people managed it, especially the thought of it coming back. When I started watching The Patient Story videos, I had already been through my chemo and they told me that my cancer was gone. Of course, I was happy about that but they didn’t really tell me the rest of the story until I started seeing a different oncologist in a different cancer center. She was the one that told me, “You could be in deep trouble here, fella.” She was very nice about it. I’m not saying that she was brutal, but it was something I needed to hear because I had no idea what my chances were of making it through without cancer coming back.

[The] interviews, especially the young people, got me through a lot of the secondary side effects that I have from the chemo and just making sure that I’m not alone.

Learn more from our patient community »

I was looking for confirmation that I was going to make it through all this. I’m not the type of person to be scared of a lot of things and this one scared me a little bit.

How important was it to bring those moments of lightness?

It was important to me. I like to see everybody smiling. I’m the type of person [who] when I walk down the hallway at work and pass somebody, I always smiled at them. That was different after COVID hit, of course, but I still tried it and nobody responded.

I’ve always been that way, even [when] traveling. I always smile at everybody and people seem to smile back, even if they look like they were in a bad mood to start with. I just enjoy that. That’s something that I feel I need to do. And it helps. It helps me if nothing else.

Why men typically hesitate to go to the doctor

My brother is one of those tough guys. He’s really good with his hands, which was apparent in his avocation when he could still work. He was in printing and machine repair. He was an awesome mechanic. He was that kind of guy, very tough, and he wouldn’t wouldn’t admit to anything.

He was just like my dad. My dad, when he found out he had lung cancer, it was way too late. They just said, “Well, how long do you want to live?” He took the chemo treatments and everything. He lived for 15 months.

With Kurt, he would wait until it was killing him. He’s had two heart attacks and both of them were like, “Why didn’t you come in when you actually had the heart attack?” “Well, I just thought I needed an antacid or something.”

Don’t let it slide. If you have a pain that doesn’t feel like normal pain, have them look.

Kris W. cancer survivor ribbon tattoo
How to convince someone to go see a doctor

It was easy after all that I had been through. At that time, he probably heard me whimpering in the bathroom when I had to go because it hurt so bad.

For me, it was — my back hurts, yes, but not in this spot. In this spot, I’ve never felt that pain before. Don’t push it aside, especially as you start to get older.

Getting those infections that led to the sepsis, when the actual sepsis set in and my brain wouldn’t work, I was stumbling around the house and my brother’s trying to keep me from falling. I’m doing these calculations in my head that make absolutely no sense. It was like I was at work, but I wasn’t where I work. I would have probably just said, “I’m just weird, you know?” And my brother said, “No, I think we’re going to the hospital now.” He loaded me in the car and we got there. The nurse did all my vitals. My blood pressure was really low and my heart rate was really high. That was in the throes of it. 

Don’t let it slide. If you have a pain that doesn’t feel like normal pain — because I know every man has some pain that he doesn’t admit to or that’s been around for 20 years. “It’ll be okay.” It probably won’t be, but if another one comes up, have them look at that one. It’s simple. It’s half an hour at a doctor’s office and you’re done with it or even a couple of hours at an E.R., if you have one that’s not too busy.

Most of us have medical insurance now. And even those of us that don’t, if you do find out you have cancer, I’m sure with a lot of the lymphoma societies, there are ways to get financial help. I haven’t needed it, thankfully. Just get it done.

Make sure you get diagnosed. If you even have just this remote idea that there could be something amiss inside your body, get it checked out. There’s no reason not to.


Kris W.
Thank you for sharing your story, Kris!

Inspired by Kris's story?

Share your story, too!


Diffuse Large B-Cell Lymphoma Stories

Stephanie Chuang feature

Stephanie Chuang



Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Kris W.

Kris W., Stage 4 Diffuse Large B-Cell Lymphoma (DLBCL)



1st Symptoms: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
Robyn S. profile

Robyn S., Stage 2E Relapsed Diffuse Large B-Cell Lymphoma (DLBCL)



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: R-CHOP, R-ICE, intrathecal, BEAM; autologous stem cell transplant, head and neck radiation, CAR T-cell therapy

Barbara R., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Abdomen and gastric pain



Treatment: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851

Luis V., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Persistent cough, fatigue, unexplained weight loss



Treatment: Chemotherapy R-CHOP and methotrexate

Nina L., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor

Shahzad's CAR T Story



Cancer details: Refractory non-Hodgkin lymphoma, stage 4
1st Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
FDA approved: October 2017

Erin R., DLBCL & Burkitt Lymphoma, Stage 4



Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)

Emily G., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Pain in left knee
Treatment: R-CHOP chemo (6 cycles), high-dose methotrexate chemo (3 cycles)

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Categories
Alecensa (alectinib) ALK ALK Cancers Lung Cancer Non-Small Cell Lung Cancer Radiation Therapy

Dan’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Dan’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Dan W. profile

At 34, Dan was diagnosed with stage 4 ALK+ non-small cell lung cancer.

He shares the importance of patient advocacy, sharing your story and experiences, having doctors in your corner and willing to fight for you, and being honest and open with your children.

  • Name: Dan W.
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
    • ALK+
  • Staging: 4
  • Symptoms:
    • Cold symptoms
    • Shortness of breath
    • A little bit of tightness in the chest
    • Loss of voice
  • Course of Treatment:
    • Stent placement
    • Radiation
    • Targeted therapy

Being a dad is something that’s very special for me so I don’t think I took it for granted. I think it just has more meaning now being able to do those things

Dan W. timeline

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Dan W. and family in Halloween costumes

Pre-diagnosis

Introduce yourself a little bit

I like to have a great time. I try to see [the] positivity in things, even before [my] cancer diagnosis. I try and get along with a lot of people. I really want to have positive interactions with people that I come across, whether it’s just meeting them for the first time or just saying hi to someone. [I’m] very loving and outgoing.

[I have a wife and] two daughters. Francesca is seven and Georgia is five. The oldest one is named after [my wife’s] grandmother and my grandfather and goes by the name of Frankie.

My oldest is very outgoing [and] has to have social interaction [on] any given day or any given time. She’s very much like me. Always has something to say. She’s been talking as long as she could get a word out. She’ll talk until she falls asleep every night.

Georgia is very shy. She just turned five. She likes to hide behind us and [have] us as a sense of security. But when she’s out with friends, family and people that she’s comfortable with, she’s just as outgoing as Frankie is, so it’s great to see that side of her personality come out when she gets comfortable with people.

It wasn’t until a CT scan was performed that they had come across a large mass in my chest.

Initial symptoms

I started with cold symptoms about mid-November of 2018. Then the cold just wouldn’t go away. It progressed into shortness of breath, a little bit of tightness in the chest, [and loss of] my voice.

[I was] going to my primary care physician and just being pumped with steroids or inhalers — nothing seemed to work at any point and no additional tests were ordered. It was all the way until the very end of January [2019] that I was chasing my youngest across the dance studio and I was out of breath within steps. I had already exhibited symptoms of being out of breath easily doing other things, but I was always resilient to push through.

I had a telemedicine appointment and the doctor said, “You could have had a minor heart attack at some point. We need you to go to the E.R.” I went to the E.R. and a number of tests were done. It wasn’t until a CT scan was performed that they had come across a large mass in my chest.

Diagnosis

The doctor had come in to tell me, “You have a large mass in your chest. We’re pretty sure it’s cancer. And we think it’s lymphoma.”

My uncle had passed away from non-Hodgkin’s lymphoma just after six months of being diagnosed back in the mid-2000s and the first thought that ran through my head [was] what his kids went through. Not necessarily him but what his family went through because of the diagnosis.

It struck home for me right away and I knew it was serious at that point.

Things really get real and put into perspective when someone throws around a cancer diagnosis.

Receiving the news

I didn’t go to the hospital until about 10:00 or 10:30 at night. It wasn’t until two, three o’clock in the morning that the doctor had actually come back into the room in the E.R. I was by myself not thinking that anything was going on [and] wasn’t really scared going to the hospital in any way.

My wife stayed home with our girls because, obviously, they couldn’t stay at home alone. At that point, I called my wife and we had a family member come over and watch the kids. Then my wife rushed over as soon as she could.

Dan W. daughters at the beach
Thinking about your children

Children’s innocence was so prevalent in my mind at that point. The thought that they don’t know what cancer is, what it means… if they had to put their mind around something, it’s just probably going to be death associated with cancer.

The thought that my kids would grow up without a dad or without that influence in their life, it was really hurtful to me. Not that I ever took life for granted, but things really get real and put into perspective when someone throws around a cancer diagnosis.

How do I tell my children about my cancer diagnosis? »

They were four and two, so pretty extreme for them to hear that daddy has cancer.

Getting the official diagnosis

From the day that I went into the hospital, I would say 10 or 11 days later, we realized that it was non-small cell lung cancer. At that point, it was at least stage three and they were going to do some staging.

In the coming week or two, there were a number of different staging tests that I had gone through and biopsies to determine [if it was] stage three or stage four.

It was a snowy Tuesday. My wife, a school teacher, was home from school. I was working from home. We had received a phone call from the lymphoma oncologist as well as the interventional pulmonologist who had done the bronchoscopy to get the sample. They had given us three ideas of what it could have been — sarcoidosis, lymphoma, and lung cancer. We’re not expecting lung cancer, but here it is. We’re going to tell you it could be lung cancer, but we really don’t think it’s that.

When that Tuesday afternoon came and they called, they asked us to write some things down. Thankfully, my wife was home. They gave us the news that it was lung cancer; at that point, at least stage three. But I had a biomarker, a driver behind my cancer that was ALK-positive. We had no idea what that meant.

In a career that’s not medically related in any way and my wife being a teacher, we’re street smart at that point. She’s much more book smart than I am, but [we] immediately went to survival mode. Let’s start looking up what this means. Let’s see who to see in situations like this. Second opinions. Who do we go to? Who do we talk to? What are our resources and how do we navigate this new norm for us? Because, at this point, we didn’t know therapies, treatment, [or] what was going on in that initial diagnosis, so a lot of unknowns for us.

Dan W. and wife with fireworks
Reaction to the diagnosis

It’s kind of a blur, to be honest. There [are] so many vivid memories from a lot of the events that had taken place.

Your life is a whirlwind when you’re first diagnosed or when you’re going through some of those traumatic experiences [in] that you don’t remember everything. Some things stick out more than others, but I remember placing the call. I remember the doctor coming in, sitting on the bed, and saying that to me, but I don’t recall when she had come in.

I thought about my kids. Cancer sometimes runs in your family. Is this something that I can pass on to my kids? Is this genetic mutation something that would also be related to my brothers? I’m one of four. Do I need to have a conversation with them that they have to get screened?

What are my kids going to go through? I brought kids into this world not knowing much about cancer itself. Had I known before, would I still have brought kids into this world? Those were some of the thoughts that went through my mind.

[We] immediately went into survival mode… at this point, we didn’t know therapies, treatment, [or] what was going on in that initial diagnosis, so a lot of unknowns for us.

Later on, as I’m starting to additionally digest some of the information, it’s — How did I get lung cancer? Where did that come from? What have I done to expose myself to second-hand smoke? Not being a smoker or [having] a history of smoking myself, what environmental factors have I been exposed to where I’m susceptible at this point to lung cancer? [I] just couldn’t really hang my hat on anything specific.

The doctors assured us that from what they can tell, it’s not environmentally driven, but there’s a switch in your body, something went off. We don’t know what caused it, but we would say that would not be environmental.

It was a little troublesome to put myself in the position of looking at how that affected my kids and my family.

The more and more that we learn is crazy. The stories that we hear, the people that we follow, the people that we become connected with and friends with, being diagnosed at such a young age and then living a healthy lifestyle is completely difficult to fathom. At the end of the day, it just doesn’t make sense to us.

Patients share how they reacted to a cancer diagnosis »

Treatment

Radiation and targeted therapy

The plan was to radiate the largest mass in my chest, at the base of my mediastinum where it splits off to either lung. That would provide relief. Largest cancer site, let’s radiate it. [I] went through five sessions — Wednesday through Tuesday, [then] Saturday and Sunday off.

It wasn’t too bad. I’m pretty resilient so if I’m tired, I’m not necessarily realizing that I’m tired. I’m just pushing through things. Probably a good quality but, at the same time, probably a bad quality where you have to listen to your body and understand what it’s telling you at times.

Once radiation was done, we were starting [the] first-line treatment with targeted therapy. The idea with the targeted therapy was, hopefully, [my] quality of life would go back to where it was before and I’d be able to do the same things that I was doing with my kids, my wife, and in my personal time prior to cancer.

Find answers to popular radiation therapy questions and experiences of radiation therapy »

Undergoing radiation and targeted therapy again

Thankfully, living in the Northeast, [there are] two great hospital systems in Philadelphia. There [are] more than just two but I focused my care at two, [partnered] with some doctors in Boston, [and] continuously reviewed the plan [and] best course of treatment. How do we continue to move forward and be as successful as possible [in] navigating my diagnosis?

The idea was to do consolidated therapy. They were going to go to the right side of my lung — top and lower lobes — and radiate. They were going to radiate those sites with the idea that if progression does occur, it’s going to most likely go back to those original cancer sites. Since it wasn’t treated previously from radiation, they wanted to go back and just clean up those spots [and] make sure that there [weren’t] any residual cells there as well.

Find answers to popular targeted therapy questions and experiences of targeted therapy »

Dan W. and wife inside inflatable lungs
Importance of biomarker testing

Neither of us [has] a background in health care or in medicine so just what you see sensationalized on TV or if you have a family member or friend that’s going through something, that’s your exposure to it if it’s not part of your expertise.

Thankfully, we have access to great healthcare systems and that was the norm for them. We just said, “Hey, something’s not right.” And they said, “We’ll help you out. We’ll take the reigns from here and do what we’re supposed to do.”

Little did we know that meant biomarker testing and so on, but we’re thankful that that was done and identified very early on. Hearing other people’s stories, that’s not always the case.

Advocating for yourself

You hear nightmare stories where people just go straight to chemo and certain cocktails of treatment options that are used in lung cancer can be fatal for someone who is ALK-positive. Right then and there, knowing that you’re giving something to someone from a therapy standpoint that could actually kill them before it could even help them is troublesome.

It’s so difficult when you’re putting yourself out there and someone’s telling you that what they do for a living isn’t going to help you in any way.

You just have to advocate for yourself. We did early on not knowing what we were going into and what we were navigating at that point. But it was very important for us to pull together doctors that would be in our corner and would fight for us. It wasn’t about them. It was about us as patients.

We actually had not a great experience with the hospital that I went into when I was first experiencing symptoms. We left with the intention of never coming back.

We had an oncologist come into the room the day after I was admitted and just said very vague information, didn’t have much to give from an outlook standpoint or what was going on, or what he thought was going on.

