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Medical Experts Oncologist

Dr. Ruben Mesa & Dr. Estelamari Rodriguez

Dr. Ruben Mesa &
Dr. Estelamari Rodriguez

Dr. Estelamari Rodriguez and Dr. Ruben Mesa are respected oncologists in their fields, but in this video, they give a much deeper and personal look into their WHY for treating cancer.

They also detail the importance of having representation and diversity both in doctors and in patients, especially when it comes to clinical trials and research to ensure access to quality care for all patients.

Thank you, Dr. Rodriguez and Dr. Mesa, for sharing your stories and the work you two do!

The interview has been edited for clarity.


Dr. Estelamari Rodriguez

Dr. Estelamari Rodriguez, MD, MPH

I think what drew me to medicine is that I have in my family, like many other, people have experienced cancer.

My grandmother had endometrial cancer, my mother had breast cancer, and their experience in Puerto Rico — not really able to connect with doctors where doctors tell you what to do and this is what’s going to happen. They got these treatments but they didn’t understand them. I wanted to change that.

I’m the first college grad in my family and I don’t have any doctors in my family. When I applied to medical school, I feel like it was like a miracle that it happened. I went to a very good program.

I went to Columbia and I went to Penn with scholarships. I found great mentors who were non-Hispanics but they saw something that they wanted to promote.

Dr. Estelamari Rodriguez white coat ceremony

My grandmother had endometrial cancer, my mother had breast cancer, and their experience in Puerto Rico — they got these treatments but they didn’t understand them. I wanted to change that.

I think that that’s one of the most rewarding parts of my day job — that I have patients that immediately when they see me, they can connect because we can speak the language. But not only is that a language issue, it’s really understanding the culture, the cultural nuances like understanding that their family is a big part of their health care decision group so you have to involve them and be respectful of their family.

Being able to connect with them on that level makes them feel that you took one of these barriers out. They don’t have to be overwhelmed about having that doctor connect with them.

young Dr. Estelamari Rodriguez school picture

I have patients that immediately when they see me, they can connect because we can speak the language… it’s really understanding the culture, the cultural nuances.

I think this space and this time where Latinos are coming together to support each other and recognize each other is letting other younger Latinos feel like this is a field where they can make a career, they can be happy, and they can make a difference.

If you have a dream, you should pursue it. Oncology can be a very intense field but it’s a very rewarding field. And we need you.

Dr. Ruben Mesa

Dr. Ruben Mesa, MD, FACP

I think I’m only the first or second Latino NCI Cancer Center Director in the United States. It’s a neat connection with that community.

I had the chance this year to testify before Congress regarding changes in FDA regulations and legislation regarding diversity in clinical trials.

Diversity in clinical trials is both about social justice and good science. We want to know whether it is safe and effective. Diversity is powerful.

Dr. Ruben Mesa with First Lady Jill Biden

I was able to share when the first lady came to visit our cancer center that diversity in clinical trials in our care, it’s both about social justice — because we want everyone in our society to be able to benefit from the advances that we have — but secondly, it’s also good science.

As we evaluated treatment, whatever that is — that could be yoga, that could be a drug, that could be stem cell transplant — we want to know whether it is safe and effective. We wouldn’t know.

Is it effective in Asia? In Cuba? In Africa? Might we have worse side effects? Might we have no side effects? Diversity is powerful.

young Dr. Ruben Mesa presenting about leukemia

The problem with cancer is that it’s a thief. It steals from us.

I myself lost my father to lung cancer. He died at 62 and he passed away now 16 years ago. I think about it really in terms of all those things that he missed because of the disease that he had.

He won’t see my sister getting married this upcoming February. He didn’t see my brother get married two years ago. He won’t meet their children. He’s not seen my children grow up into adults. It is a loss that can’t be replaced.

The power not only to be able to care but to really make a difference.

The problem with cancer is that it’s a thief. It steals from us length of life and quality of life either from us, the patients we love, family members…

The power not only to be able to care but to really make a difference. What does that mean? People live longer, they live better. Deeply rewarding and deeply grateful to have that opportunity.


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Cancers Prostate Prostatectomy

Mical’s Stage 2 Prostate Cancer Story

Mical’s Stage 2 Prostate Cancer Story

Mical R. feature profile

Mical was initially diagnosed with stage one prostate cancer at 37, which they learned after prostatectomy was an aggressive stage two.

He had no symptoms and he wouldn’t have found out at an early stage if not for a guardian angel of a doctor who decided to include the PSA test in his regular blood work.

Now, Mical uses his voice and his story to advocate for prostate cancer awareness, especially in the black community, conversations about family health history, and the importance of early screening.

  • Name: Mical R.
  • Diagnosis:
    • Prostate cancer
  • Staging: 2
  • Symptom:
    • No symptoms, caught at routine physical with PSA test
  • Treatment:
    • Radical prostatectomy (surgery)

Since being diagnosed with prostate cancer, my focus has shifted and I’ve become super passionate about spreading awareness and advocating for more awareness, certainly in the black community.

As a black man, I feel that if I had certain things on the awareness side, then my journey could have looked a little bit different.

Mical R. timeline


Mical R. dining out with family

Pre-diagnosis

Tell us about yourself

I have a twin brother. I’m a family man. I have two daughters. I’ve been with my wife for 18 years. We’ve been married 16 years.

I was a teacher for many years. I still work in higher education as an instructor. I’m passionate about reading and writing. That’s all I’ve ever taught, English language arts. Love writing.

Since being diagnosed with prostate cancer, my focus has shifted and I’ve become super passionate about spreading awareness and advocating for more awareness, certainly in the black community. As a black man, I feel that if I had certain things on the awareness side, then my journey could have looked a little bit different.

I’m doing my part so that men don’t have to go along not knowing the disparities and not knowing that black men are two times more likely to be diagnosed and 2.5 times more likely to die from the disease. It’s become my life’s work to do this.

I would have thought that if I had cancer that I would have been able to sense it.

Initial doctor’s appointment

[I’ve lived] in Houston my whole life aside from college. My whole family moved to Austin [when] I got a job promotion. That was 2017.

In 2018, we finally got settled. We [needed] to find a doctor because prior to moving, I went to the doctor every year. I was accustomed to going to my annual wellness visit at a minimum. My wife is from Austin. My in-laws recommended this primary care physician because they’ve been her patients for 15 to 20 years, so she came highly recommended.

My wife and I couldn’t get in. We kept calling to try to get an appointment. They were booked up. My mother-in-law said, “I’m going to text her and say, ‘Hey, I’m trying to get my son-in-law and my daughter.’” The doctor responded, “You tell the front desk that I said make it work.” That’s how I arrived at this doctor. This is key for me.

[On] my very first visit, she [needed] to know [my] family history. At that time, the only family history I knew was that my aunt, my mom’s only sister, had been diagnosed with breast cancer just weeks before. My paternal grandmother had recently died of stage four lung cancer — breast cancer that metastasized to her lungs.

This was a regular checkup. She did the blood work. But unbeknownst to me, she also tested my PSA levels. When the blood work came back, everything was great but she noted, “I’m concerned about your PSA levels.”

That was the first time I ever heard the word. I actually had to Google. What is that? I was just going for my annual physical, to establish this relationship. I had no symptoms at all, not one. I was very healthy [and] young.

I Googled it and I never got alarmed because I didn’t have symptoms. I always felt like whatever the concern is, it’ll be ruled out because I feel great. I would have thought that if I had cancer that I would have been able to sense it.

She told me, “I want to put you on an antibiotic for a month,” because she initially thought it was prostatitis, which is a prostate infection. I did the antibiotics for 30 days. She retested my PSA. She said, “I’m not satisfied. It came down a little but not enough. I want to put you on an antibiotic for another 30 days.” I did the 30-day round again. After that 30 days, when she tested my PSA, the levels had gone up higher than they were initially.

I cannot remember what the number was. It wasn’t crazily high but it was higher than it should have been. It was cause for alarm. In a period of two months, from whatever it was initially, it went up. It didn’t go down so that’s alarming.

At that point, she said, “I think we should send you to a urologist so that they can have a further look.” I did everything she told me to do. I went to the urologist that she referred me to.

They did a biopsy. A week later, I found out. At that time, they told me it was stage one prostate cancer. But we ended up finding out after the surgery that it was an aggressive stage two.

I always tell people that I used to think that I moved to Austin for a promotion, but I really think I moved to Austin to save my life.

What makes that doctor so good?

What makes her so great for me [is] that she comes highly recommended and they love her so that helps me feel more comfortable. [The] first time that I ever met her, I felt like [I’d] known this lady forever.

She’s intentional about being present, really listening and engaging, talking to me about other things, just getting to know me, and not making me feel like I’m one more [patient]. We know doctors are busy but I’ve been to so many doctors where I feel like [there’s] no time to connect so that’s what’s made her so special for me.

I call her my guardian angel. Essentially, she’s the person that diagnosed. She’s the reason that we’re here because I can almost bet that if I hadn’t met this doctor, there was no reason for me to get this PSA test if I wasn’t of age. I had no symptoms. It’s nothing but God.

If I didn’t meet this doctor, I can guess how things would have turned out.

I always tell people that I used to think that I moved to Austin for a promotion, but I really think I moved to Austin to save my life.

The night I found out my diagnosis, I called her and I said, “Hey, I just wanted to update you. It’s cancer.” She said, “Let’s pray,” and we prayed right then. She’s not a black doctor. She’s a white woman. Some people might assume maybe there was a cultural… no, she’s a white woman.

I call her mom, honestly. She 100% gives me that energy. I asked her, “What made you take my PSA levels? What made you do that?” She said, “I’ve just been noticing in the five years prior that younger and younger men are being diagnosed.” She’s probably just been reading literature. She’s up on the latest news and that’s what made her do it. And I’m grateful for it.

What did you know about prostate cancer?

I never thought anything. I’m sure I saw a commercial or something but a personal connection, never. I don’t know that I even knew anyone who had prostate cancer, besides maybe someone on TV.

It couldn’t hurt if you did the test and [if] it’s fine, then it’s fine.

Mical R. Kitchen King apron
Importance of knowing your family’s medical history

She said that because she noticed that younger and younger men [of color] were being diagnosed that it couldn’t hurt, which is true. It couldn’t hurt if you did the test and [if] it’s fine, then it’s fine. I also assumed that telling her about breast cancer on my mom’s side and my dad’s side may have just helped to make that decision.

This just goes into — and I can only speak for the black culture — we don’t discuss family history. We really don’t discuss things at all, but we certainly don’t discuss family history.

After I had surgery, I was back at work [and] I was on the phone with my dad’s only living brother. [I] found out that [he] had prostate cancer five years before me. My parents actually knew that he had it and they knew I had it. But even at the point [when] they found out I had it, they still didn’t tell me.

Men just don’t like to talk about this stuff, period. Men are not crazy about going to the doctor. Even if a man knows something’s going on, some men won’t go.

That also goes into why I choose to be such a big mouth about it because we’re just not doing ourselves any favor. This is not helping to move the needle forward by us keeping it to ourselves. We have to stop being such a taboo thing.

Men just don’t like to talk about this stuff, period. I’m just speaking for men. Men are not crazy about going to the doctor and this is a disease that affects men. I think specifically for prostate cancer that would be one of the leading reasons why most men feel like it makes them less of a man or they just don’t feel comfortable sharing it.

I’ve met so many men who I know have prostate cancer because I had it. But if I didn’t have it, they probably would have never told me that. I try to speak out for all of them because, at the end of the day, nothing is more authentic than an actual patient experience.

Doctors can get on here and they can say all of the amazing words. No one told me about this [and] I was going to the doctor. That’s a separate issue for some men because some men refuse. Even if a man knows something’s going on, some men won’t go to the doctor. But I was going to the doctor. And so for me, if I was aware of that health history, then I could have been advocating for it well before when this doctor just chose to do it.

If I didn’t meet this doctor, I can guess how things would have turned out. I would have still been going to the doctor but no one would have [chosen] to check it so it would have looked dormant until stage three or four. I’m so grateful for the way it happened and I have to do the work and be boots-on-the-ground grassroots because my life is essentially spared.

Getting a biopsy

Before this, the only surgery I’ve ever had was when I was in college to have a lymph node removed from [the] left side of my chest. When they said I needed to have a biopsy, I really didn’t understand what that was until I was there and it was happening.

They biopsy portions of my prostate. I can’t remember how many pieces they took, maybe four or five. Then based on that, they were able to see that cancer was present. At that time, it was stage one. But we later realized once they dissected my prostate after surgery that it was an aggressive stage two.

In black men, it can lie dormant and it can also be aggressive, which was exactly what happened to me.

Diagnosis

Getting the official diagnosis

It was seven days from the time I had the biopsy. The thing is, I don’t know if it was God keeping me sane, but I genuinely went through all of that — from the time that I met that first primary care physician all the way up to the results — whole time in between, I never ever got rattled. I never wondered, “Could it be?”

I consistently felt great. I felt good. I feel like I’m pretty in tune with my body. If there was something going on, I would have had a symptom, right? But it wasn’t until after learning more about this disease that it presents itself in different ways.

In black men, it can lie dormant and it can also be aggressive, which was exactly what happened to me. I had no symptoms but my cancer was an aggressive form, which is something that’s just wow.

I needed to go back to the doctor to get my results. Prior to that day, I had already gone to this urologist twice. The first visit was the consultation to talk to me about everything and then the second visit was the actual biopsy. Both times, I pay the co-pay.

On the third visit, I know that I’m simply going to pick up results. That morning at work, I was just talking to my colleagues. “I don’t think I should have to pay another co-pay because I’m really I’m not getting a service rendered. I’m just picking up results for a service.” They’re like, “No, I don’t think you should.” I’m like, “Yeah, I don’t think so either. I just want to call the doctor’s office just to make sure.”

I call the doctor’s office and the lady who I spoke with, I had a sense that she was a black woman. She reminded me of an aunt. I explained to her, “I’m just getting results today.” I don’t think I have cancer so this is also leading the way I’m dealing with it. “I just need to pick up my results today and I’m just trying to make sure if I have a co-pay.” She’s like, “No, you shouldn’t. You know what? This is what I’ll do. I’ll send an interoffice request for your results and then they’ll send them down to me. So call me back in an hour because I’ll have them by then.”

In an hour, to the minute, I called and she probably was so busy between the first time I talked to her and now that she hadn’t even checked her emails. She’s like, “Let me look. They haven’t sent it yet. That’s weird. I don’t know why they haven’t sent it. Listen, I’m going to go up there and get it and I’m going to call you back.”

She calls back and says, “Hey, I was just thinking you should probably just come in.” As soon as she said that, that’s when I got scared because I felt, even though I hadn’t talked to her that many times, we had just built this rapport where she agreed that she’s going to give me the results and now she’s calling me back and telling me to just come in. The inflection in her voice, the energy, all of it, just made me say, “Okay.” I didn’t ask her why. I didn’t say, “What made you change your tone?” I just said okay and I got scared then.

I came home that evening and I told my wife. We were actually driving to the urologist for that appointment. “Babe, I called earlier. I talked to a lady.” I said I was trying to make sure we shouldn’t have to pay another co-pay. She’s like, “Well, no, we shouldn’t.” I said, “Yeah. The lady was supposed to just be getting me my results. But then she just told me I should just come in. I don’t know why. That just felt weird to me.” That’s what I told my wife and that was the first time I got scared.

She calls back and says, “Hey, I was just thinking you should probably just come in.” As soon as she said that, that’s when I got scared.

Mical R. with wife

Before that, I was just moving through whatever I was being told to do because, in my mind, we’re going to rule it out. All of this is going to rule it out. We get to the urologist’s office. When I walked back up [to the front desk], as I was approaching the counter, the lady says, “Okay, your co-pay for today is…” I don’t remember what the amount was. My wife [went] right up to the counter and she’s like, “I don’t understand why we have to pay a co-pay. We’re just getting results, that’s all we’re doing. Maybe we have to see the urologist but it’s not really a visit. We’re just getting results. The service was rendered.” The lady goes, “Let me go check.”

The lady comes back to the desk with a piece of paper and slides [it] under the little window. I looked at the sheet. It was graphs and charts. I don’t know what it was. She said, “Oh, that’s your results.” At that time, I’m certainly thinking now she’s sliding me my results that it’s got to be negative.

My wife demanded that the urologist at least come and hand us the sheet of paper himself. The lady at the front desk walked away, came back, and she said, “Okay, the urologist said he’ll see you in a moment.”

We sit in the lobby for about 15 to 20 minutes. A nurse came and got us, took us to a waiting room, and we waited there for about 10 more minutes. Then he walked in. It was me, my wife, and my daughters were with us too. We were all together so we were all in the room. My daughters were younger. They were playing at our feet. They were in their own little world.

He came in, he’s talking, and I don’t know if it was so traumatic that my mind just deleted it because I completely never heard him say it. One reason I knew he must have said something bad was because my wife was crying.

I looked at her. “What did I miss? Can you repeat what you just said?” He said, “Yes, you have stage one prostate cancer.” My immediate reaction to him was, “Wow. You knew that I had prostate cancer and you were going to let me take that sheet of paper home and figure that out on my own?”

I knew right then that on this journey, that wouldn’t be my urologist. He was very embarrassed. He was trying to explain it away. “I see so many patients every day and right before I came in here with you, I was seeing another patient and he was crying on the floor.” It’s terrible.

It’s amazing to this day, it just is… wow. I didn’t pay that co-pay.

‘Wow. You knew that I had prostate cancer and you were going to let me take that sheet of paper home and figure that out on my own?’

Looking for a new doctor

I came home that night [and] called my primary care because she’s the one that referred me to him. I said, “Hey, this is not going to work. I have cancer.” She referred me to a new urologist.

I think I’m [savvier] in that space because I’ve been going to the doctor so I immediately know I’m not going to be able to work with this urologist. I’m also going to make sure I file a complaint with the Board of Urology. Certainly people in my community, they’re not going to know those types of things. Some people in my community would actually still stay with that doctor just because they feel like I don’t have any choice.

I left that urologist. He’s in the rearview mirror. Met with the new urologist. My wife came with me. He was in a little rolling chair. He rolled it right up in my face and he’s talking to me, looking at me right in the eye. He’s just talking to me. The energy was just so tense. He needed to leave the room to get some paperwork and as soon as he walked out, my wife and I looked at each other. “That’s him.”

Treatment

Radical prostatectomy

I was diagnosed in November and I had surgery in June. When I was initially diagnosed, I was told it was stage one by that first urologist. Then after surgery, I was told that it was stage two so it could be one of two things. It could be that I was misdiagnosed at first or it could be that it just progressed during that time. What I’ve learned about the disease since then [is that] it’s plausible that it could have actually just progressed during that six-month period.

My team of urologists had actually advised me [that] because [of] my health and all these different factors, they wanted me to do it within a year from diagnosis. I chose to do it in six months. I probably could have done it sooner but that was during the summer, I was off from work, and that was the reason I chose to do June.

I could have done it later. I’m glad I did it but my urologist told me, “You’ll be fine. We don’t suspect that it’ll escape the prostate in this time and metastasize.” That’s why it wasn’t a real urgency to do it December or January because I was told that as long as I do it within a year, I’m good.

Deciding when to do the surgery

I’ve heard of many men who also found out they had it and they just waited even longer. They just didn’t want to confront it.

Do I want to lose my prostate? No. But I know that I have this disease and I want to get it out as soon as possible. I could have done it sooner. I just chose to wait until June specifically because I know I was going to be off. I wouldn’t have to use vacation time.

If I worked all year and didn’t have that as an option, I would have gotten it done soon.

Make sure you have people there to support you because that does help.

Mical R. with daughters family quote
Advice for going through surgery

I don’t know if sometimes when things are just so traumatic or stressful, my mind doesn’t allow me to be as rattled as I probably could be. It’s not like I was going in there happy. I had my family with me. I felt comfortable. My parents were there. My brothers came. Everybody who I love was there so that helped a lot.

Make sure you have people, who you care about, there to support you because that does help. When I opened my eyes and saw those people around me, that did help because I knew I had a long journey ahead. They told me that I woke up cracking jokes.

The day of surgery wasn’t really stressful. It felt like everything moved fast. I had to go the day before to do registration. I remember my wife and my youngest daughter were out of town on a Girl Scout trip and they were coming back that night. My mother-in-law actually took me.

I remember getting there that morning. My daughters were with me and we were laughing. One of my best friends came into town [with] his wife from Houston and they were cracking jokes. My dad came.

Right up until the time when they told me we’re going back to surgery, I remember just laughing with my family. I know I was nervous but I just have to stay in that space.

Even before surgery, I just knew it was going to be a success because I knew, without a shadow of a doubt, I was in good hands.

Preparing for surgery

They really did a fantastic job preparing me. Up until the day of surgery, I had learned so much through them.

[During] the period between diagnosis and surgery, I connected with Us TOO, which is an organization for prostate cancer survivors, and they have a chapter in Austin. I learned a lot through them as well.

I felt so comfortable and I think that goes into the comfort level with your doctor or your HCP because I just had no doubt. Even before surgery, I just knew it was going to be a success because I knew, without a shadow of a doubt, I was in good hands.

I feel that changes the trajectory of the healthcare experience when the patient has that real, authentic connection with any doctor that they have to deal with.

Knowing you’re in good hands

I’m an intuitive person. I got my college degree in communications. I’m all about how we engage and how we deal with one another.

From the minute I met that second urologist, it was so evident that he was on my side. It almost felt like I was his only patient if I could just explain it that way, honestly. I felt like he didn’t have any other patients to see after me. I didn’t feel like he saw anyone before me. I didn’t get that feeling of next, next, next. Never. He seemed like his calendar was just open, like he didn’t have [anything] pressing. He was just really locked in and listening to me.

All of that really helped. I feel that changes the trajectory of the healthcare experience when the patient has that real, authentic connection with any doctor that they have to deal with.

Certainly in my culture, there’s nervousness there. It just comes from so many years of mistrust so more doctors need to be intentional about how they engage all patients but certainly patients who look like me because we know we need to get over that hill of mistrust. I just think that Dr. Giesler — who is my urologist, who I love and I talk to him to this day — did that so well.

I know a patient who actually feels like they never had prostate cancer. They feel they were being used as a project. I’m sure they did [have prostate cancer], but they feel this way and it’s primarily because they don’t trust the doctor. Stop the mistrust.

We know that that’s a real thing, like Tuskegee. In a lot of men’s minds, they still feel that that holds true today. I’m not here to say whether it does or doesn’t; I don’t believe it does.

My point with this patient is I’m pretty sure that the reason he feels this way is because he has a severe mistrust of his urologist and the team. I often wonder if he did have a trusting relationship with them, would that change how he felt? Would he still feel that he didn’t have prostate cancer? I’ve never heard someone say that and because I know that he has that mistrust, I’m pretty sure that’s what makes him feel that way.

If you do have cancer or anything else, it’s always better to know earlier than not.

Recovering from surgery

After surgery, I had to wear the catheter for seven days. For me, the catheter was the worst part. It wasn’t fun. Everything else, I could deal with. The catheter was terrible.

On the seventh day, I had to get the catheter taken out. I’m pretty sure it has a lot to do with the fact that I’m healthy and I’m younger. But when the catheter was taken out, I was at my daughter’s softball event that same day. Now, that’s not to say that I was just ready to go sail the seven seas but I was able to attend that. I had a little donut pillow that my wife bought me and I was sitting on that. I was able to walk from the car.

The catheter was the worst. It’s just so bad. They gave me two different bags. One bag I would wear when I’m at home, overnight when I’m asleep. Then another bag, I could be more mobile. It was attached to my leg.

I don’t think there’s anything that helped. I was just ready to get the thing off. All of the rest of it, it’s fine. But the catheter was not my favorite part.

Mical R. with wife flowers

I was back at work I would say six weeks. Maybe seven.

Every patient story is different. I’ve talked to other black men, patients who were maybe three or four years older than me and maybe weigh a little bit more, [and] their outcomes were a little bit different. I go days without remembering that I had prostate cancer. Everything functions on me the way it did. I don’t have issues with incontinence. I’ve never had to wear a diaper. None of those things.

I’m telling you all the positives about my specific scenario just to motivate you to go get checked because if you do have cancer or anything else, it’s always better to know earlier than not. We just have to get away from assuming that we can just ignore it and that it’s just going to resolve itself because that’s not the case.

You can still have an amazing life (wink, wink) after a diagnosis or after surgery. I’ve been disease-free since June of 2019 and I’ve never felt better.

It’s key that we talk about it in families. As a prostate cancer patient or survivor, I make sure everyone in my family knows that I have prostate cancer.

Prostate cancer awareness

If family health history have been discussed, then I would have known about prostate cancer. As a man, because I was going to the doctor, I could have just added that into the conversation.

My doctor visits, when health history is brought up, just like I was aware of my aunt having breast cancer and my grandmother having breast cancer stage four and I share that with the doctor, I could’ve also shared the prostate cancer.

It’s key that we talk about it in families. As a prostate cancer patient or survivor, I make sure everyone in my family knows that I have prostate cancer.

As a black man, as a prostate cancer survivor, I’m just here to tell men everywhere — but certainly, men who look like me — that doctors are here to help us.

I have a twin brother and an older brother who have still not gone to the doctor. I speak out for them. My brothers know I had prostate cancer and they came to my surgery. They know now that our uncle had it. My twin knows that because we’re genetically the same, that makes him at an even higher risk but yet they still haven’t gone.

I had people ask me before, “Why do you think that? Why do you think it is that men don’t wanna go to the doctor?”

When I think about it, the only word I can think of is fear. It could be a fear of the unknown or just don’t want to be poked and prodded. I don’t want people asking me personal questions. I don’t want to have anyone in my intimate space like that. It’s all these factors. Meanwhile, there are questions lingering with your health that go undealt with because of the fact that this fear continues to keep you frozen.

As a black man, as a prostate cancer survivor, I’m just here to tell men everywhere — but certainly, men who look like me — that doctors are here to help us. They are. If you go to a doctor and you don’t like the way they make you feel, I want you to know that you have every right to find another doctor. You shouldn’t have to go to a doctor that doesn’t make you feel comfortable.

It’s okay to speak up when you’re in doctor’s visits if you feel that the doctor is not meeting your needs and meeting you where you are. You need to know that you can certainly speak up and make the doctor aware of that.

If the doctor is still not being intentional about meeting your needs, you have every right to seek out another doctor. That’s something I really want to make sure that I hammer home because a lot of people don’t realize that as the patient, we actually have the power. We have more power than we think we do.

Let’s not be afraid to advocate for ourselves in the healthcare space and to speak up and ask questions so that we can change the narrative.

I used to go to doctor’s visits with my grandmother and the doctor would say something and I’d ask my grandmother, “Are you okay with it?” “Yeah, it’s fine, it’s fine. The doctor said it then that’s what it is.” I’m like, “But are you okay with it?” There’s just this thinking that the doctor knows it all. I don’t know anything.

I’m here to tell you no. You’re there to educate the doctor on who you are. I always say you have to teach people how to treat you and the same applies when you’re with doctors. Let’s not be afraid to advocate for ourselves in the healthcare space, speak up, and ask questions so that we can change the narrative.

If you go to a doctor and you don’t like the way they make you feel, you have every right to find another doctor. You shouldn’t have to go to a doctor that doesn’t make you feel comfortable.

Mical R. with wife at SXSW 2022
How to address the fear

Two things. First, more unconscious bias training so that doctors and healthcare providers have the tools and know how to engage the black patient.

On the patient side, this is something that needs to be talked about in church meetings, fraternity meetings, in places where black people feel most comfortable because that’s going to essentially be what’s going to get them there. They also need to be hearing it from actual patients, actual black men who who who went through this, who are survivors and can speak to what it might look like in terms of the journey and speaks to the point of early detection.

Once we can get them there, we need to be assured that doctors are going to know how to engage them. It’s not just to start. It’s to stay.

You have to be very calculated. [If they feel like it’s falling on deaf ears again], it might even be worse. “Oh, you got me here and now, see? This is why I don’t even go to the doctor.” Then you will never hardly be able to get them to go after that. This is a combined effort for sure.

