Author: Katrina Villareal

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

Post author By Katrina Villareal
Post date September 15, 2022
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Dan’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

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

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

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

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

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

Pre-diagnosis

Introduce yourself a little bit

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

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

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

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

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

Initial symptoms

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

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

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

Diagnosis

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

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

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

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

Receiving the news

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

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

Thinking about your children

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

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

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

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

Getting the official diagnosis

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

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

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

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

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

Reaction to the diagnosis

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

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

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

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

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

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

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

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

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

Patients share how they reacted to a cancer diagnosis »

Treatment

Radiation and targeted therapy

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

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

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

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

Undergoing radiation and targeted therapy again

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

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

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

Importance of biomarker testing

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

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

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

Advocating for yourself

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

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

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

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

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

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

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

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

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

Targeted therapy

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

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

How does Medicare cover cancer? »

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

Eating healthy during cancer treatment »

Side effects from Alectinib

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

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

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

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

Everybody needs advocacy. Everybody needs a platform.

The White Ribbon Project

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

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

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

Find out more about The White Ribbon Project »

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

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

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

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

Dan W. and family at Links for Lungs Foundation event

Sharing your cancer story from a father’s perspective

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

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

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

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

Living with cancer as a parent with young children

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

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

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

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

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

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

Being involved in the children’s lives

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

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

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

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

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

Inspired by Dan's story?

Share your story, too!

Non-Small Cell Lung Cancer Stories

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

Symptom: No apparent symptoms

Treatment: Lobectomy of the left lung

Dave B., Neuroendocrine Non-Small Cell Lung Cancer, Stage 1B

Symptoms: Two bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

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

Symptoms: Respiratory problems
Treatment: Chemotherapy (cisplatin & pemetrexed), surgery (lobectomy), microwave ablation, SBRT radiation

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

Symptoms: None; unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

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

Symptoms: Numbness in face, left arm and leg

Treatments: Targeted radiation, targeted therapy (alectinib)

The White Ribbon Project

Lung Cancer Awareness

Lauren C.

Symptoms: Chronic wheezing, difficulty breathing, recurrent pneumonia and bronchitis
Treatment: Video-assisted thoracoscopic surgery (VATS)

Dr. Michael Gieske

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

Heidi Nafman Onda

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

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

Tags Lung Biomarker Story

Medical Experts Myeloma Oncologist

Dr. Vincent Rajkumar

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

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

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

The interview has been edited only for clarity.

Table of Contents

Introduction
Initial reaction to the cost of prescription drugs
Impact of drug prices on patients and families
How did we get here?
Negotiating drug prices
The rationale behind drug pricing
Drug price disparity
Knowing your options
Advice for patients and families

Introduction

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

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

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

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

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

Initial reaction to the cost of prescription drugs

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

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

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

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

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

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

Impact of drug prices on patients and families

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

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

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

How did we get here?

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

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

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

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

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

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

Negotiating drug prices

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

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

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

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

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

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

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

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

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

The rationale behind drug pricing

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

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

The second is that the drugs are really worth the price and that’s how much they are worth.

The third would be that if you give this kind of power to Medicare, what if they ask for an unreasonable price? What if they are willing to walk away and set a price that is just completely not going to work for pharma? Those things have to be worked out. I think the fact that they’re not going to start negotiating for 7 [to] 11 years means that companies can make their money in that period anyway so those fears are overblown.

I also feel that if companies recognize that there is more money to be made with a blockbuster drug, they will innovate compared to [knowing they] can sell any drug for $100,000 because there is no ceiling so there is no value-based development of drugs. We have to incentivize that. If the drug is truly great, we are willing to pay more and, on the other hand, if the drug works only for a week, don’t ask me for $100,000.

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

Drug price disparity

Stephanie, The Patient Story: Not all things equal. You also pointed to the fact that depending on which pharmacy you go to, there’s a huge difference so there’s a little bit of control for patients in a sense. Can you talk more about that?

Dr. Rajkumar: I’ll be the first to say that we have a whole supply chain — the pharmaceutical company selling to the wholesaler, the wholesaler selling to the retail pharmacy, and then the patients paying their premiums to insurance companies who contract with pharmacy benefit managers to decide which drug to cover and which drug not to cover. Pharmaceutical companies can pay rebates to insurers. It’s a complicated system.

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

What we find now is that there’s virtually no product other than prescription drugs where — it’s not like I can go and find a new MacBook Pro for $10 at some company and $5,000 at Apple. It just is not there. But you can find, [as] I posted on my tweet thread, [with] Gleevec or Imatinib, the brand name is $10,000 a month and you can find the same Imatinib at $39 at Cost Plus Drugs. You don’t see that kind of spread anywhere else with any other product. It’s happening because there are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.

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

Stephanie, The Patient Story: No, the disparity is quite large, actually. When you talk about how prescriptions are written, what do you mean by that?

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

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

Stephanie, The Patient Story: That’s incredible. This is a naive question, perhaps, but I think one that [many] of us are going to have. With the regulation, you’d think that there is some oversight in this process. I know it’s very convoluted. We don’t have to get into every little nook and cranny, but where is the oversight? How can there be such a disparity going from point A, which is the same, but in 100 different locations? It’s just all over the map.

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

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

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

After I posted a tweet, people were posting, It cost me $250 with insurance and $10 cash. Then why have insurance? Unfortunately, even physicians are not aware of all of the disparities. I think it’s just education, letting patients know all of the resources available, whether it be GoodRx [or] Cost Plus Drugs. I don’t have any affiliation with any of these people. All I’m trying to do is just educate people that there is a wide disparity in prices. You must be aware of it. Just check. Make sure your physicians check.

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

Knowing your options

Stephanie, The Patient Story: That’s incredible. When you said sometimes cash is going to be cheaper than using insurance, would it have to be another party like GoodRx or Cost Plus Drugs or at the pharmacy itself?

Dr. Rajkumar: At the pharmacy. You could print out or show the GoodRx coupon or you could just do [it] online with Cost Plus. Many, many people are finding out that just going to Cost Plus Drugs and getting the generic might be much cheaper than paying the coinsurance and that shouldn’t be that way. It just doesn’t make sense.

Our healthcare system is very complicated and it is unnecessarily so.
Dr. Rajkumar

Advice for patients and families

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

Dr. Rajkumar: I just want patients and families to know, number one, people are taking notice and people are aware. I’m really, really happy that the law was changed. That caps their out-of-pocket expenses for Medicare. It caps the price of insulin for Medicare recipients to no more than $35 a month. We have capped any price increases due other than proportional to inflation. Unreasonable price increases cannot continue for Medicare drugs.

Negotiation will happen. There [are] people who are becoming aware that this is a problem and have decided we have to change. People like me, Patients for Affordable Drugs, [and] many others are now taking notice that the others in the system are not playing well — pharmacy benefit managers, wholesalers, pharmacies — and we have to advocate for reform in that area.

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

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

Stephanie, The Patient Story: The easiest way of comparing the prices [is] going to Cost Plus Drugs or GoodRx to see what the prices are at different pharmacies.

Dr. Rajkumar: Exactly. Then they can check what are they paying out of pocket with insurance. It’s complicated because they may have a deductible that they have to meet with the insurance company and they may say, “I’ll just pay the $250 because then after that, I don’t have to pay anything.” There [are] a lot of things. Our healthcare system is very complicated and it is unnecessarily so.

Stephanie, The Patient Story: Tackling it one day at a time, one thing at a time. Also with people, not just Mark Cuban, but like you. You’re a leader in the space and you have the ability to impact and pull ears. I appreciate you and I’m hoping that we can do more of the same here with The Patient Story.

Cancers Cytoxan (cyclophosphamide) dexamethasone Fludara (fludarabine) Ibrutinib (Imbruvica) Immunotherapy Lymphoplasmacytic Lymphoma/Waldenstrom Macroglobulinemia Non-Hodgkin Lymphoma Radiation Therapy Relapsed and Refractory rituximab (Rituxan)

Pete DeNardis’s Waldenström Macroglobulinemia Story

Post author By Katrina Villareal
Post date August 29, 2022
5 Comments on Pete DeNardis’s Waldenström Macroglobulinemia Story

Pete DeNardis’s Waldenström Macroglobulinemia Story

Pete DeNardis was diagnosed with Waldenström macroglobulinemia (WM) at 43. It is a type of non-Hodgkin lymphoma and is a rare cancer that begins in the white blood cells.

He shares the importance of educating yourself about your disease, communicating with your disease community, getting a good support system, improving your quality of life, and being your own advocate.

Name: Pete DeNardis
Diagnosis:
- Waldenström macroglobulinemia
Initial Symptom:
- Irregular blood test results during a regular workup for Crohn’s
1st-line Treatment:
- Cladribine
2nd-line Treatment:
- Fludarabine
- Cytoxan
- Rituxan
3rd-line Treatment:
- High-dose Cytoxan
- Dexamethasone
- Rituxan
- Radiation
4th-line Treatment:
- Rituxan (short-term maintenance)
Ongoing Treatment:
- Ibrutinib (December 2019 to June 2022)
- Zanubrutinib (started July 2022)
- Monthly IVIG

If you see one Waldenström patient, you’ve seen one Waldenström patient because we’re all different. We have the same disease, but our bodies behave differently.

Table of Contents

Pre-diagnosis
Diagnosis
Initial treatment
First relapse
Second relapse
Dealing with neuropathy
Finding a new tumor
Living with Waldenström

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

Pre-diagnosis

Tell us about yourself

I live in the United States, in Pittsburgh, but I was born in Italy, came over when I was six months old, and got my citizenship when I was six years old. I had your basic American upbringing [and] had a little bit of Italian spoken in the household. I was bilingual initially and still retain some of that.

I’ve been working as an accountant for a long time. I gravitated towards working in financial systems because I also like playing with computers so I’m sort of a financial systems analyst, a hybrid of sorts.

I have a family and three kids. Two of them are married and two grandchildren came in the past year and a half.

Initial symptoms

At that time, I had just started a new job. I decided to change careers. A lot of people do that after they get cancer; I did it before and I decided I wanted to teach full-time. I was teaching part-time for a while and I got an opportunity to teach at Penn State’s Beaver Campus.

I was setting up classes and working during the summer. I was in this little office, like a closet. I started to feel tired. I thought, I’m just working too hard, trying to try to learn how to do all of this, and also prepare materials for classes.

Then I started having severe nosebleeds, but I thought, I just have a cold or something. They were pretty serious nosebleeds. It was very difficult to stop them, but for whatever reason, I was on that work train and wouldn’t stop.

[My gastroenterologist] called and said, ‘Did you ever call that number that I gave you?’ I said, ‘No, I got busy, I forgot.’ But he said, ‘It’s really important that you call that number right away.’

It was so bad that I would end up with blood going down my shirt from the nosebleed. I would wipe it up or try to hide it at least and then get the heck out of there. But it happened fairly frequently so then I thought, something’s going on, but I’m too busy. Every once in a while, it would stop so I didn’t think anything of it. It’s a pretty good flow coming out of your nose, which is not normal even for someone who normally gets nosebleeds.

I also had a colonoscopy because I have Crohn’s disease so I do that every couple of years. Part of that is the blood test workup. At around the same time, my gastroenterologist called and said, ‘I saw some funny numbers.’ He might have said elevated protein, but it didn’t mean anything to me at the time because I didn’t pay attention to that stuff and I ignored it.

Three months later, he called and said, “Did you ever call that number that I gave you?” I said, “No, I got busy, I forgot.” But he said, “It’s really important that you call that number right away.” He didn’t say anything else.

Initial hematology appointment

I called the number and the receptionist said such and such hematology clinic. Right there I thought, “Oh, something’s up here. I don’t know, but this doesn’t sound good.” We made an appointment. My wife and I went and we did blood work.

We got to meet with a hematologist and he said, “Based on your blood work, it appears you have some type of lymphoma. I’m not sure what it is. We can do the bone marrow biopsy right now if you want, or you can schedule it.” I said schedule, but my wife, being my very important caregiver, said, “No, we’re doing it right away. I don’t want you putting it off.” We did that right there.

Bone marrow biopsy

It was an interesting experience, to say the least. They did numb the area, but I was not sedated — a bit uncomfortable, put it that way.

‘It appears to be a rare form of cancer that’s not curable. You should really think about getting your affairs in order.’

Diagnosis

It takes a couple of weeks to get the results. We went back to see him and he basically said, “I’m not certain, but it appears to be a rare form of cancer that’s not curable. You should really think about getting your affairs in order.”

Getting a second opinion

We were in shock, but we sat back and said, “Okay, I’ve already had one chronic illness. Let’s add another one to it. Let’s move on. There’s got to be something we can do.” We said, “Okay, I appreciate your opinion, but can I get a second opinion? Because I can’t believe that I can’t do anything about it and I’m going to die in six years.” He did say, “Well, that’s your prerogative and that’s your opinion. I’ll be glad to give you the name of someone else who’ll probably be more than willing to treat you right away.”

I thought, well, that’s an odd attitude to take, so I’m glad that I’m getting [a] second opinion. The doctor that he sent me to was actually a pretty good doctor. Right away, I had a good relationship with him and that’s when I started treatment, right away at that point.

‘I appreciate your opinion, but can I get a second opinion? Because I can’t believe that I can’t do anything about it and I’m going to die in six years.’

Deciding to get a second opinion

It’s important, especially when you have a rare form of cancer, to seek out those centers of excellence if you can. If you can’t afford that or can’t travel to it, go to a larger research university-based hospital. Fortunately, I live close to one in Pittsburgh. We have the University of Pittsburgh. We have a lot of research going on there. I was able to go to both hospital systems that I can go to. They both have noted researchers there so that makes a big difference.

If you go to a community hospital — I’m not denigrating the hematologists or the cancer doctors there — but they may not even see a person with my disease in their whole career. It’s important to get in touch with a doctor that has experience with your disease or can consult with other doctors in their practice that do have patients with your disease.

It’s important, especially when you have a rare form of cancer, to seek out those centers of excellence.

That first doctor had that attitude and maybe he was right, but that attitude of I know what I’m talking about so don’t question me. Even his staff, when I would call and say, “Hey, why is he requiring this test?” Or “Why does he want me to do this?” They would say, “Well, why would you question that?’ And wouldn’t even answer the question. I knew right then that definitely I’m not going to this place again.

The second doctor was much more open. He sat down with you. He drew charts. He explained. He said, “Okay, you have Waldenström macroglobulinemia and we’re going to treat it. This is how we’re going to treat it. This is standard treatment at this point in time and just because you see a lot of statistics out there, that’s an average. That’s just the median. Some people live shorter, some people live a lot longer. And given that you’re diagnosed at an earlier age, there’s a good chance you’re going to live for a lot longer than those six years that they’ve been quoting to you. Plus, I have the ability to consult with a lot of other researchers and hematologists in our practice and in our hospital system. We’ll discuss your case and we’ll treat you accordingly.”

What really hit home was wow, I won’t get to see them graduate. I won’t get to see them get married. I won’t get to see any of the special moments in their lives.

Processing the diagnosis

[My wife and I], we do everything together so right off the bat, my first concern was for her. What’s she going to do if I’m not around?

Then the thoughts automatically go to my children. I’m not going to be around. They’re in grade school and high school. They were seven, 14, and 16 at the time. What really hit home was I won’t get to see them graduate. I won’t get to see them get married. I won’t get to see any of the special moments in their lives. They won’t have me around. That was [what] hit me the hardest, not being there for my family.

You can’t bottle that up. You bottle that up, that gets even worse. There was a lot of crying, hand-holding, and just worrying about all of that. I think that’s normal and that’s healthy to let it out rather than bottle it up. I’m not saying you have to cry every hour of the day but that’s important to let that out.

We laid it out to them straight and said, ‘Look, dad has cancer,’ and try to tell them in as simple a way as possible.

Breaking the news to the children

Once we found out exactly what I had, did a little research on the disease, and then found that it wasn’t an immediate death sentence — because I was diagnosed at 43, which is unusually early for this disease — we decided that because I had to go into treatment right away and I could be pretty weak from the treatment — could have some odd side effects — we felt it was important to let the kids know if I’m not going to be around to take them to soccer practice or any of their school events, they should know why.

We laid it out to them straight and said, “Look, dad has cancer” and try to tell them in as simple a way as possible, that it’s serious but it’s treatable and we just have to go with the flow and I’ll be around for a long time. I’m not going anywhere.

I always told my wife that she can’t get rid of me that easily. We’re honest and upfront, but we’re willing to answer any questions they had. The older ones were fairly intelligent to figure out how to find information, but we did try to answer their questions and were upfront with them. That worked for us.

We’re honest and upfront, but we’re willing to answer any questions they had.

Importance of doctor-patient relationship

What I liked about the second doctor I went to was, right away, I felt a connection with him that I didn’t have with the first doctor. Sometimes it’s a personality thing. It’s their demeanor; you click. It’s odd that that’s an important aspect of it, the human element of that, not just the scientific.

I’ve talked to other Waldenström patients and some, they’ll say, “You go to that doctor? Oh, I can’t stand that doctor.” Because they don’t connect, their personalities don’t work, they want something different — and that’s normal. That’s part of it also.

The important thing is to become educated. When that doctor said, ‘Okay, here’s the treatment plan we’re going to do. It’s fairly standard. We’re going to try this first.’ It was Cladribine and I did a little research on it.

Even then, I went searching on the Internet and found the International Waldenström’s Macroglobulinemia Foundation, hooked up with their online discussion list, and automatically started asking fellow patients. “What do you think of this? Will it work?” Basically, the response I got was there may be better options but as a first-time treatment, at that point in time, it was the least toxic so give it a shot [and] see if it works. It may or may not. And so we went with that.

Initial treatment

I [started treatment] right off the bat in 2003 with Cladribine.

First relapse

Expectation setting

With Cladribine, the thinking was I should get two to five years of response. They don’t like to use the word remission if you’re in a recurring kind of cancer. That was the expectation and unfortunately, I didn’t even get that.

[I was getting] monthly blood tests at that time. We saw the numbers — their marker, which is immunoglobulin — the IgM marker dipped down a little bit but started rising right back up again. We knew it wasn’t working.

Dealing with scanxiety

Back then, you didn’t get your blood results immediately. You had to wait a few days and so that was nerve-wracking because you don’t know what to expect from the results. [There] was always that fear that, Oh, here we go. We’re going to have to go back to treatment again. You dread it but also look forward to it because maybe it’ll be a good result.