When you go to the doctor and you break a bone, you’re used to looking at an X-ray, right? You’re expecting. We did a CT scan [so we were expecting], “We’re going to show you the CT scan, what we’re looking at, and what’s going on.” He said, “I don’t read pictures.” And we were like, “What do you mean? You’re an oncologist. How do you not?” “Oh, well, we have people that do that. I don’t.”

We lost a lot of hope right then and there for any proper guidance from him as an oncologist, even just from a general standpoint. We had asked them to leave. It was a very difficult situation for us. But, thankfully, [the] interventional pulmonologist followed up and came into the room a short period later and was able to explain some things to us as to what he was seeing and navigate those scans with us.

It’s so difficult when you’re putting yourself out there and someone’s telling you that what they do for a living isn’t going to help you in any way. You get very turned off. We left a few hours later from that hospital with the intention of never coming back there.

Hear from cancer patients on what self-advocacy is and how they advocated for themselves »

Targeted therapy

I’m on targeted therapy called Alectinib. I’m very fortunate to have that accessible to me and have insurance that does cover a large portion of the cost because it is very expensive, but I’ve responded very well to it.

I have [had] stable scans since the spring of 2020, so very relieved to get that news and, hopefully, continue to get that news every quarter. It’s allowed me to be a dad. It’s allowed me to have manageable side effects, fortunately for me. I know it reacts differently for everybody.

How does Medicare cover cancer? »

Dan W. with wife and daughters

There were times early on that were very difficult. It’s a fine balance — what the medicine was doing to my body and how to react — to find that comfort zone of taking it and what am I eating that’s affecting my body. It was tough, but we’re in a much better spot now.

Eating healthy during cancer treatment »

Side effects from Alectinib

The biggest one that I’m challenged with now is being out in the sun. [I’m] very susceptible to burn and being outside as frequently as I am — I don’t like to be indoors at all. I could never live in a big city because I would never see grass. I’ve always got to be outside, so that’s very difficult.

High UV rays, going to the beach — I’m always wearing long sleeves, I’m always wearing a hat, and trying to cover up. Even in early spring, 10 minutes out in the sun on a high UV ray day, I’m getting what feels like chemical burns on my hands, on my face, on my head, and it’s difficult.

Bilirubin levels, liver functionality. There [are] a number of different known side effects that come with the therapy that I’m on so it’s all things that I’ve navigated earlier on than now but continuously monitoring that through blood tests every month.

Find out directly from cancer patients what side effects they experienced after undergoing treatments »

Everybody needs advocacy. Everybody needs a platform.

The White Ribbon Project

We’re very active on social media. My wife had seen something and had reached out to Heidi to get a ribbon to display. I didn’t really know much about it, but I’ve had numerous conversations with Heidi.

Heidi’s visions are amazing. It’s not to say that it can’t mean something different to someone else that’s involved. When someone goes and displays a ribbon, if it’s on their front door, [it] could be in support [of] someone else in their family or a friend. It may not be them. How they’re advocating or showing that they’re supporting someone or the community can be different.

When we received our ribbons, we received three and I delivered two to both healthcare systems that I was receiving care at in Philadelphia and then we kept one for [ourselves].

Find out more about The White Ribbon Project »

What does it mean to you and your family to have that?

To me, my thoughts are all-inclusive. Everybody needs advocacy. Everybody needs a platform to push whatever cancer they would like to push from an awareness standpoint. It just so happens that I have lung cancer so when I talk about cancer, it’s probably going to be about lung [cancer] and my experiences and experiences of the individuals that we’ve come across since our journey began.

It’s so important to tell your story and what that means for us is not just for us; it’s for everybody.

It’s so important to cherish that time and experiences that you do have together.

Dan W. and family at Links for Lungs Foundation event
Sharing your cancer story from a father’s perspective

It’s been powerful. It definitely puts things into perspective when it comes to life. What to be upset about, what not to be upset about. It’s okay to get upset still about little things but at the end of the day, it’s so important to cherish that time and experiences that you do have together.

I found sharing my experiences or my story has paid off for other individuals to put things into perspective for them, whether they’re going through something or not. You can always take something from an interaction with someone else and apply that to your own life.

I feel as though we’ve gotten feedback as to how we have navigated this and how we continue to tell our story and help other people [and] how powerful that is to other individuals.

Being able to go out and advocate, that’s what I want my girls to see and learn from because I think that’s really important and that will help shape them in life.

Living with cancer as a parent with young children

Very early on, we received some guidance, to be honest with them. At that point, they were four and two so pretty extreme for them to hear that daddy has cancer. They don’t know what that means so to them, that’s their new norm – Dad going to appointments and whatnot.

We’ve been honest, open, and talk to them. We’ve also shared experiences where there’s the dark side of cancer, but there [are] so many good things that come from sharing your story and putting yourself out there where other people rally around you within what we call our village. Feeling the love from that is pretty special.

Being able to go out and advocate, that’s what I want my girls to see and learn from because I think that’s really important and that will help shape them in life.

I thought [my] quality of life was going to be very poor and I thought the outlook was very poor. But the further we get through this journey, the outlook continues to get pushed out. The further we get, the further that outlook is going to exist.

Is this where I thought I would be? No. I thought [the] treatment was going to be different. But continuing to advocate for us, myself, [and] my family has always been my number one goal. Keeping things as normal as possible for my kids [and] being able to grow from these experiences was very important to us early on.

Learn from other patients about how to talk to kids about cancer »

Being involved in the children’s lives

A lot of bad things come through the pandemic but one of the good things is I get to spend more time with my kids.

Being able to drop Georgia off at school every morning, taking Frankie with me, coming home, putting Frankie on the bus, and then going and picking Georgia up at the end of the day — I can’t describe how important that is for me just to have that interaction and talk to her. When I pick up Georgia, I just talk to her about her day and see what made her happy and what made her upset that day, whatever it was. Just [having] that positive interaction with her is pretty special.

I coach both their soccer teams. And I think, selfishly, with my knowledge and experience with soccer, being able to coach and share that interaction with them is pretty special for me as well.

Being a dad is something that’s very special for me so I don’t think I took it for granted. I think it just has more meaning now being able to do those things.


Dan W. and wife
Thank you for sharing your story, Dan!

Inspired by Dan's story?

Share your story, too!


Non-Small Cell Lung Cancer Stories


Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)

The White Ribbon Project


Dr. Michael Gieske



Background: Doctor fighting for early lung cancer screening story Focus: Encouraging more screening for lung cancer

Heidi Nafman Onda



Background: Diagnosed with stage 3 lung cancer, started The White Ribbon Project to push awareness of anyone with lungs can get lung cancer
Focus: Encouraging lung cancer story sharing, inclusion of everyone in the community

Dave Bjork
Background: Underwent stage 1 lung cancer surgery, in remission for decades, hosts own cancer researcher podcast
Focus: Encouraging lung cancer story sharing, passionate advocate for early screening and biomarker testing

Anne LaPorte



Background: Spent 35 years as nurse, then caregiver to father & daughter both diagnosed with cancer, before diagnosed with stage 4 lung cancer, herself (EGFR+)
Focus: Encouraging patient and caregiver advocacy, biomarker testing for more treatment options, early detection

Bonnie Ulrich



Background: Focused on family and being the "fun grandma," 3x lung cancer survivor with a smoking history
Focus: Building empathy for all patients, regardless of smoking history, and encouraging early detection for everyone to save lives

Rhonda & Jeff Meckstroth



Background: Jeff was diagnosed with stage 4 lung cancer and given months to live, but his wife, Rhonda, fought for a specialist that led to biomarker testing and better treatment options
Focus: Education of biomarker testing for driver mutations, patient and caregiver self-advocacy

Pierre Onda



Background: Primary care physician whose wife, Heidi, diagnosed with stage 3A lung cancer. Built first white ribbon for The White Ribbon Project.
Focus: Building empathy for all patients, regardless of smoking history.

Chris Draft



Background: Chris' wife Keasha passed away from stage 4 lung cancer one month after they married. He's been a passionate lung cancer advocate ever since.
Focus: Leading with love, making connections to grow lung cancer community, NFL liaison

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Categories
Medical Experts Myeloma Oncologist

Dr. Vincent Rajkumar

Why Drug Prices are So High & How We Can Change It: Dr. Vincent Rajkumar

Dr. Vincent Rajkumar

Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, talks about drug pricing along with Alex Oshmyansky, the Founder and CEO of the Mark Cuban Cost Plus Drug Company. They discuss the impact of high prescription drug costs on patients and families, and why the current system needs to change.

The system is set up in a way that everybody benefits from a high price. The patient doesn’t want the high price, but it looks like everyone else is happy with the high price. The higher the price, the higher the margin. That has to change.

The interview has been edited only for clarity.



Introduction

Stephanie Chuang, The Patient Story: This topic is one that will resonate with so many. It’s focused on how we afford our drugs [and] how we afford [to get] our care, and at the heart of this are some laws and some other things going on. Our guest, Dr. Vincent Rajkumar, [joins] us.

Dr. Vincent Rajkumar: I work at the Mayo Clinic. I’m a hematologist oncologist and my disease specialty is multiple myeloma. I do research, education, and practice as far as myeloma is concerned.

I also have an interest in drug pricing, which started because I run a lot of clinical trials and work with new drugs. I do studies on racial disparities so I’m aware of the impact [of] cost of medicines and health care [on] various communities.

I also edit the Blood Cancer Journal along with my colleague Dr. Tefferi.

The more you delve into it, you find it’s not simple and that’s why no one is able to fix it. You just don’t even know where to start if you want to pick something.

Dr. Rajkumar

Initial reaction to the cost of prescription drugs

Stephanie, The Patient Story: I know that you’ve been working on this and you’ve been passionate about this for some time now, but do you remember how you felt when you first realized what was going on? What was your reaction?

Dr. Rajkumar: I was appalled. I wrote my first paper on [the] cost of prescription drugs in 2012, and it was focused on cancer — the high price of cancer drugs and what we can do about it. It was mainly because I worked on Thalidomide, which was the drug that was banned in the 1950s because it caused teratogenicity.

I’m probably the only physician in the world who actually used Thalidomide to treat leprosy, which was approved for, and subsequently started using it for myeloma. I was in India using Thalidomide for leprosy and it was given to us basically free of cost in huge buckets that you could use to treat patients.

Then I come to the US. I did research and we worked on all the Thalidomide trials. I led a trial that resulted in Thalidomide being approved for multiple myeloma in the US. And then I find Thalidomide costs $10,000 a month. This drug should cost $10!

Then I see the price of Lenalidomide launched at around $4,500 and then going up every year to $5,000, $6,000, $8,000, $10,000… and you’re going, What’s happening? That’s when I said I really need to understand the root cause of these problems.

The more you delve into it, you find it’s not simple and that’s why no one is able to fix it. It starts with monopolistic pricing then the middlemen and the whole infrastructure that you just don’t even know where to start if you want to pick something.

Impact of drug prices on patients and families

Stephanie, The Patient Story: You’ve worked with patients. You’ve also done a lot in clinical trials. What is that human element of it for you? What feelings do you have in terms of encountering what you have with drug prices and the impact on patients and their families?

Dr. Rajkumar: When it comes to drug prices, there’s an impact on the patients, who are the people actually affected by the disease, as well as the cost of taking care of the disease. [I] hear not only from patients that I myself treat but also from patients across the country. Since I’m an expert in a particular disease, I give talks [and] go to patient-family seminars. I meet patients from around the country and hear about the difficulties of access [and] affordability, and that’s one aspect.

Then there is the other aspect, which is high prescription drug prices and what it does to the public at large in terms of their premiums, co-pays, Medicare sustainability, taxes, and everything.

How did we get here?

Stephanie, The Patient Story: On every level, there’s this big impact. Let’s [lay] a foundation [to understand] how we got here [starting] with where you did back in 2003.

Dr. Rajkumar: Until 2003, Medicare covered only the drugs that were administered in the hospital or by doctors but did not cover prescription drugs. When the Medicare Modernization Act was passed in 2003, [it] created Part D, which provided a great benefit for our citizens: prescription drug coverage.

But when Medicare was authorized to provide prescription drug coverage to seniors, simultaneously, the law prohibited Medicare from negotiating the price of the drug. [This] meant that drug companies knew that Medicare would have to buy and provide drugs, but it did not have the ability to negotiate the price.

Over time, year after year, the price of the same drug went up as well as any new drug that comes in — the launch price kept going up. To the point where, after 2017, every new cancer drug was introduced at a launch price of over $100,000 a year and we know that that price will keep going up as well. That then puts a big strain on Medicare in terms of how much it costs as well as [on] individual patients because they still have to pay 5% over catastrophic, which for cancer treatment is very hard to reach.

The drug that I prescribe commonly — Revlimid or Lenalidomide — costs almost $18,000 a month so it’s very easy to get the $7,000 catastrophic threshold and then patients are stuck paying 5% of the cost. Five percent of $18,000 is a lot and you have to keep paying that month after month.

When Medicare was authorized to provide prescription drug coverage to seniors, simultaneously, the law prohibited Medicare from negotiating the price of the drug.

Dr. Rajkumar

Negotiating drug prices

Stephanie, The Patient Story: That’s incredible. We’re on this trajectory that’s not looking good because it feels like it’s just going to keep getting worse. But what was really interesting was you pointed out it can work. We have the VA that does negotiate prices, right?

Dr. Rajkumar: Yes. Every other developed country also buys and provides prescription drugs for [its] citizens. But in every other developed country, when a drug is approved, that’s just one or two steps. The first step is [that] the drug shows safety and efficacy. The second step is they negotiate the price and the price is determined based on the value that the drug provides.

The drug that provides a lot of value, like [prolonging] overall survival by several years, can be priced much higher than one that prolongs life only by a few weeks. They already have a value-based pricing negotiation set up and it works. It also works at the VA. The only place where it was not allowed was Part D for Medicare and, thankfully, that has been rectified now. Partially, not fully, but partially.

Stephanie, The Patient Story: Can you talk about that and how much more we’d have to go?

Dr. Rajkumar: What happened with the new law — that was signed this month — is that, number one, Medicare can start negotiating for drugs but only drugs that have been on the market for at least 7 to 11 years and only a few drugs. Starting [in] 2026, it would be 10 drugs that Medicare spends the most money on that they will be able to negotiate. Then each year, they can add another 15 to 20 drugs.

Over time, Medicare will be able to negotiate most of the drugs that cost a lot of money for [them], but it won’t be able to negotiate at launch. The price when the drug is introduced on the market can still be very high and can be high for many, many years. It’s only after 7 [to] 11 years that they can actually start coming down.

