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Cancers Chronic Lymphocytic Leukemia Leukemia Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL)

Michele’s Chronic Lymphocytic Leukemia Story

Michele’s Chronic Lymphocytic Leukemia Story

Michele was diagnosed with chronic lymphocytic leukemia (CLL), a blood cancer that is the most common form of adult leukemia. Read on to learn about her journey through diagnosis, watch and wait, clinical trial treatment, relapse and living life as a chronic cancer patient to the fullest.


  • Name: Michele N.
  • Diagnosis:
    • Chronic Lymphocytic Leukemia (CLL)
  • 1st Symptoms:
    • Slow healing
    • Scalp infection
    • Enlarged lymph nodes
  • Treatment:
    • Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab
    • Acalabrutinib
  • Relapse: May 2021

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


1st Symptoms and CLL Diagnosis

Video

Experience outside of CLL

Life before CLL

Before CLL, I was very career oriented and family oriented. I was that kind of woman who had to do everything super well. I was A++ at everything. I’d started out in broadcast journalism on TV news before I segued into the corporate world — or as we say in the business, the dark side of journalism.

I was the global chief of communications for a $9 billion publicly traded company, and it was a really cool job, very stressful, with long, long hours. When I say long hours, I mean I slept a few hours a night, seven days a week, because of time zones and the media. It was a great job until I was diagnosed. 

What about your life now? What are your hobbies?

I’m happily married. I have a terrific husband, who is so supportive of everything, of things that I do with friends, things that I do for work, my patient advocacy. Also, he is the best care partner there is.

In addition to that, I’ve always been a fitness nut and into exercising. I used to go to the gym before COVID. Now I do what I can at home. I do yoga now because I’ve learned that’s really good for you and to calm the mind.

I have Gabby, who is our chocolate lab. She’s my buddy, and we seem to do everything together. She has been also a great support to me during all of everything that I go through with cancer and outside of cancer.

Diagnosis

First symptoms

I thought I was a healthy person. I always had been very healthy and active. My God, my schedule alone! I figured you had to be a healthy person to be able to keep the hours I did and to always be traveling everywhere for work.

I was on planes 1 to 2 times a week, and they could be going anywhere in the country or in the world. Healthy eating was really big for me as well. I started having these weird things happen, each one in itself didn’t seem like a big deal.

I talk about these so that other patients, when they hear this, will know that these are things they should watch for if they have CLL. It’s things that if you look back, you’re like, “Oh yeah, that happened to me.” It took me a while to even realize that these pieces were there.

I figured you had to be a healthy person to be able to keep the hours I did and to always be traveling everywhere for work.

Ongoing infection

In November of 2010, I had a flu or something that led to chest congestion and a sinus infection from hell. I just couldn’t get better. I went to an ENT, and they didn’t do any blood work or anything. They just treated the symptoms because they had no clue that anything else could be wrong.

That lasted a really long time. I was traveling. Each of these times I had just traveled out of the country. Long flights, long hours. Not eating as healthy as I’m used to, not having time to exercise.

Scalp infection and bumps

A few months later, something else happened. I had this weird scalp infection, but it looked like I had burned myself with my flat iron. I’m just like, “Stupid, clumsy me, or maybe this happened at the hair salon when I had my hair cut or colored.”

I had these huge bumps at the base of my skull. I had no clue at that time that lymph nodes were everywhere and that those were lymph nodes. Then I went to an emergency clinic because it was just so bad, and my husband thought that maybe someone should see it since it really looked pretty gross.

I went there, and they gave me a shot of some kind of antibiotic. Then I went to my dermatologist, and they again treated what that was.

Then a few other times, I just kept getting sick. I would catch a cold, and it wouldn’t go away. I would get a flu or sinus infection. It just lasted forever. These are all really common things now that I know about CLL. These are really common things and signs for someone to look at and put all together that you have something.

Elevated white blood counts

Your white blood count, the highest end of the range should be pretty much in the mid to high 8000s. Mine was maybe 11 consistently, and then 14. That’s what flagged my primary care physician (PCP).

Plus, when you see your PCP, it’s not that often. He wanted me to come back in maybe six months. Of course, I delayed that because of work and being too busy. I’d kind of forgotten. It was like, “I don’t even know what that means. What’s the big deal?”

Then when I went back, it was still elevated. That’s when he suggested I see a hematologist, which in my mind was just a hematologist. I didn’t even connect hematologist and oncologist.

I didn’t return his calls for a long time until my assistant sat on my desk and said, “I’m not leaving until you call your doctor. This is the fourth message. You’ve got to call.”

Still, it didn’t dawn on me because I didn’t think about it. I didn’t take the time to think about it. I was so busy with everything. Why is he calling me? I didn’t even think there could be anything wrong.

This is something you shouldn’t do. I have since learned, and I learned the hard way. He was very calm about it. I have to give him credit. “I don’t want you to be alarmed. Your white blood count’s a little elevated. Again, I really would love you to go get this tested again and see a hematologist.'”

In my mind, I was like, “Yeah, someday I’ll go do that.”

Finding the hematologist

My PCP was a bit north of where I worked, and he knew how busy I was. He said, “I don’t know anybody in Miami, but see if you know anybody who can make a reference or recommendation for you.”

Someone I knew who was a nurse recommended this particular doctor. I walked into the University of Miami Sylvester Cancer Center, and it still didn’t dawn on me what I was being tested for.

I went through tests and questions, not knowing, having no clue. Nobody told me why I was being tested. Maybe he assumed my PCP told me, and my PCP maybe figured he told me.

I had no clue, and I’m like, “Why is he asking me this? Why are they taking so many tubes of blood? And why is he telling me, ‘I’m sure you’re fine’?”

I honestly had no clue. I was so busy. I registered hat it was a cancer institute at University of Miami Medical Center, but I never, ever put two and two together that that could be me.

Testing after blood tests

Then he did a verbal really long list of questions for family history. My parents were very healthy all their lives and living long lives. It’s not like they were young and passing away.

Again, I was just like, “This is taking so long. I have to get back to work.” This is how crazed about work I was. I’m like, “I have a deadline. I have a reporter waiting back at the office. I’ve got to get back to the office.”

I look back, and I realized that that’s probably not the best way to be in life. You really have to think about your health at times. The other thing is, though, it protected me in a way from knowing how grave this could be.

When I walked in there, I didn’t think that could be me.

I see people hooked up to IVs as I’m walking through. I see cancer patients and in wheelchairs, sadly without hair. When I walked in there, I didn’t think that could be me. It didn’t even register. If I had had time, perhaps I would have been a basket case, because it’s shocking to think that that’s you. That’s your future.

Time it took to get results

It took a while to get any kind of call. I put it out of my mind. I’m like, “Okay, whatever. I guess I’ll hear something if anything’s bad.” It took a couple of weeks, and then I heard from someone in the doctor’s office that everything was fine. That’s great. I’m thinking, “Of course it’s great. I’m healthy.”

I got a call a week later, and she said, “The doctor wants to go over your test results.”

I said, “I thought you said everything was fine.”

“Well, he just wants to meet with you.”

I’m like, “This is really nice,” but really I’m thinking, “My schedule is so packed.”

She said, “No, really, he really just wants to go over these things.” Again, you would think that it would dawn on me and I’d be petrified, but I was not.

The CLL diagnosis

I was just, as the English would say, gobsmacked. I sat down, and I had no clue what he’s going to say. He came in and said, “Well, you have the C-word.”

This is how out of tune I was. I’m like, “What is he talking about?” It wasn’t top of the mind awareness what the C-word was, because again, I didn’t know I was being tested for the C-word. Then I’m like, “Oh no, that C-word.”

He blurted out, “You have CLL, another C-word, chronic lymphocytic leukemia.” He said it so fast, and I was in shock. I was dumbfounded. What did he just say to me?

Of course, that changed my life right there. Then I heard “leukemia.” That’s all I heard. I’m like, “This doesn’t sound good.”

He said, “I’ll see you in four months,” and he went to leave.

I said, “Wait.” Of course, having my journalism training, I always have a million questions. “Wait, wait? Shouldn’t we get rid of this now?” The things that we would normally think that are logical for cancer.

He’s like, “No, you don’t have to be treated. You may never have to be treated.”

»MORE: Reacting to a Cancer Diagnosis

Processing the C-word

This is just not making sense. I’m in shock, and I’m like, “What do you mean? Well, what am I supposed to do?”

He said, “Just go on. Make sure you wear a mask when you’re in public.” The cruise industry is big in South Florida. He said, “Wear a surgical mask when you’re on a ship.”

Meanwhile, I’m in the cruise industry, and I’m leading press conferences. I’m like, “This is not a good visual.” This is before COVID times. We’re talking back in 2012, and that would not be a very good visual. That’s all he had for me.

I didn’t understand. I needed more information. He could not wait to leave the room. I asked, “Do you have any literature on this? How about on the hospital’s website? Is there somewhere you can suggest for me to look? For me to research this?”

He had nothing. And that was it. Then he put his hand on my shirt. He said, “Don’t worry, you’ll be okay.” He was an older doctor. He did get it right on my diagnosis, but when I walked out, I just knew that I probably wouldn’t go back there.

Switching doctors

I knew something wasn’t right. For me, that wasn’t my cup of tea to be treated that way and also to never be told what it was I was being tested for. I was really in shock, as well.

He couldn’t even say the word. The other thing he said was, “You have the C-word, but it’s the best one you can have.” None of this is making sense in my brain.

When that clicked, I’m like, “How can that be best of anything? It’s cancer.” I’ve heard this from other patients. They say they’re told that it’s the best one you can have, and that just offends everyone.

Advice for doctors from the patient perspective

Maybe you shouldn’t say it’s the best cancer anymore. Don’t say it’s the “C-word.” This could be a style between doctors and not to get patients overly worried, but if you’re testing someone, maybe you should let them know what you’re testing for and list a few things that it could be.

Maybe he didn’t know which kind of blood cancer. Maybe this was my PCP who should have told me, but you would think they had an idea if I was sent to a hematologist oncologist.

Let me know, or put it in a list of various things it could be. You don’t want to overly worry me in case it’s nothing. That, again, could be a generational thing between the doctor.

Emotions after the doctor left the room

I was just like the jilted girlfriend holding on at the last moment, like, “Please don’t leave me.” Of course, now I can look back and joke about it because we have self deprecation, having cancer and having been through these horrible things.

That was a very low day in my life, and I proceeded to make some pretty stupid decisions after. The other thing is I drove myself, and it wasn’t around the corner from where I work. That shouldn’t happen.

Processing the diagnosis

I went back to work and acted like nothing happened, and I went home and crawled up in a ball. Before I did that, I burned the hospital bracelet in my bathroom like it didn’t happen. I had water running so I wouldn’t set off. the smoke detectors. This is me. I’m always thinking of everything.

I burned the hospital bracelet. In my bathroom. Like it didn’t happen.

I burned it because I was so upset. Maybe it didn’t happen if I burned it? I don’t know. Then I convinced myself maybe this was wrong. Maybe they had somebody else’s blood test results.

I tell my patients now, “Do not do this.” I curled up in the fetal position after I went on Google and did a search, and it said I’d be dead.

Some had said three to five years; some said five to eight years. That was very old information that I found, or speculative. I hadn’t yet learned that first night what the credible sites would be and how they’re credible. At that time, 2012, there wasn’t as much available on the internet about our various diseases.

Telling family

I called my sister, I told her — wait till you hear this one — I was going to leave my husband. We had not even been married two years, and it wasn’t fair for him to have another wife with cancer.

His first wife had cancer, and she had passed. I just couldn’t do that to him. She talked sense into me. She was like, “You need to hang up with me and call him right now and tell him what’s wrong.” I was like, “I just can’t do this to him and the kids.”

His children became my children, and I just didn’t want them all to go through this again. It was really hard on so many levels. But I 911’ed him when I hung up with her after she talked sense into me. I don’t even know how this was for her.

It was too late for him to take a plane that night, so he was on the first plane in the morning. He was in Boston. I was in Miami. That’s when it really hit, when you’re together and share it. I don’t know how he even got to the airport himself and how he got on that plane.

»MORE: Breaking the news

Figuring out next steps

Then we figured out what I was going to do, and it was basically I had to leave. I left Miami and left everything: parted with work, my home down there, my life down there, my friends. I had some really terrific friends because I had been down there about seven years for my career. But what’s more important? Health and family.

My mom was up in Massachusetts, as well. I didn’t even tell my mother for a long time because I didn’t want her to worry, and I knew I wasn’t going to be in treatment.

“If I’m not in treatment, just what is the point?” I thought. I have no clue what to even tell people. I have it. So what?

Getting a second opinion

I had a second opinion within six weeks at Dana-Farber with the head of the CLL department. I didn’t even know that there was such a thing as a specialty in CLL. and that was something else I wish that the doctor had mentioned in Miami.

I was just so lucky and blessed that where we lived in Boston, we’d be seven miles away. There was a CLL specialist, an entire department, so I started seeing her.

I was hoping that those tests were wrong. I really did hold on to that hope in the back of my mind. I knew there was something. If I thought about all those things that I had mentioned earlier, there was something. 

I came back to Boston full time to be with family and try to figure out what I was going to do then. I realized watch and wait is a real thing and that yes, I can still work.

Worrying about reactions

It affects everyone in your family circle. I wasn’t thinking straight. I did worry about them, and I just didn’t think that it was — “fair” is probably the wrong word, because none of it is fair right to any of us.

Life during watch and wait

Watch and wait’s also called “active surveillance,” and it exists in some other things as well. There’s another blood cancer where it’s called a few different things as well. What patients call it is “wait and worry” or “watch and worry.”

It’s somewhat inhumane when you think about it. You’re basically waiting and watching your disease worsen until it would be so bad that you need treatment versus doing it the way you logically would with a different type of cancer that we have all heard about. You know that you treat early, get rid of it and you have better chances.

There are some patients who never need treatment, so that watch and wait could be forever for them.

Michele

Not everyone gets worse, and CLL is such an odd disease that not everyone needs to be treated. There are some patients who never need treatment, so that watch and wait could be forever for them.

Until they test certain things like your genetic factors, prognostic indicators, they don’t know how you will be and how your disease will progress or not. That’s one factor that they look at.

From the time of diagnosis, I do suspect I had CLL longer before from different factors, but from diagnosis they say it’s generally an average of two and a half years to treatment, which is just about what it was for me.

Learning about CLL

I’ve heard this from so many other patients, and I just want to tell you, use that time of watch and wait to educate yourself on CLL because it helps. For one, you do need treatment if you ever need treatment.

I was diagnosed ten years ago and I’m here, and there’s just so much hope for patients. It also helps prepare you for what’s going to happen. For me, the more I know, the better it is for me because then I know more of the facts as opposed to me wondering.

That’s when my mind kind of goes like to places it shouldn’t go. Once I could understand facts, it really helped to calm me down. That’s really why I started reporting on CLL for other patients to help them to demystify what it’s all about.

Living with chronic disease

Waiting for signs

There is a percentage of patients that do need treatment immediately, and they don’t like that either, as opposed to being able to watch and wait. For the watch and wait, every time you go you wonder, “Will this be the appointment that they tell me?”

You start to learn, and you also open communications with your doctor. “When will you know it’s time? Can you give me an idea how long in your experience for someone like me it’ll be?”

Again, we are so different, all of us. It’s tough because there are so many factors. For my white blood count, it was a certain amount. It was that, and it was lymph node burden. It was spleen size and all sorts of things.

I have a friend whose white blood count is at 240,000, but it’s not time for treatment for her due to other factors in her blood work and in the exams that you get. For me, it was totally different.

That’s why it’s so important to make sure you do keep your appointments. For me, it was every three months and then every two months as I got closer to treatment, and then it was just time.

For a lot of the patients I’ve spoken to, it really does vary. One of the things that helps determine this is something called a FISH test. That will show your genetic markers, your prognostic indicators, and they also do something called a flow cytometry.

I know there’s a good number of patients who have never had these done, and they’re not in treatment yet. I do suggest that you ask for those because it does help for you to know what those are.

»MORE: Genetic Testing for Cancer

Time for treatment

For me, it was a combination. My platelets started going low below range. My white blood count started doubling, although it never even got as high as this other person I’m speaking of. I know other patients that have gotten even higher white blood counts and still aren’t in treatment.