It’s better now because you find out almost right away what your blood work results are. I’m in a different position now. I know my body better so I know when things are going well and when they aren’t.

Second-line treatment

The next round was Fludarabine-Cytoxan-Rituxan. At that time in 2005, it was being used but there were rumblings in the research community that you might not want to do that.

FCR was found to be effective. I knew it would be more toxic in terms of side effects so they put me on antivirals and all the other stuff to minimize the side effects.

Every treatment has some side effects so it basically comes down to ‘pick your poison.’

Getting information on new treatment

At that time, Rituxan was fairly new. I questioned the doctor and our patient community [about] what they knew about it, how well it worked, and whether it was dangerous long term. In hindsight, that was a dumb question to ask but who knew back then?

Always go through that process of looking at what’s out there. I’m able to access some medical journals because I work at a university so I follow what’s happening in my disease and related diseases. I’m always looking at the research results of newer novel agents in related diseases — like CLL, WM, multiple myeloma, or other diseases — just to keep track of what’s up and coming and see what are the side effects.

With any novel agent — like for Waldenstrom’s, the newer ones are the BTK inhibitors and so I read up on the side effects of BTK inhibitors. Now granted, when it first comes out, you don’t have a long period of time to figure out the long-term effect.

A couple of the noted experts would always tell me, at least right now, there is no safe treatment. They said, in fact, the best treatment is no treatment at all if you don’t need treatment. But every treatment has some side effects so it basically comes down to “pick your poison.” The idea is what gives me the best potential for a longer period of quietness and minimal side effects.

I like to chart my own blood values so I would be able to see month to month how it was trending. It was exciting to see it actually going in the right direction.

It’s a balancing act, the kind of side effects you could experience. [With] BTK inhibitors, you could get elevated heart rhythm, high blood pressure, [and] elevated glucose levels. You have to deal with all of that. The flip side is your disease goes into a very quiet state for a potentially long period of time, but also, you have to take it every day for the rest of your life.

It’s also very expensive, which is another thing now that we have to consider. Very frustrating, at least in the United States, the fact that financial toxicity is becoming such a big issue.

Responding to the treatment

Right from the start, I like to chart my own blood values so I would be able to see month to month how it was trending. It was exciting to see it actually going in the right direction. I can’t say I didn’t think about it, but I could start focusing more on other things.

I actually enrolled in grad school and thought I’d work on a Ph.D. I did coursework in that and I thought, This is good. Every so often, I’ll get treatment. It’s not that bad and then [I] didn’t need another treatment and I’ll be okay. I went into a sense of security… maybe a false sense of security. But knowing that I was doing better [and] I felt better made a big difference compared to where I was before I started getting treated. That was the way I was looking at it.

Very frustrating, at least in the United States, the fact that financial toxicity is becoming such a big issue.

Second relapse

Symptoms

I did notice that I was starting to get a little bit more tired, a little bit more fatigued. I was watching the chart and would show it to the doctor. He would kind of smirk a little bit but then he would look at it. He would say, “Yeah, you’re right, it is going up but it’s not too bad yet and you don’t seem to have severe symptoms so go enjoy yourself. Have a good time.”

As much as I do, he knew the quality of life was important. He said, “Go, and then when you come back, we’ll talk about your options.” We did a month-long vacation to be with relatives and do all the tourist stuff in Italy and had a great time.

Towards the end, I was sleeping longer and started to get a cough that wouldn’t go away. I got some medicine there from a local doctor. It was some kind of injection of an antibiotic that they told me when I came back here was pretty strong stuff. I still was very tired and fatigued. I knew something was wrong. The trip back was not fun.

Pete D. 2009 family summer vacation in Italy

Complications

That relapse was pretty serious for me. I had a lot of things going wrong. It’s [already] unusual that I have a rare disease at a young age compared to other people but on top of that, I had other complications that go with that disease.

I had hemolytic anemia. Basically, my red blood cells would just be chewed away and I couldn’t replace them unless I got a transfusion so I became transfusion dependent. I don’t know how many blood transfusions I had. Maybe 16 of them over a period of three or four months.

I had cold agglutinin disease and cryoglobulinemia, which means, to add insult to injury, they had to warm the blood up in order for me to get the transfusion so that it wouldn’t clot. It was an interesting experience because they hadn’t used the blood warming machine in years so the nurses were kind of saying, “How does this work? Do you know?”

To compound things a little more, I started to have severe, lower back pain and we weren’t sure what was causing that. Did an MRI and really couldn’t tell too much from that. It became so bad.

At that time, my oldest son was going to grad school and we had to drive him to New York from Pittsburgh. I couldn’t sit normally in the car. I had to kneel down basically on the front seat and lean backward in order to just withstand it. It was important to me to get him there, get back home, and see the doctor right away. Priorities.

What we found based on [the] PET scan and further testing was a tumor at the base of the spine. It was lighting up. You have those FDG uptakes. They were able to biopsy it and found that it was a lymphoplasmacytic lymphoma, a Waldenstrom’s tumor.

We didn’t know the way to treat that. It seemed like every time we went to the doctor, there would be that team of doctors and med students, all scratching their heads [and] saying, “Huh. This is an interesting case.” Thank you. I feel so good about that. At least I have their attention, I guess, is one way to look at it.

Third-line treatment

My doctor admitted [and] said, “Look, I have not experienced this before. We’re going to try and figure this out. Here’s what I think we should do. I want to collect your stem cells, just in case. But first I want to knock your disease down with some heavy-duty stuff to get your immune system at least at a certain baseline.”

He suggested high-dose Cytoxan. I would lose my hair, which normally doesn’t happen in Waldenstrom’s but I did go through that. “We’ll do some Dexamethasone to go along with that, some Rituxan, and do radiation to the tumors.” I said, “Well, I think that makes sense, but I want a second opinion.”

I was involved with the IWMF at that time. I knew who the leading researchers were in the world and, fortunately, they’re in the United States — one at Dana-Farber, one at Mayo Clinic — and I asked if he would confer with one of them. He said, “Sure! I’d be glad to. No problem. I’ll call them.”

He called them — and I won’t name any names because the expert that he contacted said, “Look. He’s at a relatively young age. It might be a good idea to consider a stem cell transplant.” At the time, I was so weak and I had a feeling that there was no way I could withstand a stem cell transplant. It was not the right thing for me at the time.

[Then] he said, “But the treatment plan that you have for high-dose Cytoxan and Dexamethasone and radiation is a good treatment plan. It can work.” We went with that and my doctor said, “You pick. Which one do you want?” And he said, “You made a good choice. I would have gone with that, too.”

Shared treatment decision-making

Working with that doctor, he was willing to go back and forth. I get this a lot now from him and from the current doctor that I’m seeing. They both said, “Here are your options. Which one do you want?” It’s like, “Well, I’m not the hematologist. How am I supposed to know?” That’s the first thing that comes [to] your mind. But then you take a step back and say, Yeah, he’s right. There are options.

Sometimes, it is up to the patient what they’re willing to tolerate and what they think they can tolerate in terms of the treatment protocol, side effects you could get, and things along those lines.

I guess they take their cues from what the patient is like and then get an idea of that. Some patients are more risk tolerant, others are not, and so they go with that. They don’t want the patient to say, “Well, you told me to do this. I should have done that.” That’s part of it, too.

Sometimes, it is up to the patient what they’re willing to tolerate and what they think they can tolerate.

The part where it hits home [is] that it’s part art and part science. There’s no clear definition of what is going to work and what isn’t, especially for many cancers. People don’t realize that they’re making gut-level decisions based on what they know at that point in time and they’re never certain if it’s the right decision or not.

I’ve told other Waldenstrom’s patients that if you see one Waldenstrom’s patient, you’ve seen one Waldenstrom’s patient because we’re all different. We have the same disease, but our bodies behave differently. We have different genetic aspects of our disease. We just belong to the same family in a sense, but we’re all different.

Responding to the treatment

It was a several months process of going through treatment and radiation and I got a very good response from it. I even had surgery to remove part of the tumor.

Normally, [a WM patient] has immunoglobulins circulating in the blood at an elevated level. After this treatment, after so many months, those no longer exist. I don’t have them to the point where it’s now below normal and it’s been that way since 2010. When they do a bone marrow biopsy, it’s not in the bone marrow either, which is also unusual.

It got to a point where somewhere around 2015, five years out, my doctor said, “We can maybe start saying the C word for cure because this is really strange, really unusual.” Well, he shouldn’t have said that.

Dealing with neuropathy

Because of the tumor, my right foot and right leg have neuropathy in it. I went through a process of having to deal with being weak. I was so weak that I was in a wheelchair. Then I went to a walker and then to a walking stick.

I tried to keep working the whole time, full time, because I was the main breadwinner for my family. I took public transportation so my wife would drive me to the bus stop. She would haul the wheelchair out, wheel me to the bus, I would get on the bus, and then get off.

It was fortitude. Just one day, then the next day, then the next day — just keep moving. Over time, it did get better because initially, I was lucky [if] I could walk 50 feet down the sidewalk in front of my house. My wife, fortunately, forced me [and] said, “You have to get up. You can’t stay sitting down and being sedentary. It’s just going to make it worse. Just get up. If you can’t make it, we’ll turn around and go back.” And that’s what we did.

Losing independence

That was very difficult. I couldn’t even go into the shower or anything on my own. My wife would have to help me and wash me initially and that was very demoralizing because I’ve never been in that kind of situation.

You reach a low point when you say, “Well, jeez, I’ve done everything. I’m trying to do the best for my family and here I am. I can’t even take care of myself. How am I going to be able to take care of them? And how long is this going to last? My goodness. Day after day, I have to do this. When is it going to get better?”

I couldn’t even go into the shower on my own. My wife would have to help me and that was very demoralizing because I’ve never been in that kind of situation.

All those thoughts [go] running through your head. I don’t know what got me out of that situation. Definitely, it was a support system that I had, my wife and family and the IWMF community of patients and caregivers around the world, who sent prayers and positive thoughts my way – but there’s more to it than that.

You can’t let that low moment pull you even further down. In hindsight, I can say that. But, at the time, my mindset was, Okay. This is not good. I know it’s not good. If I have to cry, I’ll cry, but I have to move on. I have to keep going. I have to find a way to figure out — can I swing my leg over the tub? One little thing, at least. Can I dry one part of my body on my own? Can I try little things and keep working at [them] and find positive things to do rather than dwelling on what I can’t do?

Financial impact

It was difficult because, with our family dynamics, it was my salary basically that supported the family. My wife worked also but there was a disparity in the salary so to not have me earning money was a serious consideration.

Initially, even my manager — very understanding and very supportive — said, “Look. Do you want to go on leave? Do you want to go on disability leave?” I said, “Oh, I hadn’t thought of that.” Then when I looked into it, I saw, That’s 60% of your salary and I don’t know if I can afford that, and so I didn’t do that. I did it when I had to but that aspect of it was also weighing on my mind.

There was no way around that because we have bills to pay. Back then, there was no GoFundMe and I wouldn’t have done that anyhow because that’s just not me — not to say that’s not the right thing for some people. For some people, that’s their only option and I applaud that. But it just wasn’t me.

I had to find a way to move on. Maybe [what] also helped me recover was that I got to support my family. I have to get better. I have no choice.

Finding a new tumor

I did notice that I was getting more numbness and tingling. I knew something was going on, possibly the little tumor was getting larger. There were other things going on and so I combined a couple of things that occurred at that time.

I also went to see a surgeon because of that numbness. He said, “Ah, it’s a classic schwannoma.” I thought, Okay, another word I have to learn. Basically, it’s a benign tumor so I said, “If you don’t think it’s my LPL coming back or my Waldenstrom’s coming back, then I’ll go for that because I’d rather believe that than anything else.”

When they opened me up and did the biopsy, they got most of it but it was so tangled with the nerves at the base of the spine that they couldn’t get it all out. They said, “Sorry, it’s an LPL tumor. We’re going to do some more radiation then we’re going to follow up with some treatment.”

Treating with BTK inhibitors

Fortunately, at the time, there was some research being done that showed that the new BTK inhibitors, like Ibrutinib, had a good response rate on people who had extramedullary tumors. We decided to go with that, conferred with the doctor, checked with a couple of specialists out there, and said, “Yeah, let’s give it a shot. It can’t hurt.” Depends on what you call hurt, but it doesn’t make the disease worse.

I get other side effects that I have to deal with now. It’s now been a couple of years since I started that.

I switched to a different BTK inhibitor because I read that it had [a] better response rate among people with extramedullary tumors so I thought, Well, let’s switch. It’s not going to hurt me. I’d rather go for what’s best at this point in time.

I won’t know until my next PET scan — I get it every couple of years — what kind of effect, if any, it may have on my LPL tumor that’s still there.

Effectiveness of Ibrutinib

I have not had scans since I started [but there’s] less tingling and numbness. Now it’s just normal numbness, put it that way. It’s always numb, but now, I don’t notice any odd sensations.

Decision to delay scans

I’ve had three or four PET scans so far in my disease course. You don’t want to get too many of those because you don’t want to build up radiation in your body. We try and extend that out as much as possible.

IVIG treatment

The IVIG, I get because I have hypogammaglobulinemia — all my immunoglobulins have been wiped out. The treatment works so well that it killed the bad cells and the good cells.

For a lot of people, if they have low levels of immunoglobulins, they’re not impacted too badly. But for me, I would get recurring sinus infections and other infections. The antibiotics would work [but] when I stop the antibiotics, it’d come right back. We felt the best thing for me to do was to go on IVIG monthly.

The blood products are collected from plasma donors, and it takes [up] to 10,000 plasma donors to make one treatment bag of IVIG. It’s an amazing thing that happens.

I’m always very appreciative of plasma donors. I am forever grateful because it keeps me going. If you know people, tell them [to] donate plasma.

The process that I’m going through now is that I’m on the BTK inhibitor and I get IVIG every month. Fortunately, I have a decent medical insurance plan that doesn’t cost me anything other than the monthly premium. But when I retire and go on Medicare, we’ll see. Things could be different.

Pete D. 2019 with family at Watkins Glen

Living with Waldenström

Knock on wood, I feel fine. I continue to work full time. I teach a class or two on the side when I get the opportunity because I enjoy teaching.

I also volunteer for the IWMF. I’ve been on their board for almost 10 years now and I’m currently the chairman of their board of trustees. It’s not a paid position by any means. I do it because I feel like I’m giving back to the people that helped me when I first started out.

I continue to learn more about the disease and to keep up with what’s going on. It keeps me in tune with what’s happening and I get to continue to engage with my second family. I appreciate that. I appreciate their support and also being able to support them in turn.

‘Why me? Why do I have to be unusual in the first place? What did I ever do to deserve this?’

Access to information

Important for any cancer patient, regardless of what type of cancer you have, to go visit Dr. Google. Not to say that you should believe everything that’s out there but go to the sources that are credible, like the American Cancer Society [and the] Leukemia & Lymphoma Society.

If you have an organization that’s specific to your type of disease, definitely hook up with those people. For my disease, it is the International Waldenström’s Macroglobulinemia Foundation. You’ll get not only the latest information specific to your disease and what treatments work well but also, just as importantly, the opportunity to hook up with the community of people that are traveling the same journey you are. You can share your stories, your thoughts, your fears, and your experiences.

There are moments when you really start to think about, ‘How bad off am I? How bad is this going to get?’

Looking for a cancer patient community

Just from joining the IWMF, it’s like I have a second family. The support that I have through them is invaluable. Every time I have a relapse or have something going on, I ask a question [and] I get a response right away. I get different responses, of course, but then I can make a more educated decision on what’s going on. I, at least, have a sounding board so I think it’s important to not only have a good medical team but also a good support system — not only from your local friends and family but also from your disease family if you can.

Coping with a rare cancer

At first, what goes through your mind is, “Why me? Why do I have to be unusual in the first place?” Then on top of that, I get something even more unusual. “What did I ever do to deserve this?” Then you say, “Well, maybe this is it for me.”

There are moments when you really start to think about, “How bad off am I? How bad is this going to get?” Because they don’t know what’s going on, I don’t know what’s going on, and we don’t know how to treat it. You get to a low point and you say, “Okay, I’m going to cry it out.” You do that then move on and see what [you] can do.

At a certain point, you reach [the] realization that it’s either going to work or it’s not and you have to get a level of comfort with [it]. Hope for the best and say, “I’m not ready to go anywhere. But if it doesn’t work, I gave it my best shot.”

The approach I took was that I have to hope for the best because I want to be around. I’m unique. I can’t help that and that’s just the way the cards were dealt with to me. I just have to deal with that.

At a certain point, you reach [the] realization that it’s either going to work or it’s not and you have to get a level of comfort with [it].

Self-advocacy: The importance of speaking up

Even [for] something as simple as a blood test, they had to keep the blood warm. You had to tell them that. Not to minimize [or] denigrate those nurses, but you had to impress upon them, “Look, I have cold agglutinin disease. Please make sure you keep it warm. Wrap it in a towel, do something, and get it to the lab right away.” Sometimes if you don’t tell them, they would not realize it and I understand that. You have to speak up.

Don’t be afraid that they’re going to think that you’re trying to tell them what to do. Don’t worry about that at all. Just tell them — even if they give you a nasty look, you got the message across. They heard it and they say, “Yeah, I know.” That’s fine. Great. I’m glad you know. Take care of it.

You’re much better off than if you didn’t say anything at all and it got messed up and they had to poke you again three or four times just to get your blood drawn.

Having cancer gives you a renewed focus on the fact that we don’t know how long we’re going to be around.

Words of advice

I wish I had a magic solution because I’m one of those people that a lot of people say, “Oh, you look so great.” Yeah, but still, I have this thing hanging in the back of my head all the time. Even though I know I’m doing well, I’m always thinking, Well, when is it going to get worse? When am I going to get the next major relapse? It’s there. I don’t know if you want to call it PTSD or what you want to call it.

Having cancer gives you a renewed focus on the fact that we don’t know how long we’re going to be around so you try to enjoy whatever you can, even if it’s just a nice dinner. It’s fantastic.

Don’t dwell on the things that are negative because that just makes your quality of life even worse. The important thing is to improve your quality of life and work on that. Even though you may be feeling sick — you may not be able to get out of bed; you may not be able to get up from the couch — find things that you find joy in and try and focus on that.