The second thing is that the law also capped price increases to no more than inflation. That helps because, otherwise, prices could keep going up every year and that would also put pressure [on] both patients’ out-of-pocket expenses as well as the system overall.

The most important benefit that was added is that copays will be capped at $2,000. Starting in 2025, Medicare patients will not pay more than $2,000 for the whole year as part of their copays so then they know what to expect. There’s no more 5% that keeps adding on and you have no idea of the budget. Now, they’ll be able to plan their lives knowing, Okay, even if I get a serious problem and I have to spend a lot of money, it’s going to be capped at $2,000 and that $2,000 can be spread over a year.

It’d be nice if we can negotiate at launch. It’ll be nice if there were no caps. There would be no out-of-pocket. But that’s some years to go. This is a good start.

Dr. Vincent Rajkumar

The rationale behind drug pricing

Stephanie, The Patient Story: Progress. We have to celebrate each win. What have you heard in terms of the rationale behind why it had to be that way or has to continue to be this way?

Dr. Rajkumar: Generally, the fears that I hear are, number one, it costs a lot to develop a new drug and that if they don’t set the price high, they will not be able to innovate.

The second is that the drugs are really worth the price and that’s how much they are worth.

The third would be that if you give this kind of power to Medicare, what if they ask for an unreasonable price? What if they are willing to walk away and set a price that is just completely not going to work for pharma? Those things have to be worked out. I think the fact that they’re not going to start negotiating for 7 [to] 11 years means that companies can make their money in that period anyway so those fears are overblown.

I also feel that if companies recognize that there is more money to be made with a blockbuster drug, they will innovate compared to [knowing they] can sell any drug for $100,000 because there is no ceiling so there is no value-based development of drugs. We have to incentivize that. If the drug is truly great, we are willing to pay more and, on the other hand, if the drug works only for a week, don’t ask me for $100,000.

There are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.

Dr. Rajkumar

Drug price disparity

Stephanie, The Patient Story: Not all things equal. You also pointed to the fact that depending on which pharmacy you go to, there’s a huge difference so there’s a little bit of control for patients in a sense. Can you talk more about that?

Dr. Rajkumar: I’ll be the first to say that we have a whole supply chain — the pharmaceutical company selling to the wholesaler, the wholesaler selling to the retail pharmacy, and then the patients paying their premiums to insurance companies who contract with pharmacy benefit managers to decide which drug to cover and which drug not to cover. Pharmaceutical companies can pay rebates to insurers. It’s a complicated system.

The system is set up in a way that everybody benefits from a high price. The patient doesn’t want the high price, but it looks like everyone else is happy with the high price. The higher the price, the higher the margin. That has to change.

What we find now is that there’s virtually no product other than prescription drugs where — it’s not like I can go and find a new MacBook Pro for $10 at some company and $5,000 at Apple. It just is not there. But you can find, [as] I posted on my tweet thread, [with] Gleevec or Imatinib, the brand name is $10,000 a month and you can find the same Imatinib at $39 at Cost Plus Drugs. You don’t see that kind of spread anywhere else with any other product. It’s happening because there are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.

Unless the patients are aware, you could be vulnerable to high prices, whether it’s insulin, Gleevec, a new cancer medicine, [or] an old medicine. What we find is where the prescription goes, how the prescription is written, [and] what you’re aware of as far as the coupons and rebates you get can really affect how much you pay for that medicine. And it’s not a small dollar amount.

Stephanie, The Patient Story: No, the disparity is quite large, actually. When you talk about how prescriptions are written, what do you mean by that?

Dr. Rajkumar: Unfortunately, there’s no rhyme or reason for these prices, and patients can really go and play around on some websites, like GoodRx.com. [If] you enter the name of a drug and order a 30-day supply, you would find a coupon for [a] 90% discount. If you order [a] 60-day supply or a 90-day supply, you may get a [bigger] discount.

For example, Lenalidomide, which is Revlimid. Medicare spends more money on Lenalidomide than just about every other drug. The drug costs the same whether it’s a 5 mg tablet, 10 mg tablet, 15 mg, or 25. [If] you take two 5 mg tablets, [you’ll] be paying double the amount — $36,000 instead of $18,000. I’m giving an extreme example but [for] many drugs, you have to really look. Taking the drug twice a day just because you want to break it down is not going to be the same price. You pay double.

Stephanie, The Patient Story: That’s incredible. This is a naive question, perhaps, but I think one that [many] of us are going to have. With the regulation, you’d think that there is some oversight in this process. I know it’s very convoluted. We don’t have to get into every little nook and cranny, but where is the oversight? How can there be such a disparity going from point A, which is the same, but in 100 different locations? It’s just all over the map.

Dr. Rajkumar: Yeah, and it’s hard to regulate. There is no transparency. If you try to say let’s not have rebates, then the people in the middle could just convert rebates into fees. This is how much I charge for me to buy the drug from someone and give it to you. They can add five different types of fees in between so that the price of the drug gets marked up.

I think government and regulators have to take a close look at this. The Federal Trade Commission [has] to really look into who’s making profits, how, what is competitive, what is anti-competitive — all of that has to be looked into.

Meanwhile, patients, as well as physicians, can be aware of the system. Be aware that it’s not just simply getting a prescription and getting it filled at the closest pharmacy. Be aware that your copay for insurance might be higher than if you just paid cash for the same drug without going through your insurance company. And that could be substantial.

After I posted a tweet, people were posting, It cost me $250 with insurance and $10 cash. Then why have insurance? Unfortunately, even physicians are not aware of all of the disparities. I think it’s just education, letting patients know all of the resources available, whether it be GoodRx [or] Cost Plus Drugs. I don’t have any affiliation with any of these people. All I’m trying to do is just educate people that there is a wide disparity in prices. You must be aware of it. Just check. Make sure your physicians check.

I tell my colleagues [to] make sure you ask patients about affordability. Can you afford this medicine? What is your insurance like? How much copay do you have? Just talking to patients and inquiring [about] their situation so that if somebody says, “No, doc, don’t worry. My prescription drugs are fully covered. I have a $10 fixed copay.” Fine, no problem. But if someone says, “I pay 5% of my prescription cost as a coinsurance,” then you better be careful how much that drug is billed, that you’re sending it to the right pharmacy.

Knowing your options

Stephanie, The Patient Story: That’s incredible. When you said sometimes cash is going to be cheaper than using insurance, would it have to be another party like GoodRx or Cost Plus Drugs or at the pharmacy itself?

Dr. Rajkumar: At the pharmacy. You could print out or show the GoodRx coupon or you could just do [it] online with Cost Plus. Many, many people are finding out that just going to Cost Plus Drugs and getting the generic might be much cheaper than paying the coinsurance and that shouldn’t be that way. It just doesn’t make sense.

Our healthcare system is very complicated and it is unnecessarily so.

Dr. Rajkumar

Advice for patients and families

Stephanie, The Patient Story: This was a huge eye-opening conversation. Is there anything else you’d like patients and families to know?

Dr. Rajkumar: I just want patients and families to know, number one, people are taking notice and people are aware. I’m really, really happy that the law was changed. That caps their out-of-pocket expenses for Medicare. It caps the price of insulin for Medicare recipients to no more than $35 a month. We have capped any price increases due other than proportional to inflation. Unreasonable price increases cannot continue for Medicare drugs.

Negotiation will happen. There [are] people who are becoming aware that this is a problem and have decided we have to change. People like me, Patients for Affordable Drugs, [and] many others are now taking notice that the others in the system are not playing well — pharmacy benefit managers, wholesalers, pharmacies — and we have to advocate for reform in that area.

I am also very happy that people like Mark Cuban have taken it on themselves. When the CEO was talking at Mayo, he said they started with 12 drugs and within a year, they’ve got almost 1,000 drugs at prices that are lower than any pharmacy in the US. Then now, hopefully, they can negotiate with pharmaceutical companies and get insulin and brand-name drugs. We’ll have to wait and see.

I don’t have any inside information, but patients should be aware that, thankfully, things are changing and they’re changing for the better. As long as they are aware that prices can be varied and physicians are aware, then even within the current system, they can find a lot of drugs, including cancer drugs, that are affordable prices.

Stephanie, The Patient Story: The easiest way of comparing the prices [is] going to Cost Plus Drugs or GoodRx to see what the prices are at different pharmacies.

Dr. Rajkumar: Exactly. Then they can check what are they paying out of pocket with insurance. It’s complicated because they may have a deductible that they have to meet with the insurance company and they may say, “I’ll just pay the $250 because then after that, I don’t have to pay anything.” There [are] a lot of things. Our healthcare system is very complicated and it is unnecessarily so.

Stephanie, The Patient Story: Tackling it one day at a time, one thing at a time. Also with people, not just Mark Cuban, but like you. You’re a leader in the space and you have the ability to impact and pull ears. I appreciate you and I’m hoping that we can do more of the same here with The Patient Story.


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Cancers Cytoxan (cyclophosphamide) dexamethasone Fludara (fludarabine) Ibrutinib (Imbruvica) Immunotherapy Lymphoplasmacytic Lymphoma/Waldenstrom Macroglobulinemia Non-Hodgkin Lymphoma Radiation Therapy Relapsed and Refractory rituximab (Rituxan)

Pete D.’s Waldenstrom’s Macroglobulinemia Story

Pete D.’s Waldenstrom’s Macroglobulinemia Story

Pete D. feature profile

Pete was diagnosed with Waldenstrom macroglobulinemia (WM) at 43. It is a type of non-Hodgkin lymphoma and is a rare cancer that begins in the white blood cells.

He shares the importance of educating yourself about your disease, communicating with your disease community, getting a good support system, improving your quality of life, and being your own advocate.

  • Name: Pete D.
  • Diagnosis:
    • Waldenstrom’s Macroglobulinemia
  • Initial Symptom:
    • Irregular blood test results during a regular workup for Crohn’s
  • 1st-line Treatment:
    • Cladribine
  • 2nd-line Treatment:
    • Fludarabine
    • Cytoxan
    • Rituxan
  • 3rd-line Treatment:
    • High-dose Cytoxan
    • Dexamethasone
    • Rituxan
    • Radiation
  • 4th-line Treatment:
    • Rituxan (short-term maintenance)
  • Ongoing Treatment:
    • Ibrutinib (December 2019 to June 2022)
    • Zanubrutinib (started July 2022)
    • Monthly IVIG

If you see one Waldenstrom’s patient, you’ve seen one Waldenstrom’s patient because we’re all different. We have the same disease, but our bodies behave differently.

Pete D. 2022 IVIG treatment
Pete D. timeline

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Pete D. 1997 family pic

Pre-diagnosis

Tell us about yourself

I live in the United States, in Pittsburgh, but I was born in Italy, came over when I was six months old, and got my citizenship when I was six years old. I had your basic American upbringing [and] had a little bit of Italian spoken in the household. I was bilingual initially and still retain some of that.

I’ve been working as an accountant for a long time. I gravitated towards working in financial systems because I also like playing with computers so I’m sort of a financial systems analyst, a hybrid of sorts.

I have a family and three kids. Two of them are married and two grandchildren came in the past year and a half.

Pete D. 2011 ed forum
Initial symptoms

At that time, I had just started a new job. I decided to change careers. A lot of people do that after they get cancer; I did it before and I decided I wanted to teach full-time. I was teaching part-time for a while and I got an opportunity to teach at Penn State’s Beaver Campus.

I was setting up classes and working during the summer. I was in this little office, like a closet. I started to feel tired. I thought, I’m just working too hard, trying to try to learn how to do all of this, and also prepare materials for classes.

Then I started having severe nosebleeds, but I thought, I just have a cold or something. They were pretty serious nosebleeds. It was very difficult to stop them, but for whatever reason, I was on that work train and wouldn’t stop.

[My gastroenterologist] called and said, ‘Did you ever call that number that I gave you?’ I said, ‘No, I got busy, I forgot.’ But he said, ‘It’s really important that you call that number right away.’

Pete D. 2018 with Terri in Oregon

It was so bad that I would end up with blood going down my shirt from the nosebleed. I would wipe it up or try to hide it at least and then get the heck out of there. But it happened fairly frequently so then I thought, something’s going on, but I’m too busy. Every once in a while, it would stop so I didn’t think anything of it. It’s a pretty good flow coming out of your nose, which is not normal even for someone who normally gets nosebleeds.

I also had a colonoscopy because I have Crohn’s disease so I do that every couple of years. Part of that is the blood test workup. At around the same time, my gastroenterologist called and said, ‘I saw some funny numbers.’ He might have said elevated protein, but it didn’t mean anything to me at the time because I didn’t pay attention to that stuff and I ignored it.

Three months later, he called and said, “Did you ever call that number that I gave you?” I said, “No, I got busy, I forgot.” But he said, “It’s really important that you call that number right away.” He didn’t say anything else.

Pete D. 2009 bald with Terri
Initial hematology appointment

I called the number and the receptionist said such and such hematology clinic. Right there I thought, “Oh, something’s up here. I don’t know, but this doesn’t sound good.” We made an appointment. My wife and I went and we did blood work.

We got to meet with a hematologist and he said, “Based on your blood work, it appears you have some type of lymphoma. I’m not sure what it is. We can do the bone marrow biopsy right now if you want, or you can schedule it.” I said schedule, but my wife, being my very important caregiver, said, “No, we’re doing it right away. I don’t want you putting it off.” We did that right there.

Bone marrow biopsy

It was an interesting experience, to say the least. They did numb the area, but I was not sedated — a bit uncomfortable, put it that way.

‘It appears to be a rare form of cancer that’s not curable. You should really think about getting your affairs in order.’

Pete. D 2010 baldie

Diagnosis

It takes a couple of weeks to get the results. We went back to see him and he basically said, “I’m not certain, but it appears to be a rare form of cancer that’s not curable. You should really think about getting your affairs in order.”

Getting a second opinion

We were in shock, but we sat back and said, “Okay, I’ve already had one chronic illness. Let’s add another one to it. Let’s move on. There’s got to be something we can do.” We said, “Okay, I appreciate your opinion, but can I get a second opinion? Because I can’t believe that I can’t do anything about it and I’m going to die in six years.” He did say, “Well, that’s your prerogative and that’s your opinion. I’ll be glad to give you the name of someone else who’ll probably be more than willing to treat you right away.”

I thought, well, that’s an odd attitude to take, so I’m glad that I’m getting [a] second opinion. The doctor that he sent me to was actually a pretty good doctor. Right away, I had a good relationship with him and that’s when I started treatment, right away at that point.

‘I appreciate your opinion, but can I get a second opinion? Because I can’t believe that I can’t do anything about it and I’m going to die in six years.’