It was my lymph nodes, and they can tell that by physical examination. I mean, you could see my lymph nodes. They were all swollen. You could see them here. It wasn’t only my lymph nodes; it was a combination of platelets and other counts they look at. They want to look at your hemoglobin to see how that’s doing.

All of that put together. It takes a specialist really to put all those all these puzzle pieces together. That then is the point. For someone else, it might be that their white blood count gets so high and their platelets tank maybe lower than mine did, and maybe their spleen is really swollen, so it’s time for them.

There are all different indicators there that help. I know someone else who their white blood count went down, but they had CLL and some other factors happen. It’s just that varied for patients, depending on what it is about their disease for time for treatment. I also encourage second opinions.


CLL Treatment and Clinical Trial

Video

What was the catalyst for you to go into treatment?

The catalyst for me to start CLL treatment after having been on watch and wait for a little over two and a half years was that my white blood count had doubled a few times in values between appointments. Also, my lymph nodes had grown to a large size that was palpable for my CLL specialist to find. My spleen was enlarged.

These are all signs. Other blood counts also had either gone up or down to levels that were not within range anymore. All these things that point to, “It’s time for treatment.” 

Clinical trial

I was very interested in a clinical trial because at that time in 2015 there was only one. Things have just changed. It’s crazy, and it blows my mind when I think how much things have changed in six years.

There was pretty much the gold standard of treatment, which was FCR. It is by infusion, and it’s basically fludarabine, cyclophosphamide and Rituxan.

There was a trial open that I was offered. It was for young — and I’m young for CLL — and fit patients. Here I was, in the gym almost every day. At that time, actually, I had started running. I fit the criteria.

At the time, either they had said it could be curative or to put me into full remission and keep me there. I was like, “Yeah, sign me up.”

What I didn’t realize when I was signing up is that it was with ibrutinib, an oral treatment, which became the next gold standard of treatment. I was on full strength of both simultaneously for six months, and then I just continued on with the ibrutinib, the oral BTK inhibitor, which many CLL patients out there could be on or had been on or will be on.

»MORE: Clinical Trials in Cancer

Side effects going away

Within a couple of weeks, almost overnight, I felt like my lymph nodes had melted.

I had had what they call night sweats, which are like hot flashes, and I had them morning, noon and night. I was just a furnace. I froze everyone out of my house. We shared a summer home with another couple, and I froze them out of that house. They would push up the temperature. I’d be like, “I can’t. I’m so hot.”

I was on two full-strength treatments simultaneously for six months. Most patients do one or the other, and yet all of this was happening to my body at once.

That is another sign that it’s worsening. I also had had another sinus infection, which was the worst ever. I thought I had experienced the worse ever. These are all signs that they saw that my immune system was deteriorating due to my disease that was progressing. These are things that do happen to CLL, not all CLL patients, but some. 

It was just amazing. The night sweats stopped within a few weeks. Just so much of what had happened to me seemed to be getting better. Then I started with chemotherapy side effects that a lot of people have. It’s a bit of a trade-off, but I knew that there was a light at the end of the tunnel for the first six months.

Increasing fatigue

My fatigue increased. I also had fatigue with CLL. It got progressively worse and worse the closer I got to time for treatment. Fatigue is another big factor that I hadn’t mentioned for most patients. By the time I started treatment, I was taking naps every day, which is like against my religion.

I always think that’s what you do when you get old, but I had to give into it. Then when I started treatment, I absolutely eventually had to nap earlier in the day because infusion chemo is cumulative. I never thought about it at the time, but I was on two full-strength treatments simultaneously for six months. Most patients do one or the other, and yet all of this was happening to my body at once.

Ibrutinib and FCR regimen

With the ibrutinib, you take two pills daily — no stops, it’s just continuous treatment — and concurrently the FCR. For FCR, you would be at the hospital as an outpatient for four days a month. It was by infusion, and that was for six months. It wasn’t a full day once they figured out the speed of your chemo, of your drip. In the beginning, it took much longer. By the end, I was zipping through in four hours.

Dealing with the side effects

I never stopped going to the gym and working out. I hired a personal trainer because I didn’t trust that I would be able to judge what I could and couldn’t do, and I still wanted to be pushed a bit, but safely.

I made sure I hired one that had a great background in physical therapy and physicality. I did that three days a week and did yoga another day. Every week except my infusion week, I did this. 

For me, that was one way also to keep control of my body. I felt like it was controlling me or others were controlling it. This was my way to be able to control something.

Her name is Amanda Kelsey. She was able to judge my energy level somehow. She was able to read my energy levels and tailor my workouts without my realizing she was doing this. One day I asked her, “How did you know I was tired today?” She would know; that was great.

There are studies that show that you have less side effects if you keep active, if you move and have some kind of movement during treatment.

»MORE: Cancer Treatment Side Effects

Neuropathy

I had neuropathy in my feet at times. Not constantly, but at times it would hurt to walk. For those of you who follow Kicking Cancer in Heels, I wasn’t able to wear my highest of heels in those days because it hurt too much.

It’s happening again now that I’m back on treatment, but I had a hard time holding on to things. I remember picking up a jar of spaghetti sauce in the supermarket, and it fell out of my hands. Of all things to fall! I was so embarrassed. It would hurt to hold hand weights, and I didn’t have strength to grip.

These are pretty common with many chemotherapies. They’re not fun ones, but there are worse. My fatigue, though, is really profound and one of the worst of my symptoms, and I wasn’t able to go at my normal pace or even half my normal pace.

There were others, as well, but at the beginning I wasn’t sure what it was from. Was it FCR? Was it ibrutinib?

Dermal reactions

I also had a lot of dermal reactions. I started breaking out in hives a lot. Redness, red, splotchy things on my face. I had to start seeing a dermatologist, and I learned it’s better to go to one that specializes in oncology because they know what to do.

If you can find one, there are only 51 or 52 institutions in the U.S. that have them. I didn’t know that. I was just, again, so lucky to be going to a cancer center. Ask them if maybe they know of them or can refer to one that’s local for you.

It was a game changer. All she had to do was look and, in a second, know what it was. From what I understand, various chemotherapies do this. It’s not just the ones for CLL. They do know what to do if it’s somebody who understands the effects of oncology drugs and your skin.

Treating dermal reactions

Also, I learned how to cope with each of the different things that happened. A lot of strange things happened. It would break my heart when I’d see online chat rooms on Facebook and patients would say, “I’m going off my treatment because of my skin side effects.”

I would feel so badly and and try to answer. I’ve done reports on all the different things that you can use. Sometimes it’s just a particular ointment. Sometimes for hives Benadryl is the best, but that knocks me out. But at least they go away. I’ve been trying to use both.

Someone had said a couple of antihistamines can help. There are different ways, but there seems to be something for almost everything on these particular side effects for that. None of those were horrible things to do. It wasn’t like you had to do anything drastic. Again, being your own patient advocate, pushing, asking, “What can I do? This isn’t working for me. Can I see someone? What can I have that can help me?”

»MORE: Cancer Patient Advocate

Treatment from September 2015 to May 2019

Until March of 2016, it was everything. Then at that point, it was just ibrutinib, and ibrutinib you stay on indefinitely. By the way, I so encourage people to go in a phase 2 or later clinical trial because that means the dosage has already been determined. You don’t have to worry about that part of the trial, if you have choices. 

Some patients have already gone through all kinds of treatments. This would not be a first-time patient. They do sometimes go on a phase 1. For those of you who have never been in treatment, phase 2 or later is like getting tomorrow’s treatment today.

For me, ibrutinib had been approved for relapsed patients, but it hadn’t been approved for those who have never been treated. I couldn’t have gotten that drug otherwise if I wasn’t on the trial. FCR, on the other hand, is not used that frequently. This trial that I was on, now the results are in after all these years.

Unfortunately, I’m one of only a few patients — and I want to say it was 89 percent of the patients went into the Holy Grail of CLL, which is called uMRD, which is undetectable minimal residual disease. Of course, I had to be one of the few holdouts. I almost reached it. Almost very, very close. It put me into a very deep remission, a deeper remission than if I had just been on the ibrutinib.

I stayed on the ibrutinib quite a while, about three-and-a-half or four years, until my adverse events or side effects became so untenable. The fatigue was really one of the worst because I was working, but I couldn’t work at full speed, nor could I really work full time yet as long as I was on it. Because of that, I took a bit of a drug holiday and stayed in my partial remission until I relapsed last year.

»MORE: Newest CLL Treatments

Continuing treatment and quality of life

Having both FCR and ibrutinib and that I was in the first cohort —  they kept telling me the fatigue was from treatment in the beginning. After a year after treatment and I was still tired, then they started trying to figure it out. It’s not like there were other options at the time, and then other options started happening. The drug was working beautifully, other than one lymph node being bigger than it should be.

Bone marrow biopsies on a trial are done more frequently than otherwise. Some patients never even have to undergo a bone marrow biopsy. In the first year of the trial, every three months I had to have CAT scans and a bone marrow biopsy. The bone marrow biopsy is more precise than a blood test to find out what percentage of your bone marrow is infiltrated by your disease.

When I went into treatment, I was at 91 percent infiltration by my CLL, and when I heard that I was like, “Oh crap, I really should be on treatment.”

You want to be on treatment in the beginning, and then after you get used to not being on it, it’s like, “Treatment? Oh my gosh, I have to go on treatment now?”

It’s the irony of this. In other ways, I was so happy to be on treatment because for me, I was confident I was getting better versus getting worse. That is a turning point.

I think also when patients have been on treatment, they know what it’s like. They don’t get as nervous perhaps for the next one. You still get nervous, but you know what it’s like, and you know that you’re getting better.  

Going off treatment

Finally, I did say that it was really affecting my quality of life, and that’s when my doctor started suggesting I go off of it. I felt so miserable, but she wanted me to go off. I was afraid to go off because I knew I was staying, as odd as it sounds, healthier on it.

We actually had a tug of war with the bag with the ibrutinib in it. I pulled it towards me. She pulled it towards her. I pulled it to me.

I’m like, “But I have to stay on.

She’s like, “No, you’ll be okay.”

Finally, I let her be the victor because it honestly was great being off treatment. I was able to find out that, yes, I still had energy. That was the other thing, trying to explain to the doctor the real me that she had never met. Well, she met in the beginning when I was working.

Here I am, back to work, able to work tons of hours and still do all sorts of other things. All they see is you as a patient. You have to explain really how you are. I was able to prove to myself — which I needed to — that yes, once again I could get back to having a lot of energy.

I’m glad I was able to do it. It was wonderful seeing that I am still the person I thought I was, and I could still have energy and that age hasn’t taken over. Things didn’t change from having been on treatment, because that’s the other thing you don’t know. Have I changed? Has it changed me?

»MORE: Working During Cancer Treatment

What was it like going back on treatment?

It actually ended up being two years before it started being noted as being progressing, but it wasn’t time for treatment again yet. You have to wait until it gets worse. It presented itself a little differently this time, and it became more aggressive toward the last two months before it was time to go back on treatment.

I wasn’t happy that I had to go back on treatment, but I did know that I would because it is a chronic disease and the majority of patients do. I was hoping I would have gotten a little longer without treatment, but that didn’t happen,  especially with COVID.

When I stopped treatment, it was maybe only ten months before people went into lockdown with COVID. So I just kept thinking, oh gosh, when am I going to be able to live life? That’s another reason why I wish it had lasted longer but I’m back on.

Choosing between treatment options

I didn’t know which treatment to go on, so I once again, got a second opinion and a third opinion this time. I am really happy I did because the good news is there are so many choices right now to go on, which was so different than when I first went on treatment when there were hardly any choices.

There’s no cure yet, but a lot of the specialists say there will be a cure for us to look forward to.

There are so many choices that it was kind of hard to decide. Also, there were so many trials. I opted to go on the next generation of BTK inhibitors, something called acalabrutinib, otherwise known as Calquence.

I was waiting for a phase 2 of a particular trial that my doctor had suggested and that I had spoken to others about. By the way, the second opinion you get should really be from a CLL specialist. Even if you don’t see a specialist, I suggest you talk to one for a second opinion.

I am considering going on a trial in the future. The original one we thought of is no longer one that we’re looking at, because I am doing so well on the drug that I’m on. We may add in another drug potentially to put me into a deeper remission again, so that’s what’s next.

What is most important to you when deciding the path to take?

Every patient is different on what works for their lives or not. I was hoping to have finite treatment. That’s not as important to others. Some people are fine staying on indefinite treatment, and it’s easier for them really to just take a pill. It’s much more serious than just taking a pill like a vitamin.

I don’t want to minimize what it is, but their lifestyle versus having to worry about infusions or worrying about being overnight in the hospital for any particular treatment that you have to go through or from being monitored.

I really did want finite treatment, and that’s not what I have right now. I’m doing really well with the drug I’m on, which is wonderful. I would still love to have finite treatment. The things you have to look at is, “What’s right for you? What will work for you?” What works for me may not work for someone else.

Again, some of this has to do with how many times you’ve relapsed or if you’re new to treatment. It has to do with certain treatments. It depends on the things that we were talking about before, your prognostic indicators. 

Those are like 11q, 17P, TP53, and IGHV mutated or unmutated. I don’t have the worst, but I don’t have what they call the best. I’m somewhere in between. I have two of those. 

Then for some patients, one works better than the other. There are all these combinations of treatments on top of that, like endless combinations and endless trials, which is really wonderful for us. There’s no cure yet, but a lot of the specialists say there will be a cure for us to look forward to. I do hope for that.

Being on acalabrutinib

Ibrutinib, you take your pills once a day. Acalabrutinib, you take it twice a day, for me anyway. Different patients sometimes take less. There are sometimes side effects on this that go away. In the beginning, just like most patients, I had horrible headaches, but not all the time. They go away within a few weeks.

If you drink coffee, which I try not to later in the day, then it goes away. They know this now because the drug’s been around a while. You can also take Tylenol.

It has less side effects than the ibrutinib because it is a newer drug with less toxicity. I have only one other real side effect, and that is — we’re unsure if it’s neuropathy or joint pain — in my hands. That’s something yet to be determined, and that too could go away. I’m hoping for that.


Finding Purpose in Cancer

Video

How did you work through the identity shift of having cancer?

It is such a difficult thing, and it was one of my hardest challenges with the diagnosis and trying to figure out who I am. When no one else was home except our dog — I would talk to her because she was safe — I would just sit on the floor and cry and say, “What am I supposed to do with this? What is my purpose? I need to do something. I don’t know what my purpose is.”

One of my friends said to me two weeks after I was diagnosed, “What’s your new dream?” I’m like, “I don’t have any right now.” Then that sat with me. I have no dreams because I knew that I couldn’t go back to the schedule I kept in my career. Even if you’re healthy, you probably end up not healthy because you really should sleep, and you shouldn’t be working all those hours. I kept trying, so what is it?

Finding purpose again

It’s interesting that the day I started chemo is the day I started reporting from the infusion chair. I didn’t realize that was my purpose yet. I did it to help others and to demystify it.

I learned that actually made me feel better because even though I still didn’t realize it was the purpose, it gave me a purpose. It kind of gave me a job when I went to chemo and infusion. I didn’t really think about it as much. It was just like, “It’s my job here to report on what this feels like.” I was living in two worlds.

Once I started feeling better, I took on clients as a communications and PR consultant. I’d work with agencies for their clients, and I was doing my patient reporting. I started doing more and more in the patient influencer and advocate community.

When the first Wonder Woman movie came out, I saw it. I know this may sound silly, but Wonder Woman jumped into battle ahead of all of the troops — men, because it was World War Two in this movie — and she just went head on into battle with everything firing at her, and she used her cuffs to fight them off like my cuffs.

Wonder Woman and fighting cancer

I started using that for visualization for many things. I could never really get into meditating and visualizing different things in your body and it being disease free. Suddenly I had something to count on. It was in my brain. I was fighting off those cancer cells. My husband went on Etsy and got me each piece of the Wonder Woman costume uniform. He was in the military, so to him, it’s my uniform.

I have a real metal shield. We’re not talking plastic here. Swords and the cape, the whole thing, the crown. I’ve got it, and it really helps me fight off my cancer in my mind. Also, it’s given me the power to move forward in my patient advocacy and in fighting off my CLL. I know that I can be Wonder Woman and fight it off and be the victor and have the strength for that. I try to think of it now as going into battle against my disease.