It’s not easy. You can’t always achieve that. But that’s what guides me and what gets me going. My family and things like that help me.

Don’t dwell on the things that are negative. The important thing is to improve your quality of life and work on that.

It’s important to improve your quality of life. I hate to be a downer, but you may still be in such a situation that’s very serious and you may not come out in a good position. But it’s the quality of life, not necessarily the quantity that’s important so trying to do whatever you can to improve your quality of life is very important.

Be your own advocate. If they want to give you something, say, “Why are you giving me that?” If they give you a set of pills and it looks different than [the] day before, ask them about it because they’re busy and sometimes they say, “Oh! Oh, that was for the patient in the other room, not you.” I’m not saying that that happens all the time, but it can happen so it’s important to be your own advocate. Be educated and be positive.

Hopefully, together, we can give some people some valuable information and help others that are traveling the same journey.

There are going to be good periods and bad periods. Resign yourself to that and find things that help you get through bad periods.

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FAQ Hodgkin Lymphoma self-advocacy

Patient Self-Advocacy | Hodgkin Lymphoma

Post author By Katrina Villareal
Post date August 20, 2022
No Comments on Patient Self-Advocacy | Hodgkin Lymphoma

Patient Self-Advocacy

A Conversation on Speaking Up for Ourselves

From the first symptoms of cancer to how we communicate with our doctors, the importance of patients advocating for themselves is key to getting through diagnosis and treatment in the best way possible.

Four incredible Hodgkin lymphoma patients/survivors share how they were able to advocate for themselves throughout their cancer care, including during the beginning of the COVID-19 pandemic!

Delishea A. was 30 and living in the rural South when she was diagnosed with stage 4B Hodgkin lymphoma. She shares the importance of speaking up about first symptoms and the power of getting a second opinion and other options.
Kelsey R. was diagnosed with stage 2A Hodgkin’s on her 26th birthday! Five years later, she reflects on how she was able to do her own research to get better treatment for herself and how she was able to develop the confidence to speak up.
Tylere P. went through treatment twice for Hodgkin lymphoma, first as a 24-year-old and then again a year later. He dives into how drawing boundaries with his own family was an important step in self-advocacy and how he dealt with surprise bills (and financial toxicity).
Erica H. was diagnosed with HL right before the pandemic hit. She talks about her experience as a Latina, feeling dismissed for her cultural concerns about treatment. She also shares the importance of speaking up, especially during the COVID-19 pandemic where there may be medical burnout.

Special thanks to our collaborator, Imerman Angels, and to Seagen for its support of our patient program!

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

Table of Contents

Introduction
“Doctor Knows Best”
Shared Treatment-Decision Making
Protecting Our Boundaries (+ Energy!)
Mental Health
Family Planning
Survivorship

Introduction

Stephanie Chuang, The Patient Story: I am the founder of The Patient Story and also a cancer survivor.

I was diagnosed with non-Hodgkin lymphoma a few years ago and I’m grateful to be in remission but this is a topic that is very near and dear to my heart: self-advocacy. This entire conversation will be about speaking up for ourselves.

The Patient Story is created out of my own experience. I wanted to hear from other people and that’s what was going on when I started The Patient Story, where you’ll find hundreds of patient voices and videos and hopefully, that will help with [the] connection.

We’re bringing this to you with our partners, Imerman Angels, an incredible organization. I used Imerman Angels when I was going through my treatment. They help connect you one-on-one with cancer support. Whether you’re a patient, caregiver, care partner, survivor, [or] previvor, they will make sure that you meet someone who’s close to what you’re about to go through.

We want to say thank you to our supporter, Seagen and Hodgkin Hub, for its support of our patient event and program. Incredibly important to get partners on board who believe in this vision of helping patients and care partners everywhere.

The Patient Story and Imerman Angels have full control of the entire content. It’s not intended to be medical advice so please, please consult your healthcare provider and team if you’re having to make medical decisions.

Delishea A.: I’m from Louisiana. I was first diagnosed in June 2020, right before I turned 30. Just graduated as a medical biller and coder, and I’m about to get back [into] the workforce.

Erica H.: I am from San Francisco, California. I was diagnosed with Hodgkin’s lymphoma stage 3B [in] September 2019 and in remission as of March 2020, right as the pandemic was hitting off. I belong to a runners club and the motto is [to] start slowly and then taper off, so in all things — starting my business but especially doing treatment — that motto was really important.

Tylere P.: I’m currently in Grand Rapids, Michigan. I was diagnosed with Hodgkin’s lymphoma in 2014. As of August 1st of [2022], I just hit my five-year anniversary of no chemo so that’s pretty big. I am a videographer and photographer. I also own an insurance agency so I got a lot going on these days.

Kelsey R.: I’m from Bentonville, Arkansas, which is my hometown, but I actually live in Austin, Texas. I was diagnosed with stage 2A Hodgkin’s lymphoma in September 2017 and I’ve been in remission since March 2018. I am an architectural historian and a writer. I dabble in comedy writing and screenwriting. I also own a vintage furniture company.

Stephanie, The Patient Story: Each of our panelists really represents a different situation so we’re going to be able to hear a range of experiences.

It felt like I had to really talk my way through it, constantly let them know that this is not normal.
Delishea A.

“Doctor Knows Best”

Stephanie, The Patient Story: I don’t know if you felt that. I’ve definitely felt this, “I don’t want to be that patient.” I don’t want to annoy my doctor. I don’t want to speak up too much. They’re trained; I’m not.

There’s a lot to talk about here when we say self-advocacy because it is our [life] after all. Delishea, there are different instances of this for you, but it took a while to actually get diagnosed. Even before getting diagnosed with Hodgkin lymphoma, can you describe what happened?

Speaking up about 1st symptoms

Delishea: The symptoms lined up with COVID symptoms. I also had uncontrollable itching. At first, I was just discounting the itching as a dermatitis issue. I know I was tired a lot.

During that time, we [had] the stay-at-home order. We weren’t working so I thought it’s just from being tired because I worked, worked, worked before. Each symptom seemed like I could discount the actual symptom for something else.

What really brought me to the doctor was a lump on my neck and he immediately did tests — MRI, bloodwork — and it came back as lymphoma.

Stephanie, The Patient Story: You had described feeling during that time, the run-up to getting the actual diagnosis, like you were trying to tell people, “I have all these things that I’m feeling. I know it’s not right.” Can you describe what that felt like for you?

Delishea: It felt like I had to really talk my way through it, constantly let them know that this is not normal. It took a little bit.

Each symptom seemed like I could discount the actual symptom for something else.
Delishea A.

Stephanie, The Patient Story: It can be hard to fight through that. Erica has a very specific situation, too, in terms of a cultural difference where you felt really unheard. Can you talk about what happened there?

Speaking up about cultural differences (and being listened to!)

Erica: I had symptoms that I did present to my doctor. There wasn’t a lot of lag time between getting seen by my primary and then getting tested. When I finally met with the oncologist, it was really trying because, at that point, I had a feeling I had Hodgkin’s lymphoma. All the signs were there.

I was going into the appointment knowing I was going to get that diagnosis. I wanted to present my needs and that was a lot of cultural… I wanted to have conversations [with] a nutritionist about how I can integrate that care and it wasn’t listened to. There were statements that made me really uncomfortable.

When I stepped out of the appointment, I turned to my husband and said, “I cannot go through this process if I’m not going to be able to have a conversation. I get that I have to have treatment, but I need to know that they’re going to listen to what I need to get through this.”

I wanted to have conversations [with] a nutritionist… and it wasn’t listened to. There were statements that made me really uncomfortable.
Erica H.

I started exploring different doctors until a friend said, “Why don’t you just look within the network that you’re in? Maybe there’s another oncologist.” It’s already uneasy, but my primary concern was that I wanted to be heard.

I was fortunate enough to find a doctor who was willing to do that. Basically, they said the same thing as the first doctor, but their statements were presented [differently]. He explored some of the things that I wanted to look into.

Stephanie, The Patient Story: I want to highlight that because it seems small. At the end of the day, both doctors agreed essentially on the same thing. They had the same opinion about treatments. But one doctor dismissed you right off the bat because they [didn’t] know about this cultural thought process with treatment. The other one, what did it mean? What is that difference? It seems minor, but it’s pretty big.

My primary concern was that I wanted to be heard.
Erica H.

Erica: It was big because it just showed being able to advocate; that was really important for me. I’m an admissions consultant so I teach students how to self-advocate. Now, I was actually putting into practice for [myself] in a health crisis. I know that they are the experts in [the] medical field but I am an expert on how I feel.

Not having my feelings dismissed was so important. I had done readings on all these ideas, like mind-body [connection]. I want it to feel positive and that doctor made me feel positive about this — that it wasn’t going to be as scary as it already was for me.

They understood I had a whole team around me who would voice their concerns and opinions on what I should do and I could have conversations with him about that. Knowing how to respond to those people, he became a partner in this process of treatment and healing.

Stephanie, The Patient Story: I want to highlight that word: partner. That’s what we’re aiming for. Everyone feels like they’re part of this.

Not having my feelings dismissed was so important.
Erica H.

Shared Treatment-Decision Making

Stephanie, The Patient Story: Shared treatment-decision making: what does that mean? It means that it’s not just one-directional. It’s not the medical team only and the doctor only. I’m part of this. This is my life. I know that you have the training, but I want to be empowered in my care.

Kelsey, [your story] is actually a really great example of advocacy. If you could give a little [background] of what your treatment was, the impact, the side effects you were feeling, what got you to research, and the impact of the research.

Doing my own research and changing treatment path

Kelsey: I had stage 2A Hodgkin’s and was prescribed ABVD chemo — I believe it was four cycles, eight treatments total. After, I think, my fourth treatment, I ended up in the hospital with neutropenic fever. I experienced really low white blood cell counts during my entire course of treatment, starting right after my first chemo.

I picked up something small [and] ended up with pneumonia over Christmas.
Kelsey R.

It was the middle of winter [with] a lot of colds going around. I picked up something small [and] ended up with pneumonia over Christmas in Arkansas. I was in the hospital for four or five days dealing with that and that was probably the lowest point in my treatment.

When I got back to Austin, I asked the doctors and nurses if I could add Neulasta to my regimen, which would boost my white blood cell count [and] make me less susceptible to infection. They told me that I could not do that because it would interact with the Bleomycin in the ABVD.

I was already experiencing some side effects from Bleomycin. It can cause lung scarring. I wasn’t having that issue, but I was just scarring all over my body. I could tell it was not great. I was wondering if it’s doing this to my arms, what’s it doing to my lungs?

I found some recent studies that had shown [that] the Bleomycin could be safely removed from the chemo.
Kelsey R.

I did some research and I found some recent studies that had shown, I believe, people who had 12 total ABVD treatments, so six rounds, if they were clear after their second cycle, then the Bleomycin could be safely removed from the chemo. I brought that to my doctor and said, “I know this isn’t my exact situation and I have fewer treatments, etc., but do you think that this would work for me so that I could add Neulasta so I don’t end up in the hospital again? Because I feel, at this point — because I’d already had a clear scan — that that’s a greater risk to my health.”

My doctor agreed with me and actually commented that he’d just been discussing that research at a conference he’d just been to. I removed that from my regimen and I’ve been in the clear for five years almost so seems to be fine so far. I remember his wording exactly was, “Yeah, that makes a lot of sense.” That worked out for me and I was able to take the Neulasta to get my white blood cell count up and did not end up in the hospital again.

I was so terrified that someone I would come in contact with had a roommate with the flu or something because that could have been really, really bad for me at that point.
Kelsey R.

Stephanie, The Patient Story: Now we’ve been through COVID, we understand more [about] being immunocompromised and feeling like [we can’t] just go anywhere. Everything’s going to infect me. It could lead to hospitalization, which it did for you. Describe the impact [on] your psyche or just your emotions to feel like I can’t do anything right now because of this treatment.

Kelsey: I don’t think I quite understood — at the beginning of treatment and when my white blood cell count got really low — the impact of that and what that meant for me. I felt like always having to be in a bubble and, [as] you said, a lot of people got a taste of that, especially at the beginning of the pandemic when we were all terrified.

Once I ended up in the hospital — it was a really nasty flu season — the doctors were being so careful with me and that really freaked me out. That time in the hospital was really, really rough. Before I was able to get the Neulasta, I lived in isolation, which I was doing already. I’m pretty sure I picked this up in line at a pharmacy actually.

I remember my dad would wipe down the cup when we stopped at the gas station. You feel extremely vulnerable and I was so terrified that someone I would come in contact with had a roommate with the flu or something because that could have been really, really bad for me at that point.

Stephanie, The Patient Story: You had no defense systems.

Also, you had research experience, being in grad school, so [you had] access [and] the know-how to research this stuff, but what about other people who don’t have access? You were able to empower yourself with that knowledge, you brought it to the doctor, and that started this very important cascade of events. Any last thing you want to say in terms of the ability to research and know? What got you to speak up? Did it take much?

Kelsey: It was just that stay in the hospital. There was a man who was dying in the room next to me and crying out a lot. It was a really, really scary experience. There was a lot of infection around me and the doctors were scared that I was even in the hospital because it could kill me. That fear is when it really hit me how very, very serious this is.

I’m a chronic researcher. I just will research things to the point where it’s not healthy sometimes and so this was something I just really was looking into because I was looking for any option to be able to get the Neulasta. This is why I think sites like The Patient Story are so important because if I had had someone who had been through that before to tell me this, it would be a lot easier and a lot less scary.

It really hit me how very, very serious this is.
Kelsey R.

I remember asking, ‘Can I just not receive the Benadryl?’ The side effects from the Benadryl, I notice more than the side effects from the chemo
Tylere P.

Stephanie, The Patient Story: Tylere, I know for you it was a little bit different. During one of your treatments, they had Benadryl — a very common medication that’s given to help avoid allergic reactions but for you, that was kind of the problem. Can you share that with us?

Speaking up about medication side effects

Tylere: Going through the chemo, I never had any bad side effects. I still had an appetite. The worst thing that happened was losing my hair.

I remember getting Benadryl one day before they were giving me chemo and I was knocked out afterward. I would drive myself to my chemo appointments and the hospital was about an hour away. This is when the cancer relapsed.

It took about an hour, an hour and a half, for the chemo that I was on, and then I’d have to stay for an extra hour and a half just for the nurses to feel comfortable letting me go home because of the Benadryl. They didn’t want me [to fall] asleep while I was driving, which is great, but I also didn’t want to be in the chemo chair any longer than needed.

I remember asking one day, “Can I just not receive the Benadryl? Can we just see what that does? Was that a possibility?” They checked with the doctor. They said, “The doctor said that’s fine. We can forego that.”

After that, getting the chemo treatments was a much easier experience for me. The side effects from the Benadryl, I notice more than the side effects from the chemo, even though I’m sure my body was going through a lot through the chemo.

Stephanie, The Patient Story: I love this example because we know that it’s supposed to help, but you knew your body. You knew that you weren’t having a reaction.

When we talked about this, you said you were so drowsy [that you had] to depend on somebody else. You’re a very independent person. Can you describe that impact for you?

Mentally, it was nice to be able to do things on my own.
Tylere P.

Tylere: Being independent, I like to do things on my own. I didn’t want to have a friend or family have to be with me during chemo and be an inconvenience for them. Mentally, it was nice to be able to do things on my own. If I’m able to go get chemo by myself, that’s fine. I was there every couple of weeks for over a year plus. It wasn’t anything that I wasn’t used to.

The first few times getting treatment, I had friends and family there. After that, I was like, “Well, I don’t want you all waiting around for four or five hours.”

Stephanie, The Patient Story: Being able to speak up for yourself in that instance allowed you to have control of that again because otherwise, you’d be, “I need you to drive me.”

Being independent, I like to do things on my own.
Tylere P.

Protecting Our Boundaries (+ Energy!)

Stephanie, The Patient Story: Protecting boundaries and energy: what does that mean? It’s “I don’t want to offend other people.”

Delishea, you lived with your sister for part of the treatment and you talked about mama bear. Could you just describe what that meant?

Hard conversations with parent caregivers

Delishea: I can’t imagine seeing your child go through [something]. [In] the beginning, she was very hands-on. She was the one that had to take me to the appointments; really wasn’t anybody else stepping in and I just call that mama bear.

But it came to a point where I was like, “Let people help to make things go smoothly.” When I changed doctors, my sister had to be my caregiver and she didn’t really have as much access to coming to the appointments. Instead, we would record the appointments for my parents so they can listen in and if they had questions, they gave us the questions and we would ask for them. But other than that, it was a rollercoaster.

I’m still processing what I’m going through and I don’t have the mental space to nurture your feelings about it, too.
Delishea A.

Stephanie, The Patient Story: Moms are great, but there is a balance, right? It’s wonderful getting that support, but at the same time, does it feel like I have to manage other people’s feelings, too?

Delishea: Yes. Big time. When going through it, your emotions [are] all over the place. I don’t know if it was the chemo, the anxiety, [or] all of it together. My caregivers and my support system [were] going through it with me so I was very cautious of their emotions, too. I don’t think anybody knew how to handle it.

A lot of times, I would bring my earphones and listen to music or just be honest. “I don’t feel like talking. I don’t feel like being bothered.” They know me [and] my personality so I didn’t think they were too offended, but I have to set those boundaries. I’m still processing what I’m going through and I don’t have the mental space to nurture your feelings about it, too.

Delishea A. with sister after radiation — Delishea with her sister

Stephanie, The Patient Story: I am really thankful that you’re bringing this up. It can be hard to talk about, but it is so true and I’ve talked with many other people who feel the same way. As soon as we get diagnosed, [there’s this feeling] of I don’t want to hurt this person’s feelings. There’s just a lot going on. I appreciate that you set an example of [taking] care of yourself first, [giving] yourself some grace. It’s okay to say no.

Tylere also had an experience having to learn how to protect boundaries and say no. Describe a little bit more about your mom, what she does, and how those first appointments were for you.

Tylere: My mom is a nurse practitioner and she’s actually the one who told me that I have cancer. We noticed I had a swollen lymph node. I asked her, “What does that mean?” She was like, “Well, it could either be just some sort of infection or worst-case scenario, it could be cancer.”

We got that checked out. After a week of antibiotics and then being told I need a CT scan, kind of figured, okay.