Pete D. and wife Terri wine
Deciding to get a second opinion

It’s important, especially when you have a rare form of cancer, to seek out those centers of excellence if you can. If you can’t afford that or can’t travel to it, go to a larger research university-based hospital. Fortunately, I live close to one in Pittsburgh. We have the University of Pittsburgh. We have a lot of research going on there. I was able to go to both hospital systems that I can go to. They both have noted researchers there so that makes a big difference.

If you go to a community hospital — I’m not denigrating the hematologists or the cancer doctors there — but they may not even see a person with my disease in their whole career. It’s important to get in touch with a doctor that has experience with your disease or can consult with other doctors in their practice that do have patients with your disease.

Pete D. 2021 accordion

It’s important, especially when you have a rare form of cancer, to seek out those centers of excellence.

That first doctor had that attitude and maybe he was right, but that attitude of I know what I’m talking about so don’t question me. Even his staff, when I would call and say, “Hey, why is he requiring this test?” Or “Why does he want me to do this?” They would say, “Well, why would you question that?’ And wouldn’t even answer the question. I knew right then that definitely I’m not going to this place again.

The second doctor was much more open. He sat down with you. He drew charts. He explained. He said, “Okay, you have Waldenstrom’s macroglobulinemia and we’re going to treat it. This is how we’re going to treat it. This is standard treatment at this point in time and just because you see a lot of statistics out there, that’s an average. That’s just the median. Some people live shorter, some people live a lot longer. And given that you’re diagnosed at an earlier age, there’s a good chance you’re going to live for a lot longer than those six years that they’ve been quoting to you. Plus, I have the ability to consult with a lot of other researchers and hematologists in our practice and in our hospital system. We’ll discuss your case and we’ll treat you accordingly.”

What really hit home was wow, I won’t get to see them graduate. I won’t get to see them get married. I won’t get to see any of the special moments in their lives.

Pete D. 2019 with Terri at bridge
Processing the diagnosis

[My wife and I], we do everything together so right off the bat, my first concern was for her. What’s she going to do if I’m not around?

Then the thoughts automatically go to my children. I’m not going to be around. They’re in grade school and high school. They were seven, 14, and 16 at the time. What really hit home was I won’t get to see them graduate. I won’t get to see them get married. I won’t get to see any of the special moments in their lives. They won’t have me around. That was [what] hit me the hardest, not being there for my family.

You can’t bottle that up. You bottle that up, that gets even worse. There was a lot of crying, hand-holding, and just worrying about all of that. I think that’s normal and that’s healthy to let it out rather than bottle it up. I’m not saying you have to cry every hour of the day but that’s important to let that out.

Pete D. 2000 with kids at zoo

We laid it out to them straight and said, ‘Look, dad has cancer,’ and try to tell them in as simple a way as possible.

Breaking the news to the children

Once we found out exactly what I had, did a little research on the disease, and then found that it wasn’t an immediate death sentence — because I was diagnosed at 43, which is unusually early for this disease — we decided that because I had to go into treatment right away and I could be pretty weak from the treatment — could have some odd side effects — we felt it was important to let the kids know if I’m not going to be around to take them to soccer practice or any of their school events, they should know why.

We laid it out to them straight and said, “Look, dad has cancer” and try to tell them in as simple a way as possible, that it’s serious but it’s treatable and we just have to go with the flow and I’ll be around for a long time. I’m not going anywhere.

I always told my wife that she can’t get rid of me that easily. We’re honest and upfront, but we’re willing to answer any questions they had. The older ones were fairly intelligent to figure out how to find information, but we did try to answer their questions and were upfront with them. That worked for us.

We’re honest and upfront, but we’re willing to answer any questions they had.

Pete D. 2011 IWMF ed forum
Importance of doctor-patient relationship

What I liked about the second doctor I went to was, right away, I felt a connection with him that I didn’t have with the first doctor. Sometimes it’s a personality thing. It’s their demeanor; you click. It’s odd that that’s an important aspect of it, the human element of that, not just the scientific.

I’ve talked to other Waldenstrom’s patients and some, they’ll say, “You go to that doctor? Oh, I can’t stand that doctor.” Because they don’t connect, their personalities don’t work, they want something different — and that’s normal. That’s part of it also.

The important thing is to become educated. When that doctor said, ‘Okay, here’s the treatment plan we’re going to do. It’s fairly standard. We’re going to try this first.’ It was Cladribine and I did a little research on it.

Even then, I went searching on the Internet and found the International Waldenstrom’s Macroglobulinemia Foundation, hooked up with their online discussion list, and automatically started asking fellow patients. “What do you think of this? Will it work?” Basically, the response I got was there may be better options but as a first-time treatment, at that point in time, it was the least toxic so give it a shot [and] see if it works. It may or may not. And so we went with that.

Pete D. 2012 cooking

Initial treatment

I [started treatment] right off the bat in 2003 with Cladribine.

First relapse

Expectation setting

With Cladribine, the thinking was I should get two to five years of response. They don’t like to use the word remission if you’re in a recurring kind of cancer. That was the expectation and unfortunately, I didn’t even get that.

[I was getting] monthly blood tests at that time. We saw the numbers — their marker, which is immunoglobulin — the IgM marker dipped down a little bit but started rising right back up again. We knew it wasn’t working.

Pete D. 2013 wining
Dealing with scanxiety

Back then, you didn’t get your blood results immediately. You had to wait a few days and so that was nerve-wracking because you don’t know what to expect from the results. [There] was always that fear that, Oh, here we go. We’re going to have to go back to treatment again. You dread it but also look forward to it because maybe it’ll be a good result.

It’s better now because you find out almost right away what your blood work results are. I’m in a different position now. I know my body better so I know when things are going well and when they aren’t.

Second-line treatment

The next round was Fludarabine-Cytoxan-Rituxan. At that time in 2005, it was being used but there were rumblings in the research community that you might not want to do that.

FCR was found to be effective. I knew it would be more toxic in terms of side effects so they put me on antivirals and all the other stuff to minimize the side effects.

Every treatment has some side effects so it basically comes down to ‘pick your poison.’

Pete D. 2016 5K
Getting information on new treatment

At that time, Rituxan was fairly new. I questioned the doctor and our patient community [about] what they knew about it, how well it worked, and whether it was dangerous long term. In hindsight, that was a dumb question to ask but who knew back then?

Always go through that process of looking at what’s out there. I’m able to access some medical journals because I work at a university so I follow what’s happening in my disease and related diseases. I’m always looking at the research results of newer novel agents in related diseases — like CLL, WM, multiple myeloma, or other diseases — just to keep track of what’s up and coming and see what are the side effects.

With any novel agent — like for Waldenstrom’s, the newer ones are the BTK inhibitors and so I read up on the side effects of BTK inhibitors. Now granted, when it first comes out, you don’t have a long period of time to figure out the long-term effect.

A couple of the noted experts would always tell me, at least right now, there is no safe treatment. They said, in fact, the best treatment is no treatment at all if you don’t need treatment. But every treatment has some side effects so it basically comes down to “pick your poison.” The idea is what gives me the best potential for a longer period of quietness and minimal side effects.

I like to chart my own blood values so I would be able to see month to month how it was trending. It was exciting to see it actually going in the right direction.

Pete D. 2016 swing

It’s a balancing act, the kind of side effects you could experience. [With] BTK inhibitors, you could get elevated heart rhythm, high blood pressure, [and] elevated glucose levels. You have to deal with all of that. The flip side is your disease goes into a very quiet state for a potentially long period of time, but also, you have to take it every day for the rest of your life.

It’s also very expensive, which is another thing now that we have to consider. Very frustrating, at least in the United States, the fact that financial toxicity is becoming such a big issue.

Responding to the treatment

Right from the start, I like to chart my own blood values so I would be able to see month to month how it was trending. It was exciting to see it actually going in the right direction. I can’t say I didn’t think about it, but I could start focusing more on other things.

I actually enrolled in grad school and thought I’d work on a Ph.D. I did coursework in that and I thought, This is good. Every so often, I’ll get treatment. It’s not that bad and then [I] didn’t need another treatment and I’ll be okay. I went into a sense of security… maybe a false sense of security. But knowing that I was doing better [and] I felt better made a big difference compared to where I was before I started getting treated. That was the way I was looking at it.

Very frustrating, at least in the United States, the fact that financial toxicity is becoming such a big issue.

Pete D. 2009 family summer vacation in Italy

Second relapse

Symptoms

I did notice that I was starting to get a little bit more tired, a little bit more fatigued. I was watching the chart and would show it to the doctor. He would kind of smirk a little bit but then he would look at it. He would say, “Yeah, you’re right, it is going up but it’s not too bad yet and you don’t seem to have severe symptoms so go enjoy yourself. Have a good time.”

As much as I do, he knew the quality of life was important. He said, “Go, and then when you come back, we’ll talk about your options.” We did a month-long vacation to be with relatives and do all the tourist stuff in Italy and had a great time.

Towards the end, I was sleeping longer and started to get a cough that wouldn’t go away. I got some medicine there from a local doctor. It was some kind of injection of an antibiotic that they told me when I came back here was pretty strong stuff. I still was very tired and fatigued. I knew something was wrong. The trip back was not fun.

Pete D. 2018 Oregon
Complications

That relapse was pretty serious for me. I had a lot of things going wrong. It’s [already] unusual that I have a rare disease at a young age compared to other people but on top of that, I had other complications that go with that disease.

I had hemolytic anemia. Basically, my red blood cells would just be chewed away and I couldn’t replace them unless I got a transfusion so I became transfusion dependent. I don’t know how many blood transfusions I had. Maybe 16 of them over a period of three or four months.

I had cold agglutinin disease and cryoglobulinemia, which means, to add insult to injury, they had to warm the blood up in order for me to get the transfusion so that it wouldn’t clot. It was an interesting experience because they hadn’t used the blood warming machine in years so the nurses were kind of saying, “How does this work? Do you know?”

Pete D. 2019 snow

To compound things a little more, I started to have severe, lower back pain and we weren’t sure what was causing that. Did an MRI and really couldn’t tell too much from that. It became so bad.

At that time, my oldest son was going to grad school and we had to drive him to New York from Pittsburgh. I couldn’t sit normally in the car. I had to kneel down basically on the front seat and lean backward in order to just withstand it. It was important to me to get him there, get back home, and see the doctor right away. Priorities.

What we found based on [the] PET scan and further testing was a tumor at the base of the spine. It was lighting up. You have those FDG uptakes. They were able to biopsy it and found that it was a lymphoplasmacytic lymphoma, a Waldenstrom’s tumor.

We didn’t know the way to treat that. It seemed like every time we went to the doctor, there would be that team of doctors and med students, all scratching their heads [and] saying, “Huh. This is an interesting case.” Thank you. I feel so good about that. At least I have their attention, I guess, is one way to look at it.

Pete D. 2019 IWMF ed forum walk
Third-line treatment

My doctor admitted [and] said, “Look, I have not experienced this before. We’re going to try and figure this out. Here’s what I think we should do. I want to collect your stem cells, just in case. But first I want to knock your disease down with some heavy-duty stuff to get your immune system at least at a certain baseline.”

He suggested high-dose Cytoxan. I would lose my hair, which normally doesn’t happen in Waldenstrom’s but I did go through that. “We’ll do some Dexamethasone to go along with that, some Rituxan, and do radiation to the tumors.” I said, “Well, I think that makes sense, but I want a second opinion.”

I was involved with the IWMF at that time. I knew who the leading researchers were in the world and, fortunately, they’re in the United States — one at Dana-Farber, one at Mayo Clinic — and I asked if he would confer with one of them. He said, “Sure! I’d be glad to. No problem. I’ll call them.”

He called them — and I won’t name any names because the expert that he contacted said, “Look. He’s at a relatively young age. It might be a good idea to consider a stem cell transplant.” At the time, I was so weak and I had a feeling that there was no way I could withstand a stem cell transplant. It was not the right thing for me at the time.

[Then] he said, “But the treatment plan that you have for high-dose Cytoxan and Dexamethasone and radiation is a good treatment plan. It can work.” We went with that and my doctor said, “You pick. Which one do you want?” And he said, “You made a good choice. I would have gone with that, too.”

Pete D. 2019 wine with Terri
Shared treatment decision-making

Working with that doctor, he was willing to go back and forth. I get this a lot now from him and from the current doctor that I’m seeing. They both said, “Here are your options. Which one do you want?” It’s like, “Well, I’m not the hematologist. How am I supposed to know?” That’s the first thing that comes [to] your mind. But then you take a step back and say, Yeah, he’s right. There are options.

Sometimes, it is up to the patient what they’re willing to tolerate and what they think they can tolerate in terms of the treatment protocol, side effects you could get, and things along those lines.

I guess they take their cues from what the patient is like and then get an idea of that. Some patients are more risk tolerant, others are not, and so they go with that. They don’t want the patient to say, “Well, you told me to do this. I should have done that.” That’s part of it, too.

Pete D. 2020 winemaking

Sometimes, it is up to the patient what they’re willing to tolerate and what they think they can tolerate.

The part where it hits home [is] that it’s part art and part science. There’s no clear definition of what is going to work and what isn’t, especially for many cancers. People don’t realize that they’re making gut-level decisions based on what they know at that point in time and they’re never certain if it’s the right decision or not.

I’ve told other Waldenstrom’s patients that if you see one Waldenstrom’s patient, you’ve seen one Waldenstrom’s patient because we’re all different. We have the same disease, but our bodies behave differently. We have different genetic aspects of our disease. We just belong to the same family in a sense, but we’re all different.

Responding to the treatment

It was a several months process of going through treatment and radiation and I got a very good response from it. I even had surgery to remove part of the tumor.

Pete D. 2016 5K

Normally, [a WM patient] has immunoglobulins circulating in the blood at an elevated level. After this treatment, after so many months, those no longer exist. I don’t have them to the point where it’s now below normal and it’s been that way since 2010. When they do a bone marrow biopsy, it’s not in the bone marrow either, which is also unusual.

It got to a point where somewhere around 2015, five years out, my doctor said, “We can maybe start saying the C word for cure because this is really strange, really unusual.” Well, he shouldn’t have said that.

Dealing with neuropathy

Because of the tumor, my right foot and right leg have neuropathy in it. I went through a process of having to deal with being weak. I was so weak that I was in a wheelchair. Then I went to a walker and then to a walking stick.

Pete D. 2022 playing bocce

I tried to keep working the whole time, full time, because I was the main breadwinner for my family. I took public transportation so my wife would drive me to the bus stop. She would haul the wheelchair out, wheel me to the bus, I would get on the bus, and then get off.

It was fortitude. Just one day, then the next day, then the next day — just keep moving. Over time, it did get better because initially, I was lucky [if] I could walk 50 feet down the sidewalk in front of my house. My wife, fortunately, forced me [and] said, “You have to get up. You can’t stay sitting down and being sedentary. It’s just going to make it worse. Just get up. If you can’t make it, we’ll turn around and go back.” And that’s what we did.

