Lessons Learned & Top 10 Tips for Other Cancer Patients
It’s been 5 years since Stephanie Chuang, founder of The Patient Story, was told she was NED (no evidence of disease). As part of Blood Cancer Awareness Month, she celebrates by putting together a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
She hopes her documented ups and downs will resonate with some of you out there and be helpful to you.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Looking back
December 10, 2016. Fun times on a date with my family in San Francisco. These would be the last non-cancer memories captured on my phone. Just three days later, I would hear, “I’m sorry you have lymphoma,” and be thrust into an out-of-body experience — stuck in the hospital while doctors ran tests and scans for an entire week to figure out what was wrong with me.
Alien-like images from dozens of tests and scans. This was the hardest period — not knowing what the diagnosis was and just trying to figure it out. There were tests upon tests in under a week. I was poked and prodded constantly, including an excisional biopsy (where I was fully under so they could remove and test the lymph node) to the bone marrow biopsy (that only required local anesthesia before the “drilling” began).
Now, no evidence of disease for five years and, for that, I am really grateful. This is a walk-through of all the high and low lights that I’ve gone through with the main goal of sharing the top tips I’ve learned throughout this process and throughout the years. I hope it will resonate with you and help you in a meaningful way.
A lot of this, I filed away and forgot that it happened. And that’s married with a lot of things that have happened in the recent years of survivorship. Feelings of anxiety, stress, and a lot of emotion. Anxiety from scares of recurrences and a lot of tears. Working in a space where it can get pretty somber and where we’ve lost some pretty incredible people.
However, the main message I hope you take away is, you are not alone. After speaking with hundreds of other people impacted by a cancer diagnosis and having in-depth conversations, we really do share a lot of the same thoughts, feelings, and emotions. You are not alone. We are definitely not alone.
Tip #1: Emergency Department may lead you to faster care
If you already have some test results — at least a partial diagnosis or a start of one — it may be faster to get care if you go to the hospital emergency department rather than try and schedule an oncology appointment. That’s what I did and it worked for me. It was advice from our friend David, a doctor at UC San Francisco, where I went for my cancer care.
Five years later, I can admit: my husband convinced me at one point to sneak out to go all the way across the street — but it was just the other side of UCSF.
What I found is that actions first can lead to emotions later and joy can follow.
Tip #2: Break the monotony
Find moments to break up the monotony of treatment, the tests, and everything that feels so sterile. [I’m] not encouraging you to break rules per se but to live a little.
What I found is actions first can lead to emotions later and joy can follow. It’s not easy, but it can happen.
Tip #3: Seek out the humor
Seek out the humor in situations, if you can. Of course, there are some [days] where it will seem next to impossible. But if you can, it really can help.
For instance, the nurses and physician’s assistants who were taking my temperature [during my] first week of hospitalization, it was happening all the time and they were announcing the number so often, I joked that it sounded like a radio jingle.
For me, my family really was everything.
Tip #4: Draw your boundaries
Draw your boundaries and pick your people. You don’t owe anyone a call. Let people know about your diagnosis if you want them in your corner and you know they’re going to give you the kind of support you want and need.
Though I have to say, my people started a support campaign and it was incredible. Love poured in from my closest inner circles to people I may have only met a couple of times. It was truly uplifting.
But for me, my family really was everything — from home-cooked food at every meal to helping me with blood thinner injections twice a day, every day. And those really added up.
Tip #5: You are a big part of decision-making during treatment
Don’t forget, you are a big part of treatment decision-making and with that also comes the quality of life decisions.
I was two months from getting married when I was diagnosed. The cancer was very aggressive — diffuse large B-cell lymphoma with double expressor, they said. My hematologist oncologist and my family all wanted me to go into treatment right away. I didn’t want to. I had read about how one of my chemo drugs, Cyclophosphamide or Cytoxan, was a high-dose alkylating agent, which meant it could cause or contribute to infertility. That scared me.
I went ahead and froze embryos with my then-fiancé. Again, people may not understand, but it was so important to me and I knew that.
First up: ovarian stimulation with lots of shots. I got a lot of help with some of those shots. Then came the egg retrieval surgery and then embryo freezing. They did try to preserve my fertility during chemo by giving me a shot of Lupron beforehand. (Spoiler alert: My husband and I were blessed with two children in the last few years without dipping into our reserve. And for that, I am so, so grateful.)