I was in a conference room at work and had all my co-workers around me. She called and said, “You remember when I said worst-case scenario?” I said, “Yep.” She goes, “Yeah, so it’s going to be [the] worst-case scenario.” My response [at] that moment was, “Oh, okay, great!” Because I’m literally surrounded by all my co-workers and I haven’t really told them what’s going on yet.

Dealing with my mom being a nurse practitioner [is] like a blessing in disguise. A lot of the more medical questions or things that could or could not happen, I leave that up to her. If I had questions that the doctors were asking, I ask her in more detail afterward.

She called and said, ‘You remember when I said worst-case scenario? It’s going to be worst-case scenario.’
Tylere P.

I moved back home after the cancer had relapsed. Being independent, being told I had cancer wasn’t the worst part of this process — it was being told that I was going to have to move back home with my parents. That was very hard for me. I didn’t want to be a burden and I just didn’t want to be back home. It wasn’t a place that I wanted to be at 24, 25, living with my parents. But that’s what ended up happening.

My mom was coming to [my] appointments and I told her I can’t have her come anymore. It got to the point where, essentially, if the doctor asked me a question or asked me my name, by the time he said “name,” if I wasn’t saying “Tylere,” she was the one responding.

Being told that I was going to have to move back home with my parents… that was very hard for me.
Tylere P.

We had a long conversation one day [with me] saying, “I just need you to not come to these appointments. It’s not good for me mentally. It’s not good for me emotionally. I just need to be in a good space. Basically, I moved back home to make this easier on you all.” Originally, I was going to go to Houston to be treated but came back to Michigan to make it easier so the family didn’t have to travel in case they needed to be somewhere for me.

I was already withdrawing a lot from my emotional bank to be back home. I said, “If there [are] questions that you feel like I need to be asking the doctor, I will talk. I will tell you after I get back from the doctor.” Give her a summary of what happened [and] what questions I asked… If there’s anything that she wanted to ask going into it, I could ask them. If she didn’t feel [the] questions I was asking were adequate, then we could have another discussion about that.

I wish I would have had that conversation sooner of just being upfront about it.
Tylere P.

I know that was very hard because I told her in that conversation, “I don’t have any children so I don’t know what it’s like to be a parent with a child who’s going through this. I’m assuming as a parent you want to be there for your kids and do everything that you possibly can. But, at this time, I’m a grown adult and I would like to be able to answer these questions from the doctors. I also just need this for my space.”

If that was her process for going through this, I was giving her that space. But that space was impeding my space and I could no longer allow, [at] that time, to take over my space.

Stephanie, The Patient Story: It’s hard. There’s a juggling of things going on here where you’re trying to be mindful. You said something about [not wanting] to rob them of their experience of being parents in this way. At the same time, it’s already hard being home. I want to be independent. I still need to feel like me, like Tylere.

Are there any tips in terms of how you were able to move from “I don’t really want to talk to my mom about this, I know she really cares” to “I’m just going to do it”?

Having a hard conversation

Tylere: I wish I would have had that conversation sooner of just being upfront about it.

We’re coming back from an appointment and she’s like, “Why are you so quiet? You never talk on these rides.” I was like, “Well, I just got chemo. I guess I’m tired and I just had that Benadryl so I’m out of it. I just don’t want to talk about it. I don’t want to think about it. I don’t want to discuss it. I just don’t want to be a part of it.” We pulled in the driveway [and] that conversation turned into an hour and a half about everything.

These are all thoughts that I’ve had before and I was just like, “I don’t know how to express these.” Writing down your thoughts is good, taking inventory of yourself — who you are, what you need — and then having that very uncomfortable conversation.

We had a long conversation one day [with me] saying, ‘I just need you to not come to these appointments. It’s not good for me mentally. It’s not good for me emotionally.’
Tylere P.

Setting boundaries and expectations are huge because I remember my mom was like, “I’ll make you dinner. I’ll go grocery shopping for you. I’ll do your laundry.” I was like, “I don’t want any of those things. Now, I’m not saying I don’t need your help, but when I need it, I’ll ask.”

Stephanie, The Patient Story: Right, and I appreciate you sharing that because, again, it can be very difficult. Sometimes we don’t even know that we’re bothered or that something’s up. If you notice something, just write it down [and] see if it’s a pattern that will be helpful in having these conversations.

Erica had the complete opposite experience. With your parents, it was different.

Speaking up to get support from loved ones

Erica: I’m fortunate my parents live nearby, only 20 minutes away. I do want to be fair to my mom. She did come to my first appointment and then it was too crowded in the room where I was getting treatment. It was a nice way for her not to have to attend since my husband was going to be able to go with me.

I can’t reiterate enough Tylere’s point about writing things down because I wanted to be independent as much as possible and I was able to control that [by] just reflecting on what I would need. Having a doctor as a partner was really helpful in figuring out where those needs would come up but it’s a lot on one caretaker.

I was diagnosed in September 2019 and my treatment was going to fall into the holidays. My husband was awesome. Getting to the appointments, he played a good music playlist and always kept an upbeat, positive environment while I was getting treatment. For the most part, I was able to handle a lot on my own when he was at work, but he was also working full time and it was the holidays. Because you’re immunocompromised, you have to maybe sacrifice a big family gathering.

Having a doctor as a partner was really helpful… but it’s a lot on one caretaker.
Erica H.

They didn’t even realize that I needed them in that way. They were waiting for me to tell them because they thought my husband had it all.
Erica H.

I could see it start to wear on my husband a little bit. He was starting to burn out. I actually told him, “If you are not available to me, I need you to just give yourself a break because it’s not going to be helpful to me.”

My parents, at this point, knew that he was going through a lot but maybe not specifically on how they could support the community that I needed to rally around me. They are emotionally involved and it meant involving them [by] being very specific on how I needed them.

There were things on my task list that I just couldn’t manage, even though I wanted to be independent, [like] disability paperwork. I was still trying to figure out how to get disability checks. I also didn’t know what to cook for myself to deal with the side effects.

I remember just one afternoon telling my parents, “I know that you have a lot going on,” — which they did; there [were] a lot of other things happening in their personal lives — but I said, “I really need you to help me with this paperwork and to help me come up with some good recipes for the side effects. Here’s a list.” They jumped to it. They were so happy and they didn’t even realize that I needed them in that way.

They were waiting for me to tell them because they thought my husband had it all. But once my husband was burnt out, I’m like, I need you now to step in. I was a facilitator of this really difficult process, but it was easier when I was able to direct them on how to help me.

Stephanie, The Patient Story: This is such a great juxtaposition against what we just heard from Delishea and Tylere. When we have this range of experiences, the people around us may or may not know what we need. They may do too much. They may do too little.

In your case, you advocated for yourself because you knew with your husband, “Thank you for all you’ve done, but if you’re not going to have the energy at this next appointment, I need to know so that I can have someone there who can be at 100% for me.” The other thing you did was recognize — my parents, my brother, they don’t really seem to be stepping in. I’m just going to tell them what I need.

It can be hard to be that direct in having those conversations. Did anything help you to have these conversations?

How to bring up and get through tough conversations

Erica: I was really writing intensely — an organization in Berkeley called the Women’s Cancer Resource Center had a writing group. There were things that I was giving to my dad specifically. There’s a cultural component, too. He was having a really hard time adjusting to the fact that I was going through this experience and I really wanted him to hear my needs and concerns. It was just difficult.

In that difficult conversation of being heard of what I needed and what I wanted, I just met what I needed. If he couldn’t respond completely to it, I recognized that and just said, “Okay, I’m going to be direct. Just make me juice. I know you love me and that’s enough. Everything else, we’ll deal with later on.”

Whereas my mom, it’s just different, our relationship, and that was really helpful to her to not get as emotionally charged. It was like, “You know what, there’s some paperwork. I really know you’re good at dealing with this, so can we sit down for an hour?” It was just logical for her to sit down and go through it. I didn’t have to invite her into the emotional piece unless I saw that she was ready for that.

The same was for my brother. Because my husband lives with me, he got all of it, which is why he was dealing with burnout. I couldn’t find any other way than to be direct with him. I said, “I get it was hard for you, and I know you know it’s hard for me, but I need you to go with your brother and watch football. Get away.”

Everyone thought it was weird that [my husband] would go and he was starting to feel guilty. It was the best thing for us because then he came back with energy and I had brought in my parents and my brother to step in for that.

Stephanie, The Patient Story: One huge piece of this is we’re not going through this alone. We are diagnosed with it but along with us is everyone around us — maybe a spouse or partner or family members, friends. Caregivers and care partners need to have care, too. That’s a really, really good message.

Kelsey, you had support, but you also mentioned something about if you’re not in the right place, just don’t be afraid to ask.

Don’t be afraid to ask others for support!

Kelsey: I was lucky that my sister and my husband — at the time, fiancé — and I had some roommates that were very supportive and would help me out. Some grad school friends would make meals.

Sometimes, with such a large support team, it was a lot of breadth, not a lot of depth. There was not a lot of organization so it was difficult for me as a cancer patient going through a lot of mentally taxing medications to figure out what I needed when I needed it.

That was really helpful to me, just being able to identify who can help in what way.
Kelsey R.

I was able to choose [the] most organized, Type A people in my life. One friend put together a meal calendar where people would pay her and she would make me food [during] my chemo weeks.

My husband was not able to come to most of my appointments with me because he had a really unforgiving job at the time and my sister, I enlisted her to come with me because she’s also really Type A.

She actually caught a mistake where a nurse had weighed me incorrectly and was going to give me the wrong dose of my chemo that morning. That was really helpful to me, just being able to identify who can help in what way because my parents weren’t there and my husband was not able to help much.

Stephanie, The Patient Story: Having an extra set of eyes and ears in the room can be so critical. We’re overwhelmed. There’s a lot going on. We’re in the infusion chair and that’s a big mistake that could have happened.

Also, the people you have in your support circle [have] a different language. Some people are better at doing paperwork. Some people may be cooking. People want to help, right?

People want to help

Kelsey: Absolutely. That was the thing that surprised me. I don’t know why because I would gladly help my friends, too. But when my friend organized this meal calendar, people who signed up I maybe had one class with so that kind of community support people were really willing to engage in, which I was very, very appreciative of.

Recording helped because a lot of the times afterward, I couldn’t remember anything.
Delishea A.

Stephanie, The Patient Story: Delishea, you talked about how overwhelming it is [at] the beginning and the importance of having somebody else there. You were going through this during the pandemic. Can you describe how you advocated for yourself to have more support?

Delishea: With my first oncologist, I had to really speak up a lot. It was just a lot going on. Nobody was allowed to come in with me so I had to speak up for myself in the appointments because I didn’t really have anybody with me to remind me what the doctor said. That’s where the recordings came in and recording helped because a lot of the times afterward, I couldn’t remember anything.

Stephanie, The Patient Story: It’s overwhelming. We talked about having someone else there as extra eyes and ears. One thing I learned was you can ask the doctor if it’s okay to record. You can record the appointment on your phone so that you can then share [it] with other people.

As patients, we’re going through a lot — treatment, changes, and then on top of that, sometimes paying for it pops up. Tylere, for you, it’s a little bit of a surprise. Can you share with us [your] experience [with] those hospital bills?

Tylere: I recommend for people who are going through this [to] just keep a three-ring binder — organize your bills [and] your explanation of benefits. I remember getting stacks and stacks of letters and mails. It was all very confusing. This is how much it costs, but you don’t owe anything. Sometimes you do and then sometimes you don’t. It’s weird.

I remember getting a bill for a very large amount of money and I was like, “Why isn’t this paid?” Every three weeks for a year, I was receiving the same treatment and my insurance company decided that out of one of those, they weren’t going to pay for it.

[I had] to talk to the financial office at the hospital about what’s happening [and] what can we do about this. Then [I found] out that there’s an appeal process that you have to do with the insurance company. I did that and then they denied that appeal.

Then [I found] out you can have your doctor make an appeal. The insurance company basically came back and said that [the] chemo treatment I received was not medically necessary and they weren’t going to cover it, even though they covered all the other ones for the past year, so that was interesting.

Then [I come] to find out that there was some financial help. They weren’t going to send me to collections for it. They were actually able to find some sort of grant that was going to help pay for someone in my situation. Luckily, that was taken care of.

Keep a three-ring binder — organize your bills [and] your explanation of benefits. I remember getting stacks and stacks of letters and mails. It was all very confusing.
Tylere P.

Different places, depending on the size of the hospital you’re going to, have different help. The LLS or Leukemia & Lymphoma Society is one organization that does offer some help.
Stephanie, The Patient Story

Tylere: Yes. Make sure you’re having those conversations. I remember having that conversation with our financial department. Why is it on me to appeal this bill? I’m the patient going through all this. Why do I have to deal with these insurance companies about all of this? Figure that out. You’re the one who wants that money. Go after the insurance company. You all deal with this every day. Why is [the] person [who is] going through chemo [the one] having to deal with this or having to put [the] family through this who isn’t versed in any of that?

Stephanie, The Patient Story: Right. Different places, depending on the size of the hospital you’re going to, have different help. Some have patient navigators, some have social workers, and you had talked about, too, researching some of the different resources that could be possible.

The LLS or Leukemia & Lymphoma Society is one organization that does offer some help. If you don’t have the energy, maybe have people around you look for that. [There] are different grants and stipends you can apply for — from co-pay to travel to urgent needs, which [are] rent, mortgage, lodging, child care, food, transportation, [and] so much more.

Mental Health

Stephanie, The Patient Story: A very important topic can get on the back burner a lot. Self-advocacy is speaking up for every part of you, not just treatment and [finances]. Everything is connected to our mental health.

Kelsey, you didn’t really consider the mental health aspect as you were going through treatment. I think that is fairly common. We talk about surviving first. You talk about now, in hindsight, your perspective of mental health.

If you have never really considered your own mental health… do that because that’s been the longest healing process, but the most important.
Kelsey R.

Kelsey: I just really wish I would have, from the get-go, found a therapist [and] taken advantage of any free counseling my cancer center might have had. I had never been to therapy or anything like that before I was diagnosed and I was thinking about it when I got diagnosed.

I asked my oncologist if there were any mental health resources I could look at and I think he was in a bit of a rush to the next patient and he was just like, “Let’s not worry about that right now. Let’s just focus on getting you better.”

I understood his perspective but, [in] hindsight, I wish that he would have said, “Here’s the information for the social worker at our clinic,” or something like that because I think that healing mentally from this has been far [more difficult] than healing physically.

I would really encourage anyone who is recently diagnosed — or even if you are a survivor that’s been out of it for several years: if you have never really considered your own mental health — seeing a therapist, talking to your doctor, or anything like that — to do that because that’s been the longest healing process, but the most important.

Also, the people around me, I didn’t realize until after how difficult it was for my husband because he wasn’t showing how hard it was for him during the process. For caregivers as well, I think that is so important.

Stephanie, The Patient Story: I, again, appreciate highlighting this because we do often forget that. Not just us. As patients, we recognize when our caregivers are burning out or feeling a lot, but it’s everybody else who doesn’t really quite see. It’s not just the person who is diagnosed. It’s the mental health, the physical health, [and] the emotional well-being of these people who are also being the caregivers; that is so important. I really appreciate that.

I didn’t realize until after how difficult it was for my husband because he wasn’t showing how hard it was for him during the process.
Kelsey R.

Sometimes, where you’re going for your medical care can matter, too, because a lot of times, it’s overwhelming. We’ve just been diagnosed with cancer. We’re not thinking about anything other than how are we going to get through this. Am I going to live? Am I gonna lose my hair? What are the side effects?

Delishea, you went to two different medical centers. The first place was a lot more in the community then you ended up going to a big academic center.

Delishea: It was Baton Rouge General.

When I finally moved to a bigger center, I didn’t realize how much everything took a toll on me.
Delishea A.

Stephanie, The Patient Story: Yes, and so you had two very different experiences. The first hospital was very different in talking about mental health compared to the second one. Is that right? Two very different responses when they were talking about mental health.

Delishea: [At] the first hospital, that wasn’t even a discussion. It was basically just this is what you have, this is what treatment you have. The whole experience was lacking.

When I moved to a bigger hospital, they offered counseling. I wish I would have [taken] that opportunity. I didn’t realize how much it affected me.

We went through a hurricane and during that transition, my first hospital oncology center got damaged so I went through a period without getting any treatment — no treatment, not knowing where I was going to go.

When I finally moved to a bigger center, I didn’t realize how much everything took a toll on me. I had a panic attack one night. I knew I needed to talk to my doctor and be on some kind of anxiety medicine. Before that, I never really knew what anxiety was. I never had it that deep to where I was breaking down, so that was a big thing.

Stephanie, The Patient Story: I also appreciate that you’re talking about this because you have these two very different experiences. You didn’t even know what good care looked or felt like [until] you went to Baton Rouge. Was there anything in terms of finally being able to have that conversation? Did you notice an immediate shift [in] yourself? Was your quality of life different after?

Delishea: Oh, yes, very much. I wasn’t used to the small stuff — the snacks, the heated blankets. I didn’t even know it was possible. I felt like I was in luxury and it was just basic common patient care. Before, I didn’t even get that offered.

I love them — my nurses, my doctor. I love that whole team. It was just a big adjustment. Anything I needed, I could just say.

Stephanie, The Patient Story: Amazing. I’m so glad you were able to experience that shift.

Family Planning

Stephanie, The Patient Story: For Hodgkin lymphoma patients, a lot of the mental health piece of it is also being young when you’re diagnosed. [In terms] of family planning, Erica, you talked about being 37 at the time [and] talking to your doctor. Can you share more about what that conversation was like and how you had to advocate for yourself in that discussion and that conversation?

Erica: That first oncologist appointment was, to say the least, dramatic. I was getting diagnosed, not being listened to, and with my notebook in hand, I had a list of questions. My husband and I had just been married for a year and we were in the stages of family planning so that was important for me to ask [about] receiving chemo.

The doctor [said], “You’re too old. This is not going to happen. We need you to get treatment immediately because it’s going to explode.” It just was shocking having to forego an idea that I was planning on. The idea of exploding was really problematic for me.

Self-advocacy really played a role [at] that moment. I didn’t know who my next oncologist was going to be but I knew this was the oncologist who was holding me back from getting a second opinion on fertility treatment.