Losing independence

That was very difficult. I couldn’t even go into the shower or anything on my own. My wife would have to help me and wash me initially and that was very demoralizing because I’ve never been in that kind of situation.

You reach a low point when you say, “Well, jeez, I’ve done everything. I’m trying to do the best for my family and here I am. I can’t even take care of myself. How am I going to be able to take care of them? And how long is this going to last? My goodness. Day after day, I have to do this. When is it going to get better?”

I couldn’t even go into the shower on my own. My wife would have to help me and that was very demoralizing because I’ve never been in that kind of situation.

Pete D. 2021 IVIG

All those thoughts [go] running through your head. I don’t know what got me out of that situation. Definitely, it was a support system that I had, my wife and family and the IWMF community of patients and caregivers around the world, who sent prayers and positive thoughts my way – but there’s more to it than that.

You can’t let that low moment pull you even further down. In hindsight, I can say that. But, at the time, my mindset was, Okay. This is not good. I know it’s not good. If I have to cry, I’ll cry, but I have to move on. I have to keep going. I have to find a way to figure out — can I swing my leg over the tub? One little thing, at least. Can I dry one part of my body on my own? Can I try little things and keep working at [them] and find positive things to do rather than dwelling on what I can’t do?

Financial impact

It was difficult because, with our family dynamics, it was my salary basically that supported the family. My wife worked also but there was a disparity in the salary so to not have me earning money was a serious consideration.

Initially, even my manager — very understanding and very supportive — said, “Look. Do you want to go on leave? Do you want to go on disability leave?” I said, “Oh, I hadn’t thought of that.” Then when I looked into it, I saw, That’s 60% of your salary and I don’t know if I can afford that, and so I didn’t do that. I did it when I had to but that aspect of it was also weighing on my mind.

Pete D. 2020 PGH walk with Terri

There was no way around that because we have bills to pay. Back then, there was no GoFundMe and I wouldn’t have done that anyhow because that’s just not me — not to say that’s not the right thing for some people. For some people, that’s their only option and I applaud that. But it just wasn’t me.

I had to find a way to move on. Maybe [what] also helped me recover was that I got to support my family. I have to get better. I have no choice.

Finding a new tumor

I did notice that I was getting more numbness and tingling. I knew something was going on, possibly the little tumor was getting larger. There were other things going on and so I combined a couple of things that occurred at that time.

Pete D. 2021 hair donation with Nicole

I also went to see a surgeon because of that numbness. He said, “Ah, it’s a classic schwannoma.” I thought, Okay, another word I have to learn. Basically, it’s a benign tumor so I said, “If you don’t think it’s my LPL coming back or my Waldenstrom’s coming back, then I’ll go for that because I’d rather believe that than anything else.”

When they opened me up and did the biopsy, they got most of it but it was so tangled with the nerves at the base of the spine that they couldn’t get it all out. They said, “Sorry, it’s an LPL tumor. We’re going to do some more radiation then we’re going to follow up with some treatment.”

Treating with BTK inhibitors

Fortunately, at the time, there was some research being done that showed that the new BTK inhibitors, like Ibrutinib, had a good response rate on people who had extramedullary tumors. We decided to go with that, conferred with the doctor, checked with a couple of specialists out there, and said, “Yeah, let’s give it a shot. It can’t hurt.” Depends on what you call hurt, but it doesn’t make the disease worse.

I get other side effects that I have to deal with now. It’s now been a couple of years since I started that.

I switched to a different BTK inhibitor because I read that it had [a] better response rate among people with extramedullary tumors so I thought, Well, let’s switch. It’s not going to hurt me. I’d rather go for what’s best at this point in time.

I won’t know until my next PET scan — I get it every couple of years — what kind of effect, if any, it may have on my LPL tumor that’s still there.

Pete D. 2022 IVIG treatment
Effectiveness of Ibrutinib

I have not had scans since I started [but there’s] less tingling and numbness. Now it’s just normal numbness, put it that way. It’s always numb, but now, I don’t notice any odd sensations.

Decision to delay scans

I’ve had three or four PET scans so far in my disease course. You don’t want to get too many of those because you don’t want to build up radiation in your body. We try and extend that out as much as possible.

IVIG treatment

The IVIG, I get because I have hypogammaglobulinemia — all my immunoglobulins have been wiped out. The treatment works so well that it killed the bad cells and the good cells.

For a lot of people, if they have low levels of immunoglobulins, they’re not impacted too badly. But for me, I would get recurring sinus infections and other infections. The antibiotics would work [but] when I stop the antibiotics, it’d come right back. We felt the best thing for me to do was to go on IVIG monthly.

Pete D. 2019 with family at Watkins Glen

The blood products are collected from plasma donors, and it takes [up] to 10,000 plasma donors to make one treatment bag of IVIG. It’s an amazing thing that happens.

I’m always very appreciative of plasma donors. I am forever grateful because it keeps me going. If you know people, tell them [to] donate plasma.

The process that I’m going through now is that I’m on the BTK inhibitor and I get IVIG every month. Fortunately, I have a decent medical insurance plan that doesn’t cost me anything other than the monthly premium. But when I retire and go on Medicare, we’ll see. Things could be different.

Pete D. 2017 IWMF Board Meeting

Living with Waldenstrom’s

Knock on wood, I feel fine. I continue to work full time. I teach a class or two on the side when I get the opportunity because I enjoy teaching.

I also volunteer for the IWMF. I’ve been on their board for almost 10 years now and I’m currently the chairman of their board of trustees. It’s not a paid position by any means. I do it because I feel like I’m giving back to the people that helped me when I first started out.

I continue to learn more about the disease and to keep up with what’s going on. It keeps me in tune with what’s happening and I get to continue to engage with my second family. I appreciate that. I appreciate their support and also being able to support them in turn.

‘Why me? Why do I have to be unusual in the first place? What did I ever do to deserve this?’

Pete D. 2019 IWMF ed forum
Access to information

Important for any cancer patient, regardless of what type of cancer you have, to go visit Dr. Google. Not to say that you should believe everything that’s out there but go to the sources that are credible, like the American Cancer Society [and the] Leukemia & Lymphoma Society.

If you have an organization that’s specific to your type of disease, definitely hook up with those people.  For my disease, it is the International Waldenstrom’s Macroglobulinemia Foundation. You’ll get not only the latest information specific to your disease and what treatments work well but also, just as importantly, the opportunity to hook up with the community of people that are traveling the same journey you are. You can share your stories, your thoughts, your fears, and your experiences.

There are moments when you really start to think about, ‘How bad off am I? How bad is this going to get?’

Pete D. 2022 family wine
Looking for a cancer patient community

Just from joining the IWMF, it’s like I have a second family. The support that I have through them is invaluable. Every time I have a relapse or have something going on, I ask a question [and] I get a response right away. I get different responses, of course, but then I can make a more educated decision on what’s going on. I, at least, have a sounding board so I think it’s important to not only have a good medical team but also a good support system — not only from your local friends and family but also from your disease family if you can.

Coping with a rare cancer

At first, what goes through your mind is, “Why me? Why do I have to be unusual in the first place?” Then on top of that, I get something even more unusual. “What did I ever do to deserve this?” Then you say, “Well, maybe this is it for me.”

Pete D. 2014 red rocks

There are moments when you really start to think about, “How bad off am I? How bad is this going to get?” Because they don’t know what’s going on, I don’t know what’s going on, and we don’t know how to treat it. You get to a low point and you say, “Okay, I’m going to cry it out.” You do that then move on and see what [you] can do.

At a certain point, you reach [the] realization that it’s either going to work or it’s not and you have to get a level of comfort with [it]. Hope for the best and say, “I’m not ready to go anywhere. But if it doesn’t work, I gave it my best shot.”

The approach I took was that I have to hope for the best because I want to be around. I’m unique. I can’t help that and that’s just the way the cards were dealt with to me. I just have to deal with that.

At a certain point, you reach [the] realization that it’s either going to work or it’s not and you have to get a level of comfort with [it].

Pete D. 2021 with Sofia
Self-advocacy: The importance of speaking up

Even [for] something as simple as a blood test, they had to keep the blood warm. You had to tell them that. Not to minimize [or] denigrate those nurses, but you had to impress upon them, “Look, I have cold agglutinin disease. Please make sure you keep it warm. Wrap it in a towel, do something, and get it to the lab right away.” Sometimes if you don’t tell them, they would not realize it and I understand that. You have to speak up.

Don’t be afraid that they’re going to think that you’re trying to tell them what to do. Don’t worry about that at all. Just tell them — even if they give you a nasty look, you got the message across. They heard it and they say, “Yeah, I know.” That’s fine. Great. I’m glad you know. Take care of it.

You’re much better off than if you didn’t say anything at all and it got messed up and they had to poke you again three or four times just to get your blood drawn.

Having cancer gives you a renewed focus on the fact that we don’t know how long we’re going to be around.

Words of advice

I wish I had a magic solution because I’m one of those people that a lot of people say, “Oh, you look so great.” Yeah, but still, I have this thing hanging in the back of my head all the time. Even though I know I’m doing well, I’m always thinking, Well, when is it going to get worse? When am I going to get the next major relapse? It’s there. I don’t know if you want to call it PTSD or what you want to call it.

Pete D. 2021 looking at Ollie

Having cancer gives you a renewed focus on the fact that we don’t know how long we’re going to be around so you try to enjoy whatever you can, even if it’s just a nice dinner. It’s fantastic.

Don’t dwell on the things that are negative because that just makes your quality of life even worse. The important thing is to improve your quality of life and work on that. Even though you may be feeling sick — you may not be able to get out of bed; you may not be able to get up from the couch — find things that you find joy in and try and focus on that.

It’s not easy. You can’t always achieve that. But that’s what guides me and what gets me going. My family and things like that help me.

Don’t dwell on the things that are negative. The important thing is to improve your quality of life and work on that.

It’s important to improve your quality of life. I hate to be a downer, but you may still be in such a situation that’s very serious and you may not come out in a good position. But it’s the quality of life, not necessarily the quantity that’s important so trying to do whatever you can to improve your quality of life is very important.

Be your own advocate. If they want to give you something, say, “Why are you giving me that?” If they give you a set of pills and it looks different than [the] day before, ask them about it because they’re busy and sometimes they say, “Oh! Oh, that was for the patient in the other room, not you.” I’m not saying that that happens all the time, but it can happen so it’s important to be your own advocate. Be educated and be positive.

Hopefully, together, we can give some people some valuable information and help others that are traveling the same journey.

There are going to be good periods and bad periods. Resign yourself to that and find things that help you get through bad periods.


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Non-Hodgkin Lymphoma Stories


Erin R., DLBCL & Burkitt Lymphoma, Stage 4



Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
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Emily G., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Pain in left knee
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FAQ Hodgkin Lymphoma self-advocacy

Patient Self-Advocacy | Hodgkin Lymphoma

Patient Self-Advocacy

A Conversation on Speaking Up for Ourselves

From the first symptoms of cancer to how we communicate with our doctors, the importance of patients advocating for themselves is key to getting through diagnosis and treatment in the best way possible.

Four incredible Hodgkin lymphoma patients/survivors share how they were able to advocate for themselves throughout their cancer care, including during the beginning of the COVID-19 pandemic!

  • Delishea A. was 30 and living in the rural South when she was diagnosed with stage 4B Hodgkin lymphoma. She shares the importance of speaking up about first symptoms and the power of getting a second opinion and other options.
  • Kelsey R. was diagnosed with stage 2A Hodgkin’s on her 26th birthday! Five years later, she reflects on how she was able to do her own research to get better treatment for herself and how she was able to develop the confidence to speak up.
  • Tylere P. went through treatment twice for Hodgkin lymphoma, first as a 24-year-old and then again a year later. He dives into how drawing boundaries with his own family was an important step in self-advocacy and how he dealt with surprise bills (and financial toxicity).
  • Erica H. was diagnosed with HL right before the pandemic hit. She talks about her experience as a Latina, feeling dismissed for her cultural concerns about treatment. She also shares the importance of speaking up, especially during the COVID-19 pandemic where there may be medical burnout.

Special thanks to Seagen for its support of our patient program. The interview has been edited for clarity.



Introduction

Stephanie C. in the hospital

Stephanie Chuang, The Patient Story: I am the founder of The Patient Story and also a cancer survivor.

I was diagnosed with non-Hodgkin lymphoma a few years ago and I’m grateful to be in remission but this is a topic that is very near and dear to my heart: self-advocacy. This entire conversation will be about speaking up for ourselves.

The Patient Story is created out of my own experience. I wanted to hear from other people and that’s what was going on when I started The Patient Story, where you’ll find hundreds of patient voices and videos and hopefully, that will help with [the] connection.

Stephanie Chuang in hospital bed

We’re bringing this to you with our partners, Imerman Angels, an incredible organization. I used Imerman Angels when I was going through my treatment. They help connect you one-on-one with cancer support. Whether you’re a patient, caregiver, care partner, survivor, [or] previvor, they will make sure that you meet someone who’s close to what you’re about to go through.

We want to say thank you to our supporter, Seagen and Hodgkin Hub, for its support of our patient event and program. Incredibly important to get partners on board who believe in this vision of helping patients and care partners everywhere.

The Patient Story and Imerman Angels have full control of the entire content. It’s not intended to be medical advice so please, please consult your healthcare provider and team if you’re having to make medical decisions.

Delishea A.
Delishea A.
Erica H.
Erica H.
Tylere P.
Tylere P.
Kelsey R.
Kelsey R.

Delishea A.: I’m from Louisiana. I was first diagnosed in June 2020, right before I turned 30. Just graduated as a medical biller and coder, and I’m about to get back [into] the workforce.

Erica H.: I am from San Francisco, California. I was diagnosed with Hodgkin’s lymphoma stage 3B [in] September 2019 and in remission as of March 2020, right as the pandemic was hitting off. I belong to a runners club and the motto is [to] start slowly and then taper off, so in all things — starting my business but especially doing treatment — that motto was really important.

Tylere P.: I’m currently in Grand Rapids, Michigan. I was diagnosed with Hodgkin’s lymphoma in 2014. As of August 1st of [2022], I just hit my five-year anniversary of no chemo so that’s pretty big. I am a videographer and photographer. I also own an insurance agency so I got a lot going on these days.

Kelsey R.: I’m from Bentonville, Arkansas, which is my hometown, but I actually live in Austin, Texas. I was diagnosed with stage 2A Hodgkin’s lymphoma in September 2017 and I’ve been in remission since March 2018. I am an architectural historian and a writer. I dabble in comedy writing and screenwriting. I also own a vintage furniture company.