This needs to be talked about in places where black people feel most comfortable because that’s going to essentially be what’s going to get them there.

Engaging black patients in a better way

Understanding how we communicate and that connection is critical. Perhaps walking into the room with a black patient and choosing to just talk about regular things. I am not cancer.

I’m only speaking for black people because I’m a black person. We want that because that’s going to be the best way to help us feel comfortable. There is this cloud looming over healthcare when it comes to how black people perceive any capacity of healthcare. The HCPs and people on that side must be vigilant and diligent about making sure to flip that in their daily interactions when they’re meeting with patients.

That’s not just going to happen overnight that’s why training is so important because some doctors need to be trained [on] how to do this. When it comes to tactical recommendations, how would that look? Maybe pamphlets that are provided to HCPs so that they understand, little tips and tricks, and ways to engage the black community.

Getting them there is half the battle but keeping them there is probably the bigger part. “I like those shoes!” “Wow! I like your hair.” A rule of thumb is to treat patients like they’re your parents or your family members even if clearly we’re not of the same culture. Most black people in that healthcare space, we’re tense. We’re uptight. We don’t know what to expect.

My situation is a little bit different because I’ve been going to doctors longer but I’m always wondering. Is it going to be a good experience? Is the doctor going to treat me like a person or like a patient? Yes, we’re going to be a patient but we want to be treated like people. I think that goes for all of us.

When the doctor feels that this needs to be stated, [if] there’s still a little bit of a disconnect, it’s even okay to say, “Listen I know you may have had bad experiences before but not here.” Declaring that [and] then following through in your actions. That can be enough, honestly.

A lot of doctors might take it personally because they feel, “That’s not me.” Most people realize it’s probably not you. It’s the system but this is how you could separate yourself from the system and say, “You’re here with me now. I’m going to take care of you. I don’t know what happened to you previously but you won’t have that here.”

While Tuskegee did happen, we must do our part in ensuring that it doesn’t happen again and the best way to do that is to show up.

Mical R. squad shirts
Information on and access to clinical trials

I knew what clinical trials were but I didn’t know how [they] all worked. I wasn’t up to date on all the particulars. I knew in general but there needs to be so much more work done in terms of educating the black community on clinical trials and providing access because they don’t even know.

There are so many clinical trials. You can go to clinicaltrials.gov and they’ll show you. But so many people don’t know that. I only learned that rather recently. You can just log on to clinicaltrials.gov, look through the list, and see what’s upcoming, what’s done, [and] what’s still open presently.

Providing access [and] making people aware that that website exists because, like many other things, it makes the black community feel like we’re being purposely left out of these clinical trials.

Efficacy comes into play because we haven’t been included in these. We might be taking the drug and then it doesn’t react the right way because we don’t have any data to show that that would happen.

I want black men and men in general to know that they can be an advocate for themselves. You have a voice because at the end of the day, you are the patient.

Clinical trial, that’s a big buzzword right now. There is a push to try because so much more awareness is being shed on prostate cancer that we may be moving the needle forward in that area.

I would say certainly at the HCP level, in the doctor’s offices, and [in] advertisements… “Did you know that clinical trials are available?” Providing the website so that people can look through that on their own.

I just think so many people don’t know that clinical trials are available and that black people can participate in them. It’s important that we have a seat at that table so that we are able to do our part in the research phase of these different medicines to show how they can help our community.

As a prostate cancer patient, as a black person, I would just tell black people in the community that, yes, Tuskegee definitely did happen. We honor that. But it’s important to know what clinical trials are, to understand how beneficial they are, and to know that that’s not a likelihood now. We’ve done so much better in terms of education and awareness. While Tuskegee did happen, we must do our part in ensuring that it doesn’t happen again and the best way to do that is to show up.

Early detection is the way you can ensure that you have the best quality of life. If my cancer wasn’t found as early as it was, my reality wouldn’t be what it is now.

Being an educator in a different space

When I was diagnosed in 2018, I could have never imagined that I’d be doing this work professionally. I’m meeting with doctors, talking to doctors, and working to spread awareness on a national level and that’s just a feeling that I can’t explain.

I’m able to transfer my skills into this space, having been a teacher for so many years and still actually teaching in higher ed. It feels good to merge my passions with my skills, to do this work, and to be alive and well enough to do it.

At the end of the day, the best thing you can do for yourself is to go to the doctor.

Words of advice

I wasn’t able to go in and advocate for prostate cancer necessarily. I did go to the doctor annually. Had I known about prostate cancer, I am sure that I would have.

At the end of the day, the best thing you can do for yourself is to go to the doctor. You have reasons to be around, whatever they are, whether it’s family or kids, or job. You have a reason to live and you have a reason to live your best life.

Early detection is the way you can ensure that you have the best quality of life. I know that if my cancer wasn’t found as early as it was, my reality wouldn’t be what it is now. I go many days without even realizing that I have prostate cancer and I think that’s just a testament to early detection, certainly because the cancer was able to be contained.

Early detection starts with going to the doctor. You’ve got to go to the doctor. You’ve got to move past those feelings of not being comfortable at doctor’s offices.

No one knows you better than you do so your best bet is to go to the doctor and speak up. If you feel something’s going on, then make sure you tell the doctor about it. But even if you don’t, I would advise all men. Nothing wrong with going in and requesting a PSA test.

Self-advocacy

For me, [the doctor] is going to have to be somebody that gets to know me in an intimate way. I want to feel comfortable with him. That goes along with why I speak out too. I want black men, and men in general, to know that they can be an advocate for themselves, that it’s okay. You can say, “No, I don’t agree with this.” You have a voice because, at the end of the day, you are the patient. That’s pretty much the story with the way I was diagnosed.

Black men are twice as likely to be diagnosed and 2.5 times likely to die. The disease presents itself in more aggressive ways and it remains silent in its earlier stages.

Mical R. Christmas with family
Importance of early screening

I was 37 [when I got diagnosed]. The truth is most doctors aren’t going to be screening for this until you’re 40. I tell men that are about my age that I run into. You can tell the doctor that you would like to have this blood test.

In all cases, if there’s a family history, you should certainly be getting screened. That’s why it’s so important to talk about things because if you don’t, then you’re not going to even know the history to be able to advocate.

Black men are twice as likely to be diagnosed and 2.5 times likely to die from the disease so just being a black man makes it much more important that you get this checked. In black men, the disease presents itself in more aggressive ways and it remains silent in its earlier stages.

For all those reasons, you need to go to the doctor. If you’re not 40, I would say still go to the doctor.

Another real barrier is this macho thing about the whole DRE, the digital rectal exam. First of all, if you have to get that done, you just need to do it. It’s for your life. With advances in technology, that’s not the first option now. The first option is the blood test and obviously, if the blood test reveals something, then that will be probably the next step. I try to make sure men know that because it seems minor, it seems trivial, but I promise you that a lot of men won’t go to the doctor for that reason. I’ve heard that so many times.

God wants you to depend on Him but he wants you to depend on people he’s placed here to do the job as well. The best thing I can tell you is quite simple. Go to the doctor.

While I’m talking about prostate cancer specifically, the overarching message is you need to be going to the doctor because you can’t get screened unless you go to the doctor. You need to be going to the doctor to get a baseline in terms of your health in general.

As a man, you definitely should be getting your PSA checked. If the doctor doesn’t do it, you should be requesting it. Even if you’re not 40. You could be 30. I would still say get your PSA checked because at least you have a baseline. You can do surveillance. It helps you to be more mindful and to be more vigilant about your health.

I still had a part to play in it because I went to the doctor. It was a blessing that it was this particular doctor but still, the fact that I went, I was able to be discovered.

You’ve got to get there. You have to get to the doctor.

Always look for support. If you don’t have any family support in terms of prostate cancer, there [are] support groups [and] mentors that can be provided to you. In terms of health care in general, you can jump on Google, you can research support groups that might be specific to something you’re dealing with. My reality is prostate cancer but I want to really reiterate that health care is of the utmost importance.

If you’re going to get your general health up, make sure that you’re aware of the latest as it relates to your general health. If that includes realizing that they need to do surveillance with regard to prostate cancer or breast cancer, do what the doctors tell you to do. Please don’t ignore what they’re telling you.

If you’ve got the diagnosis, don’t ignore it. We’ve got to get away from that.

I grew up in a Christian household. I love God. I know God. But I also know that God put doctors here to help us. God wants you to depend on Him but he wants you to depend on people he’s placed here to do the job as well. The best thing I can tell you is quite simple. Go to the doctor.

No one knows you better than you do so your best bet is to go into the doctor and speak up. If you feel something’s going on, then make sure you tell the doctor about it.


Mical R. feature profile
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Prostate Cancer Stories


Clarence S., Early Stage



Cancer Details: PSA levels fluctuated but were never extremely elevated, cancer contained to prostate
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment:Radical prostatectomy (surgery)

Steve R., Stage 2



Cancer Details: Started at stage 2 and gradually progressed to stage 3, and then to stage 4 with metastasis to lymph nodes
1st Symptoms: Rising PSA score
Treatment: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177

Al Roker, Gleason 7+, Aggressive



Cancer Details: Aggressive but caught early
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment: Radical prostatectomy (surgery)
Bruce

Bruce M., Gleason 8/9, Stage 4A



Cancer Details: Staged Gleason 6/7 pre-surgery, post-surgery changed to 8/9, PSA level at 27
1st Symptoms: Urination changes, brother's prostate cancer diagnosis
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)
Dennis Golden

Dennis G., Gleason 9 (Contained)



Cancer Details: Staged Gleason score 9
1st Symptoms: Urinating more frequently middle of night, slower urine flow
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)

Theo W., Prostate Cancer, low-end high-risk



Cancer details:
Low-end high-risk prostate cancer, early kidney cancer
1st Symptoms: PSA level of 72
Treatment: Surgery, radiation

Jeffrey P., Gleason Score 7



Cancer Details: Diagnosed at 59, biopsy had not detected it
1st Symptoms:None, routine PSA test, then IsoPSA test
Treatment:Laparoscopic prostatectomy
Mical R. feature profile

Mical R., Stage 2



Symptoms: No symptoms, caught at routine physical with PSA test
Treatments: Radical prostatectomy (surgery)
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Categories
ABVD Adcetris (brentuximab) Cancers Chemotherapy Classical Hodgkin Lymphoma ICE Immunotherapy Relapsed and Refractory Stem cell transplant

Emmanuel’s Relapsed Hodgkin’s Lymphoma Story

Emmanuel’s Relapsed Hodgkin’s Lymphoma Story

Emmanuel S. feature profile

Emmanuel was diagnosed with Hodgkin’s Lymphoma at 24. After having his symptoms initially dismissed, he was finally able to find a doctor who told him to do a biopsy.

He shares his experience with relapse, doing chemotherapy twice, undergoing a stem cell transplant, and how his “go go go” attitude and positive mindset helped him.

  • Name: Emmanuel S.
  • Initial Diagnosis:
    • Hodgkin’s Lymphoma
  • Initial Symptom:
    • Enlarged lymph nodes at the base of the neck
    • Night sweats
    • Diarrhea
  • Initial Treatment:
    • ABVD chemotherapy

  • Relapse:
    • Night sweats
    • Scratchy and itchy
    • Lump at the base of the neck
  • Treatment:
    • Chemotherapy: ICE
    • Autologous stem cell transplant
    • Immunotherapy: Brentuximab

[It’s] important to have something to look forward to. I had that and that saved me. It gave me all the power that I needed for the day-to-day battles to just get through it.

Emmanuel S. and wife Jessica in the water
Emmanuel S. timeline


The first thing that I thought was “Oh, this is cancer.” But I never said it out loud. I knew that could scare people.

Emmanuel S. sailing

Pre-diagnosis

Initial symptoms

The first time I was diagnosed, I was 24.

I was in the mall and I just put my hand [on the base of my neck]. “What are these three little balls? What are they doing here?” The first thing that I thought was “Oh, this is cancer.” But I never said it out loud. I knew that could scare people. “I don’t know what it is. It feels weird.” But in my mind, I was [thinking], “Is this cancer?” I never saw anything about it, never researched anything about these lumps.

As time went by, I went to see a general doctor and they just blew it off. “Sometimes we get these lymph nodes that get swollen up.” A few doctors later and the doctor said, “Nodules at the base of the neck [are] no good. [Under the jaw] is okay, but the base of the neck is where you should be worried.”

Sometimes you see a few doctors and you think everything’s okay, but there’s always that one person [that] says check it out.

Emmanuel S. headphones
Deciding to get a second opinion

I came out of a really bad sore throat and cold. I also was having a lot of night sweats [and] a lot of diarrhea. All of that kind of put me in doubt. Sometimes you see a few doctors and you think everything’s okay, but there’s always that one person [that] says check it out.

Getting a biopsy done

The doctor told me to do [a] biopsy. I [initially thought] he just wants to [refer] me to his friends. I ended up doing the biopsy. It was a little nerve-wracking.

[It was] the first surgery that I had to do. I had to go under the knife. I had to go to sleep. It was funny because when I woke up, nobody told me anything.

My grandmother took me out to lunch and then she started crying. “What’s happening?” She’s like, “Oh, we don’t want to tell you.” [I thought it was] messed up. How can you not tell me?

They told me this at lunch with my grandmother and it was a bit of a shock for me. I [had] mixed feelings. She held it from me for [about] an hour. They said I wouldn’t have the results in a few days. That was a twist in the story.

I decided not to research too much. You can go online [and] find a lot of things.

Diagnosis

Finding out about cancer

I didn’t hear the word cancer at all. When you talk about Hodgkin’s lymphoma, people don’t say the word cancer. People stay away from it. I didn’t even know it was cancer until I was maybe a week into it.

Emmanuel S. stress test

When I actually started hearing the word cancer, I started getting more worried. Now I understand. This is cancer. From there, I just had to buckle up.

I also decided not to research too much. I don’t want to brainwash myself before I got started. I think that’s important also for anyone just to not get overwhelmed. You can go online [and] find a lot of things.

In the beginning, I [just wanted to] take it easy. There’s nothing you can do. Just swallow everything. Try to understand what’s going on.

But when I actually started hearing the word cancer, I started getting more worried. Now I understand. This is cancer. From there, I just had to buckle up.

Having to be emotionally strong

I’m the oldest of all of my brothers and everybody. I had to play it strong. I never showed my weakness to my mother [or] to anybody. I always had to show off like I was strong and it worked. I’ve been able to fool everybody since then… In a good way.

It’s hard to explain. As the oldest, you have to be strong in front of everybody.

As a guy, I guess I couldn’t show too much emotion. But that’s completely wrong, right? I should be able to cry and be sad.

The moment you get a diagnosis like [cancer], people don’t know what to do. They’re afraid to say something to offend you.

Emmanuel S. on a boat in the rain

I took all this energy and [channeled] it in a way that I could just focus on what I had to do. At that moment, I had a big dream, which is to sail around the world. I have to finish all of this to sail around the world. That was the only objective. Nothing’s in my way.

In general, as a human, I feel like that was the first time I felt alone because it’s honestly like that. When you go into the hospital and you’re laying down to do a biopsy, you have nothing but the [hospital] robe. You don’t have a phone, you don’t have your wallet, you don’t have anything. You’re by yourself. They put you in that room and you’re just waiting there just to get surgery. This is it. I’m by myself.

This is like life. Come in by yourself, you go by yourself. I think that was the first time I felt alone and felt like this is my own problem. I hope people around me can make it easier for me.

How to talk to someone with cancer

It’s hard because the moment you get a diagnosis like that, people don’t know what to do. They’re afraid to say something to offend you. I’m an open book most of the time.

It’s hard for other people to understand how [to] approach someone. What can I say? Should I say cancer? Should I not say cancer? Even today, people say, “Can I say cancer?” Yeah, it’s cancer. It’s no big deal but I have to respect other people. It’s tough.

You have to have someone to talk to [and] open up [with]. You can also strengthen your mentality to go in a positive direction.

Emmanuel S. emotional support
Getting emotional support

At the moment, I had a [life] coach so I think this helped me a lot. They could be a life coach, could be a psychologist.

Sometimes the male figures in our lives are not so present so we don’t have someone to talk to and normally the person who’s going to listen to us is a female — our mom or our girlfriend. Mostly, we don’t have the opportunity to open up with another guy.

They don’t also give us incentives to open up as well. If you told me, I’ll give a message to a young man, I’ll say, “Be strong and don’t cry,” because that’s what it is. I would tell him that because that’s what it is.

But at the end of the day, you have to have someone to talk to [and] open up [with]. You need someone to help you organize your thoughts and construct your reality. It’s super easy to base all of this information on a false reality, which is I’m going to die.

You can also strengthen your mentality to go in a positive direction. We’re here one day at a time.

Getting the official diagnosis

[In] the beginning, I was scared. I was really scared so I didn’t want to understand anything. I was like, “Alright, let’s just do it. You guys tell me what I’m going to do. I’m going to come here. What is it? Every week? Every other week? We’ll get it done and I’ll leave.” That’s it. I didn’t want to know.

Emmanuel S. hospital gown

Treatment

ABVD chemotherapy

I did IV every time. It’s tough because you’re going to get poked [and] sometimes they wouldn’t get the right spot. It’s not fun.

There [are] a lot of things that they told me I could do, which is having a cleaner diet [and] drinking a lot of water. All of this I was actually doing. I went full on with it.

I went on [an] alkaline diet. I started eating less meat, less sugar, [and] less milk — all of this stuff to help me. In my mindset, it made me stronger. I was able to go into chemo day [feeling] good [and] ready to go. It’s like a battle. I was ready.

Then there are some days that they just poke me the wrong way. It’s tough but it’s part of it. Just try not to anticipate the pain.

I just was so positive [about] everything. This is not it. I have so many things to do.

Emmanuel S. no hair loss
Side effects of chemotherapy

The first thing [usually] is hair starts falling out, right? All my hair didn’t fall out. That’s funny because I told the doctor, “Doc, all my hair is not going to fall out.” He goes, “Alright, let’s see. Let’s see.” My hair didn’t fall out, so I was happy about that.

I just was so positive [about] everything. This is not it. I have so many things to do. It’s okay. I’m behind. I got to go. That was my mindset. I was so strong in my mindset.

Mouth sores [are] a pain. But then through searching and looking at so many other people’s stories, I saw the Biotène toothpaste. They have a whole line of all the Biotène products, which is great. I don’t know if there [are] any other products that are more natural that can prevent cold sores, which is what was really helpful. I don’t even remember having the mouth sores until I saw a video that I filmed.

[I had nausea] all the time. It was horrible but it’s something you can get through. I remember the first chemo I did. I went back home and slept for four or five hours. When I woke up, I went downstairs and my stepdad said, “What were you doing?” I go, “I was sleeping.” He goes, “You better not ever do that again. You got to live your life normal.”

He’s right. What am I doing coming home and just crashing? I was exhausted and that’s okay. You can go home and take a nap. But he’s right. How am I gonna come home and just lay down and sleep?

I don’t remember [taking any medication for nausea]. I was trying to fight it off, just trying to be a tough guy.

I didn’t read anything. Again, I really was kind of ignorant. I think that was my only thing. If you can go back in time, just make sure. This is only for some healthcare professionals but not everybody is always on the ball and not everybody always knows what’s going on. These nurses have a lot of patients. Sometimes they can get confused. You need to be on top of your stuff. I know that I have to take this and I shouldn’t take this. I think that’s one of the things that I would have changed.

I’m a little bit eight or I’m 80. I’m kind of extreme. I should find a middle balance, maybe find out about some side effects. I did with the Biotène and certain things, but there [are] some other moments I should have learned a little bit more.

Emmanuel S. fruits and vegetables
Adopting a healthier diet

On those days, I would buy water with more pH. I had this whole mindset that I got to drink water that has a high pH, drink water with lemon, and all [these] nuts and healthy foods. I was into that.

I didn’t have meat, sugar, milk, [and] alcohol. I literally cut all that out of my life. Every morning, I was doing these green shakes [with] beet juice, beets, carrots, celery, and kale. I had all that and I drink it every morning. Part of me [thought it] would help fight off nausea and maybe just fight off some of the cancer.

My whole life became focused on what’s going to go inside my body and what I can do to control it.

Emmanuel S. on treadmill
Taking care of myself

I compete against myself all the time. I’m always pushing myself. I’m highly dedicated and over passionate about everything.

When this became my full-time job, taking care of [myself] and just [making] sure [I] can see the next corner that’s coming up, I just [focused] all my energy on that [and] just trying to get better.

I really [focused] a lot of time, energy, and even money on food because food is expensive, especially going organic as much as possible on certain foods. I started doing a lot of research and then my whole life became focused on what’s going to go inside my body and what I can do to control it.

The day they told me, I was stoked because it was my dream to visit Antarctica.

Emmanuel S. arms outstretched

Remission

Getting the all-clear

It’s tough because one thing they tell you is you go into remission. Once you finish, they don’t give you the cure label. They give you the remission label, which is horrible. What’s going on?

It’s like giving you a possibility of a window. Maybe something’s going to come back. Why? When people start saying things, I just disregard [them] entirely. “Oh, no, you could get cancer again.” Disregarded. I’m not going to take that. I don’t need that but it’s a possibility. I might as well just keep my mind clean.

The day they told me, I was stoked because it was my dream to visit Antarctica. My mother [said], “No, you’re only going to go to Antarctica if the doctor allows you to go.” When I asked the doctor, he said, “You’re good to go. You can go to Antarctica.”

I was super stoked because I didn’t want to miss the trip or the part of Antarctica. I didn’t want to get on the boat too late. That was a great experience. I think something to look forward to overall was really important for me.

Emmanuel S. snorkeling

There [are] a few places on the planet that I suggest everybody [visit]. One is French Polynesia.

You can buy a ticket once you’re done with your treatment two years out or a year out because it also becomes more feasible to buy such an expensive ticket or go somewhere that you’ve always dreamed of going.

I think that’s going to be something that could help a lot of people. Put it on a credit card or pay in installments and just make sure you have something to look forward to, like a really good trip.

I think that’s something important to have, something to look forward to. I had that and that saved me. That really did save me. It gave me all the power that I needed for the day-to-day battles to just get through it.

Relapse

I had to keep doing the CT scans for the first two years. Every six months and then after that, once a year. I was done with it but, at the same time, I still had to go back.

It was good because every time you go back, you confirm you don’t have anything.

I’m going to show the doctor again that I don’t have anything and that became my game. I’d show the doctor every time that I was good.

The sooner I found out that it’s something or it’s not something, the sooner I can be at peace or I can tackle what I have to tackle, which is super important because time is everything.

Emmanuel S. scar at the base of neck
Symptoms of relapse

I started feeling night sweats. What was getting me was just getting scratchy and itchy during the week. I started working out [and] I started getting itchy but that’s also normal for some people so don’t freak out if you have this.

I also felt like I had a lump at the base of my neck. It was funny because it was like down, down below so only I could really feel it. Everyone, all the doctors, was like, “Oh, this is nothing. No, need to worry about it. Don’t stress about it.”

I don’t have the best history so I [thought] I should get this checked out. I insisted. I insisted so much that I ended up doing the biopsy, which is great.

What I realized was, in this case, the sooner I found out that it’s something or it’s not something, the sooner I can be at peace or I can tackle what I have to tackle, which is super important because time is everything.

There [are] some people who unfortunately pass away from Hodgkin’s and non-Hodgkin’s lymphoma because I think sometimes, they might be in a denial. They might think that it’s nothing. They might push it off, might be scared. But there’s no excuse for that. Get to tackle it as soon as it appears.

Emmanuel S. holding hands
Finding out about the recurrence

I knew it, but I was in doubt. At that moment, I no longer played the positive game because I’m thinking, okay, now I’m screwed. Now, this is it. I’m going to have to do this again. If it is, it is. And if it isn’t, it isn’t.

I’m crazy [because] I think I smiled. I remember my wife, my fiancée at the [time], she was crying, breaking down. [I was thinking] let’s go. Let’s do this. When do we start? Thinking that also that this type of treatment was going to be the same as the first time, which I didn’t lose my hair, I had some mouth sores, and that it was about it.

The second time was two times harder and I had no idea about that. I was all excited [that] it’s going to be easy again. Not that it was easy, but I was happy. I wasn’t like happy happy. I just turned the beast mode on in my mind. Let’s go. Let’s kill this bug.

In the beginning, the first time I was diagnosed, I considered it a bug, like a bug in the program. My dad put that in my mind. You have this bug, you need to fix it. Get the bug out. That’s the way I thought about it. Let’s kill the bug and that’s it. For me, cancer was a bug.

Treatment

Autologous stem cell transplant

That’s where I was like, “Oh no, I don’t want to do any of this. It’s not fun. It’s no beast mode. This is not it. I don’t want this.”

Did I really wish this upon myself? That part was tough. When he told me that I had to do all these things, I was like, “Oh.”

[During] those moments of surgery, I started learning to become at peace with myself, accepting certain things.

Emmanuel S. blood test vials
Preparing for stem cell transplant

A blur. I don’t know why I don’t focus so much on all these details, but I remember that I had to get certain blood cells to go up. There [were] things that I had to get leveled out. I had to do injections. I had to do a bunch of things. They had to take out blood.

They had to install a different port that had two exits. It was horrible. It was really bad. I don’t think anybody likes the whole feeling of surgery and all that.

[During] those moments of surgery, I started learning to become at peace with myself, accepting certain things. Not death itself, but just this is it. Take it easy. We complicate life so much.

They install a port, connect it to a machine, [and] filter your blood. They collect a bag of your own stem cells [and] freeze that. They send you home. You come in back to the hospital. Then you do [an] official check-in and then that’s when they give you high doses of chemo [and] pretty much shut down your immune system. That’s what everybody gets scared about. But, again, I just put my stuff there with the lucky ones. Nothing can go wrong here. It’s going to be good. Let’s do it.

Emmanuel S. IV stand

This was actually during Christmas and New Year’s, so I was really happy, I guess. My whole room was decorated with Christmas stuff. I got presents. I’m going to spend Christmas in [the hospital so] I’ll make it a whole thing, that was my perspective. I had a nice room. I was blessed. I had everything. I had everybody treat me really well. I really can’t complain.

I was in the hospital by myself for 21 days and nobody could go in with me because of COVID protocols.

ICE chemotherapy

When the doctor told me that I had to do ICE, he explained to me that it was going to be much more intense [and] that I was for sure going to lose my hair. I was going, “I didn’t lose my hair last time. Why would I lose my hair this time?” “Well, it’s a little bit different. Take it easy. We have to have you put a port, you’re going to have to do all this stuff.” I was like, oh my goodness, this is going to be a little bit more different. But other than that, my mindset was still the same. Let’s prove everybody wrong. Let’s not lose your hair and all this stuff.

Emmanuel S. looking out a window

Also, we had COVID going on so it was a lot more annoying because I got to keep doing COVID exams before going to the hospital. It was all good. I really can’t complain.

It was a little bit different from the other treatment. I had to go to the hospital and stay there for five days. I would go into the hospital, check in, do the ICE treatment for 3 to 5 days, and then I would check out. That was horrible because I also have to eat the hospital food and that itself is tough. And dealing with people coming [into] your room all the time.

There I started kind of feeling almost [like] a prisoner. I think that’s one of the toughest things that I felt. When I was doing the chemo, when I was doing the transplant later on, I was in the hospital by myself for 21 days and nobody could go in with me because of COVID protocols. I would look out the window. I remember I was like, “Man, you guys are lucky.” People are waiting, sitting at the bus stop. You can do whatever you want. You can stop and get ice cream. And I’m stuck in here. I can’t do anything. You become a prisoner and you didn’t do anything wrong. That’s tough.

Emmanuel S. on hospital bed
Side effects of chemotherapy

The nausea was what got me the most. But again, I’m really lucky. I sailed around the world for two and a half years. Think of a person who’s used to having nausea because the boat’s always moving. I was so used to it. I thought it could be worse. Again, I’m always thinking positively, but that was one of the worst things that I felt.