I asked, “I know this healthcare has a fertility department. Can I at least have a consultation with them?” He put me in touch with the fertility clinic that was part of the network, which was actually a really positive phone consultation. They just said, “We don’t know what happens, but you should go through the opinion of the oncologist.”

When I found my oncologist (that I went with) about two or three weeks later, I had the same conversation with them. Having already talked to the fertility department, he said, “I would just suggest you go through treatment because we don’t know what can happen.” He explained to me the process and I made the decision — just based on that conversation — to withhold it.

My husband and I had just been married for a year and we were in the stages of family planning so that was important for me to ask [about] receiving chemo.
Erica H.

Fortunately, removing Bleomycin was possible through my treatment because his researcher suggested that was going to be helpful afterward to be able to conceive as a possibility, and really respected the conversation throughout.

When I did receive remission, the first thing he said was, “All right, let’s get you healthy so that you can explore that conversation again.” It was just different. I really would say ask just for someone else who is an expert on that piece.

Stephanie, The Patient Story: Right, and don’t be afraid to ask. I think that’s the self-advocacy part.

I just found out that I had cancer so it never crossed my mind. I was just about to turn 30. I never thought about kids.
Delishea A.

It’s interesting. Kelsey talked about Bleomycin and [its] impact [on] the lungs. Now you’re saying that that could have an impact, too, in terms of family planning. All of this is a result of asking questions and digging deeper. The power of that is pretty incredible.

Delishea, you had two very different doctors as well. [Did] a nurse talk to you about that?

Delishea: At the very beginning, she brought up [the] possibility that I wouldn’t be able to conceive. But [I] just [found] out that [I] had cancer so it never crossed my mind. I was just about to turn 30. I never thought about kids. And I was stage 4 so she was like, “You need the treatment. You need it now.” I never explored that conversation of freezing my eggs.

Stephanie, The Patient Story: It’s just all these different experiences. Kelsey, did it cross your mind? You were diagnosed on your 26th birthday so there’s a lot going on. What was the consideration for you?

Kelsey: I was still broke, living with roommates, [and] just finished grad school. It really wasn’t on my mind. It wasn’t something my husband and I — or fiancé at the time — were talking about.

I actually had [the] opposite experience that Erica did. The doctors were really pushing me to explore preserving my eggs. I chose not to do that because I really just wanted to get on with treatment and didn’t want to go through another medical procedure. I was stage 2A so the doctors were able to give me a little bit of leeway there. I just wanted to get on with it. From the research I’d done — at my stage, with my amount of treatment — my chances of remaining fertile were pretty high.

It really wasn’t on my mind. It wasn’t something my husband and I — or fiancé at the time — were talking about.
Kelsey R.

Coming out of one of my biopsies, the nurse was telling me about her friend who’d had cancer and now she’s got like all these kids. At the time, [I was] just thinking, “I don’t care.”

Now, at 30, after having been married for a while, I think I would approach it very differently.

Stephanie, The Patient Story: Thank you for highlighting that. This is a very individual response. It’s all about knowing where you are, what you want, and then advocating for that so that’s going to look different. It doesn’t mean you have to advocate for family planning and freezing eggs and embryos. It also doesn’t mean you shouldn’t be asking. It’s what is good for you.

Tylere, you talked about your experience and your parents supporting that decision.

Tylere: I was 24 when I was diagnosed so this was definitely something that was discussed. My mom was pushing more for it. She would love grandkids, but I have an older brother, younger brother, and younger sister, and none of us have produced a kid for her yet.

The deal was that they would pay for the sperm being frozen. As of today, it is a very expensive child and we don’t even know if we will use that frozen sample or not. But that’s something that we did choose to do. Having the parents’ support in that and saying that they would help financially was a big [deciding] factor.

Stephanie, The Patient Story: Absolutely. There’s a financial consideration to this, [like] their storage fees.

My mom was pushing more for it. She would love grandkids.
Tylere P.

Survivorship

Stephanie, The Patient Story: Having this conversation as AYA or adolescent young adult is just so important.

I found email correspondence between me and someone I was matched to from Imerman Angels. I want to highlight this because having all of you on is a great example of the power of being able to find people who’ve been through it and can share experiences. I feel that’s how we learn what’s possible, by hearing from other people.

What [has] survivorship been like? Any guidance? It’s great. It’s also a huge drop in care for a lot of people; that can be really difficult. Any examples of advocacy during this time of survivorship?

Erica: I’ve now been in remission since March 2020. I take it a day at a time knowing that I can look forward and plan ahead on all things — family planning, building out my business.

What’s now part of my experience is being a resource and advocate for people who are going through cancer. I didn’t know that that was going to be part of my journey. Now that it is, I find it really important to advocate and make sure people know that there’s a whole network of people who are open to [talking] about it and [sharing] their experiences.

Stephanie, The Patient Story: Absolutely. Technology has been a big driver in opening different avenues of communication and figuring out your community.

I take it a day at a time knowing that I can look forward and plan ahead on all things.
Erica H.

Delishea: I [have] just been trying to rediscover what I can and can’t do. I learned that I don’t have the same energy as I did before.

I’d just [graduated] so I’m happy about that. I took time off. I chose not to go back to work [and] I’m fortunate that I didn’t have to. I’m about to try to venture back [into] the workforce because I’ve been having too much lax time.

Stephanie, The Patient Story: I’m biased, but I think you’ve been through it so I think you should take that time. I don’t think you have anything to apologize for there. I think go for it. But congrats on wrapping up school.

Trying to rediscover what I can and can’t do. I learned that I don’t have the same energy as I did before.
Delishea A.

Tylere: I always have a hard time with survivorship, especially having met so many other people who are no longer here with us, who went through similar things that I have. It’s just weird that I’m here, but they’re not.

That’s something that I was unaware of as I’m going through it and just being okay, cool, can’t wait to be done with this, and then we’ll never have to think about it again. Completely wrong. You will always think about this. Anytime you feel anything in your body, now that you are so attuned to what is happening, any little thing, you’re like, “Oh, and it’s back. We’re doing this again. Okay, here we go.”

It is nice being able to think ahead and not worry too much about some things. You can start planning ahead a little bit more. Even if you’re going through it, just plan ahead anyway. Focus on an end goal or on something longer term.

I didn’t know what lymphoma was when I was told and then found out it was cancer. [After] finding out I had it, I realized cancer was everywhere.

Be that person who reaches out and says, “If you ever need to talk, as someone who has gone through it, I would love to just talk to you about my experience,” and not be someone who’s offering solutions. Be a sounding board if you just ever feel stressed out. That’s how I handle it. Being a part of stuff like this is huge as well.

Something that I was unaware of as I’m going through it [was] you will always think about this.
Tylere P.

Stephanie, The Patient Story: Thank you for being a part of this. So much of what you said resonated with me. Being there for people and sharing experiences is very different than giving advice. It feels more like a connection.

I also agree [in that] I thought I’ll be done with this. Congrats on the five years. It’s weird to say because I’m also at five years. At any given time of the day, there’s a moment where I’m [checking my neck] because [it’s] where my lymphoma showed up. I feel like it’s a knee-jerk reaction.

It doesn’t stop just because the treatment stops. There are lasting effects to this that keep going and that mental health piece is also really important. Having people like you share is really critical.

It’s traumatic and there’s a lot going on… allow everybody a chance to just grieve that, process that, and give ourselves grace is so important.
Stephanie, The Patient Story

Stephanie C. holding balloon and flowers

It’s really easy to downplay in your head the impact that things had on you, especially for Hodgkin’s lymphoma patients.
Kelsey R.

Kelsey: The first couple of years after I finished treatment, I was going through a lot of changes on top of this. I had to push back my wedding so I finally got married. I started my career. I had three of my grandparents die within the next year after so there’s a lot going on at once.

My way of coping with it was just to try to make my life as aggressively normal as possible. I stopped going out, stayed in, was just cooking dinner at home, and just [tried] to be in a domestic, relaxed space. It wasn’t until more recently that I started thinking more about what I [wanted].

I’ve picked up my freelance writing business a little bit more and I started — with my mom and sister — a vintage furniture business that we’re really working hard on. Those things were not things I did at the beginning.

When you’re a young adult with cancer, you really can feel like you’re on an island by yourself. Those little moments of connection have been just massively important to my survivorship.
Kelsey R.

It’s really easy to downplay in your head the impact that things had on you, especially for Hodgkin’s lymphoma patients. It’s easy for us to be, “This [is] cancer with a high survival rate. I don’t deserve to feel so bad about this.” Realizing [that] no, this was a very traumatic event, mentally and physically, and I deserve to acknowledge that. Delishea, don’t beat yourself up for not rushing back into the workforce because you do really deserve that time to heal.

For me, as the rest of you have echoed, just being a contact for other people going through this has been really important. I had no resources. I had one friend who had had Hodgkin’s that I reached out to and then I found a couple of women on [an online community] who had had it. One girl, in particular, was just so kind and gave me so much information that I really made it a point to do the same.

I’ve actually had a lot of friends or friends of friends reach out to me just with cancer in general. I find that when you’re a young adult with cancer, you really can feel like you’re on an island by yourself. Those little moments of connection have been massively important to my survivorship because I don’t feel crazy. I don’t feel like this entire experience was something that I made up in my head.

Stephanie, The Patient Story: I love that everyone [was in agreement] when you were talking about letting everybody have time to heal, that everyone went through a traumatic experience, and not do the thing where it’s like, “Oh, well, it wasn’t as bad as the other person.”

Tylere mentioned losing people and there’s this “a better cancer.” No, it’s traumatic and there’s a lot going on and to allow everybody a chance to just grieve that, [to] process that, and give ourselves grace is so important.

Hodgkin Lymphoma Stories

Madi J., Hodgkin's, Stage 1B

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

Danielle D., Hodgkin's, Stage 2

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

Lani S., Hodgkin's, Stage 2

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

Jason F., Hodgkin's, Stage 2A

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

Logan A., Hodgkin's, Stage 2A

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

Medical Experts Multiple Myeloma Myeloma Myeloma_Updates Oncologist

Promising Multiple Myeloma Treatments ft. Dr. Saad Usmani

Post author By Katrina Villareal
Post date August 18, 2022
No Comments on Promising Multiple Myeloma Treatments ft. Dr. Saad Usmani

What’s Promising in Multiple Myeloma Treatment?

Dr. Saad Usmani & Cindy Chmielewski

What are the emerging, most promising therapy options potentially available in 2022/2023?

Cindy Chmielewski (@MyelomaTeacher) talks with Dr. Saad Usmani, Chief of Myeloma Service at Memorial Sloan Kettering, about CAR T-cell therapy, bispecific antibodies, novel therapies and combination therapies, focusing on the relapsed/refractory patient population along with newly-diagnosed myeloma patients.

Thank you to Janssen for its support of our educational program. The Patient Story has full editorial control of our content.

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

Table of Contents

CAR T-cell therapy
- What is it & who are they for?
- Where can you get CAR T-cell therapy?
- Side effects of CAR T-cell therapy
Who might have a greater tendency for severe neurotoxicity?
- Are there any trials for more newly diagnosed patients or first relapse?
Allogeneic CAR T-cell therapy
Efficacy of allogeneic CAR T-cell therapy
Are there any CAR T-cell therapies that are looking at different targets on the myeloma cell?
Bispecific antibodies
- Teclistamab
Possibility of getting bispecific antibodies at a community hospital
Side effects of bispecific antibodies
Frequency of subcutaneous injection
Efficacy in comparison to CAR T-cell therapy
Talquetamab
Bispecifics with other targets
Combination therapy
- TRIMM-2 Trial
Earlier lines of treatment
DETERMINATION trial
ENDURANCE Trial
New & exciting studies
CAR T-cell therapy for transplant-ineligible patients
Words of wisdom
What will cure myeloma?

Introduction

Cindy Chmielewski, @MyelomaTeacher: I’ve been living with myeloma since 2008 and more recently, became a research advocate in the multiple myeloma community.

Saad Z. Usmani, MD, MBA, FACP: I’m the chief of the Myeloma Service at Memorial Sloan Kettering Cancer Center in New York. I’ve been involved with myeloma research both on the clinical and translational side for well over a decade. I’m looking forward to so many exciting things that we have in the field and how things are moving forward for our myeloma patients.

CAR T-cell therapy

What is it & who are they for?

CC: There have been some meetings going on. There’s ASCO and EHA and the IMW is coming up. There are a lot of things happening in multiple myeloma.

Let’s start talking about the CAR Ts because CAR Ts have been around for a while. There are two approved CAR Ts. Can you talk a little about them and who they’re for?

Dr. Usmani: CAR T-cell therapies have been around for a while. They started early on in another disease — ALL in children, actually — but the ones that have been developed in myeloma are targeting a specific surface protein on the myeloma cells called BCMA.

There are two that are FDA-approved for patients who have had four or more prior lines of treatment — including a proteasome inhibitor immunomodulatory drug as well as anti-CD 38 monoclonal antibodies — people who have had a lot of prior therapy.

Those two products are called ide-cel and cilta-cel and they both target BCMA, but they are unique products. The general side effects are similar but tend to happen at different time points. Both products actually show good clinical activity.

The patient’s T-cells are taught to recognize the cancer cell and they’re grown outside the patient’s body in the lab.
Dr. Usmani

Where can you get CAR T-cell therapy?

CC: These CAR T-cells have to be given in a center of excellence, is that correct? I can’t just go to my doctor and say I want some CAR T treatment.

Dr. Usmani: These are cell therapy products so they need to be given at a center that does transplant and cell therapies. Many of our myeloma patients go for a transplant evaluation and end up getting a stem cell transplant during the early course of their treatment.
The process is similar. Your doctor is going to refer you to a transplant center. They will do the evaluation and then get you those commercial products.

Typically, when you’re getting a stem cell transplant, you go through a process of getting growth factor shots and then getting the stem cells collected from your bloodstream through central venous access. In CAR T-cell therapy, we are selecting T-cells from the patient’s peripheral blood, but you don’t need growth factor shots so you can get those T-cells collected just off of the peripheral bloodstream.

Side effects of CAR T-cell therapy

CC: There are some unique side effects to CAR T-cell therapy that maybe myeloma patients haven’t experienced before. Can we talk a little bit about them?

Dr. Usmani: When you get these T-cells from the patients, you send them off to the specific company that’s manufacturing them. What happens is the patient’s T-cells are taught to recognize the cancer cell and they’re grown outside the patient’s body in the lab essentially; that production and expansion takes 3 to 4 weeks. When that product is ready, it’s shipped back to the center and patients get a certain lymphodepleting chemotherapy for three days before they get that product infused through the veins.

Those T-cells are active. They know how to recognize the cancer cells through the surface marker BCMA and they’re going to expand. There’s an expansion that happens in the patient’s bloodstream. These cells are growing and trying to go after the myeloma cells. It’s like introducing an inflammatory response in the patient.

The side effects are like the patient’s body is going through an inflammatory process. The two common side effects are what’s called cytokine release syndrome. These immune cells are releasing certain chemicals that enable them to go after the target. Due to that, patients can feel fevers [and] hypertension, as if they were infected with something. That tends to happen with ide-cel within the first two days. With cilta-cel, it tends to happen with a delay of 5 to 6 days typically.

We manage those side effects by giving antipyretics, fluids, sometimes steroids, or an antibody called Tocilizumab to patients. But for the most part, these side effects are grade one or two. They’re low-grade and are managed with those kinds of medications.

The other side effect that can happen because these T-cells are active is what we call neurologic side effects. Sometimes patients can feel loopy or have neuropathy. Very rarely, patients can have more serious neurologic side effects, such as seizures. Those tend to happen in a very low proportion of patients. Neurotoxicity tends to happen more commonly with ALL CAR T-cells rather than the myeloma CAR T-cells.

The side effects are like the patient’s body is going through an inflammatory process. But for the most part, these side effects are grade one or two. They’re low-grade and are managed with medications.
Dr. Usmani

Who might have a greater tendency for severe neurotoxicity?

CC: Are there any biomarkers that predict who might have a greater tendency for severe neurotoxicity? Or is that just up in the air?

Dr. Usmani: What we’ve observed is patients who have a higher burden of disease at the time of getting CAR T-cell therapy can be at a higher chance of developing these side effects. One can develop CRS and neurotoxicity independent of each other so it’s not that they come in as a package. In fact, CRS is more common. Neurotoxicity tends to happen in less than 10% of the patients. CRS tends to happen in almost all patients to some degree.

There aren’t typically specific markers that we can follow that are specific for CRS or neurotoxicity. There are certain markers that can give you a hint that there is a heightened sense of inflammation, like serum ferritin levels or CRP elevations in patients. We tend to follow some of those labs, but they’re not predictive. They’re just telling you that something is going on, just be careful.

Patients who have a higher burden of disease at the time of getting CAR T-cell therapy can be at a higher chance of developing these side effects.
Dr. Usmani

Are there any trials for more newly diagnosed patients or first relapse?

CC: The currently approved CAR Ts are for more heavily pre-treated patients who’ve exhausted many of the options. Are there any trials that have been reported for more newly diagnosed or first relapse? Are they coming closer?

Dr. Usmani: There are two randomized phase 3 studies that have looked at comparing each of these CAR Ts — both ide-cel as well as cilta-cel — in one to three prior lines of treatment comparing them to the standard of care triplet regimens. In fact, BMS (Bristol Myers Squibb) just announced that their phase 3 trial in one to three prior lines of treatment is coming out positive. Now, this was a company announcement so we haven’t seen the data but that is good news for our patients. I’m keen to hear more about this.

The key is the process [of] CAR T-cell therapy. It takes a while for that production time and so there are certain bottlenecks to the process.
Dr. Usmani

We do have smaller cohort studies that have reported out experience in one to three prior lines or early relapse patients with very high response rates of 80, 90% with Cilta-cel. In fact, well over 90% with Cilta-cel. We just need more updated data, though those are looking promising.

The key is the process [of] CAR T-cell therapy. It takes a while for that production time and so there are certain bottlenecks to the process. The big question is how applicable this technology will be to all patients that we treat.

Allogeneic CAR T-cell therapy

CC: What about allogeneic CAR Ts? Are they going anywhere? What are they? Can you explain? They seemed a little exciting.

Dr. Usmani: The idea of allo CAR Ts is you can take T-cells from a donor but knock out certain surface markers to make those T-cells more benign so that the recipient’s immune system is not recognizing them as the enemy and they’re not recognizing the recipient’s immune system as the enemy.