Stephanie, The Patient Story: Each of our panelists really represents a different situation so we’re going to be able to hear a range of experiences.

Delishea A. September temp move

It felt like I had to really talk my way through it, constantly let them know that this is not normal.

Delishea A.

“Doctor Knows Best”

Stephanie, The Patient Story: I don’t know if you felt that. I’ve definitely felt this, “I don’t want to be that patient.” I don’t want to annoy my doctor. I don’t want to speak up too much. They’re trained; I’m not.

There’s a lot to talk about here when we say self-advocacy because it is our [life] after all. Delishea, there are different instances of this for you, but it took a while to actually get diagnosed. Even before getting diagnosed with Hodgkin lymphoma, can you describe what happened?

Speaking up about 1st symptoms

Delishea: The symptoms lined up with COVID symptoms. I also had uncontrollable itching. At first, I was just discounting the itching as a dermatitis issue. I know I was tired a lot.

During that time, we [had] the stay-at-home order. We weren’t working so I thought it’s just from being tired because I worked, worked, worked before. Each symptom seemed like I could discount the actual symptom for something else.

Delishea A. outside

What really brought me to the doctor was a lump on my neck and he immediately did tests — MRI, bloodwork — and it came back as lymphoma.

Stephanie, The Patient Story: You had described feeling during that time, the run-up to getting the actual diagnosis, like you were trying to tell people, “I have all these things that I’m feeling. I know it’s not right.” Can you describe what that felt like for you?

Delishea: It felt like I had to really talk my way through it, constantly let them know that this is not normal. It took a little bit.

Each symptom seemed like I could discount the actual symptom for something else.

Delishea A.

Stephanie, The Patient Story: It can be hard to fight through that. Erica has a very specific situation, too, in terms of a cultural difference where you felt really unheard. Can you talk about what happened there?

Erica H.
Speaking up about cultural differences (and being listened to!)

Erica: I had symptoms that I did present to my doctor. There wasn’t a lot of lag time between getting seen by my primary and then getting tested. When I finally met with the oncologist, it was really trying because, at that point, I had a feeling I had Hodgkin’s lymphoma. All the signs were there.

I was going into the appointment knowing I was going to get that diagnosis. I wanted to present my needs and that was a lot of cultural… I wanted to have conversations [with] a nutritionist about how I can integrate that care and it wasn’t listened to. There were statements that made me really uncomfortable.

When I stepped out of the appointment, I turned to my husband and said, “I cannot go through this process if I’m not going to be able to have a conversation. I get that I have to have treatment, but I need to know that they’re going to listen to what I need to get through this.”

I wanted to have conversations [with] a nutritionist… and it wasn’t listened to. There were statements that made me really uncomfortable.

Erica H.
Erica H.

I started exploring different doctors until a friend said, “Why don’t you just look within the network that you’re in? Maybe there’s another oncologist.” It’s already uneasy, but my primary concern was that I wanted to be heard.

I was fortunate enough to find a doctor who was willing to do that. Basically, they said the same thing as the first doctor, but their statements were presented [differently]. He explored some of the things that I wanted to look into.

Stephanie, The Patient Story: I want to highlight that because it seems small. At the end of the day, both doctors agreed essentially on the same thing. They had the same opinion about treatments. But one doctor dismissed you right off the bat because they [didn’t] know about this cultural thought process with treatment. The other one, what did it mean? What is that difference? It seems minor, but it’s pretty big.

My primary concern was that I wanted to be heard.

Erica H.

Erica: It was big because it just showed being able to advocate; that was really important for me. I’m an admissions consultant so I teach students how to self-advocate. Now, I was actually putting into practice for [myself] in a health crisis. I know that they are the experts in [the] medical field but I am an expert on how I feel.

Erica H.

Not having my feelings dismissed was so important. I had done readings on all these ideas, like mind-body [connection]. I want it to feel positive and that doctor made me feel positive about this — that it wasn’t going to be as scary as it already was for me.

They understood I had a whole team around me who would voice their concerns and opinions on what I should do and I could have conversations with him about that. Knowing how to respond to those people, he became a partner in this process of treatment and healing.

Stephanie, The Patient Story: I want to highlight that word: partner. That’s what we’re aiming for. Everyone feels like they’re part of this.

Not having my feelings dismissed was so important.

Erica H.
Kelsey R.

Shared Treatment-Decision Making

Stephanie, The Patient Story: Shared treatment-decision making: what does that mean? It means that it’s not just one-directional. It’s not the medical team only and the doctor only. I’m part of this. This is my life. I know that you have the training, but I want to be empowered in my care.

Kelsey, [your story] is actually a really great example of advocacy. If you could give a little [background] of what your treatment was, the impact, the side effects you were feeling, what got you to research, and the impact of the research.

Doing my own research and changing treatment path

Kelsey: I had stage 2A Hodgkin’s and was prescribed ABVD chemo — I believe it was four cycles, eight treatments total. After, I think, my fourth treatment, I ended up in the hospital with neutropenic fever. I experienced really low white blood cell counts during my entire course of treatment, starting right after my first chemo.

I picked up something small [and] ended up with pneumonia over Christmas.

Kelsey R.
Kelsey R.

It was the middle of winter [with] a lot of colds going around. I picked up something small [and] ended up with pneumonia over Christmas in Arkansas. I was in the hospital for four or five days dealing with that and that was probably the lowest point in my treatment.

When I got back to Austin, I asked the doctors and nurses if I could add Neulasta to my regimen, which would boost my white blood cell count [and] make me less susceptible to infection. They told me that I could not do that because it would interact with the Bleomycin in the ABVD.

I was already experiencing some side effects from Bleomycin. It can cause lung scarring. I wasn’t having that issue, but I was just scarring all over my body. I could tell it was not great. I was wondering if it’s doing this to my arms, what’s it doing to my lungs?

I found some recent studies that had shown [that] the Bleomycin could be safely removed from the chemo.

Kelsey R.
Kelsey R.

I did some research and I found some recent studies that had shown, I believe, people who had 12 total ABVD treatments, so six rounds, if they were clear after their second cycle, then the Bleomycin could be safely removed from the chemo. I brought that to my doctor and said, “I know this isn’t my exact situation and I have fewer treatments, etc., but do you think that this would work for me so that I could add Neulasta so I don’t end up in the hospital again? Because I feel, at this point — because I’d already had a clear scan — that that’s a greater risk to my health.”

My doctor agreed with me and actually commented that he’d just been discussing that research at a conference he’d just been to. I removed that from my regimen and I’ve been in the clear for five years almost so seems to be fine so far. I remember his wording exactly was, “Yeah, that makes a lot of sense.” That worked out for me and I was able to take the Neulasta to get my white blood cell count up and did not end up in the hospital again.

Kelsey R.

I was so terrified that someone I would come in contact with had a roommate with the flu or something because that could have been really, really bad for me at that point.

Kelsey R.

Stephanie, The Patient Story: Now we’ve been through COVID, we understand more [about] being immunocompromised and feeling like [we can’t] just go anywhere. Everything’s going to infect me. It could lead to hospitalization, which it did for you. Describe the impact [on] your psyche or just your emotions to feel like I can’t do anything right now because of this treatment.

Kelsey: I don’t think I quite understood — at the beginning of treatment and when my white blood cell count got really low — the impact of that and what that meant for me. I felt like always having to be in a bubble and, [as] you said, a lot of people got a taste of that, especially at the beginning of the pandemic when we were all terrified.

Kelsey R.

Once I ended up in the hospital — it was a really nasty flu season — the doctors were being so careful with me and that really freaked me out. That time in the hospital was really, really rough. Before I was able to get the Neulasta, I lived in isolation, which I was doing already. I’m pretty sure I picked this up in line at a pharmacy actually.

I remember my dad would wipe down the cup when we stopped at the gas station. You feel extremely vulnerable and I was so terrified that someone I would come in contact with had a roommate with the flu or something because that could have been really, really bad for me at that point.

Stephanie, The Patient Story: You had no defense systems.

Also, you had research experience, being in grad school, so [you had] access [and] the know-how to research this stuff, but what about other people who don’t have access? You were able to empower yourself with that knowledge, you brought it to the doctor, and that started this very important cascade of events. Any last thing you want to say in terms of the ability to research and know? What got you to speak up? Did it take much?

Kelsey R.

Kelsey: It was just that stay in the hospital. There was a man who was dying in the room next to me and crying out a lot. It was a really, really scary experience. There was a lot of infection around me and the doctors were scared that I was even in the hospital because it could kill me. That fear is when it really hit me how very, very serious this is.

I’m a chronic researcher. I just will research things to the point where it’s not healthy sometimes and so this was something I just really was looking into because I was looking for any option to be able to get the Neulasta. This is why I think sites like The Patient Story are so important because if I had had someone who had been through that before to tell me this, it would be a lot easier and a lot less scary.

It really hit me how very, very serious this is.

Kelsey R.
Tylere P.

I remember asking, ‘Can I just not receive the Benadryl?’ The side effects from the Benadryl, I notice more than the side effects from the chemo

Tylere P.

Stephanie, The Patient Story: Tylere, I know for you it was a little bit different. During one of your treatments, they had Benadryl — a very common medication that’s given to help avoid allergic reactions but for you, that was kind of the problem. Can you share that with us?

Speaking up about medication side effects

Tylere: Going through the chemo, I never had any bad side effects. I still had an appetite. The worst thing that happened was losing my hair.

I remember getting Benadryl one day before they were giving me chemo and I was knocked out afterward. I would drive myself to my chemo appointments and the hospital was about an hour away. This is when the cancer relapsed.

It took about an hour, an hour and a half, for the chemo that I was on, and then I’d have to stay for an extra hour and a half just for the nurses to feel comfortable letting me go home because of the Benadryl. They didn’t want me [to fall] asleep while I was driving, which is great, but I also didn’t want to be in the chemo chair any longer than needed.

Tylere P.

I remember asking one day, “Can I just not receive the Benadryl? Can we just see what that does? Was that a possibility?” They checked with the doctor. They said, “The doctor said that’s fine. We can forego that.”

After that, getting the chemo treatments was a much easier experience for me. The side effects from the Benadryl, I notice more than the side effects from the chemo, even though I’m sure my body was going through a lot through the chemo.

Stephanie, The Patient Story: I love this example because we know that it’s supposed to help, but you knew your body. You knew that you weren’t having a reaction.

When we talked about this, you said you were so drowsy [that you had] to depend on somebody else. You’re a very independent person. Can you describe that impact for you?

Mentally, it was nice to be able to do things on my own.

Tylere P.
Tylere P.

Tylere: Being independent, I like to do things on my own. I didn’t want to have a friend or family have to be with me during chemo and be an inconvenience for them. Mentally, it was nice to be able to do things on my own. If I’m able to go get chemo by myself, that’s fine. I was there every couple of weeks for over a year plus. It wasn’t anything that I wasn’t used to.

The first few times getting treatment, I had friends and family there. After that, I was like, “Well, I don’t want you all waiting around for four or five hours.”

Stephanie, The Patient Story: Being able to speak up for yourself in that instance allowed you to have control of that again because otherwise, you’d be, “I need you to drive me.”

Being independent, I like to do things on my own.

Tylere P.
Delishea A. family

Protecting Our Boundaries (+ Energy!)

Stephanie, The Patient Story: Protecting boundaries and energy: what does that mean? It’s “I don’t want to offend other people.”

Delishea, you lived with your sister for part of the treatment and you talked about mama bear. Could you just describe what that meant?

Hard conversations with parent caregivers

Delishea: I can’t imagine seeing your child go through [something]. [In] the beginning, she was very hands-on. She was the one that had to take me to the appointments; really wasn’t anybody else stepping in and I just call that mama bear.

But it came to a point where I was like, “Let people help to make things go smoothly.” When I changed doctors, my sister had to be my caregiver and she didn’t really have as much access to coming to the appointments. Instead, we would record the appointments for my parents so they can listen in and if they had questions, they gave us the questions and we would ask for them. But other than that, it was a rollercoaster.

I’m still processing what I’m going through and I don’t have the mental space to nurture your feelings about it, too.

Delishea A.
Delishea A. with sister

Stephanie, The Patient Story: Moms are great, but there is a balance, right? It’s wonderful getting that support, but at the same time, does it feel like I have to manage other people’s feelings, too?

Delishea: Yes. Big time. When going through it, your emotions [are] all over the place. I don’t know if it was the chemo, the anxiety, [or] all of it together. My caregivers and my support system [were] going through it with me so I was very cautious of their emotions, too. I don’t think anybody knew how to handle it.

A lot of times, I would bring my earphones and listen to music or just be honest. “I don’t feel like talking. I don’t feel like being bothered.” They know me [and] my personality so I didn’t think they were too offended, but I have to set those boundaries. I’m still processing what I’m going through and I don’t have the mental space to nurture your feelings about it, too.

Delishea A. with sister after radiation
Delishea with her sister
Tylere P.

Stephanie, The Patient Story: I am really thankful that you’re bringing this up. It can be hard to talk about, but it is so true and I’ve talked with many other people who feel the same way. As soon as we get diagnosed, [there’s this feeling] of I don’t want to hurt this person’s feelings. There’s just a lot going on. I appreciate that you set an example of [taking] care of yourself first, [giving] yourself some grace. It’s okay to say no.

Tylere also had an experience having to learn how to protect boundaries and say no. Describe a little bit more about your mom, what she does, and how those first appointments were for you.

Tylere: My mom is a nurse practitioner and she’s actually the one who told me that I have cancer. We noticed I had a swollen lymph node. I asked her, “What does that mean?” She was like, “Well, it could either be just some sort of infection or worst-case scenario, it could be cancer.”

We got that checked out. After a week of antibiotics and then being told I need a CT scan, kind of figured, okay.

Tylere P.

I was in a conference room at work and had all my co-workers around me. She called and said, “You remember when I said worst-case scenario?” I said, “Yep.” She goes, “Yeah, so it’s going to be [the] worst-case scenario.” My response [at] that moment was, “Oh, okay, great!” Because I’m literally surrounded by all my co-workers and I haven’t really told them what’s going on yet.

Dealing with my mom being a nurse practitioner [is] like a blessing in disguise. A lot of the more medical questions or things that could or could not happen, I leave that up to her. If I had questions that the doctors were asking, I ask her in more detail afterward.

She called and said, ‘You remember when I said worst-case scenario? It’s going to be worst-case scenario.’

Tylere P.
Tylere P.

I moved back home after the cancer had relapsed. Being independent, being told I had cancer wasn’t the worst part of this process — it was being told that I was going to have to move back home with my parents. That was very hard for me. I didn’t want to be a burden and I just didn’t want to be back home. It wasn’t a place that I wanted to be at 24, 25, living with my parents. But that’s what ended up happening.