I actually didn’t lose my hair until after the second cycle. When I went after the first cycle, the doctor’s like, “Man, I’m starting to worry because you’re not losing your hair. Maybe the chemo needs to be stronger and you’re not reacting to it.” I was like, “Oh, I don’t know. I don’t know about that. Chill. I told you my hair was going to fall out.” It was a bit of a shocker.

After I got high doses of chemo, I started feeling really sick [and] getting really bad. I thought I was going to die. I actually had an infection in my stomach, like a simple bug that anybody would get. For a person who doesn’t have any immune system, it completely just threw me off. I ended up taking four or five days of adrenaline in the ICU until my pressure stabilized. Then I spent New Year’s in the ICU. That’s when I had some type of complication as I was waiting for the bone marrow to start back up again.

Emmanuel S. post-aSCT
Post-aSCT

I left the hospital. It was kind of good that COVID was around because everybody was already used to not going out. I was home for 100 days.

There [are] a bunch of things you cannot eat. You can’t have your favorite foods. My favorite is having sushi and seeing my friends. I can’t do any of that. I couldn’t go near animals.

Follow-up protocol

I’ve done a few PET scans. I did one [in 2021] and [it] already was pretty much clean. Then again I did one [at] the beginning of [2022], clean. I’ll probably do one again in a few months and clean.

Emmanuel S. hand weights
Maintenance dose of Brentuximab

You think you’re done, but you still have to keep going back and [doing] these checkups. The side effects immediately are not so bad. Everything is good. You think everything’s okay. But the problem is after — and this is super important and I wish I can get this out to more people — the medicine is cumulative.

My doctor said, “Are you able to hold your phone or are you able to hold your fork and your cup?”

“Why? Is this going to?”

“Yeah, you might start falling.”

Until I was about a year into it, then I started really understanding what she meant. I started falling. I didn’t have enough strength in my knees. It felt like it was my knees. I started losing a lot of muscle and that was one of the biggest side effects. I realized that I couldn’t even go up a flight of stairs. That was really bad.

What she told me also was that normally, people don’t finish the dose that they give you. They give a 1- to 2-year thing. People normally don’t finish it. I was like, “Oh yeah, I’m going to finish it.”

I had side effects [where] you can’t feel your fingertips. “Oh, it’s not bothering me that much. It’s okay.” Until it got really bad.

Emmanuel S. physiotherapy
Polyneuropathy

At the beginning of [2022], I was diagnosed with polyneuropathy. I had nerve damage in my fingers, my hands, and my legs. I had to go on physiotherapy. Again, I couldn’t walk. I couldn’t go up the stairs. I couldn’t do anything. It was horrible. It was like pretty much a child again. I couldn’t do anything.

I revamped and focused my energy on physiotherapy. I started swimming classes, started physiotherapy every day. Thank God. I just poured all my resources into that because I knew I had a window and if I missed that window, I would take longer to recover. I have a year to kind of get back on track.

[My doctor] said we can reduce the dose but then she realized that I was pretty bad. They actually stopped the dose. They told me to go [to] the hospital to do a full check to make sure it wasn’t anything else. But it was obviously the medicine because they ran all the tests. Again, some tests that I never, ever wanted to do, like the spinal tap. There’s nothing wrong there. It was actually the medicine and that was it.

Let’s get off the medicine and let’s see how you recover. And based on how you recover, we’ll see if we can go back with medicine or not. Cut the medicine [and] I started recovering really well because I started doing everything I could in my power. Then that’s it. I saw the doctor, she said, “Let’s not do anymore.” Sounds like a deal.

I didn’t know what it was like to receive that kind of help.

Emmanuel S. seated

Financial impact of cancer

My mom was paying insurance. I think you had to pay up to $5,000 out of pocket. Once you hit that $5,000, everything over that was okay. But I still had to pay $5,000 out of nowhere so I started looking for help online.

There’s a lot you can find. One of the places was the [Leukemia & Lymphoma Society]. I asked for help and they were able to help me with direct payments to the oncologist or to the hematologist at the moment. It was super helpful.

I didn’t know what it was like to receive that kind of help. I was asking some other places. I think I got one of those notes from one of the companies. “Sorry, there [are] no funds at the moment. Try again later.”

I remember getting a letter [from LLS] saying you are approved. So cool! This actually happens. I was so touched because I didn’t know that this help existed and I didn’t feel so alone at that moment. I was like, wow, people actually want to help.

Dealing with health insurance

I was having some problems with health insurance. They didn’t want to cover me. My health insurance denied me because I previously had cancer so they were trying to put me into this square where they didn’t have to cover me. That was a bit of a dilemma.

It’s tough for somebody who has no condition to pay. You feel so relieved when you have someone with you.

Emotional impact of financial help

I never felt that before. I didn’t know people helped. You see things [about] people [helping] in this [context] but it really only helps when it can directly help you. I felt like nothing was really actually directly helping me until I saw that financially, somebody could help me.

I was in shock. I have so much to thank them for because it gives you a deep sigh of relief. At least I don’t have to pay all of that myself. Someone’s there to help me out with at least half of it.

Emmanuel S. and wife Jessica

I cried that day and I did because I didn’t know that people would give out money like that. I really didn’t know. After that, I also started donating because I didn’t want anybody to ever get a note saying that they were denied or there [weren’t] enough funds for them to get money. Whatever I can do also to help other people. I donate $25 a month. This is nothing. It’s something but symbolically, it can help a lot of people and make sure that they never get that note saying sorry.

It’s tough for somebody who has no condition to pay. You feel so relieved when you have someone with you. We’re all here alone on our own journey. In my case, I have an amazing wife and she’s my partner through all this. This makes this show better. It makes it a lot easier.

Anybody in my family could have gotten cancer but it was me. If it was someone else, it would have destroyed the whole family. It was meant to be, it was supposed to be me. I’m the strongest one mentally and physically.

Emmanuel S. family

Support from family

Overall, I just had to keep pushing forward and just keep doing it. Thank God I had my future wife who was next to me pushing me all the way through this. I really did it alone, in a way. I didn’t want to put this weight on anybody, on my family. I guess it’s more of my style to do that.

When I told my mom, she was like, “What was the result?”

I said, “Oh, everything’s okay. I have to do some chemo.”

“Wait, is it good or bad?”

“It’s pretty bad but it’s all good.”

She’s like, “I don’t understand.”

“Don’t worry. It’s all good.”

She’s completely confused. I had to brainwash her a little bit so she wouldn’t know because she could have been more affected than me and I didn’t want that.

Emmanuel S. seated fight mode

Sometimes we’re the strong links. I always thought about that. I was lucky.

I have four little brothers and sisters. I always think about the other perspective. I think I was the selected one. It could have been my mother, my dad, my grandmother, my little brother… Anybody in my family could have gotten cancer but it was me.

The way that everything played out is perfect because I got cancer and I fought it because I was healthy, I’m strong, and I beat it. If it was someone else, it would have destroyed the whole family.

I always think about that. You know what? I’m lucky. It was meant to be, it was supposed to be me. I’m the chosen one and that’s it.

I’m the strongest one mentally and physically. And, I thought it all worked out, thank God.

Realizations after cancer

It’s tough to share a tip for somebody. Everybody’s so different. I think sometimes people can look at me like, “Oh, it’s easy for him to say that,” but it’s really not. It’s just a mindset.

You have to just find out what makes you tick. Most people can’t find that even without a huge health problem. Most of us are still figuring it out. It’s tough. I think you just try to hop on something that you’re passionate about.

Say it enough times [and] you just believe it.

Emmanuel S. beach
Keeping a positive mindset

I like being the odd one out. It’s part of my mindset. I was like, “So, doctor, how many people have not lost their hair?” He’s like, “Only one girl. She was Colombian.” And I was like, “Oh, my mom’s Colombian, so maybe I won’t lose my hair.” I just stuck myself in that category. I’m not going to lose my hair.

We have the odds, right? I really try to put myself in the best percentage. I’m there with the good guys. When I relapsed, I’d fall into the bad category, but you can’t win them all. I’ve always tried to put myself in the positive. I played myself as a winner before I win, so it’s okay.

Say it enough times [and] you just believe it. I just say it and I believe in it. I don’t have too much doubt. It’s just natural. I just try not to think about it. I just think it’s going to be next page, next page, next page.

I don’t wish it upon myself but if it comes back, I’m ready for it. What doesn’t kill you makes you stronger, but literally, it’s part of it.

It’s not written in the stars in a way but it is what it is. If it comes back, I prefer having this and having to have to fight this. I compare it to [crossing] the street [and] you get hit by a bus. Boom. That’s it. You don’t even see it coming. At least here, we can see it coming.

I don’t wish it upon myself but if it comes back, I’m ready for it.

Emmanuel S. side table
Words of advice

That’s my problem, I never stopped and reflected. If I did, it might have been a handful of times [when] I stopped and started really thinking. I don’t give myself that pleasure of reflecting. It’s also a male trait because I think females and women, in general, [are] more reflective. Men are always thinking of something else. I think that was me and I always had this “go go go” [mindset]. Keep going. I think that helped me. That really did help me.

[Emotions come] in big old bundles, like a big old cloud. It’s [a] sunny day until three days of rain. And that’s normal, even with work. You’re “go go go” and then all of a sudden, you’re suddenly having a bad day. If you had 25 “go go go” days in a row, you can have one day off.

Emmanuel S. coffee

It’s going to be tough. [There will be] a lot of tough moments. This is an experience and just embrace the experience. Embrace the good and the bad.

I would just say, “Bro, keep doing it.” I did it right. I know I did it right. I was able to distract myself in a way where I was only focused on this alkaline diet. I got a little obsessed about healthy food and all this stuff. I dove into it, head first, and I think it really did help me.

I don’t want to say anything cliché, like be strong. Everybody has their own perspective. The best advice I could say to someone would be [to] lead by example. It’s going to be tough. [There will be] a lot of tough moments.

Just smile. Try to smile and see the best in things and know that we’re alive for a reason. We don’t know officially where we go, where we come from, while all this is happening. But this is an experience and just embrace the experience. Embrace the good and the bad.


Emmanuel S. feature profile
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Hodgkin’s Lymphoma Stories


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1st Symptoms:
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Treatment:
3 rounds (6 infusions) of ABVD chemo

Danielle D., Hodgkin's, Stage 2



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1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
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Jason F., Hodgkin's, Stage 2A



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Logan A., Hodgkin's, Stage 2A



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Lump in neck & fatigue
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Helicon K., Hodgkin's, Stage 2A



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Lauren

Lauren C., Hodgkin's, Stage 2A



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

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
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Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)

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



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
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Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
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Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
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Charlie B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
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Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
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Mara T., Stage 2BX (Bulky)



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

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
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Tylere

Tylere P., Hodgkin, Stage 3



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Kayla T., Hodgkin's, Stage 3A



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Erica H., Hodgkin's, Stage 3B



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CC W., Hodgkin's, Stage 4



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Ava O., Stage 4B



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Delishea A., Hodgkin's, Stage 4B



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Topics: Finding community & support, self-advocacy
Emmanuel S. feature profile

Emmanuel S., Relapsed Hodgkin’s Lymphoma



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: ABVD, ICE; autologous stem cell transplant; Immunotherapy: Brentuximab
Favorite0
Categories
BEAM Cancers CAR T-Cell Therapy CAR T-Cell Therapy Chemotherapy Diffuse Large B-Cell (DLBCL) Ibrutinib (Imbruvica) Immunotherapy Non-Hodgkin Lymphoma R-CHOP R-ICE Radiation Therapy Relapsed and Refractory Stem cell transplant

Robyn’s Stage 2E Relapsed Diffuse Large B-Cell Lymphoma Story

Robyn’s Stage 2E Relapsed Diffuse Large B-Cell Lymphoma Story

Robyn S. profile

Robyn was diagnosed with Stage 2E Diffuse Large B-Cell Lymphoma, ABC subtype. Four years after going through R-CHOP chemotherapy, she relapsed and went through more chemotherapy, a stem cell transplant, and radiation. She relapsed a second time only 9 months after therapy. This time, she joined a clinical trial for CAR T-cell therapy.

She shares her experience with different treatment modalities and advice on looking for clinical trials.

Robyn S. timeline
  • Name: Robyn S.
  • Initial Diagnosis:
    • Diffuse Large B-Cell Lymphoma
    • Stage 2E, ABC subtype
  • Initial Symptom: Supraclavicular lymph nodes
  • Initial Treatment:
    • R-CHOP chemotherapy

  • First Relapse:
    • 4 years later
    • Lymph node at the back of the neck
  • Treatment:
    • Chemotherapy: R-ICE, Intrathecal, BEAM
    • Autologous stem cell transplant
    • Head and neck radiation

  • Second Relapse:
    • 9 months after therapy
  • Treatment:
    • CAR T-cell therapy trial
    • Bridge chemotherapy: Ibrutinib
  • Remission:
    • Lymph nodes gone within 1 week of getting CAR T-cell therapy

My biggest contribution to medicine is probably not as a physician but as a patient and that’s okay. I’m good with that.

I have been given a second chance at life and it’s an unusual experience for everyone. I cherish it and I enjoy every minute.



I’m really nervous I have cancer. Right [on the collar bone], it’s pretty much never benign.

Robyn S. 2010 9 months before DX

Pre-Diagnosis

Tell us about yourself

Until 2011, I was a very healthy practicing physician with three young kids. I exercised every day, ate right… I probably worked too much. As a mother with three kids, [with] soccer practice and swim lessons, I was probably a little tired but other than that, very, very normal.

Initial symptoms

In the spring of 2011, I was watching TV and I realized that I had a supraclavicular lymph node, which is a lymph node above your collarbone. Given that I’m a physician and a radiologist, [I know] that is always abnormal. It’s usually a sign of some type of cancer — most likely ovarian cancer or lung cancer. That was a really startling realization with no other symptoms — no weight loss, no fevers, no nausea, nothing. Just an enlarged lymph node.

I turned [to] my husband [as] we were watching TV with the kids and said, “I have this supraclavicular lymph node. It’s always abnormal. I’m really nervous I have cancer because it’s always abnormal.” He looks at me [and said], “It’s nothing. You just see too many people with cancer,” because that’s what I do for a living. I do a lot of oncologic imaging, mammography, and PET/CT.

It was one of those situations where I just [turned] my neck and I realized, “Oh my, I have a node.” In the axilla, sometimes the neck, they could be benign. But right [on the collar bone], it’s pretty much never benign.

The next day, I went to work, went to see a friend of mine who is a surgeon, and he’s like, “You have a lymph node so you need whole body CAT scans.”

The minute I looked at [them], I knew I had lymphoma. It was really stunning to actually see your own CAT scan and see that pathology.

Being a physician-patient

It was weird. I’m a radiologist. I read CT scans for a living.

I went to a surgeon who ordered these CAT scans and I had the CAT scans done. He started it from [the collar bone] all the way down to my pelvis because most likely it was an ovarian, stomach or lung cancer. I looked at the images and I didn’t see any cancer there but I saw all these lymph nodes in my neck.

I got back on the scanner and had them scanned a little bit higher up. Sure enough, I had lymph nodes all the way up and down my neck. They weren’t palpable but the minute I looked at [them], I knew I had lymphoma. It was really stunning to actually see your own CAT scan and see that pathology.

The waiting is the hardest part.

Robyn S. 2017 Ireland

Initial diagnosis

Realizing you have cancer

I was sitting there healthy. I had no symptoms, no significant family history, nothing. The only thing I had was one palpable lymph node, which was 14 millimeters. It wasn’t that big. It’s just that I do this for a living.

I have probably hundreds of lymph nodes in my neck. There [were] a bunch of lymph nodes behind my nose. I have allergies and at that time, I had some allergy symptoms — probably the symptoms were really from the lymphoma that year — but it was nothing unusual for me.

But to realize that I had cancer then it’s, “Okay, I have cancer. I wonder what kind of lymphoma it is. I hope it’s a Hodgkin’s versus a non-Hodgkin’s because Hodgkin’s has a better response rate.”

I told one of my partners and [literally] the next day, I had a lymph node biopsy performed at work. One of my partners did an ultrasound-guided lymph node biopsy, which I do all the time. Knowing that it’s in the neck, you put a needle and you take some cells out.

I looked at them with a pathologist under the microscope and I asked him if there were Reed-Sternberg cells, which are what you see with Hodgkin’s lymphoma. He said, “No. I just see B cells. I think you have B-cell lymphoma.”

It was tough because this is somebody I work with all day. My partners are doing my biopsy. One of the pathologists is looking at this and says, “You have lymphoma.” Then on Monday, he called me and gave me the subtype.

Because I was diagnosed with something called diffuse large B-cell lymphoma, which is a very aggressive lymphoma, I saw an oncologist that week. I had a port put in and the week after that, I started standard chemotherapy, which is called R-CHOP.

Waiting for more answers

Tom Petty said it the best. The waiting is the hardest part and that’s what I [say] to all patients who are going through this now. You’re sitting there, you’re new at this. I’m a radiologist. I’m not an oncologist. I know a lot but I did not at that point [know] that much about diffuse large B-cell lymphoma.

You’re waiting, your oncologist gives you statistics, and you don’t even hear them and try not to focus on [them]. How do you tell your kids? How do you think chemo is going to go? It’s very daunting, even though I’m in the business, so to speak. The thought of having chemotherapy and having all these procedures done.

One of the chemotherapy agents is called Adriamycin, which is called the Red Devil. Most people have heard about this one and dread that. You wonder, how am I going to do with this? Am I going to be able to function? Am I going to be sick? Of course, you do lose your hair, that was 100% told to me, but it’s scary. Then you’re going to do all these chemos and are they going to work or not? Are you going to survive? You don’t know. You just don’t.

Getting the full diagnosis

With the staging, I had to have all the CAT scans in a PET/CT [and] a bone marrow biopsy, which is unpleasant. I was a stage two, technically stage 2E because I had some lymph nodes behind my nose and something called Waldeyer’s ring — E being extranodal. It makes the diagnosis worse.

Then I had a subtype and that’s sort of controversial. The typing of lymphoma has changed. Back then, I was diagnosed as a germinal cell, but later, I was diagnosed as an ABC subtype. I think it was a mixed subtype. It doesn’t really matter that much. They all suck.

The oncologists do tell you what your percentages are, that’s really part of their job. You need to have some expectations. I’m an optimistic person, so I was, “Okay, fine, I’m healthy. I’m going to do great.”

There are certain types of lymphoma that are worse than others and it’s a process to go through. I remember my oncologist telling me, “If this chemo doesn’t work, we’re going to do something called salvage chemotherapy.” I remember looking at him and saying, “Nope, we’re not going to do salvage. I’m not going to need salvage, not doing it.” He just smiled and shrugged his shoulders, “Well, I just have to tell you that.”

You’re going to do all these chemos and are they going to work or not? Are you going to survive? You don’t know. You just don’t.

Robyn S. 2021 NYE

Breaking the news to the family

That was the hardest part. My husband, I remember talking to him the Monday when the pathology came back. My biopsy was the Friday before Mother’s Day — Mother’s Day traditionally is not a great day for me. I’ve had three Mother’s Days where I was diagnosed with cancer.

On Monday, I got the final results and I remember talking to my husband [while] walking around the neighborhood. We were both just crying. People were looking at us thinking [that] we’re getting a divorce or something. Then to have to tell the kids.

The kids were, at that point, 18, 17, and 13. My youngest child actually has a physical disability. He’s fine but he had just finished a major surgery for leg lengthening. My daughter has anxiety. My middle son is very academic, intense, [and] scientific. When I told all the kids, he was immediately on the computer looking everything up. My daughter was in denial. My son was very upset. It was just hard.

‘Hang in there with me and I think everything’s going to be okay.’

I had two going to college at that point and one was in middle school. They’re older but they’re still babies.

Telling your kids

I said, “Mom has a bad diagnosis. I have cancer but that doesn’t mean that it’s going to kill me. I’m going to take therapy, lose my hair, [and] potentially going to be very sick. Just hang in there with me and I think everything’s going to be okay.”

I think for the younger kids, it’s harder with the hair loss in the way your appearance changes and there’s nothing you can do about it. [With] the chemo I had or anybody who has intense chemo, you lose your hair, your eyebrows, and your eyelashes, but the kids were very supportive. I just think they were nervous.

I don’t know if there [are] any good ways to do it. There are some books out there for younger children like mom has cancer or dad has cancer. I think that might be a good way to do it with younger people, but being optimistic is what we did, what we’ve always done.

We did a family vacation. We didn’t let it stop us.

Robyn S. mid R-CHOP halibut fishing in Alaska

Treatment

Living with cancer

I had six rounds of CHOP. It’s very intense chemo. I would have the chemo on Friday [then] I would go to work on Tuesday in the middle of CHOP.

We actually took a family vacation to Alaska. I booked a vacation. My counts were okay. I talked to my oncologist [and] I found an oncologist in Anchorage that could cover any emergencies. We still took our family vacation. I have pictures of me out there, halibut fishing with my head wrap on, and we still did all this family stuff.

I was careful. Obviously, it’s Alaska. You weren’t around a lot of people so I wasn’t that worried about infection. I was a little tired [so] I would take some naps. We didn’t let it stop us.

Anybody who’s going through therapy, I’m telling you, that was amazing, to have some food, especially for kids.

Robyn S. July 2011 mid-R-CHOP
R-CHOP regimen

Think about chemotherapy now versus when I was in medical school. They actually gave you a lot of antiemetics [or] anti-vomiting medicines ahead of time, which makes you feel weird but it keeps you from throwing up. We had all of that.

They give you either Neulasta or Neupogen shots after chemotherapy that keep your blood counts up so you don’t get as anemic and you hopefully don’t need any blood products. Some people need some transfusions; I didn’t. It’s just a lot of shots.

The infusion itself would take all day. I would have friends come in about every 2 hours in shifts to talk to me.

The other thing that people did is bring food. People brought meals two or three times a week, which was really nice for the family. Anybody who’s going through therapy, I’m telling you, that was amazing, to have some food, especially for kids.

I felt nauseous all the time. I compare it to morning sickness but I never was violently ill. Now, everyone is different. I think I tolerated it pretty well.

The other thing about it is they give you a lot of steroids. A lot of people get all puffy. You gain weight and then you’re nauseous [so] you’re not eating then you lose weight. It’s up, down, up, down. One week, you look puffy and moon face, the next week, you look skinny.

Overall, though, I did well but I had really good physicians. I had friends to help. I didn’t feel great, but I didn’t feel totally awful, so that was a good thing.

I followed everything I was supposed to do.

Robyn S. post-R-CHOP
Side effects from R-CHOP chemotherapy

It always gets worse, mainly because your blood counts keep going lower. You become more and more anemic no matter how many Neupogen or Neulasta shots you get because there’s a cumulative effect on your bone marrow.

I followed all my doctor’s directions. I took certain supplements when they told me to and I followed everything I was supposed to do.

As far as the shots, I think that’s also key for people. I took all the anti-nausea medicines. They would say to stay on a schedule of anti-nausea medicines. I don’t like to take pills [but] I followed everything they said. I think that’s part of the key too.

You also have a more bland diet. They have a nutritionist that meets with you and I think all those things are helpful.

Integrative medicine

My advice to patients is that when you’re at a cancer center and if they have nutritionists or psychotherapy, that’s great. Sometimes centers have things like meditation and massage. There are all these things that cancer centers are doing as part of their integrative treatments and I highly recommend [them]. When I went through R-CHOP 11 years ago, this was pretty new. Now, at least where I work, it’s a standard of care at the center but patients have to take advantage of it.

No one should be embarrassed to ask. I was very happy to see an oncology therapist because to face a life-threatening disease is difficult for most everyone, I would think. It’s a nice service that a lot of these folks offer. I think it’s very important.

Robyn S. 2015 4 months before 1st relapse

Follow-up protocol

The follow-ups were done once you had a clear PET. [For me], it was after three months of therapy and six months of therapy. I had a completely clear PET/CT. After that, they followed me for two years with just regular CT.

I had actually gotten beyond any type of imaging because at two years, they stopped imaging. Theoretically, if you make it to two years [of] complete remission for diffuse large B-cell, there’s a high likelihood you’re cured.

I would actually go see my oncologist first. It was every six months for a while and then it was every year until three and a half years [to] four years. That was the standard follow-up.

[I also had] yearly blood draws. If you go see an internist, a lot of times, they do blood draws. I followed the standard two years of imaging then every six months oncology, every year oncology, and yearly blood draws until I relapsed four years later.

Sure enough, I relapsed.

Robyn S. 2015 post-ASCT hair growing

First relapse

Unfortunately, I relapsed at four years and that was on [a] clinical basis, not based on scans.

Sort of the same thing happened to me. We were in the spring of 2015, April 2015, we were walking around a yard and I realized I had an enlarged lymph node. This one was behind my neck and that’s not a typical area to have inflammation from infection. I didn’t have any cuts or anything. I had no reason to have a prominent lymph node. I went to see my doctor and they ended up doing a CAT scan.

It’s funny how you remember these things exactly. My husband and I were walking around our backyard, looking at the garden. I realized I had a large lymph node again in [the] back of my neck and I wasn’t sick. I immediately thought about lymphoma. Once again, my husband goes, “You’re working too much. You see this all the time. It’s probably nothing.”

I made an appointment to see my oncologist because I felt this node had not been there before. Sure enough, CAT scans, PET scans, I relapsed and this time, it was still stage two. Once again, all the lymph nodes were in my neck and I had one lymph node in my left armpit but it wasn’t big.

I’ll always tell people who have a life-threatening condition, particularly like mine: it is totally reasonable to get more than one opinion.

Getting a second opinion

I actually got several consults from where I live because I live at a major tertiary care center and I called my medical school, which is another tertiary care center. Then I went to MD Anderson for a year. I got three different consults and even a fourth.

A consultant was sent to Nebraska, which is an area of lymphoma. I had been out four years and it was unusual for me to relapse. I wanted to know what else I could have.

At the time, I was just trying to stay alive. I was going to take my best odds. Now, in retrospect, I wish I hadn’t had the radiation, but at the time, I had talked to the specialist. At some point, you actually have to go ahead, have faith, and believe in who you’ve consulted.

I actually had consulted more than one doctor and one thing I’ll always tell people who have a life-threatening condition, particularly like mine: it is totally reasonable to get more than one opinion. That actually helped me because I had several institutions saying the same thing and that I think was helpful. If it’s just one institution, I don’t know if I would have been as comfortable.

Robyn S. April 2015 R-ICE hospital

Treatment

R-ICE chemotherapy

Back then, I asked about natural killer cells because it had been in the news, but there was nothing available. Everyone convinced me I needed to have a stem cell transplant. I had two rounds of R-ICE, which is much more intensive chemotherapy. It requires you to be in the hospital.

The “I” part of it makes you feel really lousy. During the middle of the night, you have to eat ice cubes to prevent your mouth from getting all ulcerated.

Intrathecal chemotherapy

I actually had to have two rounds of intrathecal chemotherapy, where they do a spinal tap, put chemo into your spinal canal, and have it go up to your brain. Because I’d had the extranodal site initially, they thought I should prevent from getting CNS lymphoma, which was a good recommendation.

Once that was complete, I went into remission.

Side effects of chemotherapy
R-ICE chemotherapy

R-ICE is very difficult chemotherapy for most people. It results in a lot of severe nausea [and] a lot of mouth ulcers. The majority of people end up needing blood transfusions afterward. I did not. I was unusual. You have to take the Neulasta [and] Neupogen shots.

I was also able to work some during that. But I’m really unusual.

When you have pain, you take pain medicine.

Intrathecal chemotherapy

The intrathecal chemo was uncomfortable, but it wasn’t any worse than R-ICE. The thing that was unusual for me was getting the huge catheter that they had to use for the transplant, which is a tri-lumen catheter that goes in your neck. It’s really, really big. I have a bigger scar from that than I do my port scars. I’ve had ports every single time. I’ve had two and then I had this huge catheter.

With this, the only way you could shower is to put plastic all over yourself so you don’t get this catheter wet. It required some medical knowledge or at least to be instructed with directions on how to take care [of] a patient who has these things.

If you have a family member that’s going through this, you’re going to have to have somebody that either has some medical knowledge to start with, is a nurse, or is willing to undergo training and is not squeamish. I can only do so much by myself.