»MORE: Kicking Cancer in Heels

Patient advocacy and coexisting with cancer

What I’ve done won’t work for everyone because we are now immersed in the cancer world for work and ourselves. I’m able, probably through journalism training, to separate it.

When I’m doing the work, I am not the story. I’m not used to being the story. It’s so much easier to be the one asking the questions versus being the one giving the answers. I’m able to separate things out.

Support groups

There is a close woman support group that another woman and I co-founded called CLL Women Strong. I invite any of you out there to join that, or also there are other support groups out there for virtual meetings. 

There’s AnCan, which is for all blood cancers. They are online. There are so many on Facebook. One is just called CLL Support Group. I co-administer that with another fabulous co-patient, Jeff Folloder. There are just so many out there. There are CLL/SLL women’s groups. Find one you identify with because you can post things and people will answer.

They’ll be there to support you. You need people who understand what you’re going through. Support groups didn’t exist when I was first diagnosed. It’s also really hard to find other women and other women who are diagnosed at a young age and going through this. Now those things do exist. 

Everyone’s kind of growing with technology in this, but also you’ll find kindred spirits that understand and you can identify with, because your family isn’t the place to always go to for this. They’re not going to understand, but don’t let that get in your way of finding what’s right for you.


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Chronic Lymphocytic Leukemia (CLL) Stories


Andrew S.



1st Symptoms: Nosebleeds (unrelated) led to blood work, revealing high WBCs



Treatment: Clinical trial, Gazyva (obinutuxumab) and steroids, Jakafi (ruxolitinib), Inrebic (fedratinib), Reblozyl (luspatercept)

Lynn B.



1st Symptoms: Prolonged fever and night sweats



Treatment: Rituxan infusion, ibrutinib daily

Leesa T.



1st Symptoms: Bruising



Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)
Learn from three of the top cancer specialists about cancer treatment trends, including precision medicine, MPNs and CLL studies.

Nadia K., Small Lymphocytic Lymphoma (SLL)



1st Symptoms: Rash, lump under arm, fatigue



Treatment: Ibrutinib and acalabrutinib
Tamsin W. feature

Tamsin W.



1st symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatment: Obinutuzumab & venetoclax

Michele N.



1st Symptoms: Slow healing, scalp infection, enlarged lymph nodes



Treatment: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib

Sean R.



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax

Lacey B.




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R

Tony D.



1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Targeted therapy - orall pill (Imbruvica), takes 3 pills a night
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Multiple Myeloma Specialist Rafael Fonseca

Multiple Myeloma Screening | Rafael Fonseca, MD

Multiple Myeloma Screening

Rafael Fonseca, MD
(ASH 2021)

Published March 2022

This image has an empty alt attribute; its file name is Rafael-Fonseca-SQ-1024x1024.png

Dr. Rafael Fonseca shares information about multiple myeloma clinical trials, new therapies, and emerging changes in the standard of care for multiple myeloma patients, following the American Society of Hematology (ASH) 2021 conference,

Dr. Fonseca has been a practicing hematologist for almost three decades, now interim executive director at Mayo Clinic. As a veteran specialist of the myeloma field, he shares his insights on the latest in emerging treatments and clinical trial studies.

The interview has been edited only for clarity.


Studies: iSTOP and PROMISE

The Patient Story: There were two big studies discussed at ASH focused on screening: iSTOP in Iceland, and the PROMISE study led by Dana Farber that started a couple of years ago, which focused on diverse populations. Can you describe the importance of those studies?

Why iSTOP Matters

This [iSTOP] is an incredibly important trial. Their goal was to do the whole screening for the country of Iceland. And what they went about to do was set up a system whereas people would be offered to be screened for the presence of monoclonal proteins. And they have a very robust partnership with the laboratory methodology to be able to test this at a high level and with great precision.

This is where phase III trials meet real world data, and really establishes some very interesting findings.

Dr. Rafael Fonseca

They went about to do a population based study, and at the end of it all, it was very, very large– 75,000 people. This is where phase III trials meet real world data, and really establishes some very interesting findings.

There were three or four key takeaways. One is that we know there’s a small fraction of the population with smoldering multiple myeloma, so they have established that through screening. It’s less than one percent that they estimated, but it’s still measurable. And that is important because as we have clinical trials where people are saying we should think about treating smoldering, we’re going to have to be more and more careful about that.

One of the randomizations was how to approach patients and then what to do afterwards.  What they’re trying to see is if you have an early intervention, and you detect this early, then you can prevent some of the complications.

That’s very important because a myeloma patient who progresses to development of lytic bone lesions, especially if that results in a fracture, or renal problems, can have lifelong consequences. Then, as they live many years now after diagnosis, that’s very undesirable.

It also establishes the baseline for the prevalence of monoclonal gammopathy of undetermined significance (MGUS) in that population. So what we need to do is to think about how this extrapolates. I think there’s a susceptibility according to the various regions, but for what they tried to test, it was a remarkable study.

Why PROMISE Matters

PROMISE is a very large study led by the team of Dr. Ghobrial from Dana-Farber. And they’re able to show higher prevalence than expected for monoclonal gammopathy.  In populations at risk, although the numbers will evolve, the number I keep in my head is about 10%. That’s in people who have family members who have monoclonal gammopathy or individuals of African-American ancestry, who have a higher incidence for this.

I hold the belief that many of us have slightly abnormal plasma cells somewhere in our body because we get exposed so many times through our lifetime that the opportunity for a mistake is actually quite high.

Dr. Rafael Fonseca

The other finding that was remarkable was that they found that a small fraction of patients that have abnormalities that would be a little bit more like a pre-MGUS, and some of those were reported as transient.

Now, there’s no reason to believe that humans don’t have some old clones. We know that for other tumors. So it was only logical that in time it would be found in patients who have things like MGUS. I hold the belief that many of us have slightly abnormal plasma cells somewhere in our body because we get exposed so many times through our lifetime that the opportunity for a mistake is actually quite high.

But you know, the studies are descriptive for the most part right now. But I really commend the efforts of the team of Dr. Ghobrial as well, too, in trying to establish this new baseline.

Takeaways for Current Patients

The Patient Story: What are the takeaways for current patients regarding screening?

You know, there is no agreement at the moment regarding screening strategies or recommendations. And the reason for that is that these are conditions for which we don’t necessarily have treatments that will completely eradicate the process.

You screen for polyps because if you can excise those polyps, then you decrease the risk of colon cancer. But with the bone marrow, it’s very hard to do that because you can’t go in and just pull out the abnormal cells and then leave the rest of the bone marrow.

There is no question that, as time goes by and as the cells grow, there’s a greater likelihood that one might have a complication.

Dr. Rafael Fonseca

However, the question will change as was shown by the iSTOP study, because now the question is, “Can you do something to prevent a complication from happening?” There is no question that, as time goes by and as the cells grow, there’s a greater likelihood that one might have a complication.

So if you detect early, you might not be able to move on fully to the curative approach, although there are some clinical trials that are asking that question. But you might be able to establish a more careful monitoring strategy so that the next time you meet that person, it is for another laboratory testing, and not because the person has been admitted to the hospital with a fracture or with renal failure.

I think with most of the patients we see that have this condition, there’s somewhat surprise findings. You know, they’re going for a physical, and they’re found to have an elevated protein or someone orders a protein electrophoresis for other reasons, and now they know they have it. So we monitor them, but we don’t do this at large.

Genetic Screening

Now we get the question often from family members. “My mom or my dad has myeloma. What can I do to test?” So we give them the names of those tests, but without much information as far as what to do. And I feel like patients and families should know as well that we don’t have the best pathways yet defined, as it’s still early on.

[Testing] is a double-edged sword, because now you know you have it, then that creates a little bit of stress and anxiety. But on the other hand, you can prevent those complications.

Dr. Rafael Fonseca

But for instance, if you were in a family where there’s two or three members who have myeloma, that would be a pretty strong signal that there’s some familial clustering and then the person might want to test. And why not, if they find something to monitor? It’s a double-edged sword, because now you know you have it, then that creates a little bit of stress and anxiety. But on the other hand, you can prevent those complications.

Interestingly, at this meeting, we had a presentation by a team that looked for germline genetic changes that may predispose people to myeloma. They found that about 9% of patients have some genes that potentially could be contributing to the development of myeloma. Again, it’s very early, but that would be another path to explore as well.

Identifying Risk for Black Patients

The Patient Story: With PROMISE, there was a focus on Black patients, and a recognition that the high risk population over 50 years old was twice as likely as the general population to have MGUS. If you are a Black patient, what do you need to know about elevated risk, and do you need to talk to your primary care doctor? 

You know, it could be right, but I don’t think we are ready yet to make recommendations. I think for readers in the audience who may have this question or that concern, it’s a fair request that your doctor does that testing if you are interested. As I mentioned earlier, we don’t have guidelines. I can’t pull them out and say, “This is what needs to be done.”

But I think people rightfully are concerned and would like to know. And the obvious question is, “Why?” And the “why” is so that you can have a good screening strategy. I hope that within the next five to ten years, we will have more specific guidance as far as what to do because again, if we can prevent complications, that would be pretty good.


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Joseph Mikhael Multiple myeloma Multiple Myeloma Specialist Research

Multiple Myeloma Treatment | Joseph Mikhael, MD

Multiple Myeloma Treatment

Joseph Mikhael, MD: Quadruplets vs. Triplets

March 2022

At the American Society of Hematology (ASH) 2021 conference, Dr. Joseph Mikhael explains how new research on 3-drug vs. 4-drug combinations for front-line treatment for multiple myeloma from the GMMG-HD7 trial is changing the standard of care.

The interview has been edited only for clarity.


I think there is a general sense in the myeloma community that we are moving from triplets to quadruplets.

Dr. Mikhael

3-drug vs. 4-drug combinations

Studies

The Patient Story: You had 660+ patients enrolled in the GMMG-HD7 trial. What is the importance of this study?

When we look at the State of the Union of Myeloma right now, we’ve shown over the last decade that going from two drugs to three drugs was important and better for patients, that it gave them a deeper and more durable remission, typically before a transplant and had them in remission for longer.

That the next wave of questions are “Well, if three is good, are four better?” So we’re taking our typical three drug combinations in this case, something called VRD or the Velcade, Revlimid and dexamethasone, and adding a fourth drug to it.

There are two studies that looked at this. The big one, the German Myeloma Group study, where we added isatuximab, which is a CD38 antibody very similar to daratumumab, and added the isatuximab in one arm and not the other. And I think there are a few reasons why this study was important.

  • 1. It is the first large phase III study that we’ve seen adding a fourth drug, or this quadruplet, to the VRD.
  • 2. Their primary endpoint wasn’t just response rate, but was actually MRD negativity rate, or minimal residual disease negativity, where we look for the tiniest amount of disease left. So people have to have a very, very deep response to achieve that MRD negativity. And indeed, the MRD negativity rate was considerably higher in the four drug combination versus the three drug combination.

I’m just Joe. I’m not a prophet. But if I were to predict the future, I’m pretty sure we’re going to be going towards quadruplets in myeloma, and with lots of options.

Dr. Joseph Mikhael
Moving to quadruplets

It’s still too early to make final changes and to immediately jump to quadruplets. But I think there is a general sense in the myeloma community that we are moving from triplets to quadruplets.

The other study was the GRIFFIN study. It was a randomized study, but phase II was much further along than we were anticipating. In this case, daratumumab was added to the VRD before the transplant, for a little bit of consolidation after the transplant, and also actually in maintenance.

In that study, again, it looked like adding the daratumumab at every step of the way deepened someone’s response compared to just getting VRD.

Historically, we’ve known in myeloma that when response is deepened, it tends to last longer. Both studies are still too early for us to really comment on progression free survival, or how long someone stays in remission. But typically, as we said, that depth of response correlates to the duration of response. And so it’s very encouraging.

I’m just Joe. I’m not a prophet. But if I were to predict the future, I’m pretty sure we’re going to be going towards quadruplets in myeloma, and with lots of options. It’s not just going to be one exact four drug combination. I think we’re going to be looking at different ones with isatuximab and daratumumab.

Hope for the future

The Patient Story: How much longer do people have to wait before we can have faith that quadruplets are as promising as these studies are showing?

It’s a great question, and nobody exactly knows the answer. But we keep building this case. I mean, the case is becoming more evident, and it’s also important that more than one study be done because that that helps us. It gives us greater benefit for the proposed quadruplet. I think in a year from now, we’re going to have much more mature data and there may be an opportunity not long thereafter actually for this to influence the FDA. 

In fact, in the U.S., we actually have a quadruplet approved. Daratumumab VTD, or Velcade, thalidomide, and dexmethasone. We just tend not to use thalidomide here in the U.S. for lots of reasons. So replacing that with VRD, as I say, will likely happen over this next year, and I think it will be something moving forward. It speaks to a philosophy that I think is worth mentioning, which is that we are recognizing that what we do earlier on in someone’s disease course has a long term impact.

I’ve sometimes joked and said, “saving the best for last is great for a Hallmark movie, but not really for myeloma.” We’re learning that what we do in those that first line or the first two lines of therapy has a long-term implication.

So we want to be careful if we add any more toxicity because someone’s going to listen to this and say, “Well, if four is good, why don’t we go to five or six?” We have to really be careful about the impact it has on a patient’s quality of life as well.

But one of the benefits of these fourth drugs that we’re adding is they tend not to come with a lot of risks. Every drug comes with some risk, of course, and I think we’re finding that sweet spot with the four. I think one of the unanswered questions is, “How long do you continue those that combination, and do we need that fourth drug in maintenance?” That’s what we’re trying to sort out.

I think we’re going to develop stopping rules for myeloma.

Dr. Joseph Mikhael
Maintenance

The Patient Story: Because a lot of this is being used before the transplant and then not being tested as maintenance therapy?

Typically now we use lenalidomide maintenance, but many of them are now testing whether we can add a second drug to maintenance. And I think that’s an overall theme that we have been seeing over the last few years, going back to the notion of intensely treating the disease earlier.

And of course, we balance that benefit with the side effects the patient experiences. It’s one thing to say, “OK, a few months of all these drugs.” But if I tell the patient, “Well, you’re going to be on this heavy-duty maintenance therapy for the long term,” it’s more difficult.

Not trying to be a prophet, but if I could predict the future, I think we’re going to develop stopping rules for myeloma. I think we’re going to be able to understand better. And some studies presented at ASH this year were looking at when you can de-escalate therapy when someone reaches that MRD negativity or undetectable disease level. And those are the kinds of questions that we hope we answer with time.

Because if I’m a patient or their care partner or caregiver reading this today, I want to hear from Dr. Joe, “When can I stop treatment? Don’t just give me more and more.”  The goal is not to treat everybody forever. The goal is to treat in a strategic way that can get people down to as little treatment as possible to keep their disease in check.

Overall landscape of possible treatments

The Patient Story: And in order to do that, we’ll just need more of these clinical trials. But specifically tests, for one thing.

Correct. And that’s what’s wonderful– I mean, I’ve been treating myeloma for over 20 years. I have never seen a more exciting year than the year that we’re in right now. The number of trials that are being done to answer these methodical questions are occurring and are heavily influencing the field, despite what’s happened with the pandemic and all the challenges. It’s been very encouraging to know that we’re working very hard to answer these questions for patients.

Older populations

The Patient Story: In the study with isatuximab,  the median age was about fifty-nine and a half years old. The median diagnosis for myeloma tends to be more like sixty-nine or seventy. Do we know if the results translate to that population?

So studies are being done looking at this same combination in patients who are typically older and maybe not going to a stem cell transplant. Last year, or even just this past spring at our ASCO meeting, one of the most important studies was the long-term follow-up of the MAIA study, where we gave three drugs -daratumumab, lenalidomide and dexamethasone- to patients who were not planning to go to transplant, and their average time in remission was about five years. The average age on that study was seventy-three.

So we thought for a while, “Oof, can we really do triplets in more frail patients?” Well, now we know we can. So now we have to ask the question “Will quadruplets work?” And maybe we modify the drugs a little bit, give them a little less intensely. But really, we’ve seen huge advances in both sets of populations and really across the board of myeloma.

Side effects

The Patient Story: At least with this GMMG-HD7 trial, it looked like side effects were comparable in terms of the triplet versus of quadruplets. In other words, even adding the isatuximab didn’t significantly increase these side effects for patients. Is that right?