Next up was the first cycle of chemoimmunotherapy. Always really unsettling to see the nurses put on hazmat suits just to touch the bags — and that’s bags of stuff that would be going inside of me.
By the end of treatment, more than 600 hours of infusion. The drugs killed both the bad and the good cells, and that’s where side effects came in.
You are a big part of treatment decision-making and with that also come quality of life decisions.
Tip #6: Don’t chase the side effects, especially nausea
By the time you feel it, it’s too late. And trying to get rid of nausea with the pills after can be really, really hard.
One of the worst side effects and most well-known is hair loss. Many other patients I spoke with who also lost their hair due to chemo shared the same experience as me. It started to fall after the second cycle and this does depend on the treatment you get.
The worst feeling was seeing clumps of hair on my pillow. That’s when I decided to do the first step of getting a haircut. The shaved side that looked like Cassie, the singer. It’s a style I wouldn’t have ever gotten on my own.
I never wore the real human hair wig I got that cost a ton. It was too itchy for me. I liked the hair that was attached to the baseball cap because the top was so much more comfortable; that material actually felt okay.
The worst feeling was seeing clumps of hair on my pillow.
Tip #7: There will be ups & downs and that is okay
This experience is not going to be a straight line and that is okay. Anxiety is natural to have. I’ve struggled to push it away, but I’ve had some scares of the cancer coming back.
I pushed for extra scans a few years after treatment. My doctor did not advise it, but she also gave me room to decide and I appreciated that.
This experience is not going to be a straight line and that is okay.
Tip #8: Wear loose clothing without metal
For those of you headed to a scan, wear loose clothing without any metal. I didn’t have to change into a gown because I wore loose clothes and sweatpants. No buckles, no metal, no zippers. If you’re a woman, you use bras usually — just don’t have any wiring. That way, you don’t have to change. Again, loose clothing in case you need IV so that they have access.
Tip #9: Earlier appointments may help you get results faster
Schedule your appointments earlier in the day. It may help reduce the wait time, depending on where you go.
What I found in the past, at least at UCSF, getting the morning appointment sometimes really does let you have these results later that day, which is amazing. As you know, “scanxiety” is a huge part of not wanting to wait. Just give me something to go on so I can have a plan if I need to have one.
Tip #10: Speak up for yourself!
We are the only ones who can and will. For me, there’s never been a day that passed without feeling around my neck and my chest for swollen lymph nodes because that’s how I got diagnosed the first time.
I don’t want to waste my doctor’s time. I’ve thought a lot about that. Oh, she’s too busy. She’s got more important cases than me. We feel that way and we think that. But there was enough for me to feel like something wasn’t right so I worked up the courage to see her in person, where she would feel around my lymph nodes and check me in person.
At the end of the day, we want doctors who will listen to our concerns. The good ones do listen. And when it comes to treatment options, for the most part, the good ones also encourage second opinions.
Life with and after cancer is not easy, it’s not pretty, and it’s definitely more brutal for some than for others. But there is a lot of hope.
Give yourself grace
I try to remind myself all the time and I find it’s pretty hard to do, but that is to give yourself grace and don’t “should” all over yourself. It’s something I really do need to internalize.
I’ve struggled a lot throughout the work I do for The Patient Story to fight survivor’s guilt. Why do I get to live when others don’t or didn’t? It’s especially hard after becoming friends with incredible patients and advocates, and unbearable when we lose them.
I’m not going to say who, but there’s someone I got to know — an incredible woman — and she’s been letting me know in her words, “It’s getting pretty bad.” She said, “I’m going down fighting.” When I read her message, it really stung because it’s happened multiple times in the last few years that I’ve been working on this and it just gets hard.
I’m still a work in progress, but I try to remind myself to celebrate each win that we get to amplify the voices of these amazing people.
Ultimately, I hope you take my five years after treatment as a win not just for me but for you, too. [I’m] not saying my experience will be yours, but I am glad you found me and our community, and just know it is a lot more hopeful than all those outdated statistics we find everywhere.
Life with and after cancer is not easy, it’s not pretty, and it’s definitely more brutal for some than for others. But there is a lot of hope in how we can live in a meaningful way despite a diagnosis.