My mom was coming to [my] appointments and I told her I can’t have her come anymore. It got to the point where, essentially, if the doctor asked me a question or asked me my name, by the time he said “name,” if I wasn’t saying “Tylere,” she was the one responding.

Being told that I was going to have to move back home with my parents… that was very hard for me.

Tylere P.
Tylere P.

We had a long conversation one day [with me] saying, “I just need you to not come to these appointments. It’s not good for me mentally. It’s not good for me emotionally. I just need to be in a good space. Basically, I moved back home to make this easier on you all.” Originally, I was going to go to Houston to be treated but came back to Michigan to make it easier so the family didn’t have to travel in case they needed to be somewhere for me.

I was already withdrawing a lot from my emotional bank to be back home. I said, “If there [are] questions that you feel like I need to be asking the doctor, I will talk. I will tell you after I get back from the doctor.” Give her a summary of what happened [and] what questions I asked… If there’s anything that she wanted to ask going into it, I could ask them. If she didn’t feel [the] questions I was asking were adequate, then we could have another discussion about that.

Tylere P.

I wish I would have had that conversation sooner of just being upfront about it.

Tylere P.

I know that was very hard because I told her in that conversation, “I don’t have any children so I don’t know what it’s like to be a parent with a child who’s going through this. I’m assuming as a parent you want to be there for your kids and do everything that you possibly can. But, at this time, I’m a grown adult and I would like to be able to answer these questions from the doctors. I also just need this for my space.”

If that was her process for going through this, I was giving her that space. But that space was impeding my space and I could no longer allow, [at] that time, to take over my space.

Stephanie, The Patient Story: It’s hard. There’s a juggling of things going on here where you’re trying to be mindful. You said something about [not wanting] to rob them of their experience of being parents in this way. At the same time, it’s already hard being home. I want to be independent. I still need to feel like me, like Tylere.

Are there any tips in terms of how you were able to move from “I don’t really want to talk to my mom about this, I know she really cares” to “I’m just going to do it”?

Tylere P.
Having a hard conversation

Tylere: I wish I would have had that conversation sooner of just being upfront about it.

We’re coming back from an appointment and she’s like, “Why are you so quiet? You never talk on these rides.” I was like, “Well, I just got chemo. I guess I’m tired and I just had that Benadryl so I’m out of it. I just don’t want to talk about it. I don’t want to think about it. I don’t want to discuss it. I just don’t want to be a part of it.” We pulled in the driveway [and] that conversation turned into an hour and a half about everything.

These are all thoughts that I’ve had before and I was just like, “I don’t know how to express these.” Writing down your thoughts is good, taking inventory of yourself — who you are, what you need — and then having that very uncomfortable conversation.

Tylere P.

We had a long conversation one day [with me] saying, ‘I just need you to not come to these appointments. It’s not good for me mentally. It’s not good for me emotionally.’

Tylere P.

Setting boundaries and expectations are huge because I remember my mom was like, “I’ll make you dinner. I’ll go grocery shopping for you. I’ll do your laundry.” I was like, “I don’t want any of those things. Now, I’m not saying I don’t need your help, but when I need it, I’ll ask.”

Stephanie, The Patient Story: Right, and I appreciate you sharing that because, again, it can be very difficult. Sometimes we don’t even know that we’re bothered or that something’s up. If you notice something, just write it down [and] see if it’s a pattern that will be helpful in having these conversations.

Erica had the complete opposite experience. With your parents, it was different.

Speaking up to get support from loved ones
Erica H.

Erica: I’m fortunate my parents live nearby, only 20 minutes away. I do want to be fair to my mom. She did come to my first appointment and then it was too crowded in the room where I was getting treatment. It was a nice way for her not to have to attend since my husband was going to be able to go with me.

I can’t reiterate enough Tylere’s point about writing things down because I wanted to be independent as much as possible and I was able to control that [by] just reflecting on what I would need. Having a doctor as a partner was really helpful in figuring out where those needs would come up but it’s a lot on one caretaker.

I was diagnosed in September 2019 and my treatment was going to fall into the holidays. My husband was awesome. Getting to the appointments, he played a good music playlist and always kept an upbeat, positive environment while I was getting treatment. For the most part, I was able to handle a lot on my own when he was at work, but he was also working full time and it was the holidays. Because you’re immunocompromised, you have to maybe sacrifice a big family gathering.

Having a doctor as a partner was really helpful… but it’s a lot on one caretaker.

Erica H.
Erica H.

They didn’t even realize that I needed them in that way. They were waiting for me to tell them because they thought my husband had it all.

Erica H.

I could see it start to wear on my husband a little bit. He was starting to burn out. I actually told him, “If you are not available to me, I need you to just give yourself a break because it’s not going to be helpful to me.”

My parents, at this point, knew that he was going through a lot but maybe not specifically on how they could support the community that I needed to rally around me. They are emotionally involved and it meant involving them [by] being very specific on how I needed them.

There were things on my task list that I just couldn’t manage, even though I wanted to be independent, [like] disability paperwork. I was still trying to figure out how to get disability checks. I also didn’t know what to cook for myself to deal with the side effects.

I remember just one afternoon telling my parents, “I know that you have a lot going on,” — which they did; there [were] a lot of other things happening in their personal lives — but I said, “I really need you to help me with this paperwork and to help me come up with some good recipes for the side effects. Here’s a list.” They jumped to it. They were so happy and they didn’t even realize that I needed them in that way.

They were waiting for me to tell them because they thought my husband had it all. But once my husband was burnt out, I’m like, I need you now to step in. I was a facilitator of this really difficult process, but it was easier when I was able to direct them on how to help me.

Stephanie, The Patient Story: This is such a great juxtaposition against what we just heard from Delishea and Tylere. When we have this range of experiences, the people around us may or may not know what we need. They may do too much. They may do too little.

In your case, you advocated for yourself because you knew with your husband, “Thank you for all you’ve done, but if you’re not going to have the energy at this next appointment, I need to know so that I can have someone there who can be at 100% for me.” The other thing you did was recognize — my parents, my brother, they don’t really seem to be stepping in. I’m just going to tell them what I need.

It can be hard to be that direct in having those conversations. Did anything help you to have these conversations?

How to bring up and get through tough conversations
Erica H.

Erica: I was really writing intensely — an organization in Berkeley called the Women’s Cancer Resource Center had a writing group. There were things that I was giving to my dad specifically. There’s a cultural component, too. He was having a really hard time adjusting to the fact that I was going through this experience and I really wanted him to hear my needs and concerns. It was just difficult.

In that difficult conversation of being heard of what I needed and what I wanted, I just met what I needed. If he couldn’t respond completely to it, I recognized that and just said, “Okay, I’m going to be direct. Just make me juice. I know you love me and that’s enough. Everything else, we’ll deal with later on.”

Whereas my mom, it’s just different, our relationship, and that was really helpful to her to not get as emotionally charged. It was like, “You know what, there’s some paperwork. I really know you’re good at dealing with this, so can we sit down for an hour?” It was just logical for her to sit down and go through it. I didn’t have to invite her into the emotional piece unless I saw that she was ready for that.

The same was for my brother. Because my husband lives with me, he got all of it, which is why he was dealing with burnout. I couldn’t find any other way than to be direct with him. I said, “I get it was hard for you, and I know you know it’s hard for me, but I need you to go with your brother and watch football. Get away.”

Everyone thought it was weird that [my husband] would go and he was starting to feel guilty. It was the best thing for us because then he came back with energy and I had brought in my parents and my brother to step in for that.

Kelsey R.

Stephanie, The Patient Story: One huge piece of this is we’re not going through this alone. We are diagnosed with it but along with us is everyone around us — maybe a spouse or partner or family members, friends. Caregivers and care partners need to have care, too. That’s a really, really good message.

Kelsey, you had support, but you also mentioned something about if you’re not in the right place, just don’t be afraid to ask.

Don’t be afraid to ask others for support!

Kelsey: I was lucky that my sister and my husband — at the time, fiancé — and I had some roommates that were very supportive and would help me out. Some grad school friends would make meals.

Sometimes, with such a large support team, it was a lot of breadth, not a lot of depth. There was not a lot of organization so it was difficult for me as a cancer patient going through a lot of mentally taxing medications to figure out what I needed when I needed it.

That was really helpful to me, just being able to identify who can help in what way.

Kelsey R.
Kelsey R.

I was able to choose [the] most organized, Type A people in my life. One friend put together a meal calendar where people would pay her and she would make me food [during] my chemo weeks.

My husband was not able to come to most of my appointments with me because he had a really unforgiving job at the time and my sister, I enlisted her to come with me because she’s also really Type A.

She actually caught a mistake where a nurse had weighed me incorrectly and was going to give me the wrong dose of my chemo that morning. That was really helpful to me, just being able to identify who can help in what way because my parents weren’t there and my husband was not able to help much.

Stephanie, The Patient Story: Having an extra set of eyes and ears in the room can be so critical. We’re overwhelmed. There’s a lot going on. We’re in the infusion chair and that’s a big mistake that could have happened.

Also, the people you have in your support circle [have] a different language. Some people are better at doing paperwork. Some people may be cooking. People want to help, right?

People want to help

Kelsey: Absolutely. That was the thing that surprised me. I don’t know why because I would gladly help my friends, too. But when my friend organized this meal calendar, people who signed up I maybe had one class with so that kind of community support people were really willing to engage in, which I was very, very appreciative of.

Recording helped because a lot of the times afterward, I couldn’t remember anything.

Delishea A.

Stephanie, The Patient Story: Delishea, you talked about how overwhelming it is [at] the beginning and the importance of having somebody else there. You were going through this during the pandemic. Can you describe how you advocated for yourself to have more support?

Delishea: With my first oncologist, I had to really speak up a lot. It was just a lot going on. Nobody was allowed to come in with me so I had to speak up for myself in the appointments because I didn’t really have anybody with me to remind me what the doctor said. That’s where the recordings came in and recording helped because a lot of the times afterward, I couldn’t remember anything.

Stephanie, The Patient Story: It’s overwhelming. We talked about having someone else there as extra eyes and ears. One thing I learned was you can ask the doctor if it’s okay to record. You can record the appointment on your phone so that you can then share [it] with other people.

As patients, we’re going through a lot — treatment, changes, and then on top of that, sometimes paying for it pops up. Tylere, for you, it’s a little bit of a surprise. Can you share with us [your] experience [with] those hospital bills?

Tylere P.

Tylere: I recommend for people who are going through this [to] just keep a three-ring binder — organize your bills [and] your explanation of benefits. I remember getting stacks and stacks of letters and mails. It was all very confusing. This is how much it costs, but you don’t owe anything. Sometimes you do and then sometimes you don’t. It’s weird.

I remember getting a bill for a very large amount of money and I was like, “Why isn’t this paid?” Every three weeks for a year, I was receiving the same treatment and my insurance company decided that out of one of those, they weren’t going to pay for it.

[I had] to talk to the financial office at the hospital about what’s happening [and] what can we do about this. Then [I found] out that there’s an appeal process that you have to do with the insurance company. I did that and then they denied that appeal.

Then [I found] out you can have your doctor make an appeal. The insurance company basically came back and said that [the] chemo treatment I received was not medically necessary and they weren’t going to cover it, even though they covered all the other ones for the past year, so that was interesting.

Then [I come] to find out that there was some financial help. They weren’t going to send me to collections for it. They were actually able to find some sort of grant that was going to help pay for someone in my situation. Luckily, that was taken care of.

Keep a three-ring binder — organize your bills [and] your explanation of benefits. I remember getting stacks and stacks of letters and mails. It was all very confusing.

Tylere P.
Tylere P.

Different places, depending on the size of the hospital you’re going to, have different help. The LLS or Leukemia & Lymphoma Society is one organization that does offer some help.

Stephanie, The Patient Story

Tylere: Yes. Make sure you’re having those conversations. I remember having that conversation with our financial department. Why is it on me to appeal this bill? I’m the patient going through all this. Why do I have to deal with these insurance companies about all of this? Figure that out. You’re the one who wants that money. Go after the insurance company. You all deal with this every day. Why is [the] person [who is] going through chemo [the one] having to deal with this or having to put [the] family through this who isn’t versed in any of that?

Stephanie, The Patient Story: Right. Different places, depending on the size of the hospital you’re going to, have different help. Some have patient navigators, some have social workers, and you had talked about, too, researching some of the different resources that could be possible.

The LLS or Leukemia & Lymphoma Society is one organization that does offer some help. If you don’t have the energy, maybe have people around you look for that. [There] are different grants and stipends you can apply for — from co-pay to travel to urgent needs, which [are] rent, mortgage, lodging, child care, food, transportation, [and] so much more.

Mental Health

Stephanie, The Patient Story: A very important topic can get on the back burner a lot. Self-advocacy is speaking up for every part of you, not just treatment and [finances]. Everything is connected to our mental health.

Kelsey, you didn’t really consider the mental health aspect as you were going through treatment. I think that is fairly common. We talk about surviving first. You talk about now, in hindsight, your perspective of mental health.

If you have never really considered your own mental health… do that because that’s been the longest healing process, but the most important.

Kelsey R.
Kelsey R.

Kelsey: I just really wish I would have, from the get-go, found a therapist [and] taken advantage of any free counseling my cancer center might have had. I had never been to therapy or anything like that before I was diagnosed and I was thinking about it when I got diagnosed.

I asked my oncologist if there were any mental health resources I could look at and I think he was in a bit of a rush to the next patient and he was just like, “Let’s not worry about that right now. Let’s just focus on getting you better.”

I understood his perspective but, [in] hindsight, I wish that he would have said, “Here’s the information for the social worker at our clinic,” or something like that because I think that healing mentally from this has been far [more difficult] than healing physically.

I would really encourage anyone who is recently diagnosed — or even if you are a survivor that’s been out of it for several years: if you have never really considered your own mental health — seeing a therapist, talking to your doctor, or anything like that — to do that because that’s been the longest healing process, but the most important.

Also, the people around me, I didn’t realize until after how difficult it was for my husband because he wasn’t showing how hard it was for him during the process. For caregivers as well, I think that is so important.

Stephanie, The Patient Story: I, again, appreciate highlighting this because we do often forget that. Not just us. As patients, we recognize when our caregivers are burning out or feeling a lot, but it’s everybody else who doesn’t really quite see. It’s not just the person who is diagnosed. It’s the mental health, the physical health, [and] the emotional well-being of these people who are also being the caregivers; that is so important. I really appreciate that.

I didn’t realize until after how difficult it was for my husband because he wasn’t showing how hard it was for him during the process.

Kelsey R.

Sometimes, where you’re going for your medical care can matter, too, because a lot of times, it’s overwhelming. We’ve just been diagnosed with cancer. We’re not thinking about anything other than how are we going to get through this. Am I going to live? Am I gonna lose my hair? What are the side effects?