That’s been one of the benefits of these monoclonal antibodies.  As I mentioned, every drug comes with some risk, and it does slightly increase the risk of infection. And then there can be what we call “infusion reactions” when people first receive it.

But you’re very right– compared to many of the other strategies before when we’ve added more drugs, the adverse events or side effects have been appreciably less with this group. And that’s so important because safety is paramount, especially when we’re starting first line therapy, where we want to protect patients.

We always want to protect patients and be as safe as possible with them, but especially in this largest group of people that are being treated. We want to be very careful before we roll out quadruplets that we understand the safety profile of this combination.


Emerging Therapies



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma treatment, including bispecifics and CAR T-cell therapy.

3-drug vs. 4-drug combinations



Multiple myeloma expert Dr. Joseph Mikhael discusses the use of 3-drug vs. 4-drug combinations for front-line treatment.

Multiple Myeloma Screening



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma screening, including new information from the iSTOP and PROMISE clinical trials.
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Joseph Mikhael Multiple myeloma Multiple Myeloma Specialist Research

Multiple Myeloma Screening | Joseph Mikhael, MD

ASH 2021: Multiple Myeloma Screening

A Conversation With Joseph Mikhael, MD

A Conversation Rafael Fonseca, MD

In this segment on the American Society of Hematology (ASH) 2021 conference, Dr. Joseph Mikhael shares information about advances in multiple myeloma screening, including the iSTOP and PROMISE clinical trials.

The interview has been edited only for clarity.


iStopMM Study

The Patient Story: Is it true that iSTOP is the largest screening of any cancer project in the world so far?

We learned that it is feasible to do a huge screening study.

Dr. Joseph Mikhael

As far as I know. The numbers are jaw dropping when we think about it. There were over eighty thousand people in Iceland who consented to participate in the study. That in and of itself actually is one of the most important things. We learned that it is feasible to do a huge screening study. They’ve already collected over seventy-five thousand samples trying to detect myeloma at its earliest stages.

As we know, myeloma has a precondition called MGUS (Monoclonal Gammopathy of Undetermined Significance), and there’s a lot still to learn about it.

  • What is the true incidence of it?
  • How should we follow it?
  • Is there a way to detect it earlier?
  • Is there something that puts certain people at risk?
  • Does it mean something even if someone doesn’t ultimately develop myeloma?
  • Only a very small subset of people will develop myeloma. So these are some of the questions that only a screening study of that magnitude could answer.

I think we had four different oral presentations from the iSTOP study -from the Iceland screening study- to be able to start to answer some of these questions. We still don’t have anything definitive. We’re not suggesting that we now go and screen everyone, but we’re starting to learn who is at higher risk, what MGUS really means. Ultimately, we hope to be able to detect it not only sooner, but maybe even know who’s really at risk and possibly even prevent it.

Takeaways from iSTOP

The Patient Story: What are some of the biggest takeaways from iSTOP?

Well, I think some of the biggest takeaways are that, as I mentioned, it’s feasible to do a big screening study, and that when we use our most sophisticated techniques, which includes mass spectrometry, we really do find that this is a common condition. And we know that with the Caucasian background of patients in Iceland, their risk tends not to be as high. And that’s why we’ll come to the PROMISE study in a minute.

Although we have screening programs, for example, trying to detect things early in breast cancer and in colon cancer and many other areas, we really haven’t been doing that much in the hematology world.

Dr. Joseph Mikhael

But even then, in patients over the age of 40 or 50, we’re seeing around five percent of people with this. And interestingly, half of one percent have smoldering myeloma, which is a step between MGUS and true myeloma. So to see that high of a percentage -you might think half of one percent is small, but to actually have a diagnosed malignancy of that magnitude, you know, we always think of myeloma as being kind of rare disease that accounts for two percent of all tumors- you see that this is really quite common in its earliest stages.

And you know, although we have screening programs, for example, trying to detect things early in breast cancer and in colon cancer and many other areas, we really haven’t been doing that much in the hematology world. And so I think I stop is really starting to open the door towards that. We want to do it intelligently and appropriately. But it’s definitely taking us down that path.

Mass spectrometry

The Patient Story: Can you explain mass spectrometry?

Think of a mass spectrometer as just a really careful machine that can look at every tiny little protein in your blood and be able to quantify it very accurately.

Dr. Joseph Mikhael

So let me demystify it, because ultimately, I don’t think it’s going to be that expensive. I think it’s going to be cheaper in the long run. So when we look at a disease like myeloma, it’s a disease of proteins in the blood. And think of a mass spectrometer as just a really careful machine that can look at every tiny little protein in your blood and be able to quantify it very accurately.

If most myeloma patients or their caregivers saw how we measure some of the proteins in their blood or the M-spike, that monoclonal protein, we typically do it on what’s called a serum protein electrophoresis, which is just one way.

We put the blood on a plate and it runs over a period of time, and based on the weight of those different proteins, they kind of separate themselves out. And sometimes it’s like the hills here in Scottsdale, you know, they run into each other, and it’s hard to know how big one protein is versus the other.

Mass spectrometry is very precise, so it can detect low level proteins, which is really benefit number one– that it has that earlier detection. It measures them very accurately. It can also discriminate between different proteins sometimes.

Now, we use drugs in patients that themselves have a protein component, things like monoclonal antibodies, and they show up on a certain protein electrophoresis, and it can kind of confuse us. Like how much is the drug causing that, and how much is it actually the disease? The mass spectrometer is able to distinguish that difference.

Sometimes, unfortunately, in myeloma, proteins can change over time. And so mass spectrometry can know exactly which was the one that they had before and which is the one that they have now. So it’s really a fancy way of looking very carefully at these proteins.

With a mass spectrometer, we might be able to get people’s results literally within minutes.

Dr. Joseph Mikhael

And yes, the technology and the machine itself may be initially relatively expensive, but in the long run, as it may be able to replace some protein electrophoresis, it’ll be a lot cheaper because protein electrophoresis takes a lot of time in the lab and a lot of human effort.

With a mass spectrometer, we might be able to get people’s results literally within minutes. Right now, a lot of myeloma patients end up coming in a week before their visit or several days before their visit to get tested so that we can wait for all these results to cook in the lab. Here, we can do a much quicker turnaround.

Adoption of mass spectrometry vs. SPEP (serum protein electrophoresis)

It’s not been adopted universally yet. In fact, it’s not formally gone through the full FDA approval to be used yet.  We anticipate, though, that it may be available as early as the first quarter of 2023, so in a little over a year from now.

There are some centers that are using it as we’re validating the tool more and more at Mayo Clinic and other places. So it’s not yet ready for prime-time. It’s being used in some of these clinical trials, like in iSTOP. It’s being used in the PROMISE study, but it really is, I think, going to be mainline and a little over a year from now.

iSTOP and measuring kidney function

The Patient Story: I read something about a special tracking system with the light chain levels, and that iSTOP was able to provide information on people with reduced kidney function. Can you expand on that?

So again, going back to how the mass spectrometer works. It can be much more precise, and we do have sometimes a little difficulty following patients who have light chain myeloma. The protein that’s made in myeloma is this big immunoglobulin, or an antibody, that’s composed of a heavy chain and a light chain. Sometimes the whole thing remains intact. Sometimes there’s the heavy chains, plus the light chains. And sometimes, there’s just the light chains.

We have a light chain measurement that we do in the blood, but that’s sometimes skewed a bit by kidney function because typically our kidneys clear those light chains out of our system. So if the kidneys are not working as well, those light chains hover in the blood for longer. So we’re now just trying to understand the best way to measure them and what the implications are of those measures. And only in big studies like iSTOP can we capture all of that information.

Severity of COVID in MGUS patients

The Patient Story: Is it true that covid outcomes aren’t more severe in people with MGUS than in the general population?

It did not appear that MGUS status by itself heavily influenced someone’s risk of developing or being very sick from COVID.

Dr. Joseph Mikhael

One of the abstracts that was presented was trying to look at this. And they hadn’t had a massive outbreak, so the numbers are relatively small. But there were so many patients that they had diagnosed with MGUS that it did not appear that MGUS status by itself heavily influenced someone’s risk of developing or being very sick from COVID.

Now, obviously, we all know this is a moving target now with different variants and so on, but it is very important for us to evaluate this because it’d been such a source of stress for our patients and their families because we know that myeloma is a cancer of the immune system.

We know that people with myeloma’s immune systems aren’t as robust to fight off infections, or even to fully respond to vaccines. But we have seen when our patients get their vaccines and their boosters, it clearly confers some protection. They may be still at high risk compared to the general population, but I urge anyone who may be reading to ensure that they have gotten their original vaccinations and their booster.

Answers with iSTOP

The Patient Story: What are you hoping iSTOP will answer? And how long will that take?

Well, it is going to take years to get all the answers, but I think we’re going to learn in the shorter term what the true incidence of these conditions are, and if there could be certain populations that we should begin to screen for in an earlier capacity.

Also, part of iSTOP was not just collecting this information. Patients were randomized to different groups with a more intense versus a less intense follow-up. So this may influence the field even in the short term. How frequently should we follow our MGUS patients? And when do we not do bone marrow biopsies, and when do we do x-rays? And what are the psychological impacts of having MGUS?

People are more comfortable understanding [MGUS] than fearing they may have something that hasn’t been diagnosed.

Dr. Joseph Mikhael

One of the things that I think is particularly important to the study is that they do surveys with patients. Would patients rather know that they have MGUS? And does that induce more stress? And initially, it does not appear to induce that. 

People are more comfortable understanding it than fearing they may have something that hasn’t been diagnosed. So there are lots of things in the short term about the psychological impact of MGUS, how we follow MGUS, and whether or not we should be screening earlier in certain populations.

Diversity in Myeloma Care and Research

PROMISE study

The Patient Story: Can you tell us about the PROMISE study?

The PROMISE study is really a fantastic study, and I commend Dr. Ghobrial and her whole team. I happened to be a part of this program in the early days– we were planning it when I was still at Mayo Clinic.

PROMISE study goal of evaluating the impact of myeloma on diverse populations

I just think it’s a wonderful and important approach. In Iceland, obviously the numbers are massive, but we recognize that Iceland does not represent the diversity of what we see here in North America and in particular in people of color.

And so in the PROMISE study, they were looking to screen individuals and also use a large database that they have already existing in Boston to look at Black Americans and their true incidence of MGUS and myeloma, but also those individuals -independent of race and ethnicity- who are first degree relatives of myeloma patients.

This has always been a challenging question for us to know and really understand. ‘Familial myeloma’ is really quite rare, but are there ways to detect it more? And sure enough, we found that if, generally, MGUS is in about five percent of the population in patients over 40 or 50, that it really is double that in the African-American population and in those who are first degree relatives of myeloma patients.

But I’m very thankful that the country, if not the planet, is starting to put a spotlight on health disparities.

Dr. Joseph Mikhael

That it is in that 10 percent range, and maybe even higher when we use the more sophisticated techniques that I mentioned like the mass spectrometry. And so the numbers are still coming in.

Obviously, they’re not iSTOP numbers, and there’s still so much to learn, but I think it was really critical because in this group of individuals it demonstrates to us the greater incidence, and how these individuals are greater risk. And it speaks to us of the importance of health disparities in multiple myeloma that I know we’ll talk more about because there was great research presented within this field over the course of the meeting.

But I’m very thankful that the country, if not the planet, is starting to put a spotlight on health disparities. And the tragedy within the African-American community is that not only is disease more common, sadly, we do see that outcomes of survival are significantly reduced in this population.

And yet they don’t have to be, because there are studies that show that when African-Americans have the same access to therapies as Caucasians, their outcomes can be as good, if not better. So that tells us that there’s hope here, that there’s opportunity.

I think the PROMISE study is a step in that direction to really assess and understand the disease more fully as doctors.  Diagnosis always comes before therapy, right? So if we can fully understand the issue, then hopefully we’ll be able to do more about it, so that we’re not just talking about these things, we’re doing something.

The Patient Story: This mass spectrometry that’s being used in both of these studies– that plays a big part in getting better, more accurate numbers, right? Being able to detect more minute amounts of the M protein– is that part of this?

That’s absolutely part of it. Mass spectrometry has that ability to detect proteins at lower levels than we’ve traditionally been able to look for.

Risks found with screening

The Patient Story: The follow-up four and a half years after showed a slightly higher mortality rate in patients that had that and protein detected versus not, and also a higher risk of myeloma, other blood cancers and possibly things like heart attacks. Is that right?

Something that’s emerging from both the PROMISE study and the iSTOP study that we’re starting to understand a little bit more of is that we tend to think of MGUS as being a precursor to myeloma. And so the worry about MGUS is that someone develops myeloma.

And that, of course, is the central concern. But we’re starting to notice something else– that patients who have MGUS may have other associated conditions and that their overall survival may be compromised. We still don’t fully understand this.

I don’t want to raise too much of an alarm yet, because we’re still sorting it out. But there may be greater connections to certain kinds of heart or kidney or other disease, and we’re trying to understand the mechanism of that–  is it really driven by the MGUS, or is the MGUS just telling us something else that’s going on within the immune system or within the body?

And this is the kind of thing that really can only be fully assessed and understood in something like iSTOP. So that’s one of the things that we hope to have more answers about in the not-so-distant future.

Frequency of MGUS screenings in the US

The Patient Story: Can you talk about the frequency of MGUS screenings in the US?

So right now, whether it’s the International Myeloma Working Group, or our organization, the International Myeloma Foundation, or any other institution, no one is yet recommending that we just screen largely. I think the approach is that we’re learning more about this, and we’ll understand it better for the future.

I do, however, think it is really important for us to speak up when we identify people with signs and symptoms that could be consistent with myeloma. There’s a difference between screening the general healthy population and screening if someone has certain features.

The M-Power Initiative

This is part of the work that I do at the International Myeloma Foundation in our M-Power initiative, which is to educate the community and primary care docs about when to test for myeloma, how to recognize the signs and symptoms, and then what exact tests need to be done, which is the serum protein electrophoresis and the light chains like we talked about earlier.

So when people have a low hemoglobin count, or fatigue that is not otherwise explained, or bone or back pain in particular, that’s outside what we would expect, or their kidney functions off– there’s a whole series of things that kind of trigger this.

Thankfully, the majority of people with MGUS will not develop true myeloma. But now, as we have better techniques to measure it and better understanding of the disease, we want to keep an eye on it so that we can intervene when necessary.

Dr. Joseph Mikhael

Sometimes within the African-American community in particular, this isn’t thought of because these are many of the same things that we may see, for example, with diabetes. And some may say, “Oh, that’s just from your diabetes,” and not look a little bit deeper. But for those people who are reading and already have established MGUS, I think what it reminds us is that it’s important to continue to be followed.

Thankfully, the majority of people with MGUS will not develop true myeloma. But now, as we have better techniques to measure it and better understanding of the disease, we want to keep an eye on it so that we can intervene when necessary.

Follow-ups for MGUS patients

The Patient Story: What is the follow-up once someone has MGUS? And how long should it go on?

So the quick answer is that it depends on someone’s MGUS, and obviously they need to talk to their own physician about that. We have different groups that have provided different guidelines. In general, people with MGUS are seen either once or twice a year, so every six months or every 12 months. We have a sort of a grading system within MGUS of people who are higher risk and people who are lower risk.

This is also what we want to learn from iSTOP, because they have a strategy to look at how frequently people should be followed. Right now, it appears that people really do need to be followed indefinitely. It’s not like if you go five years and there’s no progression of MGUS to myeloma, you can stop looking. We see that people unfortunately can progress even after having MGUS for 19 years in their 20th year. It can happen, so it really is unfortunately a lifelong follow-up.

Future of screening

The Patient Story: What do you see for the future of MGUS screening?

I think it will take some time because the implications are huge, right? Massive screening programs are obviously very consuming and have to be done correctly if they’re going to be effective. And we don’t want to screen a whole group of people where it may not be necessary. So the day may come where we’ll say that at a certain age, or based on someone’s gender or ethnicity or race, that there may be a greater risk, and therefore it triggers the need to be screened.

That’s kind of how we do it now, right? We don’t screen everybody with mammography or with colonoscopies in their 20s and 30s. We set an age. If someone has family history, then their risk is increased. Someday, we’ll probably come to that. We’re just not there yet.


Emerging Therapies



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma treatment, including bispecifics and CAR T-cell therapy.