The advantage of having allo T-cells utilized to manufacture CARs is you can have one donor and make a product that can be given to a hundred different patients instead of taking the patient’s own T-cells. And those hundreds of products can be given in a very short duration of time. Essentially, if I see a patient today and I have an allo CAR T available, that patient can technically get that product three or four days from now. They can start getting lymphodepleting chemotherapy and they can get that product very quickly. Whereas if I were to see a patient today and try to collect their T-cells, even with everything aligning, it might take 5 to 6 weeks for them from today to get that product. That’s the major advantage of allo CAR T products, but they’re way behind in terms of clinical development and seeing the light of day.

The advantage of having allo T-cells utilized to manufacture CARs is you can have one donor and make a product that can be given to a hundred different patients… but they’re way behind in terms of clinical development and seeing the light of day.
Dr. Usmani

Efficacy of allogeneic CAR T-cell therapy

CC: Do we have any efficacy data? Are they working?

Dr. Usmani: They are working. We have seen some efficacy data. There’s an Allogene CAR product. In fact, Sham Mailankody from my program presented those data [in 2021] showing about 60% of the patients responding to that allo CAR product.

Now, the follow-up is short. We know that these patients, too, get CRS and neurologic side effects but the follow-up was only about three or four months so we need [a] longer follow-up to see. Is this activity long-lasting or just a short-duration activity? What kind of long-term side effects do we get from using this strategy?

Are there any CAR T-cell therapies that are looking at different targets on the myeloma cell?

CC: Right now, the approved ones go after BCMA. Are there any CAR T-cell therapies that are looking at different targets on the myeloma cell?

Dr. Usmani: Yes. Another target is called GPRC5D. That was a homegrown CAR T at MSK (Memorial Sloan Kettering) that Dr. Mailankody presented, showing good activity in patients who have had prior BCMA CAR Ts and BCMA therapies as well. The response rates, again, [are] in [the] high 60, 70% range looking at the various cell doses that the patients received. That CAR T is now being developed by BMS. There are other programs that are utilizing that CAR T.

We also have some very interesting dual CAR T data — BCMA and CD19 CAR T — that was presented by colleagues from China at the ASCO and EHA meeting showing high response rates.

The cool thing about that platform was the short production time. That product was manufactured within 48 hours. What we’re seeing is the new platforms are actually reducing the production time and that will be a good challenger to the allo CAR T strategy. If we are able to shorten that time, then there might not be as big an advantage for an allo CAR compared to [a] patient’s own T-cells.

Bispecific antibodies

Teclistamab

CC: Moving on to other types of T-cell redirection, there’s the bispecific antibody. There’s one that I hear it’s almost ready to be approved. Can we talk a little about Teclistamab?

Dr. Usmani: It got a favorable response from EMA, but it’s not yet approved. We’re waiting to hear from the FDA. I’ve been involved with Teclistamab from the very beginning. In fact, the first patient who was ever treated in the world was my patient. I’ve been with that program from cohort one, patient one.

CAR T-cell therapies are very effective, but bispecifics are therapies that will change how we manage patients in the community at large. They actually might challenge CAR T-cell therapies because they’re an off-the-shelf option, giving high response rates of, again, 60, 70% in relapse/refractory myelomas — [a] very similar patient population to CAR T-cell therapies — and it’s given subcutaneously.

Now, cytokine release syndrome is something that we see with the bispecific antibodies as well and that’s something that we have to watch out for.

The concept of this technology is very interesting. You’re going to hear TCE or T-cell engager as terminology. You’re going to hear bispecific antibody as terminology. The concept is the same. One part of that molecule recognizes the surface marker on myeloma cells. It could be anything. It could be BCMA, it could be GPRC5D, or something else. The other part of that molecule recognizes the T-cells. There is surface marker CD3 that recognizes.

The difference between [a] T-cell engager and bispecific antibody is the structure of that molecule. If it’s a whole antibody, then you call it a bispecific antibody. If it’s only a fragment of an antibody, you call it a T-cell engager.

Different companies and platforms have different molecule structures that are proprietary so the names are going to be different. Long explanation but a lot of excitement about that technology.

Teclistamab is the frontrunner. We might hear some good news about it later [in 2022] in the US and Europe. We’re all really excited about that platform.

Possibility of getting bispecific antibodies at a community hospital

CC: For patients, it’s exciting because it doesn’t involve having to probably relocate like the CAR T-cells. You have to go to a CAR T center and spend time away maybe from your home and family. Would the bispecifics be something that could be given maybe at [a] community hospital? Or is it something that you need to go away for?

Dr. Usmani: I think there will be a learning curve for our community physicians because giving bispecifics does require some education and comfort in managing cytokine release syndrome. It’s quite possible that they might ask the academic centers to give the first cycle of treatment.

Patients do need to be monitored during that first cycle as they’re going through the various step of dosing to full dose for that cytokine release syndrome. And because our community colleagues don’t see myeloma as frequently as some of the other solid tumors, they might ask us to give that first cycle.

Once patients are beyond that first cycle, it’s like getting any subcutaneous treatment so the short answer is yes, it will be possible for patients to receive this treatment out in the community. But I don’t see this happening during the first year of the FDA approval. It will be a steep learning curve for our community docs.

Side effects of bispecific antibodies

CC: Usually after the first cycle or two, the CRS and the neurotoxicity seem to go away?

Dr. Usmani: The likelihood of having those side effects is during the first three or four doses, so that first month. It’s really about engaging the T-cells.

Once the T-cells are active, they know exactly what to do, and they’re fine with the job assigned to them, it’s that early part where you’re trying to say go and kill the myeloma cells. They get revved up and release those cytokines. Once that process is done, the risk goes down to negligible.

Yes, it will be possible for patients to receive this treatment out in the community. But I don’t see this happening during the first year of the FDA approval.
Dr. Usmani

Frequency of subcutaneous injection

CC: For Teclistamab, is the infusion weekly [or] monthly? How often would I need to get this subcu injection?

Dr. Usmani: The subcu injection is on a weekly basis. [For] the first ten days, the step of dosing is given every fourth day for the first two doses before you get the full dose. That’s how it was done in the studies. I would be surprised if the FDA-approved label says something different. But again, we will know what the FDA says later [in 2022].

Very interesting and very encouraging data for our patients who have had triple-class refractory disease.
Dr. Usmani

Efficacy in comparison to CAR T-cell therapy

CC: What about the efficacy? How does it compare to CAR Ts?

Dr. Usmani: Response rates are around 63, 64%, which is very high. The median PFS (progression-free survival) is about a year, almost 12 months. The approvals for Carfilzomib, Pomalidomide, and even Daratumumab, the response rates were 25 to 30% for each of those products and the PFS for those products was about four months.

That gives you the context that you have this bispecific antibody, these are patients who have progressed on treatments like Carfilzomib, Pomalidomide, and Daratumumab, and you’re still seeing these high response rates and median PFS. In fact, the median PFS is similar to what was reported for ide-cel. Ide-cel’s PFS was less than a year and the response rates were over 70%, but median PFS was in a similar range. Very interesting and very encouraging data for our patients who have had triple-class refractory disease.

Talquetamab

CC: There are other bispecifics besides Teclistamab. There’s Talquetamab. Is that going after the same target or a different target?

Dr. Usmani: It’s in the same patient population, but the target is GPRC5D. GPRC5D is a unique target to plasma cells. Talquetamab appears to be active. Response rates are up in the 60% as well.

We don’t have the PFS data because the development of that particular bispecific is a little behind Teclistamab, but we’re seeing activity of Talquetamab even in patients who have had BCMA-directed treatments, including CAR Ts and bispecific. It’s looking very promising.

Bispecifics with other targets

CC: There are many others, not just these two. There are a lot of bispecifics out there. Are they all doing quite as well?

Dr. Usmani: Yes. For BCMA-directed bispecifics, there are several options. Elranatamab is very active. ABBV-838 is very active. There’s a Regeneron bispecific. There’s a BMS Celgene T-cell engager that’s targeting BCMA as well. All of them are showing very similar activity. I think there are some differences in the safety profile percentage of patients getting cytokine release syndrome when they’re getting it. Some of those issues will be the distinguishing factors.

There are some that are given less frequently. I think the AbbVie bispecific, which was actually developed by a smaller company called Teneobio, is given every three weeks. There will be some nuances or differences between these BCMA-directed bispecific.

It’s good to know that there are other targets where we can see good clinical activity in patients.
Dr. Usmani

For GPRC5D, we only have one, but there are others that are in early development.

We have another target called FcRH5. There’s an antibody called Cevostamab, which appears to be active, [with] response rates of about 50% in patients who have relapsed/refractory myeloma beyond four lines of treatment.

It’s good to know that there are other targets where we see beyond BCMA and even GPRC5D where we can see good clinical activity in patients.

CC: As a patient, that makes me feel good. Even though some people say you might be able to use another BCMA-directed therapy, for me, I would like to have another target in my back pocket.

Combination therapy

TRIMM-2 Trial

CC: TRIMM trials are not only using the bispecifics, but they’re combining them with things. Can you talk a little bit about those?

Dr. Usmani: Once the efficacy and recommended phase 2 dose of both Teclistamab and Talquetamab were ascertained, the next step was can we combine them with other myeloma treatments and see if we get better clinical activity.

The TRIMM-2 study is looking at the subcutaneous Daratumumab administered with Talquetamab as well as with Teclistamab. There is a combination study of adding Pomalidomide to those combinations as well. We haven’t heard about the Pom combos, but we know the subcu data combinations. They have been reported out by my colleagues — Drs. Krishnan, Ajai Chari, van de Donk — each of them presented these data at different congresses over the past six or eight months, and I’ve participated in those studies as well. The overall response rate with each of those combinations is about 80 odd percent, which is remarkable because most of these patients were Daratumumab refractory in a previous line of treatment.

Why are we seeing a higher response rate compared to what we would expect with Teclistamab and Talquetamab? Daratumumab also is inhibitory to regulatory immune suppressive cells by virtue of blocking CD38 so it’s really acting as an immune modulator and enhancing the effects of these. I feel that’s probably the reason why we’re seeing this activity.

Those are very high response rates. With both Teclistamab and Talquetamab, the responses are in the 60%, but you’re seeing a higher percentage. Very encouraging. It means that we can potentially use this combination in earlier lines of treatment, even for newly diagnosed patients. It would be really cool to have a non-chemotherapy approach just using antibodies.

CC: Right now, is it still in that triple-class refractory population?

Dr. Usmani: Yes, but there are clinical trials in earlier relapse and even in the newly diagnosed setting being planned. They’re not in the public domain yet, but they’re planned and we are probably going to have these bispecifics examined for newly diagnosed patients.

CC: Yes, that might be something to consider for the high-risk group, which is really still quite an unmet need here in myeloma.

Earlier lines of treatment

CC: There was a trial that was presented that talked about RVd plus or minus Elotuzumab. Was that correct?

Dr. Usmani: Yes, this was an update from the SWOG-1211 trial.

To give you a context about high-risk patients in general, myeloma is a very heterogeneous disease. Biologically, we have eight or nine different subgroups depending on how you classify it on a molecular basis. From a clinical behavior standpoint, the way that we classify myeloma is patients who are at a higher risk of relapsing early after getting front-line treatment compared to those who have standard risk; in those patients, we don’t expect the myeloma to relapse early.

High risk is defined by certain clinical features, such as circulating plasma cells or extramedullary myeloma, or certain stereotypic abnormalities, like translocation for 14, 14;16, 14;20 or deletion 17p as well as amplification of 1q21. The SWOG-1211 was the first clinical trial that I had the privilege of designing and running when I was a junior faculty within the US cooperative group setting focused on high-risk myeloma. If you look at all the clinical trials, all the major studies that have been reported, they take all comers — any myeloma patient can participate. What we recognized as clinicians is high-risk patients don’t do well.

The idea of the SWOG-1211 was [to] design a trial just for high-risk patients and see if we can make a difference for those patients; that was the first effort. The idea was [to give] RVd for induction and then [continue giving] RVd as maintenance — the dual PI/IMiD maintenance strategy. Then in the experimental arm, Elotuzumab was added to that same RVd backbone, both in induction as well as maintenance. It was a randomized phase 2 study and the study did not show a benefit of Elotuzumab adding anything to RVd. However, the trial showed better PFS than our historic control. The median PFS for just the RVd was about 34 months. Our assumption was that the median PFS for those patients would be about 26 months and that assumption was based on patients getting tandem transplant so this was from the total therapy time. The RVd arm actually performed better than the older therapy.

SWOG-1211 set up a benchmark for other high-risk trials to follow. At the ASCO meeting, we heard about a UK study looking at KRd-Dara for high-risk patients. There’s an IFM trial and there’s also a KRd-Isatuximab study from the German myeloma group. These are smaller single-arm studies that are trying to do the same thing — do enrichment design trials for high-risk patients.

I wanted to give the whole context of why that study is important. The results by themselves for SWOG-1211, it’s considered a negative study because Elo (Elotuzumab) didn’t add anything. But then it set up a very important benchmark for other studies to improve upon.

CC: That’s good to know. I really didn’t know that background and I’m glad to hear that more and more studies are just targeting that high-risk myeloma population. It’s so important to figure out how can we control that disease early on in that group of people.

DETERMINATION trial

CC: How about the DETERMINATION trial? I hear so much about it. I still haven’t quite figured out what the results mean. Can you try to clarify that?

Dr. Usmani: It’s very interesting. It’s a positive study. The primary endpoint for this particular trial was showing PFS benefit between doing an early transplant or delaying it at the time of the patient’s first relapse. There is a 21-month benefit in favor of doing [the] transplant early for that young myeloma patient.

The median age [in] this study for patients enrolled was 55 years so this is a young patient population. This is a sister trial to [the] IFM 2009 study that had already been reported out about five years ago.

The depth of response in terms of MRD (minimal residual disease) negativity and sustained MRD negativity appears to be higher in the transplant arm as well. The study has a median follow-up of about 70 months and, at that point, median OS (overall survival) has not been reached in either of the arms.

Some investigators, the way that they’re framing that is incorrect. They’re saying there’s no difference; that’s not how you read the statistics. You don’t say there’s no OS different at a time point when the median OS has not been reached in both arms because there’s not enough follow-up. If that was the case, we would be saying the same thing about the MAIA trial, the ALCYONE trial, the CASSIOPEIA trial… All of those trials had no OS benefit when they were reported out because the median OS had not been reached in those arms.

The new questions should be what about CAR Ts [and] what about bispecifics? We’re designing trials with that question in mind.
Dr. Usmani

The other important thing that we see is there is no difference between the two arms between second primary malignancies as well. The second primary malignancies that people get in one arm over the other are different, but the overall percentage is about 10-odd percent that was reported out. Again, that’s my take on the study. It really doesn’t add any new information. We already knew the IFM 2009 study data.

What it does augment is the use of Len (Lenalidomide) maintenance because the IFM 2009 study stopped maintenance after a year but the DETERMINATION trial continued maintenance for everyone until relapse, progression, or intolerance. The study really doesn’t add a lot more to what we already practice.

I hope that this is the last trial that we’re thinking about early versus late transplant because that is an old question. Now, the new questions should be what about CAR Ts [and] what about bispecifics? We’re designing trials with that question in mind. I think there’s a lot of hype around DETERMINATION but really it’s hype. I don’t think it adds much to what we are doing right now.

CC: Early transplant means transplant is part of your induction therapy. Late transplant means at first relapse. Is that what the trial was talking about?

Dr. Usmani: Yeah. Both arms did pretty good in terms of median PFS. Median PFS if you got [a] transplant was around 68 months. Median PFS if you just got RVd and delay transplant was about 47 months. There was a 21-month difference in favor of early transplants.

The follow-up is short on the study so you’re not going to have a lot of people even in the RVd arm relapsing to get their transplant.

Myeloma patients are doing so well today. The median OS is at least 10-plus years. You can just say after a four or five-year follow-up that we’re seeing OS differences. I’m hoping that by the time we get the DETERMINATION OS data, it’s going to be ten years from now. Because our patients are going to be doing so well that we’re going to be looking at this historic data and saying it was a good question at that time, but probably not relevant to us by the time that reads out.

CC: Exactly. In ten years, who knows what our induction therapy is going to look like? Much better, I’m thinking.

ENDURANCE Trial

CC: What about the ENDURANCE trial? Can you talk a little bit about what that was?

Dr. Usmani: The ENDURANCE trial ran side by side [with] the SWOG-1211 study and it was asking an induction question for standard-risk patients. Is KRd better or RVd better for induction?

ENDURANCE was a randomized phase 3 study. Half of the patients got Carfilzomib with Len-Dex (Lenalidomide-Dexamethasone) as induction. The other half got VRd or Bortezomib with Len-Dex as induction for eight cycles. Then everyone got Len as maintenance.

This study enrolled standard-risk patients because high-risk patients were going on the SWOG-1211. Translocation for 14 patients were enrolled [in] this study as well.

Trial readout [showed] no differences between PFS on either arm of the study. Essentially for standard-risk patients, it established RVd as the right treatment choice just like the SWOG-777 trial had shared with us.

The other interesting thing about the median PFS of RVd on the ENDURANCE trial is the median PFS was around 34 months. Again, the SWOG-1211 with the PI/IMiD maintenance showed the same thing. My colleague, Shaji Kumar, presents this slide saying what makes the difference in high-risk patients is the dual maintenance if you look at the ENDURANCE trial and SWOG-1211 together because both of these were enrolling at the same time.

CC: So dual maintenance is what’s happening now in high risk?

Dr. Usmani: For high-risk patients.

New & exciting studies

CC: Anything else that we should be talking about? Anything else new and exciting?

Dr. Usmani: There are a lot of new trials that are in the works. There’s the CARTITUDE-5 study, which is looking at patients getting RVd as part of induction. These are patients who either are transplant ineligible or they’re deferring their stem cell transplant to first relapse. Everyone gets RVd as part of induction treatment but then half of the patients get randomized to getting CAR T-cell therapy; [the] other half move on to their maintenance treatment. The people who get the CAR T-cell therapy don’t get any maintenance. That’s a really cool study. We’re hoping that it can provide a good answer for those patients.

The second trial is actually looking at transplant-eligible patients. Everyone gets the quadruple regimen of Daratumumab with RVd and then patients get randomized to either a transplant or CAR T-cell therapy. That’s a very exciting study. We’re hoping we can get a positive answer for our patients.