Just like with the R-ICE, because it’s a hospitalized chemo and a lot of people have blood transfusions and they’re very, very sick afterward, they’re [unable] to eat. It’s just very difficult for the caregivers as well as the patients.

Fast forward to the stem cell transplant, most people feel pretty lousy — not initially, but once your white count’s low. In my case, I had a fever and everything. A lot of people have mouth ulcers. They can’t swallow very well. It’s very difficult for the family members to watch that.

The nurses and the staff might give the patient pain meds. I know I had some narcotics when I was in the hospital, so some stuff I don’t remember. I’m glad I had narcotics. I had no problem. When you have pain, you take pain medicine. I don’t remember some of the stuff. I know it was very difficult for my husband and my older son who were there at the hospital. Very traumatic for them.

BEAM chemotherapy

BEAM chemotherapy is just miserable. The worst thing is the Melphalan (the last part of it) causes, quite frankly, really bad diarrhea, like dysentery diarrhea. It’s just the way it is. Everyone survives it. It wasn’t pleasant.

The side effect of Melphalan is tough. A lot of my friends were in the Peace Corps in Africa and they said you haven’t really been to the Peace Corps unless you’ve had diarrhea where you couldn’t make it to the bathroom. I always said I feel like I’m in a Peace Corps. Honorary member.

Managing side effects

When I was there, they have a thing where you would walk the halls. I’m a big exercise proponent and when you walk, it actually helps the stem cells engraft. I really cannot reiterate. I did follow all my directions. The nurses say you need to walk and even if you feel like total garbage, I’d be there with my little IV pole walking around.

Before I had the BEAM, I was even on an exercise bike. But then once you’ve had the BEAM and you’re really, really sick, it’s very hard to do anything.

Robyn S. June 2015 day of ASCT cell infusion
Autologous stem cell transplant

They actually took my stem cells out, which they do via something called apheresis. They hook you up and they take cells from one arm, filter them through a machine, take them out, and freeze them. Then you get admitted to the hospital for your actual stem cell transplant. They do myeloablation, where they basically blast your bone marrow.

There [are] different ways to do it. I had something called BEAM. You can do it with total bodily radiation. There are some other protocols, but it’s just horrible chemo. It totally obliterates your bone marrow. It leaves you with no white cell count and also a very high risk of infection.

I got an infection so I ended up with septic shock.

At the point, when you have had all your chemo, they give you your stem cells back. It’s really a stem cell rescue and then they wait for your stem cells to engraft in your bone marrow and start making new bone marrow cells, like blood cells and platelets. Until then, they give you transfusions and you hope you don’t get an infection because you don’t have any white cell count.

Going into septic shock

I got an infection so I ended up with septic shock. I was in the intensive care unit and I had a fever [and] septic shock. My blood pressure was zero. I was on something called pressors just to keep my blood pressure up.

I actually still have an aneurysm in my radial artery from having an [arterial] line. There’s nothing you really can do about it. You can just feel it. It’s not that it was done poorly. It just happens.

[Septic shock], it’s pretty common. People get sick. Sometimes they don’t get as sick as I did, but I wasn’t intubated. I had [a] high fever and a positive blood culture. What had happened is the line I had, even though they were using all aseptic techniques, had gotten infected.

They took the [central] line out, gave me all these antibiotics, and I got better pretty quickly. Then my cells engrafted, I started making my own red blood cells [and] my own white blood cells. I got out of the hospital in three weeks, which was pretty quickly. But I was sick. I was really sick.

I don’t remember some of it. My husband and people came to check on me. I was out of it. Evidently, I argued with the ICU doctor about which pressor to use, which I think is pretty funny. I was totally out of it and I’m arguing with the person who’s an expert. I’m a radiologist and I’m telling him which pressor I want. They must have thought I was really obnoxious.

They probably aren’t used to the bone marrow transplant patient arguing about the pressors, which, now I look back, is sort of funny. But the bottom line is they took great care of me and I’m here and I’m alive. Then I went home.

Robyn S. 2015 post-ASCT Berlin
Post-stem cell transplant

You have to be very careful after a bone marrow transplant because even though I had a few white cells, you’re likely to get an infection. You’re not allowed to be around anybody.

The worst was you can’t eat berries — I love berries, like blueberries, strawberries, all that kind of stuff — because of the skins. You couldn’t have anything with skins. You had to be very careful. No salads that weren’t triple washed. All of that for 100 days.

Then I had to go for head and neck radiation.

Head and neck radiation

At MD Anderson — even some people from Sloan Kettering because I had relapsed late but had pretty much all been in my neck and even in my nasopharynx — they want to do something called consolidate the bone marrow transplant. Because I was young and healthy, they treated me extremely aggressively. Not everyone would be treated like this, but they wanted to save my life and I agreed.

Robyn S. Aug 2015 radiation therapy head mold

They said that if I had the head and neck radiation, it would increase my chance of survival up to 5%. My chance of remission after [a] bone marrow transplant was only about 35%. With the head and neck radiation, they said it might increase to 37 or 40. It was our decision to proceed. I followed the recommendation of all of the physicians.

Head and neck radiation is two thumbs down. It’s not fun but you just do what you have to do. I have a lot of friends who’ve had head and neck cancer and they’ve had to experience this.

Most just choose to have something called IMRT, which is a focused radiation therapy, where they actually, in my case, were focusing on where I’d relapsed on the side of my neck and my nasopharynx. They can control the beams to a certain extent, but there is something called scatter radiation. No matter what, even though it’s controlled beams, you’re going to get some scatter and some other side effects.

They make a mold of your head. It looks unbelievable. You lay on the table, they literally screw you down to the table so you won’t move, then they do the radiation. For lymphoma, they usually use a dose of about 30 to 35 gray. Meanwhile, with head and neck cancer, they use double that dose, 70, 75 gray.

I literally survived on smoothies for about four months after [radiation].

Side effects of radiation

Head and neck radiation is very difficult. From my radiation, I was supposed to have very few side effects because it was only over [the neck area]. But unfortunately, I had a lot of side effects.

I had mouth ulcers. I couldn’t swallow solid food for almost five months after having had radiation.

It affected my salivary glands. I just couldn’t swallow. It was very difficult to eat anything.

I literally survived on smoothies for about four months after that and I was supposed to get 36 treatments. I ended up getting 30. They just titrated it down because I had so many symptoms.

The other thing is because of the scatter radiation, it got part of the base of my brain and I developed worse nausea than I’d had through any chemo. Vomited all the time. It was terrible. But again, I did what was recommended. I got the minimum dose for consolidation and I just thought I could take it. I tried to be positive and I made a real effort.

This is the other thing: to eat protein and try to keep my weight up the best I could. To give you an example, I started with a BMI of 22. By the end of radiation, I think I was down to 15, 14, about 103 pounds. That’s really skinny for me.

I think [the intense side effects were] an outlier situation. Medicine is difficult. The people doing my therapy were also my friends and they actually wanted me to get this treatment. I wonder sometimes in the nicest way whether they didn’t tell me about everything or maybe I didn’t hear. I only heard what I wanted to hear, which sometimes happens as a patient. But I know some of the things, especially nausea, was an unusual side effect.

I went back to work three months after my bone marrow transplant, just a week after radiation. I would go [get a smoothie] in the morning. I’d get one of these massive things with protein powder and I would just take it to work.

I don’t think it’s the most healthy thing and there’s going to be someone [going], “Oh, there’s too much sugar.” At this point, I needed calories. I would have some protein, and I could drink that all day long.

Managing the side effects of radiation

I did get an alternative therapy. I had acupuncture. [There have] been some studies [where] if you have acupuncture in your salivary gland, it helps promote the return of your salivary gland function. I think it helped. It didn’t hurt. It was uncomfortable but I was willing to do whatever I could to return to a normal life.

I also kept walking. I wasn’t able to do much physically at first, but I would walk around one block, then I would walk a mile. I’d walk two miles, three miles. I gradually worked up to that to try to maintain my muscle mass and my functionality. It was a determination for sure.

I had relapsed. Lymphoma was back nine months after therapy and I really didn’t have that many choices.

Robyn S. April 2016 enlarged lymph node

Second relapse

I went on a vacation with my youngest child as he was graduating from high school. While we were on that vacation, I felt another enlarged lymph node. It was actually under [the jaw]. I knew I had relapsed.

I immediately went to my oncologist up at the center where I had the bone marrow transplant. My husband was with me. I had a PET/CT. I stepped off the table, looked at the PET/CT, and knew I’d relapsed. Not only was this hot, [but] I [also] had something in my armpit and now I had something in my right groin, a big lymph node.

I had relapsed. Lymphoma was back nine months after therapy and I really didn’t have that many choices. I would say three times is not a charm for lymphoma.

The interesting thing is my oncologist looked at me and goes, “Hey, you’ll have an allogeneic transplant. You’re Caucasian, it’s not going to be a problem. You’re going to have a match.”

As it turns out, I’m actually multi-ethnic — given my heritage and how you just don’t know by looking at somebody — and, of course, I had no matches. No one [is] even close and I have no siblings.

I didn’t want to have an allogeneic transplant anyway. I had been doing some research online and I initially wanted to have some killer T cells or something instead of stem cell, but there was nothing available.

Differing treatment recommendations

My bone marrow transplant guy wanted me to have a bone marrow transplant and I don’t want to do that. CAR T is so new. This transplant physician, who’s actually very famous, said, “Look, you’re young, you’re healthy, you survived. You’ll do fine.” I said, “This was the worst experience. I don’t know if I’m going to survive. I don’t want to do this again.”

I had another friend who was very experienced say you shouldn’t do this. I have a friend who’s an oncologist, he’s about 15 years younger than I am, [who] said, “Hey, this is pretty good stuff. I think you’ll do well with this.”

Treatment

CAR T-cell therapy trial

Now there was something called CAR T-cell therapy and I had seen that online. I went on www.clinicaltrials.gov and we started researching trials for CAR T. I found one phase, one trial with something called the JULIET trial, phase one, where they had 25 patients and 12 had survived and got into remission. That was probably the best odds that I would ever have. I wouldn’t have [that] kind of odds with an allogeneic transplant.

We started looking for phase two trials for the JULIET trial, but also for the Kite trial, and for Juno. There were two other products and we started searching for those trials.

I had to do all the research myself and this is [what] I want to really stress. I had no advantage here, no connections. All we did was get online. My husband and I went on this clinicaltrials.gov site. We emailed every single center that was doing CAR T. We called them and we started looking. We’re trying to find a space.

I had a little blurb. I put my history in about three paragraphs because I knew I qualified for everything. I had no comorbidities. I just had lymphoma and nothing else wrong with me, so that’s perfect for a clinical trial. They don’t want to have any of the mitigating factors. They want to see just how the trial works, which is what they want for these trials. That’s why people are excluded from trials because they don’t want to muddy up all of the info when you have so many other conditions.

To make a long story short, a space opened up literally. We found out about the space on a Wednesday, I flew to the center — which was actually in Ohio, I live in North Carolina — on Monday. We signed paperwork to agree to do the trial. I was accepted.

Within the next week, I came over and they did something called apheresis where they filtered out my T cells, just like you’d filter out stem cells. They put a catheter in one arm then they put it through this machine. They filter out T cells and return the cells back to your body. Then they sent the T cells out to be modified.

The cool thing about CAR T-cell therapy is it’s your own immune system… This way, you actually modify someone’s own immune system to fight cancer, which is really brilliant.

Robyn S. 2017 Bora Bora
How CAR T-cell therapy works

CAR T is really amazing. The patient’s T cells are removed from the patient with apheresis. They’re filtered out. Think of these little T cells as little Pac-Man and in these little cells, you take a viral vector — it’s like a deactivated virus — you insert a protein onto the top of that cell. That little Pac-Man binds to whatever that protein is on another cell and gobbles it up or blows it up, whichever way you want to look at it.

When you have lymphoma, the protein is called CD19 but then other lymphomas have a CD30. There are some leukemias and lymphomas that have a CD20 or 22. Now there are trials for solid tumors, like HER2-positive breast cancer. HER2 is a certain protein that these breast cancer cells carry and so they can make a CAR T to fight HER2-positive breast cancer.

The cool thing about CAR T-cell therapy is it’s your own immune system. Right now, our standard chemo treatment for cancer is actually really barbaric. You either poison it, you cut it, or you burn it — that’s the way we treat cancer. This way, you actually modify someone’s own immune system to fight cancer, which is really brilliant.

The T cells can cross the blood-brain barrier. What’s so important is that there are certain tumors that have brain metastases, like lymphoma. A lot of people get lymphoma and it spreads to the brain. This can actually cross that and treat it in the brain. It can treat metastatic breast cancer [in] the brain. They’re using it for all sorts of other things.

Clinical trial paperwork

I did not read every single paper. We went over some of the guidelines. We went over the requirements and this is actually standard for T-cell. I had to be within 30 minutes of the institution. I had to go back for follow-ups. This was a series of things I had to do and I agreed with that.

I knew the results of the phase one clinical trial and this was the phase two trial. The investigator shared phase one. We went over side effects and a lot of that was just one on one.

This investigator, who is a very young investigator, she’s very pro-CAR T. I remember her looking at me and saying, “You are the perfect candidate for this. You’re healthy, your bone marrow is good. You just happen to have lymphoma.”

Costs of joining a clinical trial

Each trial is different. My trial covered the actual drugs and any medical treatment related to my therapy but did not cover the cost to get into the trial, which meant another bone marrow biopsy, some other CT scans, lodging, any kind of lost work, or the caregiver.

My husband, at that point, was not working so he was able to go up with me. We got a VRBO flat and we stayed there. It was very economical that way. People bring that up and some of the trials will pay for that, some of them won’t. Insurance companies will usually pay for lodging for a family member and the patient around a bone marrow transplant, but not for a clinical trial, in my experience.

A lot of this is based on some type of your own financing. With us, we had to finance the car, the VRBO, the caregiver, my food, and then my insurance company covered some of the initial testing, which would have had to be done anyway if I was going to have an allogeneic transplant.

Robyn S. July 2016 on Ibrutinib waiting for cells
Bridge chemotherapy

The problem was I was in a clinical trial and so there was a delay for those cells. Then my lymphoma started growing. They did something called bridge chemotherapy.

I had an off-label treatment for lymphoma called Ibrutinib, which had shown effectiveness in diffuse large B-cell ABC subtype. Turned out, that worked beautifully. It put me in remission. These are chemo pills you take. It was so much easier than anything I’d done.

Waiting for the T cells

We waited for my cells to be ready. There was a little glitch because I made too many cells. The FDA didn’t like that I had too many cells, so they wouldn’t filter them off. I had to get FDA-approved just to have my own cells back. I had my cells out in May and then I was scheduled to have them infused in September of 2016.

Cytokine release syndrome

Once these T cells are altered, they’re cultured in the lab, and then they’re infused in the patient. The T cells go around, bind to the tumor, and blow all these little tumor balls up but that actually can cause a response by your immune system called cytokine release syndrome.

It’s similar to some of the people’s reactions to COVID. We’ve actually seen people with COVID pneumonia that get these horrible infiltrates in their lungs. It’s more of a reaction to the virus and the cytokine reaction as opposed to the infection. It’s very similar. They were trying some of the same treatments for COVID that they use in cytokine release syndrome for CAR T.

With CAR T cytokine release syndrome, some people get it, some people don’t. [For] most people, it’s very mild and transitory. It’s not permanent. It just is an immediate reaction and then it goes away.

My T cells were infused in September of 2016. The infusion lasted 10 minutes. I had 600 million cells in this big bag. Everyone clapped when they were infused and then they waited. What’s going to happen?

Within 24 hours, I started getting a fever. I was told if I was going to [have a] fever [to] go back to the hospital. It got up to over 104 [degrees]. I had low blood pressure, shaking chills, [and] felt terrible for three days.

Because it was a trial, they didn’t give me anything for it. I only got Tylenol. They give you things for this now that I didn’t get, but it went away.

I would have six months to live, without therapy. Here I am, almost six years out. It’s amazing.

Robyn S. 2018 Cooper River Bridge Run

Remission

By the time I was discharged from the hospital, my lymph nodes had gone. They’d melted like ice cubes. They were completely gone. I was in remission — clinically, not with a PET scan — within one week of getting CAR T. Just amazing.

I felt fine. I was just tired [and] a little nauseous. The fatigue was there but nothing like [a] bone marrow transplant. It was nothing. I’m enjoying the gym two weeks into it. It was great. I went back to work four weeks after CAR T-cell therapy. I only went part-time at first and then I gradually went up to full-time.

Here I am, almost six years out. It’s amazing.

I would have six months to live. Without therapy, on average, you have six months to live. Now, if I’d taken some steroids or had an allogeneic, I might have had another chance to live. But the problem with [the] allogeneic transplant, again, I had no match, which means I’m not going to do well. Now some people do okay, but without a match, people don’t do as well.

When you get to the point where you’re getting CAR T, you don’t really have a whole lot of other choices.

Robyn S. 2018 Patagonia

Post-CAR T-cell therapy

When you compare it to how sick I was after [the] stem cell transplant, I just couldn’t eat for so long. I felt terrible. I felt fine after CAR T.

One thing after CAR T is I’m immunodeficient because the T cells destroy all my B cells — the cancer B cells and my normal B cells.

I’ve had to be very careful about infections like MRSA or CRE. All of these antibiotic-resistant organisms are the ones I stay away from. I had to change my practice because I was doing a lot of hospital care. Now I’m all doing outpatient just to be careful.

CAR T works in lymphoma about 40% of the time but not 100% of the time. They’re working on improving it. [For] those people who fail CAR T, a lot of them would go on to an allogeneic transplant. Hopefully, not me now.

I have been given a second chance at life and it’s an unusual experience for everyone. I cherish it and I enjoy every minute. I’m very, very grateful for medical research and all the doctors, caregivers, my friends, and everyone who’s really helped us along with this. It’s just really special.

It’s interesting because CAR T’s a new therapy. Everyone’s very nervous about cytokine release syndrome [and] all these side effects, but they don’t really think about the side effects [of a] stem cell transplant, which are much worse.

Stem cell transplant, [an] allogeneic transplant, has a 10 to 20% mortality rate just from having the transplant. CAR T almost has a 0% mortality rate. A lot of people can get neurotoxicity with this where you’re confused for days. [The] majority of people get totally better. I really don’t know of any other ones that haven’t gotten better.

When you get to the point where you’re getting CAR T, you don’t really have a whole lot of other choices. Right now, CAR T is being used as a second-line therapy ahead of stem cell transplant, which I think is awesome. Some people are very nervous about that but they need to really research what the stem cell transplant side effects are as well as CAR T because it’s a new treatment. Everyone gets very nervous about that. I get it.

Robyn S. Aug 2020 arches

Words of advice

Looking for clinical trials

I still think the [ClinicalTrials.gov] website is pretty straightforward because you put your diagnosis in and you just have to look at trial after trial.

If you have blood cancer, Leukemia & Lymphoma Society is very helpful. They have Lymphoma Research Foundation as nurse navigators. Multiple myeloma, there’s something called SparkCures, I believe.

Right now, they have CAR T-cell trials for solid tumors, for immunologic deficiencies, and some of those organizations have their own nurse navigators or people who can help with advice. I just think you have to be your own advocate and start calling everywhere.

Bone marrow registry

Everyone should get on the bone marrow registry, that’s my big plug because there [are] a lot of us out there that are multiethnic, so we need a lot of people on the registry. I just didn’t really have a chance.

Mental health support

Any time you have a life-threatening situation, whether it’s cancer or any other disease, you need to use any ancillary help you can. I’m a big believer in integrative medicine as well as standard Western medicine.

[With] integrative medicine, there’s a role for psychotherapy. It’s really important [for] anybody who’s gone through a life-threatening event. People in the military who’ve almost died, a lot of them get PTSD. I think all cancer patients get a form of PTSD. It’s important for a lot of patients to talk to therapists. I’m all for that. I certainly did that after my bone marrow transplant. It was very traumatic for a while, but luckily, it was helpful.

I also recommend talking to nutritionists. I’m against any type of major extreme diet. They’re not necessarily helpful for you. It’s amazing when you talk to nutritionists [about] how you can improve the way you feel.

I’m also a big believer in exercise. A lot of that you can do on your own. Just walking and being outside is really important and it’s amazing what the health benefits of that are. I think it’s really true. Eat right and exercise. There is a lot of role for that. It’s simple but true.

Robyn S. 2021 Maine

Role as a physician-patient

My biggest contribution to medicine is probably not as a physician but as a patient and that’s okay. I’m good with that.

I’m so happy to be able to help others. This is what I’ve done my whole life. I wanted to become a doctor since I was five. I’ve spent my life as a physician trying to help patients and here I am able to help them in a different kind of way. I think it’s been a lot more impactful and it’s going to affect the way that cancer is treated from now on.

This is the future. The immunotherapies are the future of cancer therapy and, as it turns out, even some therapies for autoimmune diseases. It’s a whole new world out there and I’m very optimistic.

Before I had cancer, I was pretty empathetic. Now, I am even more empathetic. My practice right now does involve a lot of [mammographies] where I see patients every day. I diagnose breast cancer every day. I see patients who’ve had breast cancer.

I see patients who are in the middle of chemotherapy and I can really chat with them. In some cases, I give them advice about going to tertiary care centers [or] integrative cancer therapy centers. They may not have heard of that. They may have just been moved here. I’m always happy to offer that because it is a service the hospital offers.

I also just hold their hand and talk to them about losing their hair, having it grow back in, how weird that is, and can joke about some things. It’s nice. We have a special bond, some of the cancer patients and myself. I think it’s great for them and it certainly helps me. It’s a win-win situation.


Robyn S. profile
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Diffuse Large B-Cell Lymphoma (DLBCL) Stories

Robyn S. profile

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



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

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



1st Symptoms: Abdomen and gastric pain



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

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



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



Treatment: Chemotherapy R-CHOP and methotrexate

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



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

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



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

Shahzad's CAR T Story



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

Erin R., DLBCL & Burkitt Lymphoma, Stage 4



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

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



1st Symptoms: Pain in left knee
Treatment: R-CHOP chemo (6 cycles), high-dose methotrexate chemo (3 cycles)
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Categories
Acute Lymphoblastic Leukemia (ALL) blinatumomab (BLINCYTO) Cancers Chemotherapy Compazine cytarabine dexamethasone Doxil (doxorubicin) Hyper-CVAD Leukemia methotrexate PICC line prednisone rituximab (Rituxan) Stem cell transplant vincristine

Renata’s Philadelphia chromosome-positive B-Cell Acute Lymphoblastic Leukemia Story

Renata’s Philadelphia chromosome-positive B-Cell Acute Lymphoblastic Leukemia Story

Renata R. profile

Renata was diagnosed with B-Cell Acute Lymphoblastic Leukemia, Philadelphia chromosome-positive (Ph+ ALL) shortly after finding out that she was pregnant.

She shares how tricky it was to be undergoing treatment while carrying their first child, giving birth via emergency C-section, and now waiting for her stem cell transplant.

  • Name: Renata R.
  • Diagnosis:
    • B-Cell Acute Lymphoblastic Leukemia
    • Philadelphia chromosome-positive
  • Initial Signs: Fatigue, shortness of breath, nausea, fevers, night sweats
  • Treatment:
    • Immunotherapy: Blincyto
    • Chemotherapy: Hyper-CVAD (Cytarabine, Vincristine, Doxorubicin, and Dexamethasone)
    • TKI: Nilotinib
    • Stem cell transplant (tentatively scheduled for July 2022)

When you feel that urge to quit, you have to have something to hold on to, something to look forward to in the future.

Renata R. timeline


I had this feeling, even when I found out that I was pregnant, that something wasn’t right. It was just this weird, foreboding experience.

Renata R. research scientist

Pre-Diagnosis

Tell us about yourself

I live in New Jersey. I work as a research scientist in bioanalysis. In my spare time, before cancer, I was really into working out, jogging, traveling, [and] just living life. I do a lot of things. I like to go out with my friends. That was pretty much my life before cancer.

Initial symptoms

Around the end of February [2021], I started to get tired. Symptoms like fatigue. I thought maybe [I’d] been working too much. I also became short of breath a few weeks later.

Renata R. baby ultrasoundOn March 4th, I found out that I was pregnant, so that kind of put everything together. But I had this feeling, even when I found out that I was pregnant, that something wasn’t right. I couldn’t put my finger on it but it was just this weird, foreboding experience. I think that was due to fatigue.

My body was just out of it. I kept telling my OB-GYN I’m having nausea [and] fevers, what’s going on? I got diagnosed with [an] ear infection once.

I remember, one night, saying to my husband, “I feel like I’m dying.”

They put me on anti-nausea medication and it didn’t seem to help. It just got worse. I didn’t know pregnancy was this bad. I got to the point where — usually I walk my dog every day — I was out of breath walking him.

My work suffered because I could not concentrate and I was tired all the time. It just snowballed. It just got worse and worse. I chalked it up as just pregnancy.

I remember, one night, saying to my husband, “I feel like I’m dying.” He probably thought I was being a little melodramatic but that’s how I felt.

I was just so tired and I couldn’t get enough rest. Even if I would sleep 10 hours, it felt like I didn’t sleep at all. I would have night sweats, but I attributed that to the pregnancy hormones.

Testing

Initial tests

I didn’t find out until I went to my OB-GYN. You know how they do a whole battery of tests? They took 15 [to] 20 vials of blood. The next day, they called me back. It was a very weird conversation.

The nurse [said], “Your white blood count came back high and we can’t deal with that here.” It was just the way she said it and her voice, it kind of told me that something wasn’t right. She said it should be, I think, 4 to 11. Mine [was] 37.8.

Renata R. diagnosis

While I’m talking to her, my primary doctor calls and [said], “Renata, I just got a call from your OB-GYN.” At the time, I didn’t have time to Google anything because I wanted to Google what is this? The doctor [said], “You need to go to the hospital. I’m going to call a hematologist.”

Hematologists, I know what they do, like blood disorder. “Could this be an autoimmune disease? Maybe I have lupus?” And he [said], “No, I don’t think it’s that, but we’ll call you back.” He called back and he was like, “Go to the E.R. in Philadelphia,” and I’m an hour from Philadelphia.

Diagnosis

Getting the official diagnosis

As we drove there, I did Google “high white blood count.” The first thing that came up was leukemia. But I said, “I know I don’t have leukemia, so I’m not worried.”

They redid the test at the hospital and it confirmed that it was high. That night, I had a doctor come in and it was just like in a movie. She sat next to my bed and I’m [wondering] what is she about to tell me.

She [said], “You have some type of blood cancer.” I couldn’t believe it. I said, “No. I’m pregnant.” And she’s like, “Yeah, you have some type of blood cancer. You’re going to meet with an oncologist.” I was in shock. I met with the oncologist and my oncologist was phenomenal

Reaction to the diagnosis

Disbelief because [with] cancer, I think the statistics are [that] 40% of us will get it. I know that. But I felt that I took care of myself. I didn’t eat red meat. All of the things that they say help you to stay healthy. That went through my mind. I did this and that, I don’t smoke. I can’t have blood cancer. I didn’t believe it. I just couldn’t connect.

I’ve never felt that feeling before and I never want to feel it again. I don’t think that I cried because I just stared at her, “Are you serious?” It was just disbelief and panic a little because of the baby.

I didn’t want to think too much about it because I didn’t believe the diagnosis. [I was] ten and a half weeks [at that point].

Renata R. and husband

I took care of myself. All of the things that they say help you to stay healthy. I didn’t believe it. I just couldn’t connect.

Meeting the oncologist

One of the first questions: was this a planned and wanted pregnancy. I didn’t realize the significance of that at the time. I [said], “Yes, no question. Yes.” She [said], “We’re going to consult with maternal-fetal medicine and we’re going to see what we can do.”

At that time, she told me that I had B-Cell ALL. She did not know at the time if I had the Philadelphia chromosome or not so she wouldn’t know that result until the next day.

The next day, she told me I did have the Philadelphia chromosome.

[My oncologist] told me that 25% of patients get it. She said it makes it harder to treat and it makes it a high risk for relapse. I was still in disbelief.