3-drug vs. 4-drug combinations



Multiple myeloma expert Dr. Joseph Mikhael discusses the use of 3-drug vs. 4-drug combinations for front-line treatment.

Multiple Myeloma Screening



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma screening, including new information from the iSTOP and PROMISE clinical trials.
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Joseph Mikhael Multiple myeloma Multiple Myeloma Specialist Research

Immunotherapy for Multiple Myeloma | Joseph Mikhael, MD

Immunotherapy for Multiple Myeloma

A Conversation With Joseph Mikhael, MD

In this segment on the American Society of Hematology (ASH) 2021 conference, Dr. Joseph Mikhael describes emerging immunotherapy in multiple myeloma, including CAR T-cell therapy and bispecifics.

The interview has been edited only for clarity.


Bispecifics

The Patient Story: Bispecifics and CAR T-cell therapies have been huge topics. Can you give us some of the highlights?

It’s a huge area. And this is one of the reasons why I’ve said I’m so excited about what’s happening in research in myeloma. There are lots of things coming for what we typically call triple class refractory myeloma.

So when people have been exposed to, and their diseases grown on, the three current major classes of drugs -proteasome inhibitors, immunomodulatory drugs and monoclonal antibodies- we’re looking for more options. We have some options now, like selinexor, or like belantamab mafadotin, but we want more options.

This is where a lot of the hot research is going on, and probably the biggest group of studies we saw at ASH were these bispecifics. What do I mean by bispecific?

We use that word generically because it’s a drug that has two arms. Bi, meaning two. So with one arm, it hooks on to the myeloma cell, typically by virtue of something that’s sticking out of the cell. And then the other arm engages or reaches out to a local immune cell of the body, typically a T-cell. Although now we’re starting to do research looking at other cells like natural killer cells.

But for now, they’re T-cells, and it immediately engages the T-cell to help destroy the myeloma. The real benefit of these drugs is this is just a drug we give to a patient, as opposed to CAR T-cell therapy, which is also very exciting.

In CAR T-cell therapy, I have to take a patient’s T-cells out, I manufacture them, I multiply them, and then I give them back to a patient a month later. There are a lot of logistical challenges in doing that. And so this is kind of an off the shelf approach where I can just take a drug off the shelf and give it to a patient.

The bispecifics in general are pretty much double that. We’re seeing 50 to 60 and even up to 70 percent with all of these different bispecifics.

Dr. Joseph Mikhael

What did we learn about bispecifics at ASH 2021?  We learned that in general, we’re seeing a doubling of the response rate of what we’ve seen so far in this phase. So we’ve seen great drugs like selinexor and belantamab, and even this new drug, iberdomide -which is not yet FDA approved, just kind of a newer version of the immunomodulatory drugs called cell mods- and these drugs have historically had a response rate of 25 to 30 percent.

The bispecifics in general are pretty much double that. We’re seeing 50 to 60 and even up to 70 percent with all of these different bispecifics.  Point number two is that they’re different because they can hook on to different things on the tumor.

We’ve historically looked at something called BCMA -or B cell maturation antigen, something that sticks out of a myeloma cell- that we can grab onto with one of these two arms. But now we have two new targets, one of them is called GPRC5D, and one of them is called FcRH5.

I think they sound like license plates– the first time I heard these drugs, I drove to the grocery store and I was convinced the car in front of me had GPRC5D plates. But the bottom line is that there are different ways to use bispecifics.

Side effects

The Patient Story: What about side effects?

The third thing we’ve learned is that they do come with side effects, and we have to be careful. Specifically, this thing called cytokine release syndrome, or CRS, where the body is reacting to this because we’re playing with people’s immune systems.

Thankfully, almost across the board with the bispecifics, we see a much lower grade and severity of CRS than we do with CAR T-cell therapy. We’re still admitting patients for their first dose or two, depending on the rates of seizures. But I can see a day in the future where we may be able to give this as an outpatient.

So, this is a really exciting time for bispecifics. There are different bispecifics. They’re clearly very effective. We’re understanding their toxicity or their side effect profile. For some, it’s pretty much just low blood counts. For others, it’s a bit more involved. Some of them have effects on the taste or the skin or even people’s nails. And obviously we’re evaluating all of these in the clinical trial.

This is not way off in the future. It’s quite possible that in 2022, we will likely see one of these drugs.

Dr. Joseph Mikhael

The last thing I would say about the bispecifics is that this is not way off in the future. It’s quite possible that in 2022, we will likely see one of these drugs. The one that appears to be furthest advanced is now a drug called teclistamab, which hooks on to the BCMA and the T-cell, may well be available by mid-to-late 2022.

I don’t want to, again, be prophetic and think to the future, but teclistamab, talquetamab, and various others are in the pipeline now, and we hope to have them available to our patients in the not-so-distant future.

CAR T-cell therapy

The Patient Story: What’s the most exciting takeaway from ASH regarding CAR T-cell therapy?

So with CAR T-cell therapy, if I go back to what I described before just using very general numbers, we saw response rates with these simple molecules or the single molecules of 25 to 30 percent. We appeared to be doubling that when we started using bispecifics. We’re tripling that when it comes to CAR T-cell therapy.

We already have one CAR T approved in the form of Ide-cel. And depending on how we look at those numbers, somewhere around three quarters, if not even up to 80 percent of patients, will respond to that and will respond for a long time.

We could argue that one of the most exciting abstracts from this year was the update in the next CAR T that will likely be approved, called Cilta-cel, through a study that was called the CARTITUDE-1 study.

My good friend and colleague Tom Martin presented this from UCSF, and it’s remarkable. I mean, there’s a 98 percent response rate. There are only two patients that didn’t respond. And even at that, there’s a question about how those two patients are doing.

It’s hard to make a hematologist’s jaw drop, but we were really quite struck by this. Obviously, there was some cytokine release syndrome and some challenges, but, generally speaking, they were manageable.

What was almost equally impressive about the CARTITUDE-1 study was not just that the response rate was at a level that we’re not used to -and that the depth of that response was incredible as to how many people achieved minimal residual disease negativity- but how long it lasted– that the median progression free survival has still not been reached at two years. So it looks like these people will stay in remission for two years.

It’s hard to make a hematologist’s jaw drop, but we were really quite struck by this.

Dr. Joseph Mikhael

That’s something that we just absolutely have not seen before. Most of these patients on the CARTITUDE-1 study, if they were not being given CAR T, sadly would likely have succumbed to their illness within six to nine months. So for them to be able to live that much longer is very gratifying.

Again, it’s still too early. It’s not FDA approved yet. The FDA will be reviewing this in February, but I suspect we may likely have another CAR T available to us in 2022, and we hope that we can treat more patients with it.

Risks of CAR T-cell therapy

One of the encouraging things about CAR T actually is that we seem to have more inclusiveness than, let’s say, even bone marrow transplants or stem cell transplants. So in the Ide-cel study, there were patients who were older and had co-morbidities that may not have made them eligible for transplant, but they made them eligible for CAR T.

Right now, some of the challenging areas are patients who are significantly elderly with many comorbidities. We don’t make determination just by age, of course. Right now, because of some of the drugs that we give to people to prepare them to receive their T-cells back, if people have very advanced kidney dysfunction, that’s unfortunately a bit of a dealbreaker for many, although we’re starting to evaluate that a little bit more.

The biggest issue is access, and it’s not just access because patients have to go to a larger center. Even getting the already FDA-approved CAR T is challenging because the whole supply chain across the world is an issue.

The viral vector technology that’s used to engineer CAR Ts is similar to that used in vaccinations, actually, and so there’s a bit of a shortage and a supply challenge. Most of this will be resolved in the spring. But right now, there are people who want to get CAR T that can’t. And that’s why having another product, we hope, will facilitate access.

Looking ahead in myeloma

Optimism for future treatments

The Patient Story: Anything else you would say to people and their families who are on their second to last option and getting nervous? How should they respond to all this news?

You’re not going to find a more optimistic myeloma doctor in the country than me because it does excite me to see all of these options.

Dr. Joseph Mikhael

As I always say, I’m the realistic optimist. I use that phrase a lot in the clinic. You’re not going to find a more optimistic myeloma doctor in the country than me because it does excite me to see all of these options. I have a patient this week who I’m treating on clinical trial with a very new bispecific that doesn’t even use a T cell, it uses a natural killer cell. So the options are extensive.

The realistic part is they’re not always available right away, and there are people that have very advanced disease. And so we do encourage people to get an expert opinion to have the openness, and to look at different options.

Sometimes we can reuse drugs that were available before. But there is true optimism about bispecifics and CAR T being much more available within the next year to two years. And I really think it’s going to have a prolific impact.

And as we look to the future, we’re now going to start -and we already are- doing clinical trials bringing this much earlier to within the disease course. As I shared with you earlier, this trend in myeloma to treat most effectively early on is really important. No, don’t save that best for last. So if CAR T works that well when everything else is failed, maybe CAR T works even better in the front line or the early relapsed.

Inequality in myeloma care

The Patient Story: What would you say is happening in the myeloma space regarding health care inequities and making sure that we address all the different needs?

So I’m just thankful that we’re finally, in a greater community sense, shining a spotlight on health disparities– in particular in multiple myeloma, and in particular within the African-American community, although there are other disparities within the Hispanic community and many other places. But specifically within the African-American community, because as we mentioned earlier, the disease is twice as common.

And this is a lot of the work that I do at the IMF with the M-Power Project, where we’re really trying to do a deep dive in the community to raise awareness around this condition and facilitate earlier and more accurate diagnosis because African-American patients typically have a longer time from symptom initiation to diagnosis than Caucasian patients.

At this year’s ASH, I was encouraged to see that there were a whole host of studies that were done that are helping us to diagnose the problem further, that are demonstrating the connection between socioeconomic status and outcomes of myeloma, that there is sadly decreased access that African-American patients.

For example, one of the drugs we talked about, daratumumab, there’s a great Canadian study showing that African-American patients tend to get it much later in the disease course than Caucasian patients. Or that when we look at the big pivotal clinical trials, as we call them, that have influenced approval over the last several years, there have been very few, unfortunately, African-American patients in those studies.

If we figure that about 20 percent of all myeloma patients in this country are Black, why is it that our clinical trials have two, three, four or five, maybe six-seven percent enrollment within the African-American community? And this was discussed during the meeting in various settings and contexts and even access to CAR T.

If we figure that about 20 percent of all myeloma patients in this country are Black, why is it that our clinical trials have two, three, four or five, maybe six-seven percent enrollment within the African-American community?

Dr. Joseph Mikhael

So I always talk about the three Ts: access to triplets, transplants, and trials. We’ve shown this has not been at pace with Caucasians for the African-American community. But at this ASH, we heard that similarly, unfortunately, in CAR T, a fourth T -so triplets, transplants, trials and CAR T- are not as accessible.

On the other hand, there were some studies that started to look at greater inclusivity in ranking, in prognostic scoring, and in ways to look at clinical trial sites– for example, in areas where historically we’ve not had clinical trials. If we do the clinical trials in the same places we’ve always done them, they may not be as accessible to various members within the community, including the African-American community.

So, you know, I think we need to diagnose the problem fully before we do something. On the other hand, it’s time to do something, and I believe that the community is starting to do something, and we’re starting to appreciate the importance of doing this.

This is a time of great optimism… I always say I don’t treat myeloma, I treat people.

Dr. Joseph Mikhael

We’ve let people be at risk for too long. It’s going to involve all stakeholders from the policy standpoint and government, from within the medical community, within industry, in the way they conduct clinical trials and set expectations of enrollment in clinical trials and indeed in the lay community as we work together to overcome this inequity in these health disparities.

This is a time of great optimism. This is still a very awful disease. I hate myeloma. I always say I don’t treat myeloma, I treat people. And so we want to do everything we can for those wonderful people who unfortunately have been afflicted with this disease, and we’ll do the very best we can for them.


Emerging Therapies



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma treatment, including bispecifics and CAR T-cell therapy.

3-drug vs. 4-drug combinations



Multiple myeloma expert Dr. Joseph Mikhael discusses the use of 3-drug vs. 4-drug combinations for front-line treatment.

Multiple Myeloma Screening



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma screening, including new information from the iSTOP and PROMISE clinical trials.
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Medical Experts Myeloma Oncologist

Dr. Joseph Mikhael, Multiple Myeloma Treatment

Joseph Mikhael, MD

Multiple Myeloma Treatment

Joseph Mikhael, MD has treated myeloma patients for over two decades and is a professor at The Translational Genomics Research Foundation (TGen), an affiliate of City of Hope Cancer Center. Dr. Mikhael also serves as the chief medical officer at the International Myeloma Foundation.

He has also led many clinical trials, mostly focused on relapsed/refractory multiple myeloma, and played a role in developing isatuximab, a CD38 monoclonal antibody.

Thank you, Dr. Mikhael, for the work you do and for being so patient-focused!


Emerging Therapies



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma treatment, including bispecifics and CAR T-cell therapy.

3-drug vs. 4-drug combinations



Multiple myeloma expert Dr. Joseph Mikhael discusses the use of 3-drug vs. 4-drug combinations for front-line treatment.

Multiple Myeloma Screening



Dr. Joseph Mikhael discusses exciting advances in multiple myeloma screening, including new information from the iSTOP and PROMISE clinical trials.
  • Name: Joseph Mikhael, MD
  • Role:
    • Hematologist-oncologist
    • Professor at TGen
    • Chief medical officer at the International Myeloma Foundation
  • Experience: ~25 years
  • Area of Focus: Multiple myeloma, amyloidosis, Waldenstrom’s macroglobulinemia
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FAQ Resources

Hereditary Cancer: Is Cancer Hereditary?

Hereditary Cancer

Digital Illustration of the DNA

If you recently received a cancer diagnosis, you may be wondering whether your diagnosis has to do with your genetic history, or whether you could potentially pass your cancer risk on to your children. Alternatively, if your loved one recently received a cancer diagnosis, you may be curious about your risk of developing the same type of cancer.

While most cancers are not hereditary, there are some types of cancer that can be inherited from family members. Read on to find out what percentage of cancers and what kind of cancers are hereditary, how you can find out what your risk for hereditary cancer is, and what to do if you discover that you are at risk for inheriting genetic mutations that cause cancer.

What percentage of cancer is hereditary?

While some types of cancer are hereditary, relatively few cancer cases are the result of genetic mutations. Researchers estimate that only 5-10% of cancer cases are linked to an inherited genetic mutation. 

How do inherited genetic mutations cause cancer?

Two types of genes are linked to cancer risk: oncogenes and tumor suppressor genes

Oncogenes turn healthy cells into cancerous cells and are not inheritable. 

Tumor suppressor genes prevent cancer by killing bad cells, slowing down cell growth, and repairing damage to cells. Mutations in tumor suppressor genes can cause cancer by causing the gene to fail at stopping bad cells from growing. Tumor suppressor gene mutations can be inherited. 

If you have a genetic mutation that increases your cancer risk, the likelihood that you actually develop cancer depends on which genetic mutation you have. Some mutations might not carry a very high risk of resulting in a cancer diagnosis. Others can significantly increase your risk of cancer – for example, while only 1 in 400 people have a mutation in the BRCA1 or BRCA2 genes, around 70% of women with the mutation will develop breast cancer by age 80. 

What is hereditary cancer syndrome? 

A syndrome is a group of signs or symptoms associated with a particular cause. Doctors sometimes refer to people with certain inherited genetic mutations as having hereditary cancer syndrome. 

In a hereditary cancer syndrome, certain patterns of cancer may be seen within families. These patterns include having several close family members (such as a mother, daughter, and sister) with the same type of cancer, developing cancer at an early age, or having two or more types of cancer develop in the same person. Examples of hereditary cancer syndromes are hereditary breast and ovarian cancer syndrome, Li-Fraumeni syndrome, Cowden syndrome, and Lynch syndrome. Also called family cancer syndrome and inherited cancer syndrome.

National Cancer Institute

What types of cancer are hereditary?

Inherited genetic mutations can cause several types of cancer. The most common inherited cancers include:

  • Breast cancer (in men and women)
  • Ovarian cancer
  • Endometrial cancer
  • Colorectal cancer
  • Gastric cancer
  • Melanoma
  • Pancreatic cancer
  • Prostate cancer

Facing Our Risk of Cancer Empowered (FORCE) provides a list of inherited cancers organized by both genetic mutation and cancer type here

If my family member (mother, father, grandparent, aunt) has a particular type of cancer, what are the odds that I will also get it?