High-dose Melphalan and transplants have been a part of myeloma treatment for a long time but if we can replace them with another cellular therapy approach, which is more specific to the myeloma cells, I would really welcome that.

CC: I would welcome that, too.

CAR T-cell therapy for transplant-ineligible patients

CC: When you talk about transplant-ineligible patients — there’s that group of patients that really are not eligible for transplant for whatever reason — would those group of patients not be eligible for CAR T-cell therapy or would they be possibly eligible? I know you have to look at them individually, but as a group, is it just like you’re not eligible for this or you’re not eligible for that?

Dr. Usmani: We are a little bit more lenient in CAR T-cell therapy eligibility compared with stem cell transplantation because patients are not getting the same level of myelosuppression with high-dose chemotherapy like a stem cell transplant. There might be patients who are in their mid-70s or even late 70s who are able to get CAR T-cell therapy that we would not necessarily pick for transplantation. We’re thinking about CAR T-cell therapy in a more lenient way because of the safety profile.

CC: That’s good to hear. It’s just amazing all these new therapies. When I was diagnosed back in 2008, most of the things we talked about weren’t FDA-approved except Revlimid and Velcade.

Words of wisdom

CC: When you see a newly diagnosed patient or even an older patient who may be relapsed/refractory, how do you provide them with hope with all these new treatments? What are your words of wisdom to these patients?

Dr. Usmani: I give them the context. I tell them about the time when I was starting in the field in the early 2000s and how the outcomes were for myeloma patients. I walk them through how things have improved, what our goals and expectations are today for our patients, and the treatment options we have. I provide them with measured hope.

We do recognize that myeloma is still not a disease that we can cure, but we can control it for a long duration of time. Even for patients who have high-risk myeloma, we’re thinking about things in a different way and trying to be proactive in giving different strategies for those patients rather than just treating them in a vanilla, one-size-fits-all way. I provide that context to patients and then it’s really about individualizing treatments based on patient preference as well. This is really a partnership. Our job is to provide patients with as much information as they can gather to make good, informed decisions.

I give them the context. I provide them with measured hope. We do recognize that myeloma is still not a disease that we can cure, but we can control it for a long duration of time.
Dr. Usmani

What will cure myeloma?

CC: Good. Now, you did mention the word cure. Do you think we’ll be curing any myeloma patients any time in the future? What do you think that would look like?

Dr. Usmani: I would say, yes. This is something that I’ve shared on other forums as well. If we’re able to get patients to MRD negativity and maintain them in that negativity for a certain period of time and then stop therapy at that time, then we can functionally cure [a] majority of patients.

Myeloma is a disease that tends to occur later in life. There are other competing health issues that patients have so a true cure cannot be determined in that situation compared to someone who was 20, got diagnosed with cancer, and dies of a heart attack at 90. You can say this person was cured [of] cancer. You can’t say that about a myeloma patient who’s getting diagnosed in their sixth or seventh decade of life.

If you can kick myeloma down to undetectable levels, start treatment, and patients continue to thrive for years and cancer doesn’t come back, in my mind, that’s functional cure.

My answer is yes, we’re going to get our patients there. The key would be finding the right recipe to get patients to that sustained MRD negativity before stopping.

CC: Right, and now we have so many ingredients for that recipe that I’m sure we’re going to find it soon.

It’s really about individualizing treatments based on patient preference as well. This is really a partnership. Our job is to provide patients with as much information as they can gather to make good, informed decisions.
Dr. Usmani

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ABVD Cancers Chemotherapy Classical Hodgkin Lymphoma Neulasta

Kelsey’s Stage 2A Hodgkin’s Lymphoma Story

Post author By Katrina Villareal
Post date August 9, 2022
No Comments on Kelsey’s Stage 2A Hodgkin’s Lymphoma Story

Kelsey’s Stage 2A Hodgkin’s Lymphoma Story

Kelsey was diagnosed with stage 2A Hodgkin’s Lymphoma at a young age. She shares her story of going through chemotherapy, why she decided not to freeze her eggs, and how important it is to speak up and advocate for yourself.

She also shares how getting into fashion and style and discovering comedy helped her at a time when she felt like she was losing her identity.

Name: Kelsey R.
Diagnosis:
- Hodgkin’s Lymphoma
- Stage 2A
Initial Symptom:
- Bad leg itching with no rash
- Enlarged lymph nodes
Treatment:
- ABVD chemotherapy
- Radiation

It is single-handedly the most important thing that’s ever happened in my entire life. Good and bad but mostly good, honestly, in terms of what I’m doing with my life now.

Kelsey R. with platinum blonde hair with her husband

The Patient Story retains full editorial control over all content. This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Pre-diagnosis
Diagnosis
Treatment
Advocating for yourself
Taking a more active role in your care
No evidence of disease
- Dealing with scanxiety
Fertility treatment
Self-discovery during cancer
Survivorship
- What does it mean to you?

Pre-diagnosis

Tell us a little bit about yourself

I am originally from Arkansas, from a town called Bentonville. I’ve lived in Austin, Texas, for almost a decade. I moved down here after college.

I’m a historian. I have a master’s degree in historic preservation. I work with buildings and objects.

I co-own a vintage furniture store with my sister. We mostly sell online and that’s really fun.

I’m also a writer. I do some work with The Patient Story. I’ve done some comedy writing in the past with different outlets like CollegeHumor and dabbled in stand-up a little bit.

I have a lot of jobs. I’ve also been an architectural historian. I do survey work and things like that.

The doctor comes in and he just turns ashen-faced immediately when he feels my neck. He leaves and I know something’s up.

Kelsey R. holding her Masters degree certificate

What were the first symptoms?

It was August 2017. I was finishing up my master’s degree at the University of Texas. I was spending all summer writing my thesis, super exhausted, stressed out, [and] not feeling too great. I was having a lot of allergies. If you’ve been to Austin, you probably had some flare-ups so it’s not uncommon.

I had a lymph node that started growing on the back of my neck, about the size of a quarter. I went to my primary care doctor to get some routine medications filled and was like, “By the way, I got this thing. Probably nothing.”

I’m kind of a natural hypochondriac. I trained myself to be the opposite. I was like, “It’s probably nothing,” and they got me some antibiotics.

It didn’t do anything so I came back. Another round of antibiotics didn’t do anything. My primary care doctor said, “If this [lymph node] wasn’t moving, I would be worried this was cancer.”

When I went back for the last time and it hadn’t done anything, they referred me to an ENT. They had me do some blood work, which came up clear essentially and I did a little celebration. I went to the ENT and he prescribed me more antibiotics.

When I went for my follow-up, I had this lymph node — my supraclavicular lymph node on my right side — grow to about the size of an egg, literally overnight.

I went in [and] I remember I had no air conditioner in my car. It’s Austin in August. I’m melting. The nurses are like, “Oh, you poor thing.”

The doctor comes in and he just turns ashen-faced immediately when he feels my neck. He leaves and I know something’s up when the nurse comes in and hands me an ice-cold bottle of water. She’s like, “I figured you’re hot.”

My doctor came back in and he was very concerned. He said, “I want to do a needle biopsy.” It was just this moment. “Wait. What? Whoa, whoa. Where’s the antibiotics? Give me more of those.” Totally not on my radar.

Getting a biopsy

He did an ultrasound. He did the needle biopsy and it didn’t hurt at all. I said something along the lines of, “But aren’t cancerous lymph nodes not supposed to hurt? Because this one hurts pretty bad.” He was like, “Well, I just stuck a needle in it and you didn’t feel it.” I was like, “Oh.”

Then he was talking to me about results and when I’d get them. I just remember looking at him, “But tomorrow’s my birthday,” like that was going to make him not diagnose me with cancer. He looked at me and just went, “Uh, happy birthday…” like he was trying to be nice. He had no idea what to say. He’s fantastic but I’ll never forget the look.

The next morning, I woke up to a phone call from the nurse that they thought it looked like lymphoma and they wanted me to do a neck dissection biopsy.

It was horrible. I woke up on my birthday [to a] 9 a.m. phone call. I just sat there and bawled in my bed for a couple of hours [and] called my husband — or my fiancé at the time. My fiancé had called my two roommates and let them know what was going on.

When I walked out of the room, I just fell into their arms. It was very sweet. They’d gotten me [food] for my birthday. They tried to make it fun.

I remember thinking, “This is actually a relief,” because lymphomas are typically pretty treatable. I remember that was part of it.

I’m a hyper-paranoid person. I’ll just go down a rabbit hole. By the end of that night, I knew what every lymph node was called, what it drains to, and what it could possibly be. I knew that this one swelling was really, really not a good sign. He had told me he was thinking lymphoma would be the most common thing and that was what I really had dug into.

Honestly, that’s such an anxiety-inducing time. The wait is the worst.

Diagnosis

Did you have anxiety waiting for results?

Yeah, it was horrible. Honestly, that’s such an anxiety-inducing time. The wait is the worst. Not the worst in terms of how you’re feeling but emotionally it’s horrible.

It took them a really long time to get me diagnosed. I went in for one surgery and it was inconclusive. Then I went in for another neck incision.

I was laying after in recovery. This nurse comes in and I learned my ENT was super adamant about getting a good sample. He made sure there were conclusive results before he woke me up.

I knew then.

Then there was the PET scan that would show the spread. When I think of some of the worst days in my life, the day I had that PET scan was just horrible because not only are you jacked up on a weird carb-free, caffeine-free diet, but you’re just sitting there while something is telling you how bad it’s going to be. I’ve never felt that way. It was horrible.

At that point, I had already been through so much analysis. I had been through so many different tests and still had tons to go before I could start chemo. I was just exhausted. My parents were there and they were emotionally exhausted.

Something about having a machine analyzing me for an hour or so and telling me my chances of living. It was just really difficult for me to handle. I remember they were putting me in the machine and that version of Despacito with Justin Bieber came on and I made them change the music for me. It was a big party song that summer. “Please turn this off.”

I remember leaving the PET scan upset and just collapsing in my dad’s truck and having an upsetting conversation with him. He was always the one that had the answers for me and he didn’t have them this time. It was just one of those things where I think we were just so emotionally exhausted that we just kind of collapsed.

Getting the official diagnosis

Once I was staged, it was just a matter of getting going. My anxiety was so much better. I think the worst part was knowing and then knowing what I had, but not how bad it was.

I had a friend recently with Hodgkin’s lymphoma and his was refractory. He’s fine now but it was a very scary ordeal. That was my only experience with lymphoma was his experience.

Once I was staged, after that it was just a matter of getting going. My anxiety was so much better.

Breaking the news

I told friends pretty much as soon as I knew because I don’t hide things very well and that’s huge. It’s not a little thing that I’m hiding. People were trying to see what I was doing for my birthday so people were already texting me a lot. I was filling people in.

Processing the diagnosis

I’m a go-getter. It was pretty much, “All right, let’s do it. Let’s get it over with.” That was kind of my immediate reaction.

Looking for an oncologist

Once I got a preliminary diagnosis, my ENT referred me to an oncologist in town [who] he refers a lot of people to [and] that he really liked. I was a little hesitant.

We live two and a half hours from Houston. We were close to MD Anderson. They were on my insurance and they had saved my grandmother’s life. We already had a relationship with them. I was pretty adamant about getting a second opinion there.

I know that with my diagnosis, it probably wasn’t necessary but I don’t regret going and getting that second opinion. I told my ENT that I was going to do that and he was like, “Yeah, you do what you need to do. I’ll just let you know that I have referred lots of people to this person. I had a really good friend who went to MD Anderson and then came back and ended up sticking with this person because they just liked his bedside manner so much more.” I was like, “Okay,” and that is what actually happened.

He was a really fantastic doctor who was really optimistic and very, very knowledgeable and listened to me. My doctor at MD Anderson, while brilliant and lovely, just felt very impersonal. I don’t really feel like I got much out of that. I did end up doing my radiation there, which I don’t regret at all.

I came back to Austin after I got my second opinion and stuck with [the] doctor that I originally had seen. He is the doctor I still go back [to] for my checkups.

When someone is in charge of saving your life, you want them to actually care about your life and find it interesting and important.

Importance of a good patient-doctor relationship

I wanted someone that was willing to answer my questions and actually take time with me. But also I think that the thing that still draws me to this doctor or any doctor I’ve had is interest in me as a person. When someone is in charge of saving your life, you want them to actually care about your life and find it interesting and important.

Like I said, MD Anderson, lovely doctors, lovely researcher, but she didn’t care what I do for a living. She didn’t care about me at all.

My doctor knows me very well and all the nurses and everyone there knows me very well. I think, for me, that was really important because it made me feel like they would actually respond to my concerns because I wasn’t just another test in a tube or something.

I went to Texas Oncology. They have lots of different branches in Texas. There was one that was about five minutes from my house, which is great. It rocks.

Treatment

ABVD chemotherapy

I started ABVD in November. September 22nd was the day I got diagnosed. That was my birthday. I didn’t start until right before Thanksgiving. It was a two-month wait until my first round.

My first round, I was terrified, obviously. I started feeling improvement [in] my symptoms almost immediately. I was really lucky that I didn’t have an allergic reaction or anything to the chemo itself. My initial reaction was pretty mild. I lost a little hair. I ended up shaving it anyway after that.

I was mildly sick but my itchy legs resolved immediately. I think that that was also possibly because my immune system was being repressed. It was very crazy. I immediately felt better after my first round.

Side effects from chemotherapy

Hair loss

It was surprisingly not that emotional for me. I’d always had really long hair. The year before that, I had just chopped it all into a really short bob. I’d already made that leap and then when I found out I was going to lose my hair, I started dyeing it weird colors, having fun with it, and cut it into this really cute super, super short cut that I would never just do on my own.

After my first round, [my hair] was starting to fall out so I shaved it. I had fun with it. I don’t want to be bald again. I don’t think it’s a good look for me but I wasn’t super torn up about it.

My mom actually owns a wig shop. She owns a store that sells wigs and breast prostheses and bras for breast cancer patients since the 90s. I’ve been around wigs my whole life so she hooked me up with a couple that I would wear sometimes. I was more au naturel. I was also in Austin in the winter and it wasn’t really that cold so it was fine.

Did your grandmother inspire your mom to open a wig shop?

My grandmother actually opened a store first when she was going through cancer. She ran a hair salon and beauty supply store. She always sold wigs in Joplin, Missouri.

Whenever she started going through cancer, she realized there was nowhere for her to get breast forms — she had a double mastectomy — or bras or anything that wasn’t in a weird medical facility with dudes running it. She started selling those things. She became one of the only providers in the region for that.

Then, I believe, in 1997, she helped my mom open a similar store in northwest Arkansas, which is about an hour away. It was very successful.

Nausea

I got a list — I’m sure most people do — that’s about 20 pills long of, “If this doesn’t work, move here. If this doesn’t work, move here.” I was very on top of my anti-nausea meds. I think I had [Dexamethasone]. I had steroids. I had Olanzapine, which I didn’t like what it did to my head but it was so good. I had almost no nausea. It was actually pretty incredible.

Kelsey R. wearing a long pink blonde wig

[Olanzapine] made me feel really paranoid. I took a lot of Lorazepam for nausea, that was one of the main ones.

I had a friend send me some cartridges of medical marijuana from L.A. That made me such an advocate for medical marijuana. I was never anti-marijuana but when I’m taking this at a particular dosage for a particular reason, this cut through four different anti-nausea meds that I usually take, which are really messing with my head. It became one of those things where I was able to cut out certain meds just by substituting that. It was honestly pretty incredible.

He did it without asking me because he didn’t want me to be liable for anything. It showed up. I was like, “Okay. I’ll give it a shot.”

Neutropenia

After my first round, I went in for my second infusion and they did all the blood work. They were like, “Whew, that really knocked out your white blood cells.”

They were telling me that neutropenia is pretty common in Hodgkin’s Lymphoma patients, which weirdly went against what the MD Anderson doctor told me. But that was my experience, that it was common.

I had a really low white blood cell count the whole time and they could not give me Neulasta to up my white blood cell count because it would interact negatively with the Bleomycin — the B in ABVD — so I couldn’t have that. I just had to live with it. I was just careful and it was fine up until Christmas.

About halfway through my infusions, I got pneumonia and ended up in the hospital for almost a week in Arkansas. It was the lowest point in my cancer treatment. There was a man in the room next to me that was screaming in pain the whole time. And it was a really bad flu season. It was just very scary. It was horrible.

It made the whole ordeal way less scary once I was able to have some protection against infection.

Reading up on Bleomycin

When I got back to Austin, I had read a bunch of studies and research because that’s the kind of person I am. I had read something about how people who were going through a certain amount of rounds, which was slightly more than mine. If after two cycles they had no evidence of disease — which I had at that point, I had a clear PET scan, which was awesome — then you could remove the Bleomycin for the remainder to lower that toxicity because it’s very bad for your lungs.

I still have scars on my wrists from when I scratched myself when I was on it, like on my arms. The Bleomycin made me scar so easily. I just did it [lightly but] it would leave a permanent scar. [Then I thought,] “What’s it doing to my lungs? I don’t like this at all.”

I took that study to my doctor and said, “I know that I’m on fewer cycles but in this study, after two cycles they were able to remove the Bleomycin. Would I be able to do that so that I could take the Neulasta? I feel like my risk of ending up in the hospital again is more dangerous at this point than my risk of relapsing or having refractory disease from not being in the clear.” He agreed with me. He was very familiar with the study and he was like, “Yeah, I think that actually makes a lot of sense. We can do that.”

They removed the Bleomycin for my last two or three cycles and I was able to have the Neulasta. It upped my [blood count] really well and it was such a huge relief the rest of the time. It made the whole ordeal way less scary once I was able to have some protection against infection.

Do you think about what would’ve happened if the Bleomycin hadn’t been taken out?

I could have ended up in a worse situation in the hospital again because the infection I was in there for was not that bad. I was still there for a week. I think about my lungs. I don’t have any scarring and my lung capacity is fine so I’m really, really grateful for that.

The hospital was just such a wake-up call and I wanted to do everything I could to minimize side effects down the road. That was just really, really important to me.

Feeling vulnerable to infection

Most people got a taste of it during the beginning of the pandemic when we were all like, “Lysol everything. You can’t touch anything.”