Finding the right oncologist

The nurse told me who my attending doctor would be. I Googled the doctor and I read her reviews. She’s a pretty good doctor. Then once I talked to her, it was almost like she was a friend. She fit me well.

When I read the reviews, I saw what type of cancer she treated and she’s also a professor at Thomas Jefferson University; that was a plus, too. I think the biggest thing was how many years she’s been in practice.

The bedside manner, [with] a few other oncologists that worked in the same group, I didn’t get that same feeling. I just got the feeling that she really cared.

It was a very tricky situation, to be completely honest. It would have been easier to treat me if I weren’t pregnant, if I had decided to terminate.

One doctor told me, ‘We’d rather wait to start chemo when you’re in the second trimester. But we talked to oncology and they said you would not make it that long.’

Renata R. pregnant

Cancer and pregnancy

Working with maternal-fetal medicine

I met with maternal-fetal medicine and they were phenomenal as well. One doctor told me, “We’d rather wait to start chemo when you’re in the second trimester. But we talked to oncology and they said you would not make it that long.”

That was another moment I’ll never forget because I was potentially weeks away from dying. It was just crushing. I don’t think I’ll ever forget that moment because it made it real.

It also made me say, “Okay, what do we have to do? Because I have a baby and we need to get across this finish line.” I’m a very straightforward person because I have an experience in that field. I’m not a doctor or anything. I understand a lot of what they’re saying. Sometimes that’s not such a good thing because sometimes it’s too much.

She told me, “We’re going to do everything that we can to get you and the baby through this pregnancy.” They work very well with oncology. They had meetings. She said, “We talk about you every day. We’re trying to make up the best plan for you.” [Those were] the scariest moments of my life.

I have a baby and we need to get across this finish line.

Discussing treatment plan with your partner

They gave me statistics and I knew that I would be harder to treat because I’m pregnant. They assured me that they believed that they could get me through this pregnancy.

My husband was there as we were discussing this. He and I didn’t have to talk because he knew that we wanted the same thing. We planned this baby. This is our first child. I said I want to carry.

The tough thing was there was a risk. They wanted to wait until I was in the second trimester because there’s a risk of bleeding to death, of a spontaneous miscarriage, in the first trimester.

I couldn’t wait [so] they were able to put me on steroids that calmed the cancer down until I got to the second trimester. My husband and I knew that because this is acute cancer, it’s fast-moving [and] you can’t wait.

Renata R. heart Jeremiah 29-11

My son pretty much saved my life. As long as I can get through this, then I want him with me.

You didn’t want to explain this to people. Especially now, this is a big thing. But if I had got to that point where I couldn’t continue the pregnancy… I’m glad that at the time, I had the option to say, yes, I want to or no.

I remember the doctors telling me I had up to 24 weeks to terminate and that just stayed on my mind a lot. They were just doing their job but my husband and I were on the same page because my son pretty much saved my life.

As long as I can get through this, then I want him with me. I know it would be easier if he wasn’t, but no. And I had this faith that he was going to be completely okay. I was afraid, but I just knew that he would be fine because I felt that I was doing the right thing for both of us at that time.

Giving birth prematurely

I was due in November, but I got to 32 and a half weeks. What happened was I ended up getting meningitis. My port got infected so I got meningitis and I was sick. His fetal heart rate dropped.

Everything [happened] at exactly the right time to make sure that he was here. There was a nurse in oncology who had the sense to call the OB-GYN. They rushed me upstairs. I had to have an emergency C-section. They couldn’t find his heartbeat for a couple of minutes.

I had this faith that he was going to be completely okay. I felt that I was doing the right thing for both of us at that time.

I’m just laying there and I’m in shock again but still feeling that he’s going to make it through the pregnancy. I’m not going to say it was an easy pregnancy but he met every milestone. He was growing at the right rate. He was perfect.

Renata R. Michael in NICU

There was guilt on my part because I’m like, this is my fault because I have meningitis and now, he has to be born prematurely but he was completely healthy. They got him out. I think I went into the E.R. at 12:09. He was out by 12:33. He was 3 pounds, 8 ounces. Completely healthy.

You know how they said there’s a pot of gold at the end of the rainbow? That was my pot of gold.

He stayed in the NICU for 37 days. That was hard. But now I realize it was almost for the best because I was very sick then, too. I was in and out of the hospital myself. I was neutropenic. I wouldn’t have been able to take care of him.

Now, he’s nine months. He’s met every milestone. He’s perfect and it’s through all of the worst. You know how they said there’s a pot of gold at the end of the rainbow? That was my pot of gold. I forgot that I had cancer. I know all mothers feel that way, but it was just different.

Listen to what the oncologist and the maternal-fetal medicine say because sometimes, it’s the difference [between] life and death.

Support from family and friends

Be honest and upfront. They came to me after the fact. One person thought that maybe I had to terminate the pregnancy. Most people mean well but that’s not helpful to new mothers that went through that. If you can’t be positive, then don’t say anything at all. That’s usually the best thing.

Renata R. PICC line

Treatment plan

Sometimes Dexamethasone works, sometimes it doesn’t. But it worked just as she hoped for me. I did it for two weeks and then I checked back into the hospital for them to place my PICC line and start the Hyper-CVAD.

I was taking 40 milligrams [once a day for two weeks]. I got the munchies, but I felt better than I had felt in months because, for the past few months, I’ve been declining. I was able to walk the dog. It was almost scary because I didn’t feel like I was sick and that feeling is tricky because when I had to check into the hospital, I don’t feel bad.

My blast had gotten down to maybe 32 or something and I think they were at 82. So [the Dexamethasone] did take it down significantly.

Pre-chemotherapy scans

They did a bone marrow biopsy. They did the lumbar puncture but they had a hard time doing it. I have a rod in my back, so I had to get an Ommaya reservoir put into my scalp. It’s a little reservoir that goes right into your scalp and they can actually access your spinal fluid. So instead of getting the puncture, they would do it here. It was totally painless. When they would do it, it was painless, but 10 minutes later, I was just really, really sick.

[It’s] a one-time surgery where they put it in and usually, they keep it in for life. Mine got infected, so they took it out seven months later. I had that done so I didn’t need the lumbar punctures.

They also did an echo of my heart. They did CT scans just for a baseline before they started the chemo.

Renata R. reservoir
Chemotherapy

[My treatment plan] was altered. They omitted Methotrexate because that’s known to cause fetal issues with the baby.

Also my TKI for the Philadelphia chromosome, they wanted to put me on Ponatinib, but that was known to cause fetal defects. They tried me on Nilotinib. The data was mixed for that particular drug but at that point, I had to get on a TKI for the chromosome.

The Hyper-CVAD was divided into two parts, part A and part B. Part A, you got four drugs. Cytarabine, Dexamethasone, Vincristine, and Doxorubicin. Usually, it would be four nights in the hospital because you would get the Cytarabine every 12 hours. The B part would just be Cytarabine, but it would be a higher dose [of] Cytarabine.

I would be in the hospital for three days now at both A and B cycles. They checked my spinal fluid. I got chemo [through the reservoir], too. Each time, they had to do that.

Chemo was the hardest part. I believe that was Cytarabine, too, that I would get so sick 10 minutes after they would give it to me because I was just pregnant.

They would puncture [the reservoir] with a butterfly [needle], like what they would use to take blood. Then they would put a syringe on the end to take out some of the CSF. Then they would have a little syringe and they would push the Cytarabine through.

They took the CSF and gave the chemo [through the reservoir]… to ensure that the leukemia cells don’t go to my spinal fluid. Leukemia actually hides there a lot. They didn’t find any there, but they just want to make sure each cycle that it’s clean and get the Cytarabine in hopes that it doesn’t spread there.

You get a three-week break [in between part A and part B]. Sometimes that could extend if your counts didn’t bounce back. But for me, I was on time, luckily, each schedule. I was supposed to do it eight [times], but I had the baby that’s why I only did seven.

I [also] did Rituxan [at the same time]. I did eight cycles of that and that was pretty simple. You would just go to the infusion center. It took about 3 hours.

Renata R. hair loss
Side effects of chemotherapy

When they first gave me [the Rituxan], I had an allergic reaction to it. I started having an asthma attack. They jumped into action [so] I was fine. Each time I would go — and I think that one was once every 21 days — they would give me Benadryl before they would start.

Hair loss, that one hit. I think I started chemo [on] May 5th. By about May 19th, my hair started coming out. I had my husband give me a buzz cut and probably by June 1st, most of my hair was gone. A few of the drugs caused that hair loss. It wasn’t just one for that.

I do know that the Cytarabine, the main thing was fevers. I would get fevers every single cycle. Sometimes I would end up back in the hospital because I had a fever and they thought it was an infection, but it was from the Cytarabine.

The fatigue was pretty bad but again, I was pregnant, so I don’t know how much was from the pregnancy and how much was from cancer. I noticed during the B cycles, the high-dose Cytarabine made the fatigue worse. So Cytarabine for me was tough.

I had food aversions. I didn’t have an appetite. I think that was a combination of the drugs, too. It was tricky for me because I started losing weight, but I was pregnant. One month, I lost 20 pounds and it was hard to balance. I have to eat because I have a baby, too. They actually gave me medicine to help with my appetite.

Brain fog. When I think about that whole experience, it’s almost like a fog because everything went by. I couldn’t remember things. I had to set alarms to take my pills. That was tough, too. I actually had thought about working. I was working from home while I was going through this therapy. I’m so glad I did not because I couldn’t think.

Joint pain. I also had a lot of joint pain. That actually may have come from the Nilotinib but because I was pregnant, I couldn’t take anything. They gave me a low-dose Oxycodone. The joint pain was a big one.

Vincristine gave me neuropathy but the doctor put me on Lyrica and that cleared it up completely. Lyrica definitely helps for the neuropathy.

With nausea, Compazine definitely helped me. I also use these anti-nausea patches behind my ears; that helped a lot. Zofran helped too, but it gave me headaches.

Renata R. Blincyto immunotherapy
Immunotherapy

I finished active chemo in October. I had a bone marrow biopsy done in November. I was MRD negative [and] in the clear. [With] the Philadelphia chromosome, my BCR-ABL levels were at zero. But my doctor wanted to do blood tests every month to check those levels to make sure.

The first month was fine. Around Christmas, the nurse calls me. “Your BCR-ABL levels came back elevated. It’s 0.02.” We thought it was because we lowered my dose. We cut it in half from 30 to 15. My oncologist did not believe it was from that. She thought that it was coming back. But I said, “Can we increase the dose and maybe it’ll go down again?” We did that the next month. That was 0.01.

I have a conversation with my oncologist and [she said], “For long-term survival, this needs to be negative. If this comes back positive again, you’re going to need a stem cell transplant.” [It] was really devastating to know that the treatment, as much as we tried, wasn’t enough.

All of January and February were just stressful because I’m waiting for these test results to come back. After 0.01 in January, February [was] the big month. This has to be negative. It comes back at 0.153, so it increased. When I saw those numbers, I knew that I would be getting a stem cell transplant. My oncologist [said], “We need to get rid of that trace amount so I’m going to put you on Blincyto.”

I started Blincyto, the immunotherapy drug, the [following] week. That was originally supposed to be a three-day stay, but I actually stayed for five because I had an adverse reaction. My liver enzymes were off the charts. I had really high fevers [and] joint pain. It was so bad. They had to give me Dilaudid to calm the pain. We thought this would be an easier treatment because she said most people tolerate it well. I didn’t tolerate it well at all.

[It] was really devastating to know that the treatment, as much as we tried, wasn’t enough.

Renata R. face mask

Stem cell transplant

Getting the news

It was really tough. I never thought about dying before. But seeing those numbers, everything kind of flashed through my head. I went through so much and it wasn’t enough.

I knew there was no doubt that I’m going to get the transplant. I asked my doctor, “If I don’t get the transplant — and let’s just say the Blincyto gets rid of it — what are my chances of being cured?” She said zero. Not 50%. It would come back eventually and I wouldn’t live a long life.

As soon as she said that, I thought about my son. I have to do it. The main thing was knowing that I was going to be away from my son. I’ll be away from him, but it’ll be worth it because I’ll be able to be with him. That was really hard.

Also just the fear of the unknown. I’ve heard horror stories about stem cell transplants and all of this just kind of flashed through my mind when I saw those numbers. That’s why I said sometimes it’s a gift and a curse to understand things because I actually saw the numbers before my oncologist did. I saw the results and I knew what she was going to say that it was time to switch to a different treatment, to go more aggressive.

I thought it would be easier because I know what chemo felt like but it’s not because I know how bad chemo was for me.

I spent so much time researching outcomes. We, as humans, try to find a way out. We want to make this easier. Maybe there’s a treatment, maybe there’s this. But everything that my oncologist was doing, that was the latest, that was what should be done, so I knew that there was no way around this. I just have to go through it again. It took a while.

To me, it might have been more devastating than my original or just as devastating as the original diagnosis. I thought it would be easier because I know what chemo felt like but it’s not because I know how bad chemo was for me. You think about that and it’s tough.

It’s really hard to keep your mind focused on something other than that. But for me, I still keep my focus on Michael. He’s trying to crawl now. In a couple of years, I want to get him T-ball and things like that. I think about that and I said, “Okay, let’s do this.”

Renata R. and Michael

It’s been an uphill battle from February till now because I’m actually allergic to the Blincyto so my eosinophils have been really, really high. I’ve been having asthma symptoms. I haven’t been able to breathe for weeks but Blincyto’s saving my life right now. It’s a risk versus benefit thing. But it takes a lot out of me.

I’m fatigued. Sometimes it’s hard to take care of the baby. I actually went back to work and I had to stop because it was too much. Now we’re just waiting for the stem cell.

Blincyto was the latest and the best. We hoped [there] would be no side effects but sometimes you get the long end of the stick.

Preparing for allogeneic stem cell transplant

[Depending] on how my numbers rebound, my doctor told me to expect to be in the hospital [for] 4 to 6 weeks. There’s a week before you get the cells and then you have to stay until your counts recover.

[For] the first 100 days, I need to isolate [myself] because I’m going to pretty much be like a newborn baby. I’ll get to see Michael within that time because luckily, he doesn’t go to daycare.

We’re going to stay in Philadelphia for a month so that we’re close to the hospital. I probably won’t get to see him at all then, which is tough.

I’m going to go through intensive chemo and full-body radiation. [Radiation is] for four days then the chemo is for three days. They’re going to completely wipe out my immune system.

I’m going to get the cells from my brother and hope that I don’t run into graft versus host disease (GvHD). My brother’s actually a half match so I believe I’m going to have chemo a few days after the transplant, too.

My transplant specialist, she’s amazing. She’s been very positive about the experience. She’s told me I definitely would get diarrhea [and] I’ll probably have nausea. But she told me, “If you got through being pregnant and chemo, I’m not worried about you.”

Statistically, 30% of transplant patients don’t make it through the first year. But reading [the] literature, I found that most of those people are older people with pre-existing conditions, which is why before you get the transplant, you have to get so many tests to make sure that you’re fit for it.

We automatically assume because I’m relatively young that I’m fit for it. They did an echocardiogram of my heart and found that my ejection fraction had dropped from 65% to 45% within the year. I saw a cardiologist. He said he didn’t think it was from chemo. He thinks it was from the pregnancy. I had to get more tests done on my heart.

Then you have to go and do a pulmonary test. I failed that and that’s because I’m on Blincyto and I’m allergic to the Blincyto so it’s hard for me to breathe.

I was actually supposed to get this transplant [on] June 13th but because of the heart issue and the lung issue, everything has gotten pushed. That actually scared me because I know I need this transplant.

They did another echocardiogram of my heart and the ejection fraction is back up to 62%. I have my pulmonary function test again, so hopefully, I’ll pass that.

[They also make you take a] mammogram. You have to get a pap smear. Anything that you can think of, they make you do it.

Renata R. dental work

I’ve only had one cavity in my whole life. After chemo, you have to get clearance from a dentist. I couldn’t get clearance because I needed two root canals and I had three cavities. The dentist told me that’s most likely from chemo. It does a number on your teeth.

I had to spend quite a bit of money to get the root canals and crowns, but that’s something that you have to get. You can’t have bacteria just floating around in your mouth after [the stem cell] transplant because you don’t have an immune system [so] I had to get that done.

They’re very thorough and even though I want to get this over [with], I’m glad that they are so thorough. A stem cell transplant [is] almost like a factory reset of your body. It takes a lot out of you.

I appreciate them wanting to make sure that they get to the bottom of everything and make sure I have the best chance of getting through it. My doctor did say there’s a 70 to 85% chance that they’ll secure it so I think that those are good numbers compared to me not getting the transplant. In that aspect, I feel blessed.

I want to get it done and over with so I can move on. My doctors are positive. They haven’t scared me. My oncologist, she’s been positive. She’s glad that we figured out where this allergy was coming from. So that’s kind of where I’m at, just waiting.

Renata R. 104 fever
Waiting for the stem cell transplant

Right now, I’m on steroids. It’s like night and day. I would be running fevers from the Blincyto. Two weeks ago, I had a 104-degree fever. I went to see a pulmonologist and he [thought it was] just asthma and kind of dismissed me. I knew it was something else. I thought he would put me on steroids but he didn’t. He put me on inhalers and those didn’t work. This is week after week, I’m sick. Then finally, my oncologist says, “I’m going to put you on Prednisone,” and the Prednisone is working.

Post-stem cell transplant regimen

I’m not sure what chemo [I’ll be on]. This just came up. The doctor was saying you might have to get more, but they never broke down what type yet. We haven’t gotten that far because of all the things that came up, but I think it’s just for a few days.

I also need two more intrathecal chemos but because [the reservoir] isn’t in my head anymore, I have to get it in my spine. They [will] put me under twilight so I don’t feel it. I have to get two more intrathecal chemos and that’s Methotrexate.

Renata R. Michael with dog

Words of advice

The main thing is to focus on this child that’s growing inside of you and that this too shall pass. Once you have that baby, you’ll forget all about the things that you went through. People told me that and I didn’t believe it. I forgot about all of that because you have this baby, against all odds.

People were afraid to ask about my pregnancy because they knew I had cancer. It was almost like they pitied you but that bothered me. You have to rise above that and focus on the baby, focus on life after cancer. That’s what kept me going.

What I’ve learned was to focus on [Michael]. My sole purpose was to bring him into this world. I cared about myself, but thinking of him — thinking of taking him to Disneyland, going on trips with my husband and the dog and the baby, all of these things that I’ve always dreamed about — kept me going. It helped.

Focus on life after cancer. That’s what kept me going.

You can’t be around negativity. With cancer, you have to really be positive. People say to me all the time, if I were you, I would be depressed. Why would I be depressed? That’s not going to fix this cancer.

There are a lot of things that knock you down, like side effects, and sometimes you want to quit. When you feel that urge to quit — I don’t know if it’s your dog, your kid, your spouse — you have to have something to hold on to, something to look forward to in the future. That got me through.

Stay off of social. I joined these Facebook groups and they scared me to death. It was too much. I had to leave the group or just go in when I was mentally okay with doing it.

Renata R. family

Another big thing: you have to listen to what the oncologist and the maternal-fetal medicine say. Everything. Sometimes it seems like they’re overbearing, but you have to listen to them because sometimes, it’s the difference [between] life and death. You might know someone else who had ALL that did this regimen — no. Just listen to your oncologist.

If you’re not comfortable with your oncologist, go somewhere else. I’ve come across people who said they had horrible oncologists. This is something that’s too precious. Your life is too precious. Just go somewhere else.

Drinking a lot of fluids, proteins, [and] things like that helped me, especially because I was pregnant. Chemo dehydrates you and you have to replace that. I would drink like a gallon of water a day. I don’t know if it made a difference, but I didn’t have any issues with being dehydrated.

I look at it as I want to get through the first year. Step by step. Try not to look too far into the future and just take things as they come.

Keep with friends and family. If you need help, don’t be afraid to ask for help because you need a good support system around you.

Remember it’s a marathon, not a sprint.

Another big thing is your social worker. I never really knew what a social worker did until I had cancer. I have a phenomenal social worker and she’s helped me because a lot of this is mental.

You have to have this strength that you’ve never had before and you know you have to do things that you’ve never done before. Different ways of coping. I got on Wellbutrin [and] that helped me. You can’t be afraid to ask for help because it’s a lot.

Find something that you like. Try to do things that you like doing. I love going for walks, so if I’m feeling up to it, I walk [and] I get on the bike. I keep moving. That helps a lot too.

Usually the two treatments for ALL, either you go to maintenance chemo for two years or you do the stem cell transplant. Neither one of them are easy. I did maintenance chemo for two months and it was hard. It wasn’t easy on me and I would have to do that for two years.

I know [it all] sounds daunting right now, but it’s a lifetime thing. Remember it’s a marathon, not a sprint.


Renata R.
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Categories
Active Myeloma Cancers carmustine Chemotherapy Cytoxan (cyclophosphamide) dexamethasone Filgrastim (Neupogen) melphalan Multiple Myeloma Revlimid (lenalidomide) Stem cell transplant Steroids Velcade

Ray’s Multiple Myeloma Story

Ray’s Multiple Myeloma Story

Ray H. guitar

Ray was diagnosed with multiple myeloma. He shares his story and how he found out he had cancer starting with a routine CBC blood test. He stresses the importance of going to your doctor for routine checks, his experience with stem cell transplant, and learning how to accept help from family and friends.

  • Name: Ray H.
  • Diagnosis:
    • Multiple myeloma
  • Initial Signs: Hemorrhoids, low red blood cell count (a bit anemic)
  • Treatment:
    • Immunotherapy: Revlimid, Velcade, Dexamethasone
    • Chemotherapy: Cytoxan (Cyclophosphamide), BCNU (Carmustine), Melphalan
    • Stem cell transplant
  • Maintenance Regimen:
    • Revlimid
    • Velcade

My cancer diagnosis is a big part of me now… Cancer hasn’t taken away my life and parts of my life. It’s enriched my life

Ray H. timeline


Ray H. guitar friend

Pre-Diagnosis

Tell us about yourself

My cancer diagnosis is a big part of me now. I’m a marketing writer. I’m also a musician. I live in the Bay Area, been married for a really long time, 27 years or so. Have two children — [a] 25-year-old daughter and our 23-year-old son — and [I] was diagnosed with multiple myeloma [in March 2019].

Looking back

Sometimes, time goes by pretty quickly. Part of that may be going through the pandemic and all the disruptions that we’ve had in our professional, personal, and social lives; that seemed like a long time. When you start hitting anniversaries, all that seemed kind of a fast year.

When it relates to my cancer diagnosis, looking back on some of the treatments like during stem cell transplant, time seemed to move pretty slowly.

Now, I’m 20 months out [from] having my stem cells reintroduced to my body, that seems pretty quick, a year and a half’s gone by.

Routine CBC came back. They said, “It’s a low red blood cell count. Let’s confirm it. Something weird could go on.”

First signs

I, for years and years and years, have been a cyclist to keep me in shape and allow me to eat whatever I want to eat and drink whatever I wanted to drink. I, like most cyclists, would keep performance metrics. In 2018, my metrics as a 54-year-old were every bit as good as they were in my late 40s. I was a beast on the bicycle doing fine.

Oddly enough, though, I was having problems with hemorrhoids; not so much with pain, but with just blood. I went to my gastroenterologist [and] had a colonoscopy [in early] 2018. He mentioned, “You have hemorrhoids,” and just went on to [talk] about the results from my colonoscopy. I [wanted to know] more about these hemorrhoids. [He said,] “Don’t worry too much about the hemorrhoids. It’s not going to turn into cancer or anything like that.” But I [wanted to] know [if] it’s [going to be] a problem for more advanced treatments. [When he asked] what the symptoms [were, I said] I have blood. Then [my doctor said,] “Why don’t we just do a quick little blood test? Routine CBC.”

That routine CBC came back. I was a bit anemic. My red blood cell count was 11-something. They said, “It’s a low red blood cell count. Let’s confirm it. Something weird could go on.”

I can be diving into a deeper pool than I want to be diving into.

bicycle

Testing

Before I could get it confirmed, I got into a bicycle accident and broke my eye socket so it took me a little while. I had a lot of things on my mind, other things I was getting prepared for, the holidays… Just natural procrastination.

[In] January 2019, I went back for my follow-up blood test and it also was anemic. In fact, a little bit more anemic. He said, “You are definitely anemic. Let’s see why. Let’s run another blood test [that’s] a little bit more sophisticated to see. Perhaps [there are] some indications that there might be internal bleeding.” That came back still anemic but negative to those indicators that might have internal bleeding.

At that point, he’s like, “We’ve gone as far as we can go from a gastroenterologist type of perspective. Time for you to go to a hematologist.” He referred me to one and that’s when I found out that, looking her up online to make an appointment, hematologists are oncologists. That’s the first time it came to my head. There might be something a little bit more to this.

Around February 2019, [I] have an appointment with my hematologist-oncologist. That was probably a four-week, five-week process as we began to work down what was causing my anemic condition. After a couple of weeks and a couple of tests, we knew it was probably something. Then after that, a bone marrow biopsy was the one that confirmed her suspicions of multiple myeloma.

‘Time to go to a hematologist.’ It came to my head. There might be something a little bit more to this.

Seeing a hematologist-oncologist

I had worked for a drug company a long time ago. I knew hematology was [the] study of blood, but I have a sneaking suspicion that most hematologists are also oncologists.

Looking up my doctor and seeing the oncology next to her was a big shock. I don’t think I’d even been thinking about it as a possibility. I don’t know what could have been the cause of my red blood cells being low but cancer wasn’t high on the list. I can be diving into a deeper pool than I want to be diving into, and that was the first kind of hint that that was going to be the case.

bone marrow biopsy
Cancer Research UK / Wikimedia Commons
Discussing the bone marrow biopsy

My wife and I are sitting in a doctor’s office. She goes, “Next step, we’re going to do a bone marrow biopsy.” I give it a resigned chuckle and a roll of my eyes. She’s like, “What’s that about?” And I’m like, “Come on, doc. The bone marrow biopsy test comes with a reputation, right? There’s some baggage that comes along with it.”

What I tell people that ask me about my bone marrow biopsy experience is you don’t want to consider it recreationally. It’s a painful thing. You just got to suck it up and get through it. Thankfully, it doesn’t last long because [it’s] uncomfortable.

A bone marrow biopsy was the one that confirmed her suspicions of multiple myeloma.

Getting through the bone marrow biopsy

I’ve had two different bone marrow biopsies and two different approaches to it. The one that I had in my doctor’s office was straight old pushing the needle. I had another one at the Cancer Center at Stanford University. They used a drill. Scary sounding, but it didn’t hurt as much. It was also my second one, so I kind of knew what was going in.

My advice is [to] try to breathe [and] focus. Some people take themselves to their happy place. Find a spot in the wall that you stare at, but it’s critical that you be still. There’ll be probably a second person, an attendee at the biopsy, to hold your ankles down and keep you from rotating. It’s important to stay still and get through it.

[In] my initial bone marrow biopsy, they discovered that 90% of my bone marrow was cancerous.

The worst part of the pain is not just the injection, but it’s also the, for lack of a better word, dissections and taking the bone marrow out. I think that may have helped the second time around. I had less cancer in my bone marrow. It was a little easier to draw out so maybe that contributes to [feeling] less pain.

[In] my initial bone marrow biopsy, they discovered that 90% of my bone marrow was cancerous. All this came from a simple CBC test, something that you should be getting once a year when you see your doctor. If you do not go to your doctor, you’re doing yourself a disservice. I was performing exceptionally well on my bicycle. I was feeling great, yet I had 90% of my bone marrow cancerous and I was anemic.

Even if you’re just a patient caregiver, take care of yourself. Go to the doctor. It’s rule number one. Go get your CBC. For me, that’s the only reason I was diagnosed and I was diagnosed way before multiple myeloma could become much more problematic.

A lot of multiple myeloma patients get diagnosed with bone fractures; frequently, compression fractures of the vertebrae. There’s a patient in my support group who woke up one morning [and got] compression fractures in three of his vertebrae, lost about two and a half inches of height in his first two steps out of bed. The bone marrow is so cancerous [that] it had gone into the bone, weakened the bone, and then had that fracture risk.