I celebrate these five years not just as chemo and cancer free but with gratitude because I’m also celebrating the fifth anniversary of our marriage. We eloped to keep our original wedding date so cancer couldn’t control that — it was between my second and third cycles of chemo. Then we had our big celebration after I was finally done with those hundreds of hours of treatment. I’ll never forget all the love that day.
I hope you never forget that throughout whatever experience — in cancer and in life in general — to give yourself grace.
Alex Oshmyansky, MD, PhD, is the Founder and CEO of the Mark Cuban Cost Plus Drug Company. He shares the catalyst that made him pivot from being a practicing physician to starting a pharmaceutical company.
In this conversation, he talks about the exorbitant costs of medicines along with Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, and the complicated and convoluted path from pharma to patient, and what his company is doing to offer drugs at the best prices possible.
Alex Oshmyansky, MD, PhD: [I’m] a board-certified diagnostic radiologist. I have a PhD in applied mathematics. When I was a kid, I was going to be a string theorist, so a high-energy particle physicist. I was being fast-tracked into that. With all the wisdom of a teenager, I decided that wasn’t going to be impactful enough in the real world so [I] made a hard shift [in] my last year of college and decided to major in biochemistry instead.
I graduated at 18, went on to medical school and completed an MD-PhD program. [I] went on to do my internship in general surgery at Brigham and Women’s Hospital and then radiology residency and pediatric radiology fellowship at Johns Hopkins.
At Hopkins, I was working with a pulmonologist on a research project. One day, he came in infuriated because two of his patients died over the same weekend. They both needed a drug called Bosentan, which treats primary pulmonary artery hypertension — hypertension specifically of the big blood vessel that comes out of the heart and goes to the lungs — and they both needed it urgently.
At the time, the medication cost $10,000 for a month’s supply, despite the fact that it was long off-patent [and] was a generic product at that point. They were meant to apply to a patient assistance program set up as a nonprofit by the manufacturer who made the product, got caught in the red tape and both of them tragically died [on] the same weekend.
I had been angry about these topics for some time and you think that’d be enough to set me off. But what really became the straw that broke the camel’s back was Martin Shkreli.
In 2015, he was a social media villain-of-the-day type [of] guy. He was a hedge fund manager who took over a pharmaceutical company and increased the price of a drug called Daraprim — generic Pyrimethamine, primarily used by indigent patients or immunocompromised — by over 10,000%, hundreds of dollars a tablet.
I got very mad and some of my friends, who are also doctors, [also] did. We decided very naively, “Let’s set up a nonprofit pharmaceutical company that will make drugs [and] sell them at cost.” While working as a doctor, [I] went out for the better part of three or four years trying to raise funding for the nonprofit and did not succeed. Failed spectacularly — raised $0 beyond what I put in myself.
Eventually, [I] got talked into converting it to a for-profit public benefit corporation — but with a registered public mission with the state. [I] eventually sent Mark Cuban a cold email. I sent it on a whim and surprise, surprise! He reads all his emails. And the rest, as they say, is history.
Stephanie, The Patient Story: What’s really fascinating is Martin Shkreli became the symbol but what a lot of people didn’t realize was that he wasn’t the exception and he became the villain. There were so many other things happening.
Alex, Cost Plus Drugs: [He]seems to have a histrionic personality [and] likes attention. He’s really quite a small fish in a big pond of people who are much worse actors than he was. He took much of the blame because he seemed to enjoy it. But he was not the biggest actor in this space by far.
The path is incredibly complicated. It’s very convoluted and that’s by design.
Alex Oshmyansky
The path from pharma to pharmacy
Stephanie, The Patient Story: Which I think would surprise, still to this day, so many people. This is where there’s a lot of misunderstanding. I didn’t learn about the term PBM (pharmacy benefit manager) until fairly recently. There is this path that goes from the pharmaceutical companies — with the research and development of these drugs — to the pharmacies where you and I go to pick up the drugs and the prescriptions. Could you summarize what happens? What is in this path here?
Alex, Cost Plus Drugs: The path is incredibly complicated. It’s very convoluted and that’s by design. There’s a layer of financial engineering that takes place between you and actually purchasing the product.