Your odds of developing a hereditary cancer depends on what kind of cancer and what genetic mutation you’ve inherited. Genetic testing can help you find out your risk of inheriting genetic mutations that increase your cancer risk. Depending on your individual risk, your doctor may recommend preventative measures.

For example, Erika S. discovered that she inherited a BRCA2 mutation from her mother, who received a breast cancer diagnosis at age 28. Since her risk of developing cancer was very high, Erika underwent a double mastectomy.

[My mother] had two breast cancer diagnoses under the age of 50, so one of her doctors at UNC finally recommended that she get tested to see if she had a BRCA mutation. It turned out that she does, which meant that I have a 50/50 chance of carrying it as well.

I saw a genetic counselor, Julia Smith, at NYU Langone. Ms. Smith specializes in working with women in their 20s and 30s who are dealing with a hereditary or familial risk of cancer.

The results came back in three weeks. I had inherited my mom’s BRCA2 mutation, and because of our family history, the surgeons that I met with recommended that I undergo a preventative mastectomy as soon as possible.

I interviewed with a few different surgical teams, and I had a preventative mastectomy in December.

Erika S. (BRCA2 mutation, preventative double mastectomy)
What should I do if I have a history of cancer in my family?

You should let your doctor know if you have a history of cancer in your family, especially if it is a cancer that could be related to a genetic mutation (such as breast, ovarian, or colorectal cancer). It may be helpful to bring a list of relatives who had cancer to your doctor’s appointment. 

If you know that a grandparent other relative had cancer but aren’t sure what kind they had, ask your family members if they can provide this information. Filling out a family tree with health information can help you identify patterns that could be the result of inherited genetic mutations.

Questions about genetic testing? Check out our page on genetic testing, including information about insurance, qualification, and general FAQs here.


Cancer Treatment FAQs and Resources

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Hereditary Cancer: Is Cancer Hereditary?

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Cancers FAQ Side Effects Side Effects

Nausea and Vomiting: Managing Chemo Nausea

Managing Nausea and Vomiting from Chemotherapy

Nausea and vomiting are two of the most feared chemo symptoms, and for good reason — not only do nausea and vomiting feel downright horrible, they can keep you from getting the nutrients and calories your body needs to help you heal during chemo.

While modern-day chemo patients are often given a list of anti-emetics (anti-nausea medications) a mile long, breakthrough nausea can still sometimes occur.

Read on to find out why chemo causes nausea and vomiting, tips and tricks for staying on top of the nausea, and what to do if you have breakthrough nausea or vomiting. 

Why does chemo cause nausea and vomiting?

Chemotherapy is typically given through the bloodstream, so why does it cause nausea or vomiting? According to the American Cancer Society, chemotherapy triggers an area of the brain that then sends signals to your esophagus, stomach, and intestines. This then activates a reflex pathway that causes nausea and vomiting. 

There are often other factors surrounding cancer treatment that can contribute to nausea, including anxiety, other medications, and the cancer itself. Some people will also experience anticipatory nausea or vomiting, which occurs when a person’s body reacts to a sight, smell, or experience where they’ve felt ill before. If your brain associates the chemo infusion room with nausea, you might feel ill just thinking about walking in the door. 

Who experiences chemo-induced nausea and vomiting?

Anyone undergoing chemotherapy might experience chemo-induced nausea and vomiting. According to the Mayo Clinic, there are some risk factors that may raise your chances of getting sick during or after chemo, including:

  • Being a woman
  • Being younger than 50
  • Having a history of motion sickness or nausea
  • Having anxiety
  • Previous experience with morning sickness during pregnancy
  • Having a history of not drinking alcohol

If any of these risk factors applies to you, you may need additional help controlling your nausea or vomiting during chemo.

The biggest and most known is nausea. After my first infusion and into my last, I would have about 72 hours of extreme nausea. This was day-consuming nausea. I would wake up with it, only able to eat a few things, but it did go away. Some people are not as fortunate to have that nausea go away naturally.

I was able to get back into full appetite and energy by about week two after each infusion.What helped me the most with my nausea was having some exercise. That seems counterintuitive, but it stimulates the appetite, gets you out in fresh air, and gives some movement for the body.

Nina L. (DLBCL, Stage 4) 

I would go home and rest, but I would feel great. In the middle of the night or the next day I would just get so nauseated, be so sick.

Jodi S. (Metastatic Ovarian Cancer)

How are nausea and vomiting treated?

Ever since chemotherapy usage became widespread in the 1960s and 1970s, doctors have been looking for ways to control the associated nausea and vomiting. One of the earliest drugs used to control nausea and vomiting in cancer patients was the steroid dexamethasone (nicknamed “dex”), which is still one of the most common prescribed anti-nausea drugs today. 

Every decade, researchers discover more and more drugs that can help cancer patients control nausea and vomiting. Some drugs, like Zofran (ondansetron), were specifically developed to treat nausea and vomiting in cancer patients. Other drugs, like Ativan (lorazepam), were developed for other uses and were later found to also be successful at keeping nausea at bay. You may have taken some of the drugs your doctor prescribes you to control nausea during chemo for other uses in the past. 

Before starting chemotherapy, your doctor should give you a list of drugs to have on hand to prevent nausea and vomiting. Many patients are prescribed a steroid like dexamethasone for a few days after each chemo session alongside other drugs like Zofran, Ativan, prochlorperazine, olanzapine, or medical cannabis. Your drug list may include instructions on the order in which you should take the drugs.

While some patients might be able to control their nausea with fewer medications, check with your doctor before cutting any medications out of your regimen. It is best if you stay ahead of the nausea and vomiting rather than under-medicate and then attempt to play catch-up with your medication after you’ve already started vomiting. 

While the nausea continued, it did get better as I began to take the anti-nausea meds more proactively. I also never had mouth sores again after she prescribed medication to prevent them. They weren’t a guarantee, but thankfully they worked for me! 

Stephanie C. (Primary Mediastinal B-Cell Lymphoma, Stage 3, Double Expressor)

They had given me anti-nausea medications, but I felt fine the day before, so I didn’t take them. I learned very quickly that even if you’re not feeling nauseous, you should still take the medicine. 

Stefanie H. (Invasive Ductal Carcinoma, Stage 3) 

My doctor kind of punched me in the arm, said, “Don’t be a cowboy. Take the [anti-nausea] medicine.” He’s right. I take it so you don’t have the symptoms, but you’d still have that feeling in your stomach.

Richard P. (Relapsed/Refractory DLBCL)

I really feel like I could take the anti-nausea medication and I learned after the first one, I’d just take it that night when I went to bed, take it when I wake up, just keep on that regimen. It really kept the nausea down.

I only threw up a few times during the whole process. After the first time I was in a lot of pain, I always just took the meds beforehand and just kept taking them until I felt noticeably better because it was so much easier to stay on top of it than to get behind.

Jodi S. (Metastatic Ovarian Cancer)

Anti-nausea drug regimens for chemo vary depending on the type of cancer, type of chemo, institution or doctor, and your individual tolerance. Always check with your doctor before combining medications or leaving a medication out of your daily regimen.

They’d start [my chemo] with anti-nausea medications. That would be for about a half-hour or so. Then an hour later they’d start the AC (Adriamycin, cyclophosphamide) which wasn’t very long, maybe two hours. 

The first couple of days I remember feeling pretty good. I would even go work out to keep up my exercise during treatments. But then during Day 2 or 3, little bit of nausea.

They give you anti-nausea medications that I took. I remember just mostly being in bed those two days. I was also working part-time during this time so I timed it, I was able to time it so I’d have the five days – they say you won’t feel well – off and then I’d go into work on Day 6 or 7.

The second week, you feel pretty good, pretty back to normal. And then you start again. So it was usually about five days where I felt stomach queasiness. I remember not feeling  like eating much. 

Margaret A. (Invasive Ductal Carcinoma [IDC] & Ductal Carcinoma In Situ [DCIS])

Beth A. describes her 3-medication regimen:

The first drug is Zofran… If you’re not feeling any better from that, and that usually does the trick for most people, then you take Compazine which is prochlorperazine… If you’re really still feeling sick and nauseous, the last one is Ativan which a lot of cancer patients are on and take anyway for anxiety and different things. It helps counteract some of the dexamethasone side effects as well.

Beth A. (Relapsed Refractory Multiple Myeloma)
Scott

I had nausea, but it was manageable. I had three different nausea medications running 24/7. That was a suggestion from some other people, and it helped so much. I want to be that for others. That’s why I want to be open about my experience.

Scott C. (Multiple Myeloma, IgG Lambda, Heavy Chain, Stage 3)

It was three days of rest and a little bit of nausea. I actually only threw up once before dinner one time. Then it was gone.

Other people have had different experiences, but my care team definitely prescribed me all the anti-nausea medicine and antacids.

I think I had 12 prescription bottles on my bedside table at one point. There are fixes for the worst side effects, which are nausea and sleeplessness.

CC W. (Hodgkin’s Lymphoma, Stage 3)

For nausea, an amazing new FDA approved drug called Varubi (rolapitant) that helped suppress much of my nausea. This drug was used by our cancer center and it was one of the best things because it probably kept my nausea suppressed to 10- to 20-percent, though I got nauseous at the end of two weeks.

Helicon K. (Hodgkin’s Lymphoma, Stage 2A)

I take Zofran, which is a pretty common nausea medication. They have stronger stuff if it really starts to affect you.

Evan L. (Acute Lymphoblastic Leukemia [ALL])

Some people, like Bobby J., have trouble with the medications. If your anti-nausea medication is causing you to feel depressed or anxious, talk to your doctor about alternatives.

The worst side effect from the nausea medicines was it basically put me in a depression. I lied in bed, did not want to get up. There were three different medications they gave me. I’m not sure what the three were, but it caused me to go into depression.

They just called it a cocktail, and it was three different anti-nausea medicines. In Cycles 2, 3 and 4, I did not take the anti-nausea cocktail. I believe I took some Ativan.

Bobby J. (Mantle Cell Lymphoma, Stage 4)

They do give you anti-nausea drugs, and they give what they call pre-meds. One of them is Zofran. Dexamethasone was also one of my pre-meds, and those drugs really did a great job of controlling my nausea to the point where I essentially had close to a nausea-free chemo.

Luis V. (DLBCL)

I was given some medication for discomfort. When my anti-nausea medication stopped working  (usually by Day 3 of chemo), I was given Ativan through an IV. Ativan helped with the nausea, but it made me not remember anything after I received the dose.

Donna S. (Primary Mediastinal B-Cell Lymphoma, Stage 1 to 2)

Are there any natural remedies for nausea or vomiting?

While you should make sure you’re taking your prescribed anti-nausea medication, there may be days when your anti-nausea medications don’t completely suppress your upset stomach. In those cases, natural anti-nausea remedies may help you control your nausea. 

Ginger

According to the Mayo Clinic, ginger is clinically proven to reduce the severity of nausea for patients undergoing chemotherapy when taken in combination with standard anti-nausea medication. However, studies show that ginger taken alone doesn’t do much to help control nausea for patients undergoing chemotherapy. Ginger can interfere with some medications, so check with your doctor before adding this supplement to your diet.

Peppermint

Some patients find relief from nausea by smelling peppermint oil or sucking on a peppermint candy. Studies show that consuming peppermint can help with symptoms of irritable bowel syndrome, and that inhaling peppermint oil can help control nausea. Use an essential oil diffuser or roll-on for quick aromatherapy relief.

Cold liquids

Remember sipping Sprite when you were sick as a kid? Sipping a cold drink, such as ice water, Gatorade, or club soda, helps some patients control acute nausea. Cold liquids can help calm the nervous system, sooth the stomach, and prevent dehydration. Be sure to sip slowly if your stomach as bothering you to avoid triggering vomiting.

Citrus

Fruits such as lemon and lime have been shown to help prevent nausea in some people. If you’re feeling sick, try smelling some lemon essential oil or squeezing a fresh lemon into your drink. Check with your doctor before using citrus — some fruits, such as grapefruit, can make your cancer medications less effective. 

Food

You may find that your stomach may be more sensitive when it is empty. If you’re feeling ill, try having a carbohydrate-rich snack like pretzels or cereal. If you’re prone to early morning nausea on the days after chemo, keep a granola bar at your bedside in case you wake up feeling sick.

Caitlin

For me, when I was nauseous, I found that it was my body needing something. Either I was hungry and didn’t know I was hungry, or I was thirsty and didn’t know I was thirsty. Maybe I was even sleepy and didn’t know I was sleepy. You’re on all this medication, and it throws your body out of whack. When I would get nauseous and it was too much for my anti-nausea medicine, it was usually as simple as drinking a glass of water or taking a couple of bites of a sandwich.

Caitlin J. (Invasive Ductal Carcinoma, Stage 2B)

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Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma

Luis’s Stage 4 DLBCL Non-Hodgkin’s Lymphoma Story

Luis’s Stage 4 DLBCL Non-Hodgkin’s Lymphoma Story

Luis shares his non-Hodgkin’s lymphoma story, getting diagnosed with stage 4 diffuse large b-cell lymphoma (DLBCL), undergoing R-CHOP chemotherapy, and managing physical and emotional wellness.

Thank you, Luis, for sharing your story!

A man with a black hat giving a thumbs-up
  • Name: Luis V.
  • Diagnosis (DX)
  • Age at DX: 57
  • 1st Symptoms
    • Persistent cough
    • Extreme fatigue
    • Night sweats
  • Treatment
    • R-CHOP Chemotherapy

Table Of Contents
  1. VIDEO: DLBCL Diagnosis
  2. VIDEO: R-CHOP Chemotherapy & Side Effects
  3. VIDEO: Living with Cancer
  4. More DLBCL Stories

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


VIDEO: DLBCL Diagnosis

Introduction

Tell us about yourself outside the cancer story

The elevator speech on Luis is that I’m a Cuban-American and a first-generation immigrant. I grew up on the East Coast and went to school out there. I went to law school here in Chicago and met my wife in law school.

She was originally from the West Coast and wound up settling in Chicago. After a decent run at the corporate world, I’ve spent most of my legal career in government and public service. 

We live on the north side of Chicago. I work for a government agency that does a lot of work with the disabled and elderly population. My wife does a lot of estate planning. We have two kids, one of whom is currently on a gap year and starts college next year, and the other is a junior in high school. 

We’re almost empty nesters. With having a young kid away at school, they may not be physically present, but I’m already starting to get the notion that they may be very present in your thoughts.

It’s empty nesting. It’s not empty caring or empty worrying. Knock on wood, if things go well, my baby boy could be 40 with serious male pattern baldness, and he would still be my baby.

First Symptoms

  • cough
  • fatigue
  • some weight loss
How did you first know something was wrong?

The very first thing that happened was what I would describe as a nagging cough that just felt different. I still remember very clearly being at my office at my desk. It was an afternoon right around the 1st of September, and I had sort of this slight coughing jag. Even then, I was like, “Huh. Well, that’s interesting.” Then it just kind of continued.

At first, I didn’t give it a ton of importance because for the past 2 or 3 winters, I had gotten some pretty bad pneumonia and bronchitis. I just assumed I didn’t win the lottery when they were giving out lungs, that my lungs are just weak or they’re prone.

I really didn’t think that much of it, but the cough didn’t go away. It kept expressing itself to the point where I got worried enough to be like, “Well, I guess this is my fall call to my primary care doctor so that he can fix up my lungs.”

What kept you going to the doctor even though your X-rays were clear?

I think what kept me going in was the fact that the cough was getting worse and just would not go away. I was also starting to experience this kind of fatigue.

I think a lot of the cancer websites really get it right when they describe cancer fatigue as the fatigue that doesn’t go away when you sleep or you rest.

I also think I was getting thinner, but one of my reactions to the pandemic was to work out obsessively. Again, there was a symptom that could have been masked. It’s like, “Hooray for me, I’m losing weight.”

It’s extraordinarily difficult to articulate with the available adjectives what about the cough and the fatigue made me feel bad. The cough was persistent, it was worsening, and it would respond to the steroids initially, but then as soon as I stopped taking them, it would be back.

The best way that I can describe it was that I started to get this really nagging, frightening feeling in the back of my mind: “Something has a hold of you, and it’s not letting go. So what is it?”

That feeling of “something has a hold of you” was really my first emotional challenge in my illness, even before I knew I had it.