Blood test results

From my first anemic test, it was a little worse [going into] the second one. The third follow-up was close to the second, so it was about the same.

Within starting treatment, my first or second blood test after [showed] I wasn’t anemic anymore, so I did see immediate results.

waiting
Dealing with scanxiety

I never had scanxiety before because I was always expecting them to be normal. But then once they started becoming abnormal, there’s the anxiety even heading up to get it. What are the numbers going to be? Are my cancer markers back? Are they higher?

I’ve had a closed MRI before and an open MRI for athletic injuries. Closed MRIs [give me] much more anxiety because it’s extremely claustrophobic. The open one’s different. The PET scan, [even if it was] still exploration, [you] wonder what it’s going to come back at, [if] there literally [will be] holes in my bones that require an escalated treatment.

I went to a group very early. I got diagnosed [on] March 11th. My first group was the very next week. I learned about anxiety because people say, “I’ve got this test coming up,” and now everyone’s worried about what’s the number going to be. Everyone’s got a number in something and they want this number to be within range or lower or what have you. There’s a lot of anxiety that comes with that. It’s helpful to talk about it and find out that you’re not the only one who feels that way.

It’s helpful to talk about it and find out that you’re not the only one who feels that way.

Diagnosis

Getting the official diagnosis

It came a bit more of a shock to my wife. She had been in all my appointments ahead of time. But in the research that she was doing, I think she was hopeful. She was thinking [it] was like a smoldering case of multiple myeloma.

I was not going to Google because I know what head game that could be. I knew that it wasn’t going to change anything. All that work I would do in between my bone marrow biopsy and my doctor’s consultation afterward, nothing I could do within that is going to change what my approach would be from that very moment of my diagnosis forward.

All this other stuff didn’t really matter. I wanted to compartmentalize and work with what I knew and what I could do. I didn’t want to think about all the various possibilities. It’s just [how] I’m wired.

My wife Lori is a little bit different. I came in and because of the conversations that we [have] had, it was probably going to be lymphoma or multiple myeloma.

Nothing I could do within that is going to change what my approach would be from that very moment of my diagnosis forward.

I, at that time, was tired of being picked on. I was getting poked and prodded. I don’t particularly like needles to begin with. I had given a lot of blood [and] had the bone marrow biopsy. I sat across [from] my doctor and said, “Doc, I feel as though I’m like a fighter in a ring and I’ve been taking a whole bunch of punches. Tell me what it is and let’s start swinging and punching back.” She looked at me and said, “All right. You’ve got multiple myeloma.”

Going into that ahead of time, if you’re thinking it’s lymphoma or multiple myeloma, there’s one that is incurable, there’s another one treatable, and there’s another one that is curable. Treatable, curable, but also potentially [with] the mortality rate higher. What do you even hope for? Which way do you want that coin to land?

I feel as though I’m like a fighter in a ring and I’ve been taking a whole bunch of punches. Tell me what it is and let’s start swinging and punching back.

She told me it was multiple myeloma. [It] came as quite a shock. My wife was very strong in the office but when she got back [to] the car, she immediately started crying. We’d been warmed up to the process that it was going to be something, so it wasn’t just out of the blue.

Both of us, in some way, knew that something was coming. It turned out to be more significant than my wife was anticipating for me. I didn’t have an idea about levels. It was more binary, yes or no. We already knew it was going to be yes, so now it’s just which yes is it.

Multiple myeloma as a chronic illness

Even before the official diagnosis, she let me know — chronic disease, incurable yet treatable. I still remember that. It was known even before I was officially diagnosed.

Both of us, in some way, knew that something was coming. It turned out to be more significant than my wife was anticipating for me.

Breaking the news to your family and friends

Nobody knew that we were going to these tests. Why get people worried about something that they might not need to be worried about? Nobody at my work knew, none of our friends, certainly none of our family.

It was no warm conversation. This is as cold a cold call as it gets. We [couldn’t do] a synchronous Zoom call where I could talk to everybody at the same time so I thought I’m just going to work my way through time zones.

Nobody at my work knew, none of our friends, certainly none of our family.

My daughter is at law school [in] Vanderbilt, Nashville. I call her up and I hadn’t rehearsed anything in my head. There’s no user manual to talk about this with your loved ones. My daughter, when she gets a call from her old man, that’s something she needs to answer. I yanked her out of a seminar. It’s in the evening, her time. She answered the phone, “What’s wrong?” And that gets me crying before I even start talking. Then she hears me crying and I’m her dad [so] she starts crying.

Nobody in my family had ever heard of multiple myeloma before so telling her was probably the most difficult conversation I’ve ever had with anybody. It was just one person in my family and I still had a ways to go. It gets better with practice, but the first one was extraordinarily heavy.

I wish I’d just hadn’t jumped on the phone. I wish I had thought about it, maybe rehearsed [it] in my head, had some messages that I wanted to clear up. Maybe there’s a way that I could have softly approached it with a text first and warmed into a phone call. I wish I’d rehearsed it. Certainly very emotional, very tough to get by.

It’s like becoming a new parent to a newborn. You don’t get a user’s manual when you become a parent and there’s no user manual on how do I tell my loved ones. It does get easier.

Nobody in my family had ever heard of multiple myeloma before so telling her was probably the most difficult conversation I’ve ever had with anybody.

Difficulty of breaking the news

You don’t want your loved ones to have anxiety. You don’t want them to be worried.

There might be an internal perspective of where it’s the final building block that this is real for me and maybe I hadn’t thought about that. Maybe there’s still a part of you that has not complete acceptance of it because you haven’t told anybody and if you haven’t told anybody, maybe it’s not real. There’s probably a component of that as well and the realization is, “Wow, man, I have cancer and now my family knows about it.”

Any advice I have is [to] rehearse it a little bit. Think about what you want to communicate and how you want to communicate it.

The realization is, “Wow, I have cancer and now my family knows about it.”

Ray H. treatment Stanford

Treatment plan

I actually got a binder [with] a bunch of resources in it and what treatment was going to be.

There’s a standard induction treatment for multiple myeloma. Part of my diagnosis involves genetic testing. The type of multiple myeloma is different for everybody.

Mine’s an aggressive form so knowing that and knowing the standard induction treatment that goes into it [leading] up to a stem cell transplant, all that was kind of laid out for me. [The] medications, regimen for a period of three to six months or so, stem cell transplant, then after, some sort of maintenance regimen to continue on.Mine’s an aggressive form so knowing that and knowing the standard treatment that goes into it [leading] up to a stem cell transplant, all that was laid out for me.

Left unsaid in the multiple myeloma world [is] we look at things in three-year periods. Get you through three years and hopefully, there would be more advanced therapies that come out within those three years. Then look at something else for another three-year cycle. While you’re going through proven best practices treatment, the scientists are in the lab looking for new things like CAR T therapies, for example, in the multiple myeloma world. It was laid out to me. A lot of documentation.

In the multiple myeloma world, we look at things in three-year periods.

In a way, I’m pretty blessed. I’m here in the Bay Area. Stanford is right across the water. Across the bay is a world-renowned hematology department and cancer center. My oncologist is associated with Stanford University. A lot of materials ready to help educate me as a patient of the road to come.

First-line treatment

Induction therapy

The highlights were a weekly visit to the infusion center to receive an injection of a drug called Velcade. Not much fluid in that shot and not a very long induction or infusion process.

For multiple myeloma and the Velcade injection, it’s a process that is a slow plunge on the injection so that takes about 10 seconds. I can get in and out of the infusion center in an hour with my vitals checked [and] blood tested.

Built around that was a pill regimen, Dexamethasone, a steroid, and a big dose of it, too. It was a once-a-week dose and that was timed for the same time as my Velcade injection. I would take 40 mg of Dexamethasone and later that day would get my Velcade injection.

If I had a less aggressive form or if I didn’t have 90% of my bone marrow being cancerous, I could get to this MRD (minimum residual disease) level where it was such a minute amount of cancer in my bone marrow where [they can put] you on a maintenance dose, keep you steady.

Side effects of induction therapy

The idea explained to me is [that] sometimes taking a heavy dose of steroids can get you hyped up a little bit. I have difficulty sleeping as a side effect, but one of the side effects of the Velcade injection might be fatigue. When you put those together, there might be something that counteracts and you can go to sleep.

The third and final part of my induction therapy was Revlimid. [It] was a daily pill, 25 mg, which is a heavy dose, much higher than I’d take now in maintenance therapy. That was once a day and I believe that was 28 days on, seven days off in a cycle. I didn’t notice [many] side effects as it relates to Dexamethasone.

Ray H. rashes abdomen

Revlimid, particularly at the start, a lot of skin rashes would present [themselves] in my thorax and up my neck and my scalp. I used to get a lot of those.

[With] the Velcade, I didn’t really notice many of the side effects but it’s an injection given in the belly and the injection site would bruise and suffer a big rash as well. You just keep looking for a fresh spot to put the injection.

Digestive problems to Revlimid and Velcade, not exactly sure which one [caused] which, but there’s both constipation and diarrhea. I know some people might be thinking, “How is that possible?” Some cancer patients under treatment can tell you it’s possible. They can both present at the same time.

Then there was fatigue. Thinking back, I don’t know how much of the fatigue is [a] side effect of therapies to also just the side effect of a diagnosis. Just the mental gymnastics that you play in your head so many times, particularly early in a cancer diagnosis, can be exhausting.

Mental gymnastics

From my cancer diagnosis and my initial regimen, which took place for six months, everything I’ve always done has always had some milestone and keynote. Whether it’s athletically, I had an event, or if at work, it was a presentation. If it was as a musician, it was a gig, a performance.

Everything would kind of build towards something and I took that same approach as my cancer diagnosis. I got to exercise. I got to eat. I take my medication because I was building toward fight night to game day performance. It was a realization.

The mental gymnastics that you play in your head so many times, particularly early in a cancer diagnosis, can be exhausting.

Two weeks in, I went to go have dinner with my wife [and] my son. I’m just sitting in a restaurant [and] I was exhausted. I was beat. It took a while to [realize] that when you have a cancer diagnosis, you have a chronic illness. Every night is fight night. Every day is game day. It’s not this training thing that you build up and you hit something. It is every single day. Cancer doesn’t take a day off. You can’t take a day off either. You’ve got to judge your efforts to get that through.

Ray H. holiday pants

A big part of that for me that can be mental. When I was first diagnosed, I thought about cancer pretty much as soon as I woke up and the last thought that went through my head at night was cancer. A lot of times in between, it was cancer. That’s not the case anymore.

With time comes a different type of acceptance and you do things differently. I think that’s important to tell people early on in their journey. You’re tired; give yourself some credit for being tired. It’s okay to be tired. You’ve got a lot going on.

Just know that every day is fight night and game day performance day. Be able to adjust what you need to adjust to go on for a long marathon because you’re fighting this forever. You’re a warrior and you know you’re coming through the other side. [There are] going to be times you don’t feel great but that’s okay. Don’t beat yourself up on it. Just adjust and get back up. Get back up to speed.

Cancer doesn’t take a day off. You can’t take a day off either. With time comes a different type of acceptance.

Ray H. faith
Not looking sick

One of the things new to me is people caring about their hair and losing their hair. I have friends that adjust their treatments and do not take certain treatments because they don’t want to lose their hair. For me, what’s the big deal? I did lose my hair through my treatment but when a man loses his hair, it’s not because he’s sick. It could be because of fashion, genetics, or it could be a whole bunch of different things in our North American society. If you’re a woman and you’re bald, pretty much [the] first thing people jump to is, “Oh, is she going through some health problems?”

A mental approach for a lot of patients to come across when you’re going through treatment: Cancer’s not so tough. It’s the treatments that are tough and you’re going through treatment. Sometimes you don’t look so great. You’ll be pale and all these other [varieties] of things. I don’t think people want to look like they’re not feeling well and that’s a big mental thing to overcome. There has to be a certain time and a certain degree of acceptance that you have to give that. That’s the way I am.

You have to find a way to push through it. Don’t let that be all-consuming to you. If you’re not feeling well, it’s really easy to sit on the couch [and] lay in bed for a little while [but] it’s not making you feel any better. It’s making you feel even worse. You’re losing your power and losing your energy. “I just don’t feel like going to the store. I don’t feel like cooking. Maybe I’ll just get some fast food.” Then you’re not eating very well, and that’s certainly not going to make you feel any better. You feel even more tired, then you’re feeling kind of depressed because you’re feeling so tired or eating fast food, and doing this and that. It’s okay for all of us to do that at some point in time.

Cancer’s not so tough. It’s the treatments that are tough and you’re going through treatment.

We’re all humans. Give ourselves a break. Important for everybody — cancer patients, maybe even more so — [to] be able to identify that. Pick yourself up. Today starts the first step. Let’s get out. Let’s get a little exercise. Let’s get a little strength, a little power. [A] different frame of mind. Let’s go forward.

Managing the side effects

I don’t believe going through immunotherapy did anything about diarrhea. For constipation, MiraLAX — odorless, tasteless powder mixed in water. Take that daily. I still take that daily through my ongoing treatment with the rashes.

I did get some prescription drugs and creams to combat the rashes but I didn’t use them much. I was already taking a whole bunch of pills and felt I can live through the rash. As my body adjusted to Revlimid, I felt those needs went away.

For the injection sites, just a regular over-the-counter lotion. For the Revlimid and the rash, even some over-the-counter anti-allergens, like Claritin. I still take Xyzal once a day just to help combat potential skin problems.

Ray H. head shaving

Stem cell transplant

Losing my hair

I knew that if I was going to get a stem cell transplant, I was going to go through chemotherapy, and going through chemotherapy, almost for sure I was going to lose my hair.

In induction therapy, I thought, “If I’m going to lose my hair, I’m not going to shave and I’m not going to cut my hair, and then I’ll do it my way just before I go through therapy. We’ll have a big party and we’ll shave my head and we’ll cut off my beard.” I started getting this mountain man look as I was going through my induction therapy because I wasn’t cutting my hair and I wasn’t shaving and I was just preparing for the time when I was going to shave it down before chemotherapy took it for me.

When I started my induction therapy, they were telling me, “Three to six months, you’ll take maybe a stem cell transplant… We’ll see how you progress.” And me wanting to be an overachiever, “Let’s do it sooner!”

I went to go see a specialist just a couple of months into it. She gave me some great advice. “What are you in a hurry for? You’re responding well to your induction therapy. Let’s keep going at it for a little bit. There’s no need to rush.” Coming from my perspective, if it’s three to six months wouldn’t three months be better? Not necessarily.

I wasn’t learning anything about stem cells and stem cell therapies because I was focused on induction therapy and what could I do. What could I do to help present a garden of my body to help grow healthy cells as opposed to cancer? I was concentrating on clean eating, drinking, and exercise, in my mind at least helping the medicines do what they’re intended to do. It was maybe May when I got this whole idea [that] maybe [I] don’t need to rush into a stem cell transplant.

I continue to make progress, but that second bone marrow biopsy probably would have been in early September. It’s gone from 90% to 10% but the markers are there. Not at an MRD level through induction therapy. Now’s the time to probably think about a stem cell transplant.

Stem cell transplant, you start it off with chemotherapy. It’s not day one, it’s day two, and that chemotherapy is going to be chemotherapy that probably results in losing your hair. I had a party that was a fundraiser for the Multiple Myeloma Research Foundation. It’s $20 a swipe with the clippers. We raised $250 that night that we matched. I was going to go bald sooner or later anyway so I went bald my way.

Ray H. hospital bed
Preparing for chemotherapy

The first day is surgery for catheter placement. Chemotherapy can be extraordinarily harsh going through your veins so I had a catheter placement. I was also going through daily blood tests. It’s a Hickman catheter put in my chest; [a] very quick procedure. It’s conscious sedation, in and out. The second day, [I had] my first chemotherapy dose.

I [went through] 3 different types of chemo during my process. I think [Melphalan] was my last dose, either [the] second or third dose. BCNU (Carmustine) would be another one. The first one I think… Cytoxan. [A] nice big heavy dose of Cytoxan.

Side effects of chemotherapy

I do want to share about Cytoxan and chemotherapy-induced nausea. I thought I knew what nausea was and I thought I was going to be okay with it. I learned through my very first chemo that’s not the case.

We had to be in very close proximity to the cancer center. We relocated to Menlo Park, California, to be close to it. That first stop by, you need to be within an hour of the cancer center in the Bay Area. That means that could be three miles away. We were staying in a hotel and I knew I was going to be there for five meals. My wife and I go to the store. Easy, right?

[On] day number two, [the] day after my surgery for the catheter, I spent all day with Cytoxan. It gets synthesized through your body, through urine, and through your bladder so it’s a lot of fluids [getting] pumped into you. You need to drink a lot. It was all day sitting in the infusion center and getting it.

I had lunch feeling pretty good. I watched Thursday night football that night; feeling pretty good. It’s about 11:30 at night [and as] my wife [is] getting in bed to go to sleep, I’m like, “Lori, I need you to go to the store to get something.” [The] stuff that we had picked out [earlier at the store], just the thought of it, was making me nauseous.

Ray H. treatment

I was on all these anti-nausea medications but this was sweeping over me. All I could think of was maybe some crackers, ginger ale, or something like that.

You got to stay on top of your meds. That’s just a given. If they say take this every 4 hours, take it every 3 hours, 59 minutes, and 59 seconds. Don’t miss it at all. Stack them. Keep it up.

Always keep a little something in your stomach and have a lot of choices because whatever gets presented right in front of you is something that you’re not going to like. That was a recurring theme for the next six weeks. My wife would ask me, “Hey, Ray, do you want…?” Just her saying words were like making me sick to my stomach. I’m like, “I know you’re doing this out of love and asking me if I want something. Let me come up with the words because just even the words can make you nauseous.”

I thought I knew what nausea was. I didn’t know what nasty was. I do now and it can be crippling. It can be debilitating. Through chemotherapy, that first time around, I did not have episodes of vomiting. The second [and] third time around, I did for a couple of days. No one likes doing that. It’s probably not nausea that you’ve experienced previously in your life before you go through chemo.

[There are] times when you double up [the anti-nausea medication] and definitely do that. For me, there’s a very, very fine line between hunger and nausea. Don’t think about your favorite food. What’s kind of common advice is don’t even think about eating your favorite food going through treatment because it’s not going to be your favorite food ever again. Save that and do something else but have some choices for you. Wet and cold were best for me, way over something dry.

One of my chemotherapies created mouth sores and going in ahead of that was cryotherapy, chewing on ice for 15 [to] 30 minutes. I did have one in the back of my throat. You have to take some pretty big pills and pills can start me getting gagging. The last thing you want to start doing is [to] start gagging when you’re nauseous. You’re sitting down there and fighting the urge to vomit. You’re just trying to get yourself together, to muscle down a horse pill that you’re trying to get down.

Another handy thing: [a] pill crusher or something to cut pills. [There are] some pretty big ones for the possible infections that you might get, antibiotics [and] antivirals that you need to take. Cutting those in half, maybe even crushing them, [putting] on a little bit of ice cream, and working it down.

Beware of things that can kick-start your nausea. You’ve been doing everything right but the next thing you know, you start gagging on a big pill because of a sore in your mouth, and then it gets you right back to step one again.

Give yourself a whole bunch of options. For example, when it comes to food, if you need five meals, have 20 ready. Also, redefine what you think a meal might be. It’s not going to be 2,500 calories of a whole bunch of stuff, a big platter of food. Just a bite or two, here or there. It gives you sustenance, gives you strength, gives you power, and something that you can stomach.

Recovering from stem cell transplant

The transplant was the long haul. The stem cell transplant [is] where they’re using your own stem cells to reintroduce [into] your body. All in all, it’s six [to] seven weeks. It starts with the catheter placement, a massive dose of Cytoxan, and then you’re free to go in 24 hours. It kills myeloma cells that also kick-starts your immune system. Be prepared for wackiness.

When your nurse is giving you chemotherapy, they go to extraordinary pains and measures to make sure none of that touches the outside of their body or their clothes. They are in complete hazmat [suit] and they’re injecting it straight into your heart to the catheter. That is a weird thing to kind of get over.

Cytoxan kick-starts your body’s immune system [and] starts ramping up the production of stem cells. Then you go through, for me, about 11 days of Neupogen injections that my wife would give me three shots a day to spur all these stem cells to get coaxed out of the bone marrow [and] into [the] bloodstream. Once they enter the bloodstream, that’s a lot easier to get taken out of as opposed to 200 bone marrow biopsies to get your stem cells out. For me, that was about 11 days of that until I finally got a blood count that was high enough to go through apheresis.

Ray H. apheresis

Apheresis is a dialysis type of treatment where [the] blood comes out, gets centrifuged around by volume, the stem cells are kept, [and] the rest of it gets put back into you. [Sessions] can take over three days. For me, I did it one day, about 4 hours. Once you start, you can’t stop. That was the end of the first step and that was great because after that, you get a couple of weeks where you kind of rest up and get your body ready. All said and done, it was like one big chemo day.

Side effects of stem cell transplant

I didn’t feel great that night and the very next day, but after 24 hours, I was feeling better. The shots were a mental thing to get over and then I had a two-week break. Then the rubber meets the road.

The harder part is the second half. That’s two massive doses of chemotherapy in a three-day period. It’s not a very long infusion. It’s maybe 15 [to] 30 minutes afterward. Those two big massive doses of chemotherapy [are] designed to completely wipe out your bone marrow.

You start to feel those effects because your bone marrow is what makes your blood cells and red blood cells, for example, carry oxygen. You will not have any more red blood cells except [for] what’s in your body. Over time and quickly, those kinds of break up and dissolve. They’re going around, they’re getting banged up through their journey through the vascular system. They disintegrate. Your blood cell count starts going down and you have nothing in your bone marrow to get that back. They give you your stem cells back a couple of days later, after that second dose of chemotherapy. Then it’s a waiting game until it engrafts.

Waiting for stem cell engraftment

Those are long 11 days. During that time, I had nausea after those chemotherapy treatments. Getting the stem cells back as they package it up and DMSO. Everyone’s going to have a weird side effect and that’s going to be body odor. It depends on your body on what type of body odor you get. Mine was tomato soup. Your stem cells come back in and the next thing you know, the room smells like tomato soup.

After my stem cells have been introduced, my blood counts just kind of went to zero. I needed a couple of red blood cell transfusions. I started popping a bit of a fever. I have low blood pressure, to begin with, but with a fever and low blood pressure, that could be anything.

All these prophylactic doses of very strong antibiotics got to the point where I needed to be hospitalized. Moved out of the hotel in Menlo Park and into Stanford Hospital for four nights. I probably could have left after two [because] my fever was gone but they wanted to wait [to] see some platelets and [to] know that it’s engrafted. Then it was home for the recovery. Those 11 days until I engrafted… very long days, very tiring. It’s a tough road.

Ray H. suit

Living with myeloma

Maintenance therapy

My second birthday, the day that my stem cells were given back to me, was November 5th. I know I engrafted around November 16th or so. I’d probably started maintenance meds in February again and I was kind of bummed out because my maintenance regimen was Revlimid and Velcade. I just went through a little garden walk through hell just a couple of months ago, and I’m back to the same thing, minus the Dexamethasone? My specialist [said], “You did the right thing. You beat the thing down. That’s the whole idea. Beat your myeloma down to the lowest possible level that you can and then do the maintenance therapy.”

My Velcade is now half of what it used to be so instead of weekly injections, it’s biweekly injections. My Revlimid dosage is now 10 mg. Currently, I’m at three weeks on [and] two weeks off. It’s been a juggle now trying to figure out what’s right. It’s been over a year. It was 28 days, seven off and it’s ranged from that to now three weeks on, two weeks off, trying to figure it out.

I still suffer from a low white blood cell count. I’ve only had to miss one treatment though; once, my neutrophils were too low to do [the] treatment so we passed on the Velcade injection. We’re into the new normal for me. I think I’ll always have a low white blood cell count but trying to get the right meds for the new normal.

Adjusting to the new normal

It’s a bit of a leash. At this point, I’m chained to an oncology center. I have to be there every two weeks. I’m trying to come to terms with that because my kids are out of the house now and I want to know: where do we want to live? Change is always difficult. Change when it comes to your healthcare and [the] professionals that you deal with, that’s a huge complication. If I move out of the area, then I no longer have my doctors, my specialists, and things like that. Mentally, it’s this idea that I’m tied to.

I need an infusion every two months or every two weeks. Can I go to northern Italy for a month and hang out? I can, but I’ll be missing a treatment and so is that the best thing to do? I quickly overcame my disappointment. You get kind of used to it. It’s a way of life and that’s what you do.

Ray H. walk with friends

I got my strength back pretty quickly. Rebounded physically pretty well. A friend of mine, as a New Year’s resolution, was going to walk 1,000 miles. I thought that’s something I could get behind. I could do that because I’d already been walking a little bit. So I did!

Physical exercise is important. It’s always been important to me but I think it’s important here. It makes me feel better and when I feel better, it also helps me.

As a cancer patient, take advantage of the days that you’re feeling good. Go out there and do something. It’s human nature for us to sit around. But keep in mind, it’s very tough when you’re perfectly healthy to break your New Year’s resolutions. You’re not injured. You just don’t feel like it. Being a cancer patient, you don’t want to work out. You just don’t feel like it. But you need to prepare your body for your medications. You need to have that type of power and strength and energy to be able to shop for yourself, prepare healthy meals, go to the doctor, [and] take your medicines. It’s overcoming that mental aspect of it.

I like to view myself [as] a system of subcomponents. There’s a physical component and mental component, emotional and spiritual, and they all are interrelated and all play amongst themselves. I need to be alert on when one of those might be down [and] help push that back up. Do something else. Maybe a change in the frame of mind to get me to take care of myself as a whole person.

Complementary therapies

Going through my induction therapies, I was aware of a local organization. My doctor said, “Try these things out and get grants for these complementary therapies.” This organization [offers] acupuncture, acupressure, visual imaging, [and] a couple of other modalities.

The idea is [to] try some of these complementary therapies. They’re not going to cure your cancer, but maybe they can help you feel better. For me, it was trying acupuncture and also acupressure for skin and fatigue

One I did not mention earlier [was] insomnia. I can tell you that [with] acupuncture, I used to fall asleep during the treatments so that must have helped a little bit with insomnia. It was good to try those out. It’s something I would not have tried on my own, something that insurance doesn’t cover.

[In] this particular organization, I got a grant to try these things out. They want you to try these different modalities and see what might work for you. If acupressure doesn’t work for you, maybe you might find that acupuncture does. Then if it does, what’s it hurt to give it a little bit of a go and see if it helps alleviate some of these symptoms? Sometimes it’s the treatments that are more problematic in the way that you feel than cancer itself.

Getting help is important. These are people right next to me, arm in arm with me, and that strength in numbers means everything to me.

Ray H. friends
Getting support from family and friends

When I first was diagnosed, [people asked] “How can I help you?” I kept on saying, “I’m feeling good. I don’t think I need any help.”

[It] took somebody at a group to share with me that people want to help you but it’s not just to help you. It’s also to help themselves. They care for you and they love you. They feel better if they know they can do something for you so consider that. I don’t need someone to drive me to my doctor’s appointment. But if [a friend needs] to drive me to my doctor’s appointment, then [I’ll have them] drive me.

Accepting help initially was kind of difficult. I needed somebody from my support group to set me straight on it. It is about you, but it’s also about them. Getting help is important.

My wife went through this entire process with me. If you know anybody out there going through any type of significant health issue, reach out to them and help. It is daunting. She continues to be my rock. There is just so much that goes on with a serious health issue and our complicated health care system. There’s a ton of correspondence. You need somebody next to you. I can’t imagine going through it alone.

What’s meaningful to me is this great network of folks that my wife and I have and these friends. It means the world to me that it’s not people standing behind me as I go into this fight. These are people right next to me, arm in arm with me, and that strength in numbers means everything to me.

I’m so grateful for the people that have [been] there for me. They care about me. I don’t feel like they’re behind me. I feel as though they’re next to me and there’s a difference. I’m thankful for that. Everyone needs that.