Pharmacy benefit managers are firms [that] are outsourced to by insurance companies to decide which products are covered by insurance. They manage all the payments. Back in the 1980s, before computers were as widespread, they were initially there to literally process payments. They would get paid to do the paperwork when a prescription insurance claim was submitted.
What they (pharmacy benefit managers) realized was… the best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.
Alex Oshmyansky
What they realized over time was, since we’re paying for the drugs anyway, we can collectively bargain for the drugs. They turned into negotiators for drug prices. There’s a big to-do recently about Medicare negotiating for drug prices, which is a great thing, but we technically already have professional negotiators doing it. Those are the pharmacy benefit managers.
Eventually, what they realized was, The way we’re getting paid is we take a percentage of the savings. That’s how they structure their deals. The best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.
Imagine you wanted to buy a [car] but you hate negotiating at the car lot. It’s miserable. The guys are jerks. “Oh, I have to go to the back and talk to my manager.” Everybody hates that. Somebody comes up to you and [says], “Hey, I will do the negotiating for you and in exchange, I get 10% or 20%,” or whatever the amount of money they save you. You’re like, “You know what? That’s worth it to me. I hate negotiating.”
The negotiator comes back and says, “Hey, amazing news. I got you a great deal. I got you 90% off of your [car].” “Oh, my God, That’s amazing. How did you do that?” “I’m really, really good at negotiating.” Come to find out the sticker price on the [car] was $1,000,000 and you’re paying $100,000 for your [car] plus the fee from the negotiator, which is another $90,000, so you’re paying $200,000 all of a sudden for your [car]. That sounds like a crazy, over-the-top example, but it really happens.
That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer.
Alex Oshmyansky
The example drug that I use all the time — because it’s the most extreme edge case — is a product we offer called Imatinib, which is a chemotherapy product. It’s a tyrosine kinase inhibitor for chronic myelogenous leukemia and you need to be on it for many, many years. The list price, the so-called average wholesale price, is $10,000 for a month’s supply.
Now, if you get it through your insurance and you have a high deductible plan, it’ll be “adjudicated” at between $2,000 and $3,200 as the negotiated discount price plus the margin for the PBM. Meanwhile, if you get it from the Mark Cuban Cost Plus Drug Company, it’s $39 for a month’s supply. That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer. It’s the intermediaries and the pharmaceutical supply chain taking a percentage of the rebate. It’s just one of the many, many scams [that] has evolved over the past 30 years to take advantage of the sick and vulnerable and it’s absolutely morally repugnant.
Stephanie, The Patient Story: We know about pharma companies and the R&D that happens there. There’s a price set. Can you describe the path?
Alex, Cost Plus Drugs: Basically, the wholesalers do take a markup. On specific products, it can be a very, very high markup. Our initial product, Albendazole, an antiparasitic drug, is available from us for $30 for two pills and a complete course of treatment tends to be two pills. But, as far as we could tell, about $70 a pill from the pharmaceutical wholesalers if you purchase it directly from them.
There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles.
Alex Oshmyansky
There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles once you purchase from a wholesaler. That sounds like a lot and it is. It’s perhaps a bit too much but at least they serve a function. They send the products around the country.
The really egregious part of the payment processing comes from the pharmacy benefit managers who administer the payments to pharmacies on behalf of insurance companies. They also claw back payments from the pharmacy so the money goes both ways. They take money from the insurance companies, who in turn partially own them. They set up subsidiary companies called rebate aggregators in Switzerland that have more fees. There’s this spider web of interacting actors.
This is Adam Fein’s from Drug Channels. This is his famous slide, which is a simplified version of the way money flows in the pharmaceutical industry.
Stephanie, The Patient Story: This is simplified?
Alex, Cost Plus Drugs: Yeah, this is reductive. It’s an absolute mess, essentially.
The best way I can describe it is it’s basically a pile of spaghetti with lines going [in] every direction from all the various different actors — PSAOs (Pharmacy Services Administrative Organizations), GPOs (Group Purchasing Organizations), the insurance companies, the pharmacy benefit managers, patients — about the way money winds up flowing in the pharmaceutical industry.