Listening to your inner voice

Listen to that inner voice saying, “Dude, something is off.” Yes, you’ve had a cough the last 3 winters and yes, the last 2 winters you usually wound up on some form of antibiotic therapy or a couple of days off work or whatever, but it just felt different.

Because it was so long and fatigue-centric, for lack of a better term, my first hypochondriacal run at anxiety was something like COPD. I made the mistake of looking up COPD. Google Medical School.

As you know, once you get on Google and look up medical stuff, you can convince yourself that you have 37 different diseases before you’re done in the first hour. Really, it was cough and fatigue, both worsening. It’s difficult to describe.

You don’t want to do too much about retconning, right? Describing what was going on then through the lens of what you know now. But even then, there was a very anxiety-provoking sense of permanence about it. Like hey, this isn’t going to go away, right? There’s a new player on the field, and they’re not going to take the bench.

Night sweats

Right. The night sweats were… I would say if the fatigue and cough are red flags, the night sweats were like a huge Goodyear blimp flashing: “You have a problem.”

They were incredibly uncomfortable and went from, “Oh, I wonder if I turned up the heat too high,” or “Gee, maybe 2 comforters is a bad idea,” to me getting up, feeling incredibly poorly, having to take off a T-shirt that literally felt like I’d gone swimming in it, and then going back to bed. 

Getting Diagnosed

You went to a pulmonologist, got another inhaler and then got a CT scan. Did you push for that CT scan?

I didn’t push for the CT scan because I didn’t have to. These are COVID times. Around that time, if somebody says, “Oh, I went to…” you’re doing telehealth, right? There was 100% telehealth for a certain period of time.

I’d called my usual hospital network, and their pulmonologists were booked incredibly late into the year. If I had just sat with one of those appointments, I don’t know what would have happened. I remember I spent an hour during a lunch break on my phone calling anybody and everybody who would listen about a pulmonology appointment.

I finally got through to a pediatric pulmonologist who said, “We specialize in pediatric pulmonology, but I have a friend at this hospital system.” It was one that I was familiar with, but one that I would never have thought of going to. They were perfectly lovely and had a good reputation and everything, but they were just outside my wheelhouse.

I called, and I was able to get an appointment and was very excited for that appointment. The days went by like years and the seconds ticked by slowly, and I finally got to describe my symptoms to the pulmonologist.

He was very reassuring, like, “Well, we don’t know. It could be any number of things, which I think are addressable.” He was concerned at that point about my weight loss, because I think at that point I was down 17 pounds from what I considered to be my baseline weight.

How long did it take for you to drop that? 

About 2.5 months. 

What was it like getting a CT scan?

I’d had an MRI. I’d never had a CT scan. At this point, I was an incredibly anxious person, because the CT scan was going to tell me something. Nothing appeared to be working.

One of the things that I think that the CT scan folks did very well, and that they consistently did very well throughout my treatment, is that they didn’t let me know anything right away. There were no hidden winks or thumbs up or people crossing themselves.

I think it’s important for folks who are just starting out on this journey to understand that good CT scan and PET scan specialists are going to leave interpretation of the results to the MDs, the radiologists or the pulmonologist.

If your CT tech is having a bad day and being kind of sour and inexpressive for your CT scan, it doesn’t mean that they’ve found anything. It really is a case of, “You don’t know what you don’t know.”

In terms of the mechanics of it, it was very quick. I went in, and they were professional. They explained the process. They prepped me. They did it, and I was gone.

How long did it take to get the results? 

The way that I remember it is that it took about 2 days.

Did you have scanxiety at first?

Yeah, and it was an incredible amount of scanxiety. I experienced scanxiety after that, and I will continue to experience scanxiety for X amount of time into the future. One message to my cancer brethren is, “Scanxiety, you can deal with it.”

Tell us about the day you got your results

It was a phone call that I got in a barber’s chair. I was getting my hair cut, and I got a phone call. I sort of missed it. At that point, I was really monitoring my phone, but I was getting a haircut, and my phone was in my pocket.

It was a message from the pulmonologist asking me to call. I told my barber, who I had been going to for a while, “Hey, I’m sorry, but I got to skip part of this. I’ve got to go.” I called him back. I had to leave a message.

I drove back home and actually was so anxious that I called the on-call service for the health system to see if they could help. They were very nice and calling me back, but they were like, “No, it’s got to be him.”

He finally reached me just as I was going into my garage. My garage door came down. It’s winter, it’s cold, and my garage light went out. I was sitting in a dark garage, in a car, and the pulmonologist said, “I’m sorry to tell you that I looked at your CT scan, and there were some findings.”

At that point, I sort of finished a sentence for him, and I don’t know where it came out of. I don’t know if I had been online or if I had read something or whatever, but I was obviously prepped because he said, “Yeah, there have been some findings in your lymph nodes,” and I said, “I have lymphoma, don’t I?”

He said, “I think that’s what it is, but I’m going to send you for a biopsy to make sure. It could be other things. You have to rule out sarcoidosis and a number of other things that can give you those uptake results in a CT scan.” And there you have it.

I think the rest of the conversation — unlike other conversations that I had later in treatment — kind of turned into a blur. I remember him saying that lymphoma was treatable and he was referring me to an oncologist and all of this.

But there you have it: you have cancer. That’s the call.

How did you process the news in the moment?

My garage is 20 feet from the back of my house. Initially, I think, it was a shock. I don’t remember actually making the walk, but I somehow got myself from my car to my house, and I went through the back.

My kids were home, so I just said hello like I regularly do. At that point, the fatigue had gotten to the point where I was doing more lying down than was good for me. I went upstairs to the bedroom and laid down.

It’s so incredibly hard to describe. You probably relive that initial moment where somebody tells you that you have cancer a number of times. It’s a little bit like the fable of the blind men touching the elephant.

Each time I emotionally visit that news, a different aspect of it comes to the fore. There’s shock and fear, there’s anger, there’s a sense of loss, there’s denial, and all of that just is playing out.

It’s just a disastrous emotional kaleidoscope, and it’s hard to keep track of the swirling colors.

I think initially what came out when my wife came in was numbness and denial. Numbness and denial are generally not emotions that people are proud of, but those are the ones that popped up for me. 

My wife came in to the room. I said, “Hey, could you close the door?” She closed the door. “Could you come down right next to me?”

She said, “What?”

I told her, “I had a talk with the pulmonologist. I have lymphoma, and it’s a type of cancer.”

She started to cry, and I held her and told her, “Hey, it’s going to be OK. I’m not scared. This is something that’s treatable. We can get through this.”

I was very brave in that moment. I was sort of telling her all the things that she needed to hear — and probably, to be honest, all the things that I needed to hear. That’s not who I turned out to be later, but I think that’s who I was in that moment.

I think when you get a cancer diagnosis, it’s not just the initial talk with the healthcare provider. The fact that you have cancer hits you any number of times throughout the course of your treatment, and there is a way in which you kind of relive that initial moment later on in different forms.

I remember — and it doesn’t happen so much now, and I’m not quite sure why — nights where I would be sleeping, dreaming about something completely unrelated to my illness, and I would wake up. I would just sit upright in bed, and my wife would be asleep. The room would be dark and all alone.

I would just say, “You have cancer.” Not “I have cancer.” I would say, “You have cancer.” It was almost like this other person.

It hits you in different forms, and I think that one of the things that characterizes my initial response to getting a cancer diagnosis is that I was very honest and dishonest at the same time.

I was very honest in the emotions that I was having. They’re very human emotions. There’s fear, there’s anxiety, there’s rage, there’s depression, there’s hopelessness, a little bit of defiance thrown in for good measure.

I think what I was dishonest was about was owning up to having those emotions and understanding that I was at the beginning of what was going to be a very, very difficult process.


VIDEO: R-CHOP Chemotherapy & Side Effects

Chemotherapy

What was the treatment conversation with your doctor? Did you do your own research?

It was pretty straightforward and very helpful. My pulmonologist called me back to say that the biopsy had come back as diffuse large B-cell lymphoma, stage 4B. I actually found out that it was double-expressor from my oncologist later.

I had an initial oncology appointment with an oncologist and with 2 coordinating nurses present. That was the first time that I heard that lymphoma was treatable and might even be curable.

He said that R-CHOP, in my case, was the preferred chemo and that it was generally well tolerated by patients and could be very effective.

He said that I would need to get a port inserted so that the chemo could be administered efficiently. He asked some questions, and I answered them. My wife was there, which was good. This was still sort of high COVID.

He laid out R-CHOP and the schedule, which was 6 rounds. He also said that because there was extranodal presentation in my lower spine, I would also be doing methotrexate prophylaxis inpatient to guard against the possibility of CNS involvement or the disease spreading to my brain.

He set up a schedule and a follow-up appointment, and I was off to the races. The next thing after that was to get a port inserted — which turned out to be a problem — and then starting my first R-CHOP on December 22, 2020.

You ended up getting a PICC line instead of a port. What are your tips for dealing with a PICC line?

If you are going to be getting a PICC line, I think it’s very important to make sure that you don’t go home until you have all the flushing supplies and that you have had a conversation with someone about what you’re going to be doing.

You have to keep it very clean, and you have to keep it flushed with heparin. At least in my case, it required nightly maintenance.

There’s a whole thing to it: take off the cap, sterilize your hands, flush it, put it back, get that little mesh sleeve back up. In a way, you know it’s on when you have a PICC line, because there’s this thing sticking out of your arm connected to some pretty major blood vessels, and that’s where the chemo is going to go.

I found out in the parking lot before I went in to get a port inserted that one of my tumors was too large to have a port placed and that I would need a PICC line. I wound up getting a PICC line in my left arm.

»MORE: Read patient PICC line experiences

You had 6 cycles of R-CHOP. How many weeks did you have between cycles?

I did R-CHOP-21, which is R-CHOP every 21 days. The length of the infusion cycles changed. My first one was longer because they wanted to slow-play the rituximab to make sure that I didn’t have a reaction to it.

Did they say anything to you about patient reactions to rituximab?

I’m sure they did for my first R-CHOP and maybe my second, but I was just still kind of reeling, so I don’t remember everything that was said.

I do remember having a pretty extensive conversation with my practitioner about the drugs that were going to be given to me. He did send me for an echocardiogram to make sure that my heart could sustain the chemo. One of the drugs in R-CHOP drugs can be fairly cardiotoxic, so they want to make sure that your heart’s in decent shape before you go.

The only thing that I remember about the rituximab is being specifically told that my first infusion would be longer because they were going to do slow Rituximab just to make sure that I didn’t have a bad reaction to it.

How did you feel after chemo?

I would probably say that a week to 10 days after my first R-CHOP was probably the best that I had felt in a long time. I think that’s because the “P” in R-CHOP is prednisone, which is a pretty powerful steroid.

When I took the prednisone, my cough essentially went away. My cough had been the bane of my existence. The prednisone also helped with the fatigue and appetite issues. I felt like, “Oh, the prednisone will help with my weight.”

Initially, I have to say, I felt better as opposed to worse. I don’t think that is an uncommon response, particularly if you’re stage 4B, because the cancer is everywhere. You have all these B symptoms.

I think there was also the emotional lift of, “Hey, my team is finally getting a point on the board. I’m finally fighting back.”

After my second R-CHOP, I did have hairs in the sink, and my hair was thinning. I was maybe starting to feel a little bit more tired, but I still had what I would consider at that point — even after my second infusion — to be relatively significant relief from symptoms. I would say that the first third of my R-CHOPs, other than the discomfort from the PICC, weren’t terrible.

They do give you anti-nausea drugs, and they give what they call pre-meds. One of them is Zofran. Dexamethasone was also one of my pre-meds, and those drugs really did a great job of controlling my nausea to the point where I essentially had close to a nausea-free chemo.

»MORE: Read other cancer patient experiences with chemotherapy

Managing Side Effects

What’s your advice for people dealing with side effects from chemo?

The one thing that I would say to people starting on treatment is this: if you have a side effect that is affecting your quality of life, do not assume that there’s nothing that can be done about it.

Contact your provider. Contact them early. Contact them often, because these days there are a variety of medications that are very effective, even with pretty severe side effects.

Do not suffer in silence.

Do not say, “Hey, I’m a cancer patient. I’m getting chemo. I’m supposed to be throwing up. I’m supposed to feel like this.”

You may feel like that, but never accept it. Be at peace with it only after you’ve gone through all of the lines of palliative meds for side effects.

Major side effects of fatigue and diarrhea

I think when people didn’t go through the chemo think of the fatigue and diarrhea, it doesn’t sound like very much. But it is incredibly tough on your quality of life. Both of them.

Tell us about the fatigue

Cancer fatigue is like nothing in the world in the sense that it is a tiredness that that is bone deep, and it does not respond to the things that you would imagine would make you less tired, like, “Hey, I’m going to take a nap. I’m going to get an extra couple of hours of sleep.”

It was a level of weariness that literally interfered with my ability to be. It interfered with my existence.

I was very flattened. It was tough for me to do a lot once it hit. It was a real struggle to do things like get out of bed, shower, put on clothing, come down to my basement office, log on to work, eat, do dishes or what have you.

One of the things that I had told myself was that I was going to be as normal presenting as possible for my kids. I was going to do the things that I needed to do, and I was not going to be one of these folks who… well, let’s just say I didn’t want to really present badly.

But the thing about cancer fatigue or chemo fatigue, more accurately, is that even if you look like your old self, you’re doing something like standing up and scrubbing that big pan that you just made a huge dish in or whatever, and things might look OK, you don’t feel OK.

Two people walking side by side down the street, one of them doing chemo and one of them not doing chemo, look very similar, but they are having an experience that is worlds apart.

The person who’s having chemo fatigue could just be hanging on. “You’ve got to make this next half block. I got to make it to the light. OK, I made it to light. I got to make it to the next mailbox.” 

What helped with fatigue?

The one thing that really, really helped — and I think the science really bears this out — is when I was emotionally and physically able to move and go out for a walk.

It didn’t have to be a ton. You certainly don’t want to press yourself that much when you’re mid-chemo, like “Heck with this, I’m going to walk for miles,” because you’re going to pay the price.

Practical advice for folks going through chemo is that you’re going to have a reaction to your environment. One of the things that sometimes happens with chemo is that you get very temperature sensitive. I actually got very cold sensitive, and I live in Chicago.

One of the things that my wife did, God bless her, was to say, “You know what? I don’t care what it’s been. I don’t care what it costs. We’re getting you some Arctic Explorer coat, because you’re getting out there, regardless of the temperature,” and that was incredibly helpful.

Tell us about the diarrhea

The diarrhea was very difficult to deal with because it wasn’t even that it was constant, but that when it grabbed me, it just took over all of my intellectual and emotional attention and physical reality for however long it took. When I had bouts, that’s what I was doing. I was breathing, and I was having diarrhea, because that’s what there was.

Was there a time in the cycle it hit the worst?

It got worse as it went on. I would say that I went from a constipation-ish reality to the constipation/diarrhea dichotomy, which is extraordinarily difficult to explain to people who haven’t been through it.

There are some things that you get through by going through them.

Then the constipation went away, and I was left with just the diarrhea. Look, people’s bodies do things, and you just sort of have to be adult about describing it. I didn’t have a watery version of diarrhea. What I had was a very loose and very constant version of it.

One of the things that really affected me was, I had already been having issues with my weight. I had a complex about the way that I looked, and I would have diarrhea so often and for so long that it just really reinforced this narrative of, “Dude, you’re wasting away. You’re literally pooping out your life into this bowl, and there’s nothing you can do.”

Helplessness

I did reach out to my care team. I did take my own advice. I said, “Hey, this is kind of wacky,” and they did give me loperamide for the diarrhea and that helped.

One of the things that became clear to me was that until I was done with chemo, I was not going to be normal in terms of bowel movements and bowel movement quality, whatever you want to call it. It was just something I was going to have to go for.

That’s another message I would give to people who are in the middle of the chemo: there are some things that you get through by going through them. There’s no off ramp. There’s no helicopter that’ll fly over the traffic jam. You’ve got to get through. But I think that the good news is that you can get through. You can.

I think one of the things that can help is to do the things that will help you. Don’t suffer in silence. Call your care team, say, “Hey, I really have problems with diarrhea,” and then have them prescribe something, and then get back to them about whether or not it’s working. Keep that dialogue open.