I feel as though it’s my role, my responsibility to the patient community and the caregiver community. When I was first diagnosed, they were asking me, “What can I do for you?” My answer was nothing. It finally got to the point where I was speaking in front of so many groups sharing my story that I came up with a list. [There are] four precise things that you can do.

Go to your doctor

I would have been in a much worse situation if I hadn’t gone to my doctor and I went to [the] doctor for a specific thing. It was not general maintenance. [It had] been about a year and a half since [I’d] had a blood test. Go to your doctor [and] get a blood test. Do it for yourself.

Mitigate your risks

We all have toos in our life. I call them the toos — T-O-O — and you don’t need a doctor. You don’t need me to tell you what those toos are, but mitigate your risks. They’re all associated with toos: drink too much, smoke too much, eat too little vegetables, eat too much red meat… We all know what those are. Mitigate your risks.

Reach out

If you know somebody who’s going through a health issue — particularly if they’re going through it alone — reach out to them. I can’t imagine going through this without my primary caregiver, Lori, but just my support community.

I’ve been there and ashamedly, I didn’t reach out to people in the past because I didn’t know what to say. Start with what you do know and that is you don’t know what to say. Start that conversation off with, “I don’t know what to say, but I love you and I care for you. And I’m hoping that we can get through this difficult conversation because I want to be here and support you.” Reach out to those people.

As a cancer patient, I never feel [stronger] than I do when I’m around my people and I know they’re with me.

Contribute

Find something that you’re passionate about and give your time, give your money, give both. Health is difficult.

I was unaware before I started my cancer journey that 33% of the people in the United States, one out of three, are going to be diagnosed with cancer sometime in their lifetime. If you read another study, you’ll see four out of ten will be diagnosed. It affects either you or affects somebody very close to you, in your professional [or] personal network. But even if it’s not cancer, it’s some other health issue. Find it. Find out what you’re passionate [about] and look for ways to contribute. We’re all in this together. As a cancer patient, I never feel [stronger] than I do when I’m around my people and I know they’re with me.

Reading through different books upon diagnosis, you hear some of these anecdotes from people. “The best day of my life was the day I was diagnosed.” I’m not quite there yet. I’m not quite ready to say that. But cancer hasn’t taken away my life and parts of my life. It’s enriched my life.

It’s my job to help the person behind me, reach back and pull them up to me, and show them how to live, too. Cancer is giving me that.

New role as a cancer patient

Prior to my diagnosis, I had a lot of different roles in my life: father, husband, son, brother, worker, boss, teammate, bandmate, and all these roles. With each one of these roles came purpose. Cancer didn’t take any of those roles away. It just added more. It enriched my life. Now, I am a patient and I am part of a larger patient community that is all inspiring. People who have been there and done that, and are showing others the way; that is just inspiring and it’s motivating.

Ray H. MMRF walk

Being a member of this patient community, I can go to the Multiple Myeloma Research Foundation’s Walk in San Francisco. I went three weeks after I was diagnosed and I’m looking at my heroes — these healthy, vibrant cancer patients wearing a different colored shirt than everybody else, participating in this thing. They’re showing me how to live with myeloma. It’s my job to help the person behind me, reach back and pull them up to me, and show them how to live, too. Cancer is giving me that.

Cancer is giving me a role as a patient advocate, as an advocate for the caregiver community, going through stem cell transplant. It’s tough. It’s very easy for me to get caught up in my journey but I know what I can do. I know what I can take and what I can handle. Even [during] the tough days of stem cell transplant, your loved ones, the patient community, the caregivers, they don’t know. There’s a lot that they carry with them. Those men and women are so brave.

Everybody’s different. If you are thinking that cancer is taking things away from you, also look at it the other way around. One go so far it’s called a gift. That does add things to your life. Those things can be very enriching and very rewarding. Don’t lose sight of that.

Ray H. media

I love talking to new patients about multiple myeloma and what I’ve done and what they might be able to [do]. I started a blog, MeMyselfAndMyMultipleMyeloma.com, that I infrequently update and chronicled a little bit of my journey. Some people view cancer as a journey. I don’t view it as a fight. It’s a little bit different. We all have our own things. When they’re diagnosed, there’s a lot left to live for, a lot left to do, [and] a lot of purpose. Anything I can do to help any individual out, I hope I’m aware of it because I want to jump at the opportunity.


Ray H. feature
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Categories
Cancers Keytruda (pembrolizumab) Lung Cancer Non-Small Cell Lung Cancer SBRT Xalkori (crizotinib)

Amy’s Stage 4 Squamous Cell Carcinoma Lung Cancer with MET Amplification Story

Amy’s Stage 4 Squamous Cell Carcinoma Lung Cancer with MET Amplification Story

Amy was diagnosed with stage 4 non-small cell squamous lung cancer. She shares the importance of finding the right doctor, her experience with hyperprogression, and switching regimens mid-treatment.

Amy G. timeline
  • Name: Amy G.
  • Diagnosis:
    • Non-small cell squamous lung cancer
    • MET amplification
  • Staging: Stage 4
  • Initial Symptoms: Lump in the neck, felt run down
  • Treatment:
    • Keytruda
    • Stereotactic Body Radiation Therapy (SBRT)
    • Cryoablation
    • Crizotinib
Amy G.

After [telling] my story and [hearing] everybody else’s stories, my big driving force was helping others because I remember what it felt like to be diagnosed.


Table Of Contents
  1. Video
  2. Pre-Diagnosis
  3. Testing
  4. Diagnosis
  5. Finding the right doctor
  6. Treatment
  7. When did you learn about the MET amplification?
  8. What are bone mets (metastasis)?
  9. Process of radiation therapy
  10. Changing the course of treatment
  11. Biomarker testing
  12. Targeted therapy
  13. Responding to the treatment
  14. Follow-up plan
  15. Living life after a cancer diagnosis

Video

Amy G. dogsitting

Pre-Diagnosis

Tell us a little about yourself

I grew up in the Philadelphia-Delaware-New Jersey area. For most of my life, I actually worked in oil refineries. I was pretty much everything — secretary right up to machinist.

I really enjoy riding my bike. My current job now is walking dogs and housesitting for people… Believe it or not, that’s a really lucrative business.

What were your first symptoms?

Back in November of 2018, I had a flu shot and [it was] no big deal. I’ve never had a problem with a flu shot before.

In two weeks, a lump had come up on my neck in a strange spot. I knew it was a lymph node. I just assumed that it was from the flu shot. Didn’t think it was anything more than that.

I felt a little run down, but nothing big. For about a month, it had stayed there, so I had decided I’d better go call my primary care doctor.

For some reason, I just knew. I knew it was lung cancer. I just felt it. All I could hope is that it was an earlier stage.

What did the primary care doctor say?

She originally took a blood test just to see if there was anything that would show up… The blood test only showed a small increase in my calcium; didn’t think much of it.

She decided that I needed to get a CAT scan done on my lymph node. During that time, [the scan] had caught the top of my lung, my right lung, and had shown that there was a spot there.

Testing

What’s going through your mind during the tests?

I was incredibly nervous. For some reason, I just knew. I knew it was lung cancer. I just felt it.

I had no other issues. I had always known that lung cancer doesn’t really show any symptoms until it’s almost too late.

All I could hope is that it was an earlier stage.

What were the next steps?

The next step after that was I had to have a biopsy. I had a CT-guided biopsy of my lymph node, which at that point showed that it was lung cancer, squamous lung cancer. We didn’t have it staged at this point.

After that, they sent me for a PET scan, which showed that I had it in other areas.

All I wanted to do was figure out a plan to get it going.

Dealing with the wait for results (“scanxiety”)

I’ve been kind of lucky. My doctors have had a really fast turnaround. The CT-guided biopsy took maybe 20 minutes at the most. It was awkward. I was worried.

I had results within about 5 hours. But during that time, I still knew that it was cancer.

All I wanted to do was figure out a plan to get it going.

Diagnosis

Getting the diagnosis

It actually was on my birthday in December of 2018. I was driving somewhere and my doctor had called me and said, “We have your results.” And she said, “Are you with someone or are you at home?” Right there, I [knew].

My life has been so good up to this point. All of a sudden, just one little thing turned out to be pretty major.

Amy G. and husband

I said, “Since you’ve kind of let it off that way,” I said, “Just tell me now, I’m at a stoplight.” At that point, she had told me I had stage 4 non-small cell squamous lung cancer.

I had turned around and called my husband because he was at work. I’m in tears because at this point, “Oh, now it’s real. It’s really real.”

In my mind, I’m thinking, “My life has been so good up to this point. I have everything. I have my husband. I have a house. I have a dog. Everything is going great.”

All of a sudden, just one little thing turned out to be pretty major.

How did you break the news to your family?

I just told [my husband] outright on the phone. I said, “I have lung cancer.” The next thing I know, he hung up and came home. He couldn’t handle it as much as I couldn’t handle it.

I knew I had to tell my parents. My parents were the second group of people I had to tell. I didn’t want to tell my mom first.

My dad has gone through so many medical issues that I figured he’d be easier to talk to about it. I called him up on the phone. We talked for a good half hour about it. I didn’t have plans on what I’m going to be doing but he just kept saying, “It’s going to be okay.”

At this point, ‘Oh, now it’s real. It’s really real.’

Getting a second opinion

It basically was, “We have an oncologist that you can go to to discuss this.” I went to this oncologist and, funny enough, I didn’t like his bedside manner, so I decided to get a second opinion.

The second opinion basically was to get a new oncologist. I ended up going all the way to a new medical group. It’s kind of a community, but more midland. I ended up going to a pretty old university teaching hospital afterward.

I found a better oncologist who again told me the same thing he did. There was no change.

Finding the right doctor

You definitely have to have someone who not just treats you as a patient, but more can be a friend, I want to say? Somebody you can tell everything to because you’re going to have to throughout your cancer journey. You have to definitely have a doctor that you jive with.

You want to be able to ask questions. With the first oncologist, I didn’t feel like I could ask questions. It was more like, “This is what you’re going to do and you’re going to like it.” And I didn’t really want that.

[I went to the] University of Penn [and saw] a hematologist with a specialty [in] lung cancer. He’s not specifically for lung cancer, but his specialty is lung cancer.

Open lines of communication

They make it so easy to get ahold of them. It can be at 3:00 in the morning and they’ll still answer you.

[My doctor, Dr. John Kosteva,] texts me and I can text him, [but] not very often. We also do emails and we have our patient portal where it goes directly to them immediately.

Importance of access to information and knowledge

You definitely have to self-advocate. I know there [are] smaller cancer centers out there in the world where you’re not close to a university hospital conglomerate. What I would say is do take the time to go to one, even if you have to travel, but also bring the information back to your smaller cancer center so that they know that that can be done.

Treatment

Treatment options

The first oncologist had basically told me, “We’re going to do Keytruda immunotherapy. That’s what we’re going to do and we’re going to start next week.” That was basically it, which I liked. I thought, “Oh, that’s nice.”

His personality didn’t work for me. It’s almost like he had seen so many people with cancer [that] it was more of a dollar thing than it was a feeling thing.

At this time, we did not know that it was MET amplification. At this point, we only knew that it was stage 4 non-small cell squamous. He said, “The gold standard is Keytruda. Just Keytruda, nothing else. However, there is a clinical trial,” so I had to make the choice of whether I wanted to do Keytruda or the clinical trial.

How did you feel about possibly joining a clinical trial?

My fear was being new to the cancer world. I had worried [about the] clinical trial being new and not really much known about it. Whereas Keytruda had some data behind it, so I knew the side effects.

She had explained to me the better choice would be to go with what’s already known, to try that out first, and that there’s always a clinical trial further down the line.

You’ll never know whether a drug works or not unless you try it. I figured at that point, that right there was my biggest thing, was you’re not going to know how it works until you try it.

My doctor had handed me the paperwork: one for Keytruda [and] one for the clinical trial. The clinical trial was actually a lot thicker than the Keytruda one.

The side effects that were for Keytruda were your normal digestive issues, rashes… [there were] some funny ones in there.

As it turned out, I ended up having hyperprogression, which is also a side effect [that] had happened to me.

Efficacy of the Keytruda treatment

I had heard about [Keytruda] because six months before, they had the ads on TV. It kind of pushed my thought that, “Wow, these people are doing really good. That’s going to be me. It just has to be me.”

The way they explain it is that a lot of people do very well on Keytruda. I don’t remember the same exact numbers, but it was high. It was high enough for me to say definitely. Try it for that.

Video
Amy G. 1st Keytruda infusion
Describe the Keytruda regimen

Keytruda was done by infusion. Every month, I would go into the cancer center and they would just infuse me with Keytruda. It took half an hour. It wasn’t long at all.

Right after the Keytruda, I would get a shot of Xgeva, which is a bone strengthener because, at this point, we had found out that I was starting to get bone mets so he didn’t want me to break any bones. The Xgeva was important as well.

What did you have to do before the Keytruda infusions?

Usually what they would do is they would do the labs to make sure that your liver and your kidney and everything is working like [they’re] supposed to [work]. Then I would see my doctor and after that, I would go to have my infusion done.

When did you start to feel side effects?

The first time I had the first infusion, I had a panic attack when I got home. I’m kind of funny when it comes to drugs [where] you don’t know what to expect, so I tend to worry about it and it caused my own side effects.

I had a panic attack the first time and then about three days afterward is when the GI problems would start. The rashes started about a month afterward.

What helped you manage the GI problems?

When I first started having the GI problems, I had texted [my doctor] and they have a nurse navigator there who pretty much will answer all the questions. They prescribed me several different types of nausea meds [as well as] several different diarrhea medications along with anything I could get off the counter. Basically, they would throw everything at it and use what worked.

The nausea medication worked fairly well, but I noticed that I also had a funny taste in my mouth. I ended up going and getting something called Tummydrops, which are peppermint hard candies, and [they] worked very well to get rid of the nausea.

It was funny because my mom had come up from Florida, so she was trying to take care of me. She would always want to feed me and I wanted nothing to do with eating anything. I’ll take a popsicle and that’s it.

I had this sugar rush for a while because all I could eat was ice cream popsicles. That’s the only thing my stomach could handle.

[That lasted] the whole time I was on Keytruda.

Describe the rashes

I had a rash on my chest and a little bit on my legs. They itched real bad. I ended up using Aquaphor, which worked well. I also had steroids, in case I needed to take that. I never really did because it never got that bad.

They would break open. Almost blistery type. [It was] more of a nuisance.

It never went away. It always stayed there until I stopped Keytruda. Once I stopped that, it went away.

Severe fatigue

[There was also] severe fatigue. But I couldn’t figure out if that was from the drug or from me not eating correctly. I wasn’t sure what it was.

My doctors were on top of everything. All the medication they thought I might have to have was already ready for me.

Other side effects

Another side effect I had — that I honestly don’t know if it was because of my age — it seemed that Keytruda stopped my period. I now had a weakened urinary tract, so I would pee. I would always have to wear diapers just so I didn’t do that.

The only other side effect I had, which was helped by something called Silvadene, was I did get burned. I did have [burnt areas] in my groin area. But the doctor previously had prescribed me Silvadene because they knew that might happen.

The good thing about my doctors is they were on top of everything. All the medication they thought I might have to have was already ready for me.

When did you learn about the MET amplification?

That happened on my last infusion of Keytruda. The doctor had decided to take some blood to do the biomarker testing to see if I had any.

The strange thing, he had told me, is that there usually [aren’t] a lot of people with biomarkers that have squamous lung cancer. I didn’t think anything was going to come back. It took a couple of weeks to get it back.

Back then, I think it was a 6- to 8-week wait till you found out. And that’s when I found out that I had MET amplification and I couldn’t have been happier.

What are bone mets (metastasis)?

[Bone mets] basically means the cancer is in your bones. It’s eating it. It’s the best way to explain it. They can break very [easily].

[I had] extreme pain. No amount of opioids or anything could help that pain. We tried. Nothing worked. The opioids did help to let me sleep more so I could avoid the pain sleeping but you still had that pain constant.

It is [really tough], especially where I had them. I had them in my femur. I started off with a cane, then I went to a walker, and then I ended up in a wheelchair. It was bad [for a] period of about a month and a half.

Side effects of Xgeva

Not that I noticed. The only thing was a pain in your arm… and it was pretty bad. It wasn’t your normal [when you’re given] a shot [and] it hurts. No, it was bad in the arm. But other than that, no side effects that I could tell.

If you have pain and you’re a cancer patient, get the opioids.

Opioids for cancer pain

On top of that, I was taking the opioids for my own metastasis. I was taking something called Xtampza, which is a long-acting oxycodone. I was taking oxycodone for breakthrough and I was also taking Ativan to help. There was a lot.

I had asked my doctor, especially about the opioids. He said in most cases, a lot of cases, cancer patients, especially stage 4, do not get addicted to opioids.

If you have pain and you’re a cancer patient, get the opioids. Don’t be worried about getting addicted. I never did and I was taking them 24 hours a day. I had no issue.

As for taking any other drug, it kind of comes with cancer. You have to try it and just know that there are doctors and medications that can help you get over that hump.

Video

Process of radiation therapy

The radiation therapy was about a month.

It was during the time I was on Keytruda, about [midpoint]. At the time, I had started getting a met in my femur. We didn’t know how bad it was, but the radiation was done on my hips and my femur at that time.

It was an easy process if you want to say. They build a mold around your hips so that you won’t move. There was no pain associated with the actual radiation itself [but] because of the bone met in my femur, the pain was incredible but had nothing to do with radiation.

[The radiation session] was every three days. [Each session lasted] about half an hour. It took me more time to put on a gown because I could hardly move. I was in a wheelchair. I couldn’t take my clothes off. My mom had to help me.

My doctor decided that Keytruda wasn’t working. We have to try something else.

Changing the course of treatment

What drove the decision to take you off Keytruda?

I was on it for three months and the catalyst was my third-month PET scan, which showed I had it everywhere. Besides my lymph nodes, I had it in my shoulder, I had it in my adrenal glands, my ovaries, my ribs, my fingers, my hips, my femurs, and one foot.

At that point, he decided that Keytruda wasn’t working. We have to try something else.

Dealing with the news emotionally and mentally

It was hard. Just based on how I felt physically, I thought that April of 2019 was my last day or last month on Earth. I felt so bad.

When the doctor told me that, I thought, “Well, that’s it. I might as well get everything in order. Do what I want to.”

Just tell me how long I have. That’s all you thought about. Constantly, 24 hours a day.

Amy G. tunnel

I had slipped into a severe depression. I had asked my primary care doctor to put me on antidepressants.

In the meantime, I was still on Ativan because that helped with my anxiety. They switched that over to something called BuSpar, which helps my anxiety as well.

It was not only physically did I think April was my last month. Mentally, I wanted it to be my last month. I was not only just in that amount of pain, it was the whole, “How long do I have?” Tell me that. Just tell me how long I have. That’s all you thought about. Constantly, 24 hours a day.

The antidepressants definitely helped to pick me back up and make me more hopeful.

I couldn’t sleep, even though I was forced to sleep. You didn’t really sleep well. There was no relaxing. I would go to the grocery store and say, “What’s the point of doing this? Why, why, why? There’s no point.” Even everyday things just seemed pointless.

The antidepressants definitely helped to pick me back up and make me more hopeful.

Was there anything else that helped with the depression?

The biggest thing that helped was Facebook. I found a bunch of lung cancer groups and there were people that had been through it. Same thing as I’ve been going through.

Over time, after I told my story and heard everybody else’s stories, my big driving force was helping others because I remember what it felt like to be diagnosed. To put it out there, to help other people get through that, and know that they have a chance really, really made my life more worthwhile.

I did nothing but sleep all day. Everything hurt.

Biomarker testing

How did you deal with the scanxiety?

I grew up with a mother who always told me that you can’t worry about things [where] you don’t know is going wrong. It’s only going to hurt you more than anything. I’ve always tried to live by that.

I don’t really have anxiety but waiting for the biomarkers was a little testing because, at this point, I had lost so much weight. I was down 40 pounds.

I did nothing but sleep all day. Everything hurt. I had a rash covering my chest, so I really needed to get off Keytruda.

Getting the biomarker results from the doctor

[My doctor] said, “It’s rare that squamous has a biomarker, but you have it. And the good news is that there is a drug that works for it.” I was so excited and I’m like, “Oh okay, how long do I have to sit in a chair?” He’s like, “No, it’s a pill. You take a pill, a pill twice a day,” and I’m like, “Oh, this is great!”

Then I said, “Okay, well, what’s the side effects?” He started explaining to me and I’m like, “All right, they’re not that bad. It seems like the Keytruda ones were worse.” I thought, “All right, I’ll try it.”

[The] fact that it’s a pill now just thrilled me to death because now I didn’t have to travel back and forth and worry about all that. I could take it at home. Best thing ever.

Targeted therapy

Difference in quality of life with the pill

When you tell people about it, they’re like, “That’s not possible.” Yeah, it is. Yeah, I take a pill. People that are new to lung cancer don’t know that there are pills that you can take to help keep it at bay.

Importance of biomarker testing

[Ask those questions], absolutely. I’m still trying to learn at what stage they will do biomarker testing because I think they don’t really want to do it on the stage one, stage two. Three and four, more than likely they will do it.

I’m hoping that they start doing that earlier because it makes more sense. But that’s out of my hands at this point.

Side effects of Crizotinib

The first week, I was put on 500 mg — one pill in the morning and one pill in the evening. I started having very bad GI issues again and I’m thinking, “Oh, here we go.”

My doctor got the smart idea. “Let’s cut you in half.” I said, “Okay,” so I only take one pill a day.

The only side effect I had, and I don’t know how to explain this, is if I went from dark to light, I would have like a trail. I could see the door going sideways for a little more than it should. I don’t know how to explain that. It was strange but I thought, “Oh, this is all I have to deal with. I can do this.” It only happens sometimes.

It does cause visual disturbances. They don’t really explain that so much. You could lose your eyesight, which I didn’t have that problem with, so I just had those trails.

It lasted for about a year.

[I told my doctor] and he said it was normal for Xalkori or Crizotinib. If it got worse or it became where I was starting to lose my eyesight, then we would have had to do something different.

I did [check in with an optometrist] because I had to get my eyes checked anyway. In the meantime, I told them about trails and that it was probably a side effect of my drug. They didn’t see anything in my eyes to say, “Okay, you’re going to lose your eyesight.” There was nothing there.

GI issues with Crizotinib

It was mostly vomiting and some diarrhea, but it ended up being diarrhea for like a day. Then it was constipation for days on end.

I tried everything — and I mean everything — to get rid of the constipation, which was harder than stopping the diarrhea.

[I tried] everything in the store. I tried prunes. I tried prune juice. I used to have milk intolerance or lactose intolerance, so I would drink massive amounts of milk, eat a lot of ice cream, thinking that’ll loosen it up. No, nothing, did nothing at all.

If you’ve ever seen raccoons when they have their babies, they tend to rub their stomachs, lick their stomachs. I was actually pushing on my stomach to get it moving, which worked but not easily.

The GI issues went away immediately along with all the other things.

SBRT and cryoablation

SBRT is stereotactic body radiation, which means you get stronger radiation to a smaller spot instead of the whole area. I had five SBRT sessions on my lung to shrink [the tumor], but we wanted to kill it. Who knows? It might be dead. It may not.

As for the cryoablation, that is interesting. You go into a bit of a twilight. It’s like three needles or so. They go in and they freeze the tumor on your adrenal gland.

It only hurt for a second, but when I banged on the table, the nurse knew so she upped my twilight a little more. I couldn’t talk. For some reason, the words wouldn’t come out, so I just thought I’ll bang on the table. So if you ever do encounter that, bang on the table.

I had no pain afterwards. There was no recovery time or anything to it.

The SBRT was done five sessions one time so it was over five days. Then the cryoablation was done once and that was a one-shot deal.

Responding to the treatment

In April of 2019, I thought I was gone. The first week of Crizotinib, it was a little rough. The second week, all of a sudden, I felt like a new woman. I had no pain, no lumps anywhere, and just felt like I did before I had cancer. I knew, at that point, that the Crizotinib was starting to work.

It’s such a great feeling to know that it worked that fast and even my doctor really couldn’t believe it. It doesn’t seem possible. But the fact that I could feel it. It wasn’t just my brain saying, “Oh, you feel better because you’re taking [medication]…” like a placebo effect. It wasn’t that at all. I knew I physically felt better. I mentally felt better. I knew. It was a good drug.

I could walk again. I was out of the wheelchair. [I could] eat and drink [with] no problem.

I felt like a new woman. I had no pain, no lumps anywhere, and just felt like I did before I had cancer. I knew, at that point, that the Crizotinib was starting to work.

Amy G. giant wooden chair
Feeling somewhat like yourself again

You have the hope. You’re thinking, “Wow, I physically feel like that or mentally feel like that. I can live like this. I can go about my everyday life and enjoy things again.”

I just kept calling it the miracle drug. Even my family, my family called it. They’re like, “Ame, you were stuck.”

I could not walk up the stairs to take a shower, so I hadn’t taken a shower for almost six months. I didn’t sleep in my bed. I slept on the recliner downstairs and only slept lying on my back because [of] my femur.

Everything was broken at the time. [I] had all the issues. But it’s [a] miracle drug.

I keep going and asking [my doctor] if I’m boring… He said I’m the fastest turnaround he’s ever seen.

Follow-up plan

Follow up with PET scans

[I have a PET scan] once every four months now. Back then, it was once every three months for a PET scan and then once every six months for a brain scan, for an MRI.

The PET scan, after being on Crizotinib for three months, came back and the doctor was like, “Look at this!” He showed me on the screen and he said, “This is what you look like before. Look what you look like now! This is gone. This is gone.”

I was just thrilled. I was like, “Oh, I knew it.” I said, “The way I felt physically, I knew it had to have been doing something.”

I’m mad that [my body] didn’t let me know before I had it, so I knew ahead of time to push my doctor more about the symptoms. When I think back now, the pain in my shoulder a year before I got diagnosed probably was a symptom of lung cancer [but I] didn’t know it.

Right now, I believe [they’ll be doing the brain MRI] indefinitely. The PET scans are now [every] four months. I did go up once and that’s indefinitely as well.

I’m stable. It hasn’t grown and that’s all I want to know.

Stable but not yet NED (no evidence of disease)

At this point, I still have a light up in my lung and a light up on my adrenal gland. But again, the doctor said that could be dead tissue or the radiation may still be working and we just don’t know. I’m stable. It hasn’t grown and that’s all I want to know.

I continue on Crizotinib until either it stops working or becomes toxic. Right now, I’m stable and I’m happy to say that’s what I am and I hope it continues to work. We’re on three years of stable, so that’s a great thing.

The Facebook page [of lung cancer groups], you tend to get attached to some people and you think, “Oh, they were diagnosed the same time I was.” Then you realize that they passed and you just don’t understand how they did when they had the same exact cancer as you. So to think that I’m alive is wonderful but sad in that effect.

I know [my doctor] talks to his tumor board regarding me. I don’t know how often. I’m assuming every time I have a PET scan, he’s like, “Well, she’s still boring.” We’re hoping — knocking on wood now.

Crizotinib’s been around for a long time. That was one of the first targeted therapies they had come around with, I believe it was maybe 2013 it came out. Could be wrong on that date, but it’s still been around for a very long time. But the squamous with a MET amplification is a shocker.

Never give up and always hold on to that hope.

Amy G. butterfly

Living life after a cancer diagnosis

You definitely have to enjoy every day; actually, every second. Even the bad stuff, you still need to enjoy it because it may not be there for long.
Also try not to be nervous about your scans. It’s not going to help anything at all and may actually make things worse. If you’re really, really upset and your anxiety is through the roof, definitely call your primary care doctor to have help with that.

Never give up and always hold on to that hope. If you don’t like an answer a doctor gives you, try another one. Get a second opinion. Get a third opinion. You have time. You just have to find the right doctor.

Just hang on to hope.


Amy G.
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1st Symptoms:
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Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



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



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



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



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



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



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



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
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Amy G.