I remember we were driving back to Austin after this hospital ordeal and my dad was sanitizing the McDonald’s cup that he went inside and got for me. It was like a containment chamber. He’s a little protective but that’s how it felt. It just felt like every single thing was a danger to me. I had to insulate myself in this little bubble.

It was also really scary. I was living with two roommates but they were really, really good about it, making sure they weren’t bringing stuff in the house or just letting random people come over, especially during flu season. But I think if they hadn’t been, I can’t control them. I’ve heard plenty of people have stories like this, so very similar.

Did having a friend who had refractory Hodgkin’s lymphoma impact the way you thought about treatment?

I didn’t think that because I don’t think that there was anything that the doctors could have done differently with his initial treatment. He had very bulky lymphoma in his chest and it was responding. Then the last couple of scans, it just stopped responding. He had a stem cell transplant. He’s doing great now, has a new baby, and life is wonderful. I’m really, really happy for him.

At the time, it wasn’t as much with the treatment. It was funny because I was talking to him when I first got diagnosed. He was already a couple of years past it and he was like, “You know, it’s weird. You eventually just stop thinking about it.” I was like, “No, there’s literally no way. I’m never going to not be thinking about this treatment.”

I was surprised that he hadn’t really done much research. He just let the doctors do what they wanted. For me, there is a point where I need to stop trying to fix the problem and let things ride because there is only so much you can do.

At first, it was, “Oh yeah, I’ll be fine, it’s Hodgkin’s.” All of a sudden, you’re in this very, very serious situation. My brain, of course, was like, “Well, what’s going to happen to me?” [That] was not good for my anxiety.

Advocating for yourself

I think that it’s hard to understand where the line is between complete holistic lunacy and advocating for yourself and knowing your body. In one vein, people are scared to introduce holistic medicine into their lives because they’re scared that that’s going to be the same thing as completely rejecting treatment, which I don’t agree with. But also I think that people get a little scared of advocating for themselves and looking at their treatment options.

Also, it’s one of those things where if you don’t have an interest in stuff like this in general, it’s hard. I have a big interest in academic studies. I read these kinds of things when I am curious about something. If this isn’t something you are already looking for, it might not even be something you think about. Maybe I can see what new research is out there that my doctor maybe hasn’t seen. When I brought this up, he said, “We literally just talked about this in a conference I just went to. This is a new study.” That was cool.

Don’t feel like you’re stuck with this situation of someone not listening to you advocate for yourself.

If you really feel strongly about something, at least bring it up to your doctor. Don’t be scared to ask them questions. If you have a doctor who is making you feel stupid or ridiculous for asking these questions and you have the ability to find a new doctor, find a new doctor because you do not have to deal with that.

I have actually told more than one person who has a doctor who won’t listen to anything that they’re saying or talks to them like they’re stupid or a child, “See if your practice has another doctor.” One girl I know did switch doctors and had a way better experience with her new one. Mine listened to me and was really great but don’t feel like you’re stuck with this situation of someone not listening to you advocate for yourself.

I do think that I’m coming at this from a place of privilege, of someone who knew what to look for in studies and had access. I was still in grad school. I had access to academic journals. It’s hard for me to say everyone needs to go do that but definitely ask for help because there are people who know a lot about this that can help advocate for you as well. I had just graduated in August. My access was still working for the rest of the year so I was able to do that.

With self-advocacy, it’s so difficult to talk about because I came from a place of such privilege. I grew up with a mom and a grandmother who knew how to navigate the system and it was still really difficult. You can talk to the social worker at the hospital and just say, “I don’t know this but this is what I’m trying to do.” People can help.

Taking a more active role in your care

I had grown up watching my mom and grandmother fight with insurance, fight with doctors, fight with billing, [and] fight with patients sometimes depending on the situation. I grew up watching my grandmother go through [a] very long and intense treatment regimen where her cancer had come back a couple of times. She really had to advocate for herself. There wasn’t any foundation or anyone. She started all of that in her town. She really had to advocate for herself. She was just so determined to survive even though her prognosis was really, really bad. I’m not saying that that’s the reason she survived because I don’t want to put that on anything. She dug it up. She made the phone calls she needed to make. She figured out who she needed to talk to. And watching her go through that…

I am the kind of person that I think my normal personality would be to listen to the doctor and be like, “Okay, yeah, you know best.” But because I’ve watched my mom and my grandmother go through that…

Ask for early results. I’ve gotten so lucky. If you’re a young cancer patient and you’re in a place where there aren’t a lot of young cancer patients, you get some special treatment. I’m not going to lie. They will rush things for you. Ask for your results the second they come in. Tell them you’re really worried. Make it very clear to them.

Build a relationship with your nurse, especially. That’s all stuff that has helped me get where I need to be. I’ve never been nasty and I’ve never had to because people do really want to help. They’re just overwhelmed as well.

No evidence of disease

Dealing with scanxiety

I get nervous about scans. Now, I’m almost five years out and I’m not worried about it anymore. But for probably three years, about a week before each scan, I just wanted to vomit. I already have very bad anxiety. I was always a hypochondriac. It was one of those things where I was proven right, my hypochondria was.

I just was really scared every single time. I would just go into this darkness for two weeks.

I definitely got much more in touch with spiritual stuff and self-awareness during cancer. I think that was a big part of it because you’re just so in your head all the time and you have to be. One thing that did make me feel better was not doing the insane research I’m always doing because that’s an anxious tic I have. It’s not a good thing all the time.

My husband would be like, “No, put the phone down.” My dad is the same way. I’d call him and be like, “Dad, I know what you’re doing. You need to put the phone down. You’re looking at articles right now.” He would say, “Okay, you have to put the phone down too.”

We would both be doomscrolling about what if it comes back. What if it doesn’t clear out the first time? What are my options then? What are other people’s stories?

I was way more worried about letting the cancer progress. If I had seen that there was a really high chance that I would lose fertility, I would have probably frozen my eggs but I chose not to do that.

Fertility treatment

My doctor encouraged me to look into freezing my eggs. I did the research and looked into it. At that point, I was so ready to get treatment going because it would delay my treatment another few weeks.

The research showed me that ABVD is not super toxic. I found that most people were generally fine after the course of treatment that I would have. If I were to go on to a stem cell transplant, I think I would have definitely considered those options.

I decided it honestly just wasn’t worth it for me because I wanted to get going on treatment. I was way more worried about letting the cancer progress. If I had seen that there was a really high chance that I would lose fertility, I would have probably frozen my eggs but I chose not to do that.

It’s really hard because I was surprised that the doctors were all like, “You really need to look into this.” Because to me, I was just like, “Just get on with the treatment. I don’t want to die.”

I was 26 and I wasn’t quite at the point where I was thinking about the immediate reality of having kids. I’m about to be 31 now and if I were diagnosed, I think that it would be something I would consider way more intensely. But at the time, I couldn’t even see past tomorrow, let alone a future with kids.

I remember coming out of one of my surgeries for the biopsy. One of the nurses was telling me about her friend who’d had Hodgkin’s and has all these kids now and how it’s great. I’m like, “I don’t care. Good, good for her.” At that point, I was just so concerned about I have cancer.

I’d seen that my chances of remaining fertile were pretty high. If it had been different, I would have probably felt differently about it.

Self-discovery during cancer

Getting into fashion and style

I got way more into fashion and style and expressing myself through that when I was sick. I always enjoyed dressing [in] different ways but not every day. If I were going to a grocery store, I’d always be in shorts and a T-shirt. I wasn’t thinking about it and I still do that.

During cancer, it became one of those things where okay, I’ve lost my hair and losing my eyebrows. I’m gaining weight. I’m kind of puffy. I’m not healthy looking. I want to be able to present myself still.

I started doing my makeup every day and buying a lot more clothes. At first, it was a little bit [of] I want to feel healthier. Then it just became fun.

I took a photo every time I was at the doctor’s office. I would take my little fashion selfie because I had all these really fun outfits. I bought a lot of new, looser, comfortable clothes for chemo. I had this flowy, bohemian thing going.

Everyone would always comment on my style when I walked in and that made me feel really young. That was fun.

It helped me see past the blandness of my everyday surroundings like hospitals and my room in a time [when] I was feeling very numb because of medication. You’re dealing with a lot of anxiety and stress. I was feeling very numb in terms of who I was.

I felt like I didn’t belong to myself. I felt like I belonged to the doctors and to the people who are worried about me. My body was not mine at all. The self-expression came from trying crazy makeup colors and different clothes that allowed me to reclaim my body a little bit.

Re-establishing your identity

That’s exactly how you feel. You’re no longer you. You’re a cancer patient. I’d gone from being this young graduate student who worked in nightclubs on the weekends, worked at a rock poster museum, went out a ton, and did all this cool stuff to someone who was inside all the time and living at the hospital.

It wasn’t even so much of this is Kelsey. It was more of this is mine. This is something I can control. Not necessarily projecting this thing about myself to other people but more of projecting that I am here to other people. I’m making myself really visible [at] a time [when] my natural instinct is to really try to make myself invisible because I don’t like the way I look and I don’t feel good.

There was so much attention on me all the time at this point. I was someone that never had a ton of attention on me. I wasn’t someone that was big and loud and stuck out. I always went with the flow and blended in. All of a sudden, I’m walking down the street, bald… You’re going to notice the bald girl walking down the street.

It was one of those things where I was like I’m going to try all the crazy stuff I’ve always wanted to try but been too scared to. I already look like this and I’m going to reclaim the space for myself. It’s something that has stuck with me.

Honestly, I am not glad that I had cancer but I’m glad I had this experience and this awakening because I don’t think my life would be as colorful as it is now.

Getting into comedy

I had always been really into standup comedy. I’d done improv a little bit before grad school with this theater in town. I was just too scared to try standup, as many people are. I already had really bad stage fright.

I’d been writing but one day, I just sat down and was just feeling a lot of emotions but didn’t know how to get them out. I sat in my room, took a little yellow pad, and just wrote 20 pages. I wrote from start to finish everything I had experienced with cancer. I forced myself to go really deep into the parts that were really painful to think about.

Out of that came a lot of really funny stuff that made me laugh, came out of these very serious pages. I was able to put together a little standup set. I was on so many meds and on my anti-anxiety meds for my nausea. I was like, “Screw it. I’m going up.” I just started doing standup and I got really, really into it pretty quickly.

I was getting booked on shows and doing shows a little bit outside of town, going to San Antonio. I connected with a comedian who is a cancer patient as well in San Antonio, who runs a lot of shows, [and] who connected me to some really cool stuff. It was just tons of fun and I did that up until right before the pandemic.

I haven’t gone back because part of me associates it with that time. A lot of my jokes were about cancer. I am trying to re-negotiate my identity and my relationship with that. But that did launch me into screenwriting and humor writing, which I do with fervor now. I do it all the time and I really, really love it so that was very important.

I always joke it was the steroid-induced mania because I would get out of chemo, be on all these steroids, be on all these meds, and I’d be like, “I got to do something!” You got to do something. You feel really, really weird.

You get up there and you don’t care if people are throwing rocks at you because you will get crickets like 50% of the time when you start. It was just something. I don’t want to say it was all the meds or anything like that. It was a combination of just being in a place in my life where I was like whatever. What else am I going to do? I don’t even care anymore. I’m just going to do it.

It’s taken me a long time to deal with the fear and the emotions I was feeling then because you really do push a lot aside and just go into survivor mode.

Survivorship

What does it mean to you?

I’m still trying to discover what it means because I think I’m at the point now where I don’t think about it every day. Then when I remember it, that scares me a little because I’m like, “Whoa, that was me.” That was such a big part of who I am now.

It is single-handedly the most important thing that’s ever happened in my entire life. Good and bad but mostly good, honestly, in terms of what I’m doing with my life now. But also, it’s taken me a long time to deal with the fear and the emotions I was feeling then because you really do push a lot aside and just go into survivor mode. I’m still dealing with a lot of that.

The biggest, most important realization I’ve had in terms of survivorship is realizing that if my cancer comes back, I don’t know what’s going to happen. I am not automatically the same person I was when I got it the first time. It doesn’t erase any of the progress or changes I’ve made in my life. It doesn’t erase who I am. I’m a different person now and it’ll be a different experience.

Even if something happened or I had a bad prognosis, living with cancer, in terms of the everyday, is not something that you can be constantly mourning. Because right now, this very moment, I could have some horrible disease that’s going to kill me tomorrow but I don’t know that. I’m still just living life like this every day. The only difference is whether or not you’re panicking about it or not.

Kelsey R. taking a fashion selfie at the doctor's office

That’s easy for me to say now, but it’s just something I think about a lot because I do fear it coming back and in my mind, that would erase all the beautiful things that are in my life now. But I know that that’s not true and that there are a lot of people that live with chronic cancer that live beautiful lives. Cancer patients aren’t just zombies walking down the hospital hall. That’s not what we are.

Thank you for sharing your story, Kelsey!

Inspired by Kelsey's story?

Share your story, too!

Hodgkin’s Lymphoma Stories

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

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1st Symptoms: Lump in neck & fatigue
Treatment: 4 cycles of ABVE-PC chemo

Medical Experts Oncologist

Dr. Ruben Mesa & Dr. Estelamari Rodriguez

Post author By Katrina Villareal
Post date August 5, 2022
No Comments on 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, 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.

High school graduation with her grandfather

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, 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.

Dr. Mesa’s Interviews

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What are the promising treatments in clinical research for polycythemia vera in 2022? Dr. Ruben Mesa discusses.

Myelofibrosis Treatments (2022)

There are so many new developments happening in myelofibrosis treatments. Dr. Ruben Mesa spotlights some of the top ones in 2022.

Essential Thrombocythemia Treatments (2022)

Dr. Mesa shares the latest on essential thrombocythemia treatment updates to watch out for in 2022.

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Tags Clinical Trials Expert

Cancers Continuing the Dream Diversity, Equity, & Inclusion Prostate Cancer Prostatectomy

Mical’s Stage 2 Prostate Cancer Story

Post author By Katrina Villareal
Post date July 30, 2022
No Comments on Mical’s Stage 2 Prostate Cancer Story

Mical’s Stage 2 Prostate Cancer Story

Mical was initially diagnosed with stage 1 prostate cancer at 37. They learned after prostatectomy it was an aggressive stage 2.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

Thank you for sharing your story, Mical!

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Prostate Cancer Stories

Eve G., Prostate Cancer, Gleason 9

Symptom: None; elevated PSA levels detected during annual physicals
Treatments: Surgeries (robot-assisted laparoscopic prostatectomy & bilateral orchiectomy), radiation, hormone therapy

Lonnie V., Prostate Cancer, Stage 4

Symptoms: Urination issues, general body pain, severe lower body pain
Treatments: Hormone therapy (Lupron), targeted therapy (through clinical trial: Lynparza, Zytiga, prednisone), radiation

Paul G., Prostate Cancer, Gleason 7

Symptom: None; elevated PSA levels
Treatments: Prostatectomy (surgery), radiation, hormone therapy

Tim J., Prostate Cancer, Stage 1

Symptom: None; elevated PSA levels
Treatments: Prostatectomy (surgery)

Mark K., Prostate Cancer, Stage 4

Symptom: Inability to walk

Treatments: Chemotherapy, monthly injection for lungs

Mical R., Prostate Cancer, Stage 2

Symptom: None; elevated PSA level detected at routine physical
Treatment: Radical prostatectomy (surgery)

Jeffrey P., Prostate Cancer, Gleason 7

Symptom:None; routine PSA test, then IsoPSA test
Treatment:Laparoscopic prostatectomy

Theo W., Prostate Cancer, Gleason 7

Symptom: None; elevated PSA level of 72
Treatments: Surgery, radiation

Dennis G., Prostate Cancer, Gleason 9 (Contained)

Symptoms: Urinating more frequently middle of night, slower urine flow
Treatments: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)

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

Symptom: Urination changes
Treatments: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)

Al Roker, Prostate Cancer, Gleason 7+, Aggressive

Symptom: None; elevated PSA level caught at routine physical
Treatment: Radical prostatectomy (surgery)

Steve R., Prostate Cancer, Stage 4, Gleason 6

Symptom: Rising PSA level
Treatments: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177

Clarence S., Prostate Cancer, Low Gleason Score

Symptom: None; fluctuating PSA levels
Treatment:Radical prostatectomy (surgery)

Tags Cancer Disparities, Continuing the Dream, healthcare disparities

ABVD Adcetris (brentuximab) Chemotherapy Classical Hodgkin Lymphoma ICE Immunotherapy Patient Stories Stem cell transplant

Emmanuel’s Relapsed Hodgkin’s Lymphoma Story

Post author By Katrina Villareal
Post date July 26, 2022
No Comments on Emmanuel’s Relapsed Hodgkin’s Lymphoma Story

Emmanuel’s Relapsed Hodgkin’s Lymphoma Story

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
- Targeted therapy: 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

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

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

Pre-diagnosis

Initial symptoms

The first time I was diagnosed, I was 24.

I was in the mall and I put my hand [on the base of my neck]. “What are these three little balls? What are they doing here?” The first thing 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.” A few doctors later, [he] 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Thank you for sharing your story, Emmanuel!

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Hodgkin’s Lymphoma Stories

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

Lani S., Hodgkin's, Stage 2

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

Logan A., Hodgkin's, Stage 2A

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

BEAM CAR T-Cell Therapy CAR T-Cell Therapy Chemotherapy Diffuse Large B-Cell (DLBCL) Ibrutinib (Imbruvica) Immunotherapy Non-Hodgkin Lymphoma Patient Stories R-CHOP R-ICE Radiation Therapy Stem cell transplant

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

Post author By Katrina Villareal
Post date July 18, 2022
No Comments on Robyn’s Stage 2E Relapsed Diffuse Large B-Cell Lymphoma Story

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

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.

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.

Table of Contents

Pre-Diagnosis
Initial diagnosis
Breaking the news to the family
- Telling your kids
Treatment
Follow-up protocol
First relapse
- Getting a second opinion
Treatment
Second relapse
- Differing treatment recommendations
Treatment
Remission
Post-CAR T-cell therapy
Words of advice
Role as a physician-patient

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

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

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.

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.

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.

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.

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.

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.

Robyn S. 2015 4 months before 1st relapse

Sure enough, I relapsed.

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.

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.

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.

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.

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.

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.

Robyn S. July 2016 on Ibrutinib waiting for cells

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.

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.

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.

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.

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.

Thank you for sharing your story, Robyn!

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