Delishea, you went to two different medical centers. The first place was a lot more in the community then you ended up going to a big academic center.

Delishea: It was Baton Rouge General.

Delishea A. pre-hair loss chemo

When I finally moved to a bigger center, I didn’t realize how much everything took a toll on me.

Delishea A.

Stephanie, The Patient Story: Yes, and so you had two very different experiences. The first hospital was very different in talking about mental health compared to the second one. Is that right? Two very different responses when they were talking about mental health.

Delishea: [At] the first hospital, that wasn’t even a discussion. It was basically just this is what you have, this is what treatment you have. The whole experience was lacking.

When I moved to a bigger hospital, they offered counseling. I wish I would have [taken] that opportunity. I didn’t realize how much it affected me.

We went through a hurricane and during that transition, my first hospital oncology center got damaged so I went through a period without getting any treatment — no treatment, not knowing where I was going to go.

When I finally moved to a bigger center, I didn’t realize how much everything took a toll on me. I had a panic attack one night. I knew I needed to talk to my doctor and be on some kind of anxiety medicine. Before that, I never really knew what anxiety was. I never had it that deep to where I was breaking down, so that was a big thing.

Delishea A. last radiation

Stephanie, The Patient Story: I also appreciate that you’re talking about this because you have these two very different experiences. You didn’t even know what good care looked or felt like [until] you went to Baton Rouge. Was there anything in terms of finally being able to have that conversation? Did you notice an immediate shift [in] yourself? Was your quality of life different after?

Delishea: Oh, yes, very much. I wasn’t used to the small stuff — the snacks, the heated blankets. I didn’t even know it was possible. I felt like I was in luxury and it was just basic common patient care. Before, I didn’t even get that offered.

I love them — my nurses, my doctor. I love that whole team. It was just a big adjustment. Anything I needed, I could just say.

Stephanie, The Patient Story: Amazing. I’m so glad you were able to experience that shift.

Family Planning

Stephanie, The Patient Story: For Hodgkin lymphoma patients, a lot of the mental health piece of it is also being young when you’re diagnosed. [In terms] of family planning, Erica, you talked about being 37 at the time [and] talking to your doctor. Can you share more about what that conversation was like and how you had to advocate for yourself in that discussion and that conversation?

Erica: That first oncologist appointment was, to say the least, dramatic. I was getting diagnosed, not being listened to, and with my notebook in hand, I had a list of questions. My husband and I had just been married for a year and we were in the stages of family planning so that was important for me to ask [about] receiving chemo.

Erica H.

The doctor [said], “You’re too old. This is not going to happen. We need you to get treatment immediately because it’s going to explode.” It just was shocking having to forego an idea that I was planning on. The idea of exploding was really problematic for me.

Self-advocacy really played a role [at] that moment. I didn’t know who my next oncologist was going to be but I knew this was the oncologist who was holding me back from getting a second opinion on fertility treatment.

I asked, “I know this healthcare has a fertility department. Can I at least have a consultation with them?” He put me in touch with the fertility clinic that was part of the network, which was actually a really positive phone consultation. They just said, “We don’t know what happens, but you should go through the opinion of the oncologist.”

When I found my oncologist (that I went with) about two or three weeks later, I had the same conversation with them. Having already talked to the fertility department, he said, “I would just suggest you go through treatment because we don’t know what can happen.” He explained to me the process and I made the decision — just based on that conversation — to withhold it.

My husband and I had just been married for a year and we were in the stages of family planning so that was important for me to ask [about] receiving chemo.

Erica H.

Fortunately, removing Bleomycin was possible through my treatment because his researcher suggested that was going to be helpful afterward to be able to conceive as a possibility, and really respected the conversation throughout.

When I did receive remission, the first thing he said was, “All right, let’s get you healthy so that you can explore that conversation again.” It was just different. I really would say ask just for someone else who is an expert on that piece.

Stephanie, The Patient Story: Right, and don’t be afraid to ask. I think that’s the self-advocacy part.

Delishea A. chemo day

I just found out that I had cancer so it never crossed my mind. I was just about to turn 30. I never thought about kids.

Delishea A.

It’s interesting. Kelsey talked about Bleomycin and [its] impact [on] the lungs. Now you’re saying that that could have an impact, too, in terms of family planning. All of this is a result of asking questions and digging deeper. The power of that is pretty incredible.

Delishea, you had two very different doctors as well. [Did] a nurse talk to you about that?

Delishea: At the very beginning, she brought up [the] possibility that I wouldn’t be able to conceive. But [I] just [found] out that [I] had cancer so it never crossed my mind. I was just about to turn 30. I never thought about kids. And I was stage 4 so she was like, “You need the treatment. You need it now.” I never explored that conversation of freezing my eggs.

Kelsey R.

Stephanie, The Patient Story: It’s just all these different experiences. Kelsey, did it cross your mind? You were diagnosed on your 26th birthday so there’s a lot going on. What was the consideration for you?

Kelsey: I was still broke, living with roommates, [and] just finished grad school. It really wasn’t on my mind. It wasn’t something my husband and I — or fiancé at the time — were talking about.

I actually had [the] opposite experience that Erica did. The doctors were really pushing me to explore preserving my eggs. I chose not to do that because I really just wanted to get on with treatment and didn’t want to go through another medical procedure. I was stage 2A so the doctors were able to give me a little bit of leeway there. I just wanted to get on with it. From the research I’d done — at my stage, with my amount of treatment — my chances of remaining fertile were pretty high.

Kelsey R.

It really wasn’t on my mind. It wasn’t something my husband and I — or fiancé at the time — were talking about.

Kelsey R.

Coming out of one of my biopsies, the nurse was telling me about her friend who’d had cancer and now she’s got like all these kids. At the time, [I was] just thinking, “I don’t care.”

Now, at 30, after having been married for a while, I think I would approach it very differently.

Stephanie, The Patient Story: Thank you for highlighting that. This is a very individual response. It’s all about knowing where you are, what you want, and then advocating for that so that’s going to look different. It doesn’t mean you have to advocate for family planning and freezing eggs and embryos. It also doesn’t mean you shouldn’t be asking. It’s what is good for you.

Tylere P.

Tylere, you talked about your experience and your parents supporting that decision.

Tylere: I was 24 when I was diagnosed so this was definitely something that was discussed. My mom was pushing more for it. She would love grandkids, but I have an older brother, younger brother, and younger sister, and none of us have produced a kid for her yet.

The deal was that they would pay for the sperm being frozen. As of today, it is a very expensive child and we don’t even know if we will use that frozen sample or not. But that’s something that we did choose to do. Having the parents’ support in that and saying that they would help financially was a big [deciding] factor.

Stephanie, The Patient Story: Absolutely. There’s a financial consideration to this, [like] their storage fees.

My mom was pushing more for it. She would love grandkids.

Tylere P.
Stephanie C. cuddles bears

Survivorship

Stephanie, The Patient Story: Having this conversation as AYA or adolescent young adult is just so important.

I found email correspondence between me and someone I was matched to from Imerman Angels. I want to highlight this because having all of you on is a great example of the power of being able to find people who’ve been through it and can share experiences. I feel that’s how we learn what’s possible, by hearing from other people.

What [has] survivorship been like? Any guidance? It’s great. It’s also a huge drop in care for a lot of people; that can be really difficult. Any examples of advocacy during this time of survivorship?

Erica H.

Erica: I’ve now been in remission since March 2020. I take it a day at a time knowing that I can look forward and plan ahead on all things — family planning, building out my business.

What’s now part of my experience is being a resource and advocate for people who are going through cancer. I didn’t know that that was going to be part of my journey. Now that it is, I find it really important to advocate and make sure people know that there’s a whole network of people who are open to [talking] about it and [sharing] their experiences.

Stephanie, The Patient Story: Absolutely. Technology has been a big driver in opening different avenues of communication and figuring out your community.

I take it a day at a time knowing that I can look forward and plan ahead on all things.

Erica H.
Delishea A. in the morning

Delishea: I [have] just been trying to rediscover what I can and can’t do. I learned that I don’t have the same energy as I did before.

I’d just [graduated] so I’m happy about that. I took time off. I chose not to go back to work [and] I’m fortunate that I didn’t have to. I’m about to try to venture back [into] the workforce because I’ve been having too much lax time.

Stephanie, The Patient Story: I’m biased, but I think you’ve been through it so I think you should take that time. I don’t think you have anything to apologize for there. I think go for it. But congrats on wrapping up school.

Trying to rediscover what I can and can’t do. I learned that I don’t have the same energy as I did before.

Delishea A.
Tylere P.

Tylere: I always have a hard time with survivorship, especially having met so many other people who are no longer here with us, who went through similar things that I have. It’s just weird that I’m here, but they’re not.

That’s something that I was unaware of as I’m going through it and just being okay, cool, can’t wait to be done with this, and then we’ll never have to think about it again. Completely wrong. You will always think about this. Anytime you feel anything in your body, now that you are so attuned to what is happening, any little thing, you’re like, “Oh, and it’s back. We’re doing this again. Okay, here we go.”

It is nice being able to think ahead and not worry too much about some things. You can start planning ahead a little bit more. Even if you’re going through it, just plan ahead anyway. Focus on an end goal or on something longer term.

I didn’t know what lymphoma was when I was told and then found out it was cancer. [After] finding out I had it, I realized cancer was everywhere.

Be that person who reaches out and says, “If you ever need to talk, as someone who has gone through it, I would love to just talk to you about my experience,” and not be someone who’s offering solutions. Be a sounding board if you just ever feel stressed out. That’s how I handle it. Being a part of stuff like this is huge as well.

Something that I was unaware of as I’m going through it [was] you will always think about this.

Tylere P.
Stephanie C. holding balloon and flowers

Stephanie, The Patient Story: Thank you for being a part of this. So much of what you said resonated with me. Being there for people and sharing experiences is very different than giving advice. It feels more like a connection.

I also agree [in that] I thought I’ll be done with this. Congrats on the five years. It’s weird to say because I’m also at five years. At any given time of the day, there’s a moment where I’m [checking my neck] because [it’s] where my lymphoma showed up. I feel like it’s a knee-jerk reaction.

It doesn’t stop just because the treatment stops. There are lasting effects to this that keep going and that mental health piece is also really important. Having people like you share is really critical.

It’s traumatic and there’s a lot going on… allow everybody a chance to just grieve that, process that, and give ourselves grace is so important.

Stephanie, The Patient Story
Kelsey R.

It’s really easy to downplay in your head the impact that things had on you, especially for Hodgkin’s lymphoma patients.

Kelsey R.

Kelsey: The first couple of years after I finished treatment, I was going through a lot of changes on top of this. I had to push back my wedding so I finally got married. I started my career. I had three of my grandparents die within the next year after so there’s a lot going on at once.

My way of coping with it was just to try to make my life as aggressively normal as possible. I stopped going out, stayed in, was just cooking dinner at home, and just [tried] to be in a domestic, relaxed space. It wasn’t until more recently that I started thinking more about what I [wanted].

I’ve picked up my freelance writing business a little bit more and I started — with my mom and sister — a vintage furniture business that we’re really working hard on. Those things were not things I did at the beginning.

Kelsey R.

When you’re a young adult with cancer, you really can feel like you’re on an island by yourself. Those little moments of connection have been just massively important to my survivorship.

Kelsey R.

It’s really easy to downplay in your head the impact that things had on you, especially for Hodgkin’s lymphoma patients. It’s easy for us to be, “This [is] cancer with a high survival rate. I don’t deserve to feel so bad about this.” Realizing [that] no, this was a very traumatic event, mentally and physically, and I deserve to acknowledge that. Delishea, don’t beat yourself up for not rushing back into the workforce because you do really deserve that time to heal.

For me, as the rest of you have echoed, just being a contact for other people going through this has been really important. I had no resources. I had one friend who had had Hodgkin’s that I reached out to and then I found a couple of women on [an online community] who had had it. One girl, in particular, was just so kind and gave me so much information that I really made it a point to do the same.

I’ve actually had a lot of friends or friends of friends reach out to me just with cancer in general. I find that when you’re a young adult with cancer, you really can feel like you’re on an island by yourself. Those little moments of connection have been massively important to my survivorship because I don’t feel crazy. I don’t feel like this entire experience was something that I made up in my head.

Stephanie, The Patient Story: I love that everyone [was in agreement] when you were talking about letting everybody have time to heal, that everyone went through a traumatic experience, and not do the thing where it’s like, “Oh, well, it wasn’t as bad as the other person.”

Tylere mentioned losing people and there’s this “a better cancer.” No, it’s traumatic and there’s a lot going on and to allow everybody a chance to just grieve that, [to] process that, and give ourselves grace is so important.


Hodgkin Lymphoma Stories


Madi J., Hodgkin's, Stage 1B



Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
Treatment:
3 rounds (6 infusions) of ABVD chemo

Danielle D., Hodgkin's, Stage 2



Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)

Lani S., Hodgkin's, Stage 2



Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles

Jason F., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions

Logan A., Hodgkin's, Stage 2A



Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
Treatment:
4 cycles of ABVE-PC chemo

Helicon K., Hodgkin's, Stage 2A



Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Lauren

Lauren C., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Wade looking out over a lawn

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)

Moe C., Hodgkin's, 2B, Relapse



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Fabiola

Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab

Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)

Charlie B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy

Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: AAVD chemo, clinical trial w/brentuximab (Adcetris) + nivolumab (Opdivo) immunotherapy

Mara T., Stage 2BX (Bulky)



1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Tylere

Tylere P., Hodgkin, Stage 3



Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Kayla

Kayla T., Hodgkin's, Stage 3A



Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant

Erica H., Hodgkin's, Stage 3B



Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)

Nicole M., Hodgkin's, Stage 4



Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)

CC W., Hodgkin's, Stage 4



Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)

Lia S., Nodular Sclerosis, Stage 4A



Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
Treatment:
ABVD chemotherapy

Ava O., Stage 4B



1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go

Delishea A., Hodgkin's, Stage 4B



1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, immunotherapy (Adcetris)
Topics: Finding community & support, self-advocacy
Emmanuel S. feature profile

Emmanuel S., Relapsed Hodgkin’s Lymphoma



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: ABVD, ICE; autologous stem cell transplant; Targeted therapy: Brentuximab
Kelsey R. profile

Kelsey R., Hodgkin’s, Stage 2A



Symptoms: Bad leg itching with no rash, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation
Manda M. profile

Manda M., Stage 2B Relapsed Hodgkin’s Lymphoma



Symptoms: Loss of menstrual cycles, iron deficiency, itching, night sweats, tiredness, night terrors, trouble breathing, difficulty concentrating, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation, ICE chemotherapy, bone marrow transplant

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