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



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
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Cancers Chronic Lymphocytic Leukemia Leukemia Non-Hodgkin Lymphoma Obinutuzumab Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL) Venetoclax

Tamsin’s Stage C Chronic Lymphocytic Leukemia with 11q Deletion Story

Tamsin’s Stage C Chronic Lymphocytic Leukemia with 11q Deletion Story

Tamsin W

Tamsin was 47 when she was diagnosed with chronic lymphocytic leukemia (CLL), the most common form of adult leukemia. She’s a mother of two teenage daughters and owns a recruitment business with her husband. She shares what it was like to navigate getting a CLL diagnosis and going through treatment, especially during a pandemic.

  • Name: Tamsin W.
  • Diagnosis:
    • Chronic Lymphocytic Leukemia (CLL)
    • 11q deletion
    • Subtype of leukemia
  • Staging: C
  • Initial Symptoms: Out of breath, dizzy and nauseous every morning, tiredness, palpitations
  • Additional Symptoms: Shoulder pain, night sweats, inexplicable weight loss
  • Treatment:
    • Obinutuzumab & venetoclax

[Cancer] doesn’t define me… It’s taken over my life for the last year, but there’s so much more to life; that is one part of it.



Pre-Diagnosis

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Tamsin W. outdoors
What were the initial symptoms for you?

I was really out of breath… feeling dizzy and sick every morning. When I got up and went on a dog walk, I felt really nauseous but I just kind of got used to it.

The tiredness and palpitations, [they] all just started coming on. Maybe it’s my age [but] I’ve always been really fit and active, so I thought it was really weird.

I started going to the doctor about everything that was happening. It was over a period of time, but I got used to it.

How did it go when you first saw the doctor?

When I went to the doctor, obviously they were looking for something. They were concerned because also I had low iron… low ferritin. I was anemic for probably about six months.

They started by looking for cancer. They did an endoscopy [and] a colonoscopy, and then they sent me for a chest X-ray because I had palpitations.

I went private because some of it was during COVID [so] it was really difficult to get in and see the doctor.

Can you describe how your heart palpitations felt?

I work in recruitment, so it’s quite stressful. Always used to get up at half four, I’d start working, [then] go to the gym at half six. Sometimes I’d have really difficult conversations with candidates or clients.

I remember having one particular candidate. It was a difficult situation and literally, I had to lie down on the floor after I got off the phone because it was like my whole chest was coming in and out. I didn’t know what was wrong… but you just get on with it.

I was lying in bed and felt really ill, thinking, ‘I hope I haven’t got cancer.’

What was going through your mind?

When I was waiting for the colonoscopy and the endoscopy, it was during COVID, so it was taking forever. I ended up paying for it and going private because I was so frightened.

The day of the colonoscopy and the night before, you have [to take] loads and loads of fluid, which made me feel really ill. I was lying in bed and I felt really ill… thinking, “Gosh, oh, I hope I haven’t got cancer.”

I didn’t feel well at all. “It can’t be. It can’t be.” That’s what I was thinking. I just felt so awful. I was really scared that it was going to be that.

Then they didn’t find anything.

Tamsin. W doctor's clinic

Ruling out cancer

Because I was anemic, I think they were looking for a cancer mass. They were either looking in my stomach or in my colon. They were looking for an actual mass of cancer. They wanted to eliminate it.

That’s what they say, isn’t it? We’re going to put you on a pathway, but we want to make sure it’s nothing, not severe. Just to rule it out, that’s what they say. They just wanted to rule out that it wasn’t cancer.

You got great news! 

There’s nothing on the colon. We are so pleased. I had a little label [that] I stuck up on my board where my work is and the picture of my girls. If I had a bad day or didn’t feel well, I used to say, “Thank God I haven’t got cancer.” I’d look at my little label and say, “It’s all okay.”

Then they sent me for the chest X-ray and that came back clear as well. So that’s amazing. And then basically that was it.

I didn’t know what was wrong with me… I was exhausted and I thought, ‘None of you actually know how I’m feeling.’

But now what?

I didn’t know what was wrong with me. Then you think, everyone’s life is carrying on, I’ve just got to carry on. I carried on.

I was still working full time, training at the gym all the time, and I was pushing myself. People would say, “She can’t really be poorly because she wouldn’t be able to get up at half four in the morning, won’t be able to do the gym, wouldn’t be able to work.”

I was exhausted and I thought, “None of you actually know how I’m feeling.” But everyone says, “Oh, you can’t possibly be.”

What happened when you went to see a cardiologist?

They put a heart monitor on me for a week. They didn’t see anything that was untoward. There was only one little blip. They said, “You’re probably okay.”

I still [don’t] feel good, but I’ve had all those checks. Maybe it is just my lifestyle, the way I get up early, train, work all the time, kids… Everything.

I was still really tired and felt nauseous… had a pain in my right shoulder… and the pain in my groin.

Tamsin W. scan image

New symptoms

I was still really tired and felt nauseous. Then I got my lymph nodes up in my groin and I just put it down to overtraining at the gym.

I had a pain in my right shoulder. I did have a steroid injection to get rid of the pain in there and the pain in my groin. I went to the doctors, and they felt all the lymph nodes were up.

What kind of pain were you feeling?

It was in my shoulder blade. I thought I had been overtraining and it was just constant. It was painful the whole time. It was just always there, like a dull ache, and it hurt whenever I moved it. And that’s where the cancer was in my bone marrow, in that shoulder.

Then in the groin, it was really hard. My stomach was pretty rock hard. The lymph nodes were up in my stomach as well.

Night sweats

I got these night sweats and I thought, “Maybe it’s because we’ve changed the duvet. Is it my age?” All these things. Probably only four weeks of night sweats. It was very quick, right at the last bit.

Inexplicable weight loss

I’ve been doing lots of weights and everything [so] I had dropped a little bit of weight and the rest of it came off.

I remember going to Cornwall to see my sister and would eat loads of chocolate, ice cream, fish and chips, and everything. Came back and weighed in; I was seven and a half stone. I thought these scales are broken. Literally thought they were broken.

People were saying to me, “Blimey, you’re really skinny. What have you been doing?” And I said, “I’ve just been working out loads. I’m really tired. I’ve been working at the gym and working hard.” But I was really skinny and, everything wasn’t right. I didn’t feel good. It didn’t feel right.

Everything wasn’t right. I didn’t feel good. It didn’t feel right.

Tamsin W. blood tests

Diagnosis

“The” blood tests

I went to see a really lovely doctor that I’ve had for years. I said, “I am so tired.” He said, “Well, Tam, with your lifestyle, who wouldn’t be?” I said, “I know, I’m really tired, but my lymph nodes are up.” He felt those and I said, “I want a full blood count.” He said, “Okay, I think you’ll be absolutely fine.” I said, “Yeah, me too.”

Life was so good. We’d just moved into office accommodation. I’ve recruited a new person. [The] business was amazing. The girls were good [and] my husband, [the] family’s good. I know I’m going to be okay. I was absolutely sure.

He felt in my groin. He felt them up there. He felt under my armpit, didn’t feel them there, didn’t feel them in my stomach. He said, “I think you’ll be okay.” Literally, I ran out of the doctor’s surgery and thought, “I’m going to be okay.”

Getting “the call”

I was at work and I went to view a property and that’s when I got the call from the doctor’s surgery telling me to go in straight away to pick up a letter to go to [the] hospital that night. I got the call and I said, “I’m really busy. I’m actually at a property. I’m really busy.” She said, “You’ve got to come into the doctor’s surgery now.”

She said, ‘You’ve got to come in now and then you’ve got to go to [the] hospital.’

I felt really irritated because I didn’t want to have a call like this because I wasn’t expecting it and [she] said, “You’ve got to come in now because you’ve got to go into [the] hospital. You’ve got to go to QMC and they’ve got to rehydrate you because you’ve got something showing that you’ve got hypercalcemia.” I thought, “Well, what’s that?”

I said, “Do I have to come now?” She said, “You’ve got to come in now and then you’ve got to go to [the] hospital.” I said, “What? Straight to [the] hospital?” And she went, “Yeah, you’ve got to go straight to [the] hospital.” And I said, “Shall I wait for my husband?”

I just couldn’t quite believe it all. She went, “You’ve really just got to check in and get on your hydration as soon as you can.” So I drove straight to the doctor’s. She said, “I’ve got this letter for you to go to [the] hospital.”

I took the letter and I literally drove to [the] hospital. Rang my husband and said, “I’m going to [the] hospital. I’m going to Acute Admissions. Meet me there in a bit or I’ll ring you in a bit.” That was how kind of quick it was. It was just bonkers.

Tamsin W. daughters bring suitcase

I was really worried because I thought there must be something really wrong with me… I had a weird feeling.

What were your thoughts after getting the call?

I must have been so frightened. I remember ringing a friend on the way to [the] hospital and I just said, “I don’t know why they’re getting me in so quick.” I didn’t know what it was for.

I don’t like to Google anything but I’ve been driving… going literally from the doctor straight into town. I was really worried because I thought there must be something really wrong with me.

Also, it was one of my best friend’s 50th birthday and we were supposed to be going to Wales. I had a weird feeling. I just thought, “There is something really wrong with me. I’m not going to make it. I know I’m not going to make it go away.”

Then I checked in and they put me on the drip to get me rehydrated.

First hospital stay and more tests

I thought I was going to come home. Then they said, “We’re going to put you on a drip for 12 hours.” I was like, “Oh, my goodness, what? So I’m going to be here overnight? I haven’t got anything on me.” I had to ring Mike and the girls, and they brought my suitcase in and they found me. It was like an admissions ward. There are about 30 people in there.

I saw a doctor and a whole load of trainee doctors. They did an examination of me and then they said, “We’re going to run a load of tests tomorrow.”

I still didn’t really know what I was in for. I kind of knew. I’m sure they must have said we’re going to run some tests to see if it is what it is. But it was surreal. It was like someone else’s life.

Tamsin W. scan

It was surreal. It was like someone else’s life.

Getting the diagnosis

In the morning, they came in and said, “We’re going to test you. Do your [blood tests]. Put you through a scanner. We’re looking for blood cancer or lymphoma,” or whatever they said.

I was in this bed with the curtains around me and I thought, “Oh, my goodness.” Then I told my family everything.

They did all the tests and said they’d get back to me in the morning because I’d gone and had these tests quite quickly. I thought by lunchtime they’d let me know and they hadn’t.

I’ve been on my own the whole time and I was really fed up because I hadn’t had my results. I actually knew someone that worked at Queen’s Medical Center — he was a surgeon — so I texted him. He came down, sat on my bed, and talked to me for a bit, so that was nice.

Then [the doctor] came through and she said, “We’ve run your [blood] and you have got blood cancer and we need to carry on testing you so we’re going to be keeping you in. Is there anyone that you’d like to ring?” I said, “I’ll call my husband now then.” So I did.

You can’t sugarcoat it. I’m really direct and I like things in black and white.

The first thing I said is, ‘How long have I got? Have I got three months? Have I got six months?’

Initial reaction to the diagnosis

I think the first thing I said is, “How long have I got? Have I got three months? Have I got six months?” I’d never had blood cancer. They didn’t know what cancer it was.

They said they’ve got to do lots more tests on me, bone marrow and all the rest of it. She kind of said, “It’s not like that, but we’ll let you know. We’ll get on with everything. We’ll transfer you from this hospital, and then you’ll be an inpatient and they’ll get on with everything.”

I don’t know initially what I thought. I just didn’t know what to expect. As soon as you get a cancer diagnosis, you think, “That’s it.” But they were really good when they moved me over to the other hospital. I met one consultant and then I met my [CLL] consultant. Then it felt better.

Tamsin W. support system

What helped get you through that time?

It was just getting through every day. I slept in one night and I remember speaking to a friend. I Facetimed her and she said to me, “Oh, my God. You look awful. Just do your hair and get your makeup on and crack on with it.” And I thought, “You know what? That’s it. I can never be a mess.”

I’ve had [an] allergic reaction so I have looked horrendous after I initially had Obinutuzumab. But I told myself, “I’ve just got to get on with it every day and I’ve got to put a smile on my face and just crack on with it, with everything.”

When bad things happen, I’ve got to do that and that’s really what I’ve done. For my girls. I didn’t want them to see I’m not going to go to pot over it. I’m not going to fall apart. I can’t fall apart because of it.

I told myself, ‘I’ve just got to get on with it every day and I’ve got to put a smile on my face.’

I’m not going to fall apart.

Finding out what’s important

At the time, I didn’t want my whole life. I couldn’t go to work. My husband had to hand his notes in at his job so he could run the business. Overnight — because I had [to] stay in [the] hospital — I had to suddenly let everything go.

All of a sudden, the most important thing in the world was — when they let me out the first weekend — just seeing the girls and coming home and family. My other half, my dad, his partner, and talking to family. You suddenly realised what is really important.

I’m really competitive at work. I’m competitive in lots of different ways and I strive for more all the time. Then all of a sudden, it came down to what’s really important.

A lot of the time, I get grateful every day for being alive and that’s how I start my day.

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Tamsin W. monitoring
Processing your emotions

It’s really difficult, isn’t it? A lot of the time, I get grateful every day for being alive and that’s how I start my day. Remind myself that I’m really lucky because it might not have been like this if I hadn’t been diagnosed. It wouldn’t be like this.

Then on the other side, the hard side, I had allergic reactions with Obinutuzumab that brought my whole body out, an enormous rash. I had to have an ambulance out because they thought my throat was closing up. Those times, you feel absolutely on the floor and I won’t go into it too much because I’ll end up crying for ages.

Lowest point

There are really dark days and there were really bad times. But I did reach out when I felt really, really bad because there were some days that I just thought, “You know what, I’m not going to do this anymore.”

I did reach out, but I’ve never felt like that before. And thank God I haven’t felt like it recently, but those days, they do come.

Also with COVID and shielding, I felt like I’d given up my business. There’s one day [when] Mike drove off, driving my car to my workplace with my girls in the office. But then I’ve got a different life today. I do work. At the time, it was just really hard.

There are really dark days… there were some days that I just thought, ‘You know what, I’m not going to do this anymore.’

Getting help

I did reach out to Macmillan Gateway in Nottingham when I had those days where I didn’t think I was actually going to… I didn’t want to do it anymore. That was my lowest and no one would understand — unless you’ve been there — what it’s like. It’s really, really just awful.

We have Macmillan’s Nurses, but there was another one called Macmillan Gateway that was a charity and it’s based where I live in Nottingham. I just rang them up and I said how awful I felt.

It was the first time I’d said it and it took me months to say it… I just didn’t want to carry on. I reached out and they were really good. They then gave me some sessions with someone on Zoom and then I noticed my improvement.

I just had to find ways around everything, like ways around shielding. How I could go out and see people and just everything with things with work. I have had to find different ways of coping and getting around situations, like being able to see friends.

I used to love going out and then all of a sudden, you’re stuck in because you’ve got no immunity and [there’s] COVID. It was hard.

When I was down there, I couldn’t see a way out… Everything was really difficult.

desperate
How bad did it get?

[I] just basically [wanted] to take an overdose. [It’s] just not wanting to wake up.

You can’t really talk to any friends or family about it because no one gets it. Everyone’s trying to be really positive and upbeat. Everything is being done to help you. It’s all really good, which it is.

I’m absolutely eternally grateful for all of that help, the hospitals, everything, and my consultant nurses.

But that feeling of everything’s disappeared overnight… I don’t have that life anymore. I’ve got to live this life. Do I want that life? I do want that life today. That’s the difference. I do. But when I was down there, I couldn’t see a way out.

I was just at the beginning of all the treatment, the allergic reactions, and feeling awful. Also, I was on a lot of painkillers and steroids. My body’s never had loads of stuff like that and it’s going to have its toll on you.

I just felt everything was hard. Everything was really difficult. I’ve never felt like it before.

I got help. I’m just really grateful for the people that were there.

The importance of a support system

I did reach out and I got help. I’m just really grateful for the people that were there. It’s got to be professional people that will be able to help you because no one else understands that.

I’ve got a really good blood cancer friend and she gets it. Someone else with a similar [diagnosis], if they’ve got blood cancer or other people like those.

A really lovely guy [who] came and fixed the windows, he’d had another blood cancer. You get it if you’re in the same exclusive club. The cancer club. It’s always good to talk to other people with cancer that’s been through treatment.

When I went into [the] hospital and with my allergic reaction — because I kept having to go back in — they were going, “Oh, yes, you’re the one with the allergic reaction,” because I had it so badly and no one had had an allergic reaction like that recently. I knew it was pretty rough.

I think the mental side of it, the leaving [and] having to step back from work and step back from my whole life as I knew it overnight. It was just gone, from Thursday through to Friday, it had disappeared and we had to move really quickly. My husband got into the business so that was great.

The most important thing was the girls, really, they kept me going. That’s it, isn’t it? Family, friends.

Tamsin W. daughters

Breaking the news

How did you tell your children?

I was in [the] hospital Thursday, Friday, and then they let me home Saturday morning. [When] Mike brought me home, we sat in the kitchen and I just said to him, “I just basically have to be honest, I wear my heart on my sleeve. And also I’ve got to tell them that I’m having a load of tests next week.”

I’ve always been honest and I’m really straight down the line. If I think something, I’ll say it. I am really straightforward and I just kind of said it how it is. I said, “You know what? I’m going to do everything I can to keep on going.”

I didn’t know at the time that blood cancer can be treated over a long period of time. I felt like, “Oh, I’ve got to fight it.” I don’t feel like that now. But I said, “I will fight it and I will do my best and I will.”

I tried to reassure them, but it was awful. There [were] a lot of tears. It was really, really sad. And it was tough, really tough. It was horrible. It’s something you never want to have to do. But you do have to do it.

I think for me, just being they were teenage girls, just to be honest with them. I’ve always been the way I am. I think that was the easiest way for me to be just straight down the line.

Mike had to ring round my family because I couldn’t speak to anyone. When I was in [the] hospital, I couldn’t do it. They all knew the results were coming in so he had to sit in the car and ring everyone. So that was tough for him.

I tried to reassure them, but it was awful… There [were] a lot of tears.

Being open about the diagnosis

I told everyone [because] I had this thing in my head that if we talk about stuff, it becomes less scary. I share everything to do with work and my personal life.

One of my friends [said], “Why are you going to share that on Facebook and Instagram [with] your clients and stuff?” I said, “Actually, all my friends know and all my clients and candidates to me are friends. And if I make this less scary for my daughters and all my daughter’s friends can talk about it, and everyone talks about it as if it’s normal rather than it being, ‘Oh, my goodness, she’s got blood cancer.'”

I just thought, if we can all talk about it, then that’s the best thing. Then the people in the community can help support the girls, their friends can, and the mums and dads… and that’s what they did. They picked up the girls. I think, for me, just say it how it is.

If we talk about stuff, it becomes less scary.

Tamsin W. specimen

Testing

What’s the lymph node biopsy like?

It’s like a little puncture and they take a tiny bit out. So it hardly takes any time. It was all right. [Like a] local anesthetic. Just an injection. Then literally it’s over and done within 3 seconds.

What was your experience doing the bone marrow biopsy?

The first time they did it, they did it when I was a patient in the ward in the hospital. They said, “We want to do it quite quickly, so we’ll do it on the ward. But if you want to do it as an outpatient next week or whatever, then you can come back and you can have gas and air.” And I was like, “Oh, gosh, no, I just want it done.” So they said, “Okay, well, we can’t give you any relief or whatever.”

There was the doctor and someone else and [the procedure was done] without any gas and air. I lay on the bed and I’ve never felt anything like it. That pain was just unbelievable.

I was in labor for about 48 hours with my first daughter, but that was then a C-section. But this pain, pulling it out was horrendous. It took about 25 minutes to get it out, so that wasn’t very nice. But when I had it done again, later on, I had gas and air, so that was fine.

Treatment

The first doctor’s meeting

I can remember going in for the first meeting… [taking] my notepad and pen and all my questions. I wish I’d got that now on me because I’d be able to tell you what I asked.

[My concern] was how quickly I could start my treatment. It was all new to me. They literally gave me a booklet on chronic lymphocytic leukemia to read because it was all brand new.

Then they also said then that they were looking at my DNA to see what deletions I’ve got and that would determine which drugs I would start on in August. They still had to wait for that. They’d given me the diagnosis.

There were so many questions.

I’d ask questions like, “How long am I going to live?” “How long remission do people get?” I didn’t really understand… “Could I have a stem cell transplant now? Could I have that done now?” But you can’t. That’s the last thing that you have done if you can be treated with drugs.

There were so many questions. I didn’t understand much and I don’t think I took very much in either.

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Tamsin W. CLL specialist
Finding a CLL specialist

When I was in the hospital and they were doing all the tests on me, my [CLL] consultant, Dr. Martinez Calle, was my consultant from the get-go. He was the second consultant I saw and that is literally who I had from the beginning.

I remember saying to him on the ward, “Are you going to look after me there?” I want to know who’s going to be looking after me because I had seen so many people over such a short period of time. I kept writing all their names down because you just really want someone to be responsible for you and to know that if you’ve got a problem, you know who’s going to deal with it. So right from the get-go, I had my consultant.

What were your treatment options?

There were two. There was a FLAIR drugs trial that I could have done if I didn’t have my particular deletion or there was the Obinutuzumab and Venetoclax.

Venetoclax was approved about four or five years ago, and Obinutuzumab and Venetoclax have got the best results for CLL.

With the prognosis, if it was traditional chemotherapy that I would have had, then with my particular deletion, I think I would have had a worse prognosis. Whereas with these modern drugs, your prognosis is as good as someone without a deletion. I’ve got [as] good a chance as anyone else.

With these modern drugs, they haven’t got all the ten years to say, “Oh, well, so many people get to five years.” On the old medicines, 80% get five years without needing further treatment. There were options, but there weren’t any options when I got my results back. I literally knew what I was going on.

I wanted to know how effective it was and what the results were, what my life expectancy was like.

Tamsin W. infusion pump
What was your reaction to your treatment plan?

There are different choices if you don’t have certain deletions, but if you do, then this is the option that will go down. I wanted to know how effective it was and what the results were, what my life expectancy was like.

I was joking. “Oh, are you going to cure me? Will I last the 20 years?” I think he thought I was a bit bonkers because I asked all kinds of funny questions.

He is really good. The thing is, I wanted answers. Am I going to live forever? And it’s not curable, it’s treatable, and that’s what I had to get my head [around]. I was really scared that I wasn’t going to last very long.

Consultants, they are how they are and they just say it how it is, which I like. He didn’t have all the answers that I wanted because I want to live for a really, really long time and I don’t want to have cancer.

Tamsin W. treatment plan
What was your treatment pathway?

I was asking what the plan was and why couldn’t I have the transplant straight away. He was saying, “This is what we would do.” He went over it. “Venetoclax, Obinutuzumab, and then when it comes back again, then you can do this. Or if that doesn’t work, well, then we couldn’t do that.”

When I was allergic to Obinutuzumab, they thought they were going to switch me on to an older drug, which they didn’t. But then they got it. I had [an] antihistamine infusion and steroids and all sorts before I’d have my infusion, so I was okay. We didn’t have to swap. But he explained it.

Tamsin W. treatment
Starting treatment

In the beginning, I was on Obinutuzumab from August until the end of December, that was it. Five months and it was quite close together in the beginning. I think it was weekly and then it went further out, spread apart to monthly.

The Obinutuzumab, the first time I had it, they do a tester of 3 hours putting it into you. Then after that, literally I was in about 8 hours, so it was quite a long day on the drip.

I was super organized. They used to laugh because I’d take a massive bag. I’ve got all my food in there, my drinks, my mobile phone charger, a book… I was always on the phone the whole time I was in there.

The Obinutuzumab and Venetoclax, I started in August. You start on 100 mg for a period of time. Then they test your blood. Then they go [up to] 200 [mg], then they ramp it up 300 [mg], and then they go again to 400 [mg]. So I’m on 400 mg daily.

They have to test your blood because Venetoclax breaks down the cancer cells so quickly and you literally wee it out, so it can damage your liver and all the rest of it. They keep a really close eye on your blood. I was in and out at the beginning when they were increasing it three times a week to have my [blood tests] done.

The first time, it was just a few hours then it went up to 8 hours. It was always a whole day of Obinutuzumab. It was weekly and then it went kind of monthly and then finished. It wasn’t too bad, to be honest, after they got the allergic reaction under control.

My whole body was kind of all swollen. I felt like my throat was closing up… That was really scary because it felt like I was being suffocated.

Tamsin W. allergic reactions
Did you feel any side effects with Obinutuzumab?

My whole body was kind of all swollen. I felt like my throat was closing up, so that was pretty bad. That was really scary because it felt like I was being suffocated. That was really horrible.

I feel more tired now at this stage than I did in the beginning. I think you’re in complete shock because I went straight into treatment so I was running at 100 miles an hour at everything anyway.

I didn’t really feel that tired. I felt tired when I first got diagnosed. But then once I started treatment, I wasn’t as tired.

Did you feel any side effects with Venetoclax?

No, not at all in the beginning.

At the moment, I’ve had a sore throat for about eight weeks. I don’t know whether that’s that or just because I’m a bit run down maybe. I’m not really run down, but because you don’t really have much immune system, you kind of don’t know whether it’s the drugs or whether it’s just me.

Post-treatment

Follow-up protocol

They’ll [check the minimal residual disease and do another bone marrow biopsy] after I finish, which is at the end of June and then my appointment back at the hospital is July the 12th.

Then I go to three monthly [blood tests], so they’ll keep a check on it then. I think, that will be it. Hopefully.

I was 0.0045% when they did it out of 500,000 and now they’re going to do it out of a million when I go back. They’ll see hopefully it’ll have gone down because that was [in] December-January [when] I had it done and now it’s going to be the end of June or July so it’s a lot further on. I hope it will be even lower than that. Then I think it’s literally just every three months. Then I’m going to be looking out for symptoms.

In a weird way, I can’t wait to party and celebrate when I finish my treatment.

Tamsin W. with friends
Preparing yourself for life post-treatment

I’ll be honest. Because I’ve got this sore throat, I’ve got a biopsy in July on my tonsils.

In a weird way, I can’t wait to party and celebrate when I finish my treatment. I’m going to see all my girlfriends, so that’s going to be good. Then it’s just living.

I have got a lot of energy, but hopefully once I finish the drugs and it kind of comes out of my system a bit more… I know with Venetoclax it can build up. [In] the beginning, it’s like that, and then towards the end, it’s gone up, so I know that I’m almost there. I’m almost finished.

Towards the end of my treatment and in August, I’ll probably be quite tired. I hope that I’ll get a boost of energy because I’ll be off the drugs that I’ve been on for absolute ages. 

Tamsin W. sunflowers
Feeling hopeful for the future

I hope that I’ll have more full energy and I hope that I’ll just live in the day. I tend to live in the day a lot. I am really grateful in the morning and I live every day as if it’s… Not my last day, but I really appreciate everything.

Everything means so much more when you’ve got cancer, doesn’t it? All those special moments.

I used to cry before. Now I cry even more so. I always cry at things like new babies. I can’t help myself. I love new babies, but everything means so much more.

When the girls came out for a walk with us, they said, “Oh, I bet this is the best day of your life, isn’t it?” And I said, “You know what? Yeah, it is, actually. Yeah, it is. Yeah, I love it. You know, it’s really good.”

I don’t want to think about cancer, I don’t want to think about it. But I also need to get my neutrophils and everything back up. And that’s a long-term thing, isn’t it? With blood cancer, you have low immunity.

Everything means so much more when you’ve got cancer, doesn’t it?

Any advice you can share?

I just think live every day as if it is not your last, but enjoy everything. Take every opportunity.

I always think fake it to make it. A lot of days, you can just pretend you haven’t got cancer and forget about it. Especially with a chronic disease, just get on with life and live it.

It doesn’t define me. I know it’s taken over my life for the last year, but there’s so much more to life; that is one part of it.

Just go out there and grab everything and all the people you love. Keep them close to you and just live life. You just have to live your best life every day, don’t you?

Enjoy everthing. Take every opportunity… Especially with a chronic disease, just get on with life and live it.


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