Tell us about the methotrexate prophylaxis that they prescribed because of your spine

First of all, I did not have the intracathetal. I had the high dose through my PICC line, so I had to do it inpatient. When they admit you, they take various levels. You do get pre-meds as well, and then they give you the infusion.

I don’t recall the actual infusion being that long. If I remember correctly, my first infusion started perhaps mid-evening, and it was over by midnight certainly. It’s not that long. What ends up happening is that methotrexate is so toxic that at that point they start giving you rescue bicarbonate of soda. You have to urinate constantly and keep track of your output.

Methotrexate side effects

Then they do PH testing, and then you need to do methotrexate levels in your blood. Methotrexate, much more so than R-CHOP, has a reputation of having more neurological side effects because it does penetrate the blood-brain barrier. Other than some very slight dizziness, I have to say that I escaped the methotrexate side effects, which were indistinguishable from what was already going on.

Treatment Response

Mid-treatment PET scan showing a strong response

I still remember to this day, as if it was tattooed on my hand, the radiologist’s opening comments — literally the first words that I read — were, “Excellent response to treatment.” That was the first sentence. It showed resolution of a lot of the swelling of the lymph nodes.

It showed that my Delta SUVmax, which is another very technical term that is basically a measure of how active your cancer is in terms of absorbing the marker that they give you when they do a PET scan, was down by over 90%. It was a very, very strong response.

It was one of the first times that I thought, “Wow, you might not be dead by spring. You know what? You might actually have a chance.”

What was your oncologist’s message to you at that point?

My oncologist, like a lot of oncologists, is not necessarily a party animal. But I’m a huge fan of his because he was, I felt, a very honest, grounded and ethical practitioner.

I think a lot of oncologists are very careful with what they say, and one of the things that he said was, “Look, no one can promise you that you’re not going to relapse, but this is an incredibly strong response. It’s actually a better response than I expected at the beginning of your case, and I think that you have a very strong possibility to have a very good outcome.”

Deauville score of 2 at your mid-scan

Yes. There’s very little space between 1 and 2 Deauville scores. They’re both considered “CR,” or complete responses. They’re both things that you absolutely want to see.

I had an oncologist who would be the person who did the rounds when I was doing methotrexate prophylaxis, an inpatient oncologist for lack of a better term. She looked at my interim PET scan results, and said “Medically speaking, you’re in remission,” which is what I think Deauville 2 is. It was the first time that I heard remission applied to my case, and it was quite a moment for me.

What was your reaction to learning you had a Deauville score of 1 at the end of treatment?

I certainly cried when I read it. It was just such a sense of relief, but it was also a moment of “OK. What now?”

I think that probably the best part, the absolute best part, of getting a Deauville 1 and a zero uptake — zero SUV on my last scan was nothing to do with me — was my ability to tell my family. That was really the prize, to be able to tell my wife, “Hey, look at this.” To be able to sit my kids down and say, “Hey, dad’s in remission.”

That was really the icing on the cake. But again, it’s kind of like, what are the next steps after that?


VIDEO: Living with Cancer

Managing Emotions

How do you balance the responsibility of your family’s emotions with protecting yourself?

The best advice that I can give to people who are newly diagnosed, struggling with the emotional impact of the diagnosis, or struggling with survivorship is that you have to stay connected to the world of the living, whatever that means for you.

When you get a cancer diagnosis, I don’t care how optimistic you are or how strong you are or how spiritual you are — it’s a shock. Cancer may be a disease of the bones, it may be disease of the brain, it may be disease of the B cells.

But it’s also a disease of intense loneliness. It’s a disease of intense fear, and it’s a disease of an intense disconnection with who you were and who you thought you might be. You have to fight against that.

It’s a disease of intense loneliness.

That’s a fight where, thank goodness, little victories mean a lot. You do not need to be that person who’s running a marathon while dragging their chemo thing on wheels. You don’t have to climb Mount Everest. You don’t have to do some 10 by 20 foot mural about what it meant to you. 

Taking care of others while you are going through this is a form of taking care of yourself.

But at some point, you’ve got to dig deep, and you’ve got to find that little scared, almost imperceptible voice that says, “Hey, I’m alive,” and you have to do something with it.

So for me, was I concerned about leaving my family too soon? Was I in fear of the magical story that’s been my love story, my marriage with my wife, ending?

That hurt. It hurt so much. But it was also part of the cure.

Taking care of others

It was like, “Hey, you want to die today? You want to give up today? That’s great. Be honest, that’s where you are. But what’s going to get you out of bed? What’s going to get you to actually make toast? What’s going to get you to log on?”

Well, I want my kids to be proud of me, whether I live or die. I think that yes, take care of yourself, but understand that as the patient — and I think this does not get spoken about enough in cancer circles or survivor’s forums or whatever — it’s very important that you take care of yourself. It is equally important to recognize that taking care of others while you are going through this is a form of taking care of yourself.

For example, I work at an agency that deals with populations like the disabled and elderly, and one of the things that I do is that I find resources for them. These are folks who have maybe been taken advantage of, and they have very little in terms of a social network or resources for self-advocacy.

My ability to force myself to work through my illness was crucial to my survival because no matter what I felt like, no matter what was going on in my head, no matter how many times I sat on the pot, no matter how tired I was, if I logged on to my computer and spoke to my team and did my job, I was helping other people.

I was here in the world we live in, and I was helping others. I had a purpose. I was not a cipher, I was not a number, I was not a statistic. I was a person whose words and whose ideas and whose actions mattered.

What were your emotions about hair loss?

I think people have different sorts of ways of dealing with things in terms of impact. For me, what was impactful was not the day that I shaved it, but the week to 10 days that I let it get sort of ratty.

The slow process of, “Oh my goodness, my comb is full of hair, oh jeez, look at the drain. Oh my God. I’ve done the best that I can, but I can still see three inches of scalp.”

That sort of slow denigration and loss of your visual self-image was hard for me. When I shaved it, it was like, “You know what? I’m not going to negotiate with terrorists. I’m taking control; I’m taking it all off. Me and my bald head are going to fight you until the last fricking hill.”

For me, it was the sense of helplessness, watching it go slowly and knowing that it was just going to happen. That really was painful.

When did you shave your head?

I believe it was between cycles 2 and 3.

Pessimism and Anxiety

What helped you get through scanxiety?

I think there are 2 answers to that question. One of them is just time. Your scan is on a certain date, and that’s it. You’re going to get the results on a certain date, and that’s it. You’re going to get through it regardless.

The question is, “What’s your emotional state going to be while you get through this?” For me, one of the things that helps me with the scanxiety— and I will tell this to anybody who’s newly diagnosed, in the middle of treatment — is that at some point, you have to trust the person that you become fighting cancer.

You just have to trust them. You have to be proud of them, and you have to let them help you. Because you’re not who you were. That person is gone, and they’re never coming back. But it’s still you, and there is this new person. 

I would say for scanxiety, trust the science. Understand that optimism is not a dirty word. It sort of is in my emotional framework, but that’s just me. It’s not really a dirty word. You just don’t know what you don’t know.

I think one of the things with cancer is, “Wow, I’ve been tagged with this. What else does the universe have in store for me? Geez, if I got cancer, it must mean that my first scans may be a disaster. Geez, if I got cancer, it must mean that it’s already in my hips. Geez, if I got cancer, it must mean that I’m going to be refractory.”

But you don’t actually know those things. Those are emotional voices reacting to pain.

How did you survive cancer as a pessimist?

I would say that I’m naturally very pessimistic person, and I was very pessimistic when I got diagnosed. My wife got tired of listening to me. “I’m a goner. It’s all over.” You can only imagine like the shock, right?

I did not do things that helped my emotional state for a significant portion of my treatment. I was too passive. Not in terms of dealing with my oncologist or whatever. I was sort of dealing on two tracks. One track was who I was a patient, and that person was active, listening to my doctors’ recommendations, emailing them, making all of my appointments and moving forward.

The other person was who I was when I was not dealing with the medical side of things, and that person was a disaster for a long time. They were scared. They were helpless. They weren’t moving around. They weren’t taking those walks. And that’s OK. 

I’m not ashamed to say that my symptomatology, then my diagnosis and then my early treatment just flattened me as a human being. It took so much for me to have the ability to fight, the ability to be and the ability to connect.

My message for my fellow cancer tribesmen is this: if you’ve been diagnosed — or you’re having the symptoms, or you’re doing treatment — and you’re doing everything wrong. Emotionally, you’re just shattered and everything’s broken, and there’s nothing except this cold wind that blows through you every day from the moment you get up to the moment you fall asleep…

That’s OK. You can still survive, and you can still turn it around. Don’t feel bad. It’s all right. Yeah, you’re a lump on the floor. You know what? Lumps on the floor? They have a right to live, too. 

Survivorship

Fighting the guilt becomes a cycle

Right. I think that it goes back to what I said about how you should trust yourself as a cancer patient.

Think about media representations of cancer and popular ideations of what a cancer patient might look like and what they’re supposed to do. We’re supposed to be noble and helpless. We’re supposed to live in the moment every day and live every day as if it was our last, while essentially having no hope that we’re going to have an outcome that’s anywhere near like the life of someone who doesn’t have cancer.

It’s such a harmful and skewed vision of who we actually are. We’re human beings.

Not having cancer is not a guarantee that you’re going to make it to that 100-year birthday party or anything like that. It’s no guarantee of happiness, and it’s no guarantee of anything. At some point, understand that this emotional damage, this fear, this real need, is part of the journey. I think one of the things that helps is when you take your first step beyond it.

It’s not perfect, right? Because here I am. I’ll be 6 months in remission in a few days. Gee, that’s great, right? What does it mean? Well, it doesn’t really mean anything in and of itself. Doesn’t mean I’m cured, doesn’t mean that I’m going to be alive in 10 years. It doesn’t mean I’m going to be alive in 20. What it means is that I’m six months in remission, and I’ve got today.

What am I going to do today? I’m going to help somebody today. How am I going to be seen today? How am I going to see other people today? That’s really important.

I would encourage people when others say, “Live every day as if it was your last,” to really shut that message down. Because to me, that message works best when you cut it in half, and you just leave it at “Live every day.”

A man with a black hat giving a thumbs-up
Honoring your journey

One of the things that I told myself was that I was going to work the non-Hodgkin’s lymphoma survivor color into my life somehow, which is lime green — which, you know, they couldn’t have gone with something more subtle? But hey, it works for me, right?

Initially, I had all my nails done in lime green because I literally told myself at one point in my treatment, “If you don’t die right away, you’re going to do this because this is your ‘thank you and I’m here’ to the universe.”

Then I decided that 10 lime green nails is probably a little much. I went with a more subtle color, but I kept the one on the wedding ring finger.

Next up is going to be my lime green ribbon tattoo with the words “No one fights alone.” My barber is very into tattoo and body piercing as a way of body expression and self-expression, so I was telling her about my plan.

She said, “I just got to warn you, once you get one tattoo, it’s a rare person who can stop.” So we’ll see where it all ends.


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Cancers FAQ Side Effects

Radiation Burns: How to Cope With Radiation Burns

Coping with Radiation Burns

A woman with a radiation mask on

What are radiation burns? 

Radiation burns are burns caused by radiation therapy. While external beam radiation therapy is great at killing cancer cells, it also kills healthy skin cells. Since radiation therapy usually occurs every day for a period of time, healthy skin cells are not able to grow back in time, leaving them damaged and burnt. Radiation burns feel similar to sunburns -which are caused by radiation from the sun- and can range from a slight tan to severe blistering. 

Who gets radiation burns?

The majority of cancer patients -around 60%, according to the National Cancer Institute– undergo radiation therapy as part of their cancer treatment. While not all patients experience radiation burns, most patients will have some sort of temporary skin changes associated with their treatment.

What are the signs of radiation burns?

Radiation burns appear similar to any other type of burn you may have had in your life. Skin changes can include:

  • Redness
  • Peeling
  • Swelling
  • Blistering
  • Moistness
  • Dryness
  • Flaking
  • Itchiness
Here’s how patients described their experience with radiation burns: 

Also, because where they were radiating on my neck was so close to the skin, I got terrible burns all down my neck. My friends were like, “Just use aloe vera, like real aloe vera from the leaf. That’s all you need.”

I was putting that on and it wasn’t getting better. Finally, I got the burn cream from my radiation oncology nurse, prescription, and within a few days, the burns were completely gone it seemed. So, I suffered for no reason.

Brittany W. (Metastatic Cervical Cancer, Squamous Cell, Stage 4B)

I had fatigue, but luckily no nausea. My only skin issue was just a slight redness on the actual area. It was like a mild sunburn. It wasn’t painful, and that’s pretty atypical.

Most people have quite a bit of discomfort and burns with that much radiation. I just didn’t. I did absolutely everything the doctors told me to though.

I put lotion on it several times a day and all that stuff. I don’t know if that’s what made a difference, but I didn’t have any major issues.

Erin C. (Metastatic Breast Cancer, Invasive Ductal Carcinoma, Stage 2B, Relapse, Stage 4, Triple Negative)
Allison

The one thing they don’t necessarily tell you or don’t explain as well as I would like, is the radiation also causes, depending on where it is, burning. This is essentially radiation to your skin.

Your personal parts could be red, irritated, could get blisters. There’s creams that might help. I can’t remember all the names of the creams my doctors gave me, but I know the burning, redness would eventually get better. But it was really painful to go to the bathroom anyway.

Allison R. (Colorectal Cancer, Stage 2C)

Jelena

I had diarrhea, and towards the end, there was some burning. They prescribed me a cream, and that helped. It didn’t get too red on the outside, but on the inside, it was pretty raw. With every step that I took, it felt like there were thorns up my butt. 

For a while after radiation, I would just lay in bed on my stomach with my butt in the air. 

Jelena T. (Rectal Cancer, Stage 3A)
Doreen

Mine was from underneath my underarm up to my chest bone all the way down underneath my boob and I didn’t realize that whole piece would get red.

I just didn’t think about it till Week 2, I started getting really red there. So it’s a constant burning that doesn’t go away. Now I have the incision underneath my arm which is now burning along with the rest of my boob and my nipple.

You put on lotions every night, every day. Then you have to wash all that off in the morning because you don’t want it on there when you go in. It’s just a game of constantly being sore and red like a full-on burn. 

It wasn’t fun. It was mental. And it’s physical because of the burning. Then there’s other piece of being exhausted. You hit a wall. More than chemo, I was more exhausted than I was at chemo.

Doreen D. (Breast Cancer, Invasive Ductal Carcinoma, Stage 2A,Triple Positive)

I definitely got extremely fatigued. I did get burns but I am a clean beauty enthusiast and started to lean into that more, as well, as I started to expand my knowledge about wellness. Clean beauty was a part of that. 

I did see burns during the latter part for a couple weeks and saw peeling, but I was really diligent about applying creams, serums, and oils.

Kara L. (Sarcoma, Synovial Sarcoma, Stage 1B, Soft Tissue Sarcoma)

What can I do to help radiation burns?

Because radiation is used to treat so many different types of cancer and areas of the body, there isn’t one solution for radiation burns. Depending on where the burns are on your body, there may be topical creams or dressings that your doctor can recommend. In general, these are some things you can do to help radiation burns:

  • Wear loose, soft clothing
  • Don’t rub at the irritated area
  • Keep the irritated area out of the sun
  • Apply a fragrance-free moisturizer or barrier cream like Aquaphor
    • Some patients find relief by using Aquaphor, Cetaphil, aloe vera gel, body butter and other topical products.
    • While it’s typically a good idea to keep the affected area moisturized, make sure you talk to your doctor before applying any topical products to your radiation burns. Sometimes, products can further irritate the skin or interfere with your radiation therapy. Never apply moisturizer to broken or weeping skin. 
    • Apply moisturizer right after you shower, while your skin is still damp and your pores are still open from the heat. This allows the moisturizer to be more effective.
    • Avoid products that can dry the skin, like perfumes and talcum powder.
  • Ask your doctor before using any bandages or wound dressings
    • While there are some bandages that may help with radiation burns, it’s important to avoid putting your own bandages on your burns. Ask your doctor for their recommendations regarding bandages or other wound coverings for your burns. 
  • Keep an eye out for any signs of infection. Signs of infection can feel similar to radiation burns (especially redness and swelling), so ask your doctor if you’re concerned about a particular area.

If you have severe redness, peeling, bleeding, or pain, talk to your doctor for specific recommendations for treating your radiation burns. 

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