The way I think about it is this is a feature, not a bug. When I was coming out of my PhD, I was recruited to be a quantitative analyst at a hedge fund. Back in 2007, I was interviewing for these jobs and they did technical interviews to see if you knew how to do [the] math. They showed me these incredibly complicated financial instruments — credit default swaps, collateralized debt obligations — and I remember saying out loud at one of the interviews, “Oh, so this is a scam.”
You start with bad debt. You add a layer of indecipherable, stochastic calculus on top of it and then magically, it’s good debt. No one can understand what’s happening so it lets you get away with the scam. Basically, the same thing is happening here. The system is so artificially complicated that it permits theft in the service of it.
Understanding drug pricing
Stephanie, The Patient Story: Okay, I know it’s very convoluted. Let’s just give an example for a $10 pill. Let’s say that’s what the pharmaceutical company has set the price on. Can you give an example of “roughly” what that could look like by the time it gets to us?
Alex, Cost Plus Drugs: On average, it’ll be about probably $20 from the wholesaler. Let’s say $10 just to keep the numbers round — it’s usually maybe $6 to $8. Let’s say at the pharmacy, it’s about $30. Then the price manipulation starts to happen and that’ll be the actual price at the end of the day.
There’ll be a number of artificial prices put on it depending on if it’s a brand name drug [or] a generic drug. Let’s say it’s a generic drug for the sake of argument. Generally, a generic drug is priced at a pharmacy benefit manager at about an 85% discount. They will say that the price of the drug is, in this case, $200 so that’ll be the price you see if you try to pay cash at a pharmacy without using a special program of some kind. It’ll be artificially inflated to $200 so they can negotiate it back down to $30 and then charge a little bit more for the service of negotiating.
Stephanie, The Patient Story: And there’s a rebate also involved?
Alex, Cost Plus Drugs: The manufacturer will have to pay a rebate to the PBM, who in turn takes a cut and forwards part of the rebate to the insurance company that’s paying the ultimate bill. But the insurance company had to pay the whole thing first. [Plus] the wholesaler, somewhere in the mix of all of this, holds the money for six months and makes money off of the interest. It’s a whole morass.
Finding the best price for your prescription
Stephanie, The Patient Story: The impact, of course, is not just these incredibly high, exorbitant costs to patients who, if they don’t have good insurance plans, are then left with the short end of the stick. They’re screwed over, honestly. Talking to Dr. Rajkumar, there’s all this confusion in terms of going to different pharmacies. Can you talk about that a little bit, too, and what Cost Plus Drugs is doing to try and help?
Alex, Cost Plus Drugs: As a general rule, the worst prices will be at your big national chain pharmacies. Usually, the best prices you get at retail tend to be from the supermarket chains because they’re hoping that the business actually drives traffic into the other parts of buying.
Obviously, I’m biased but generally, for most products, we tend to have the best price or at least close to it. We are a registered pharmaceutical wholesaler. We buy the products directly from the manufacturers at our flat 15% markup on top of it, a $3 dispense fee, and $5 shipping and handling at CostPlusDrugs.com. You can get any of about 1,000 generic products from our site as of today and we’ll be adding on brand-name products in the near future.
Always check with the manufacturer’s website. Discount card programs might be an opportunity.
Alex Oshmyansky
Stephanie, The Patient Story: What can people do? What about the people who don’t have their drugs covered yet by Cost Plus? I know you’re working on that. What can they do at home?
Alex, Cost Plus Drugs: There are a number of different resources. Always check with the manufacturer’s website. There may be a co-payment assistance card or other cash assistance program. They might not be the most convenient things in the world but, often, you can get the cash out of pocket. You have to pay down significantly that way.
Discount card programs, like GoodRx or SingleCare, might be an opportunity. They tend to be more generic-focused as opposed to brand-name products. I think those would be the two easiest things if you need a brand-name, on-patent medication.
Generally, the easiest way to know is if it has a really easy name to pronounce, it tends to be a brand-name medicine. Google the name of the medicine, check the manufacturer’s webpage, and see if there’s a program available to help you afford it.
If it’s a generic one, check CostPlusDrugs.com. But if we don’t have it, I would look for a discount card program; maybe there’s a discount available there. You can even ask your pharmacy, “Can I pay cash?” and see. Oftentimes, the discount cards are unnecessary and they’ll just sell you the drug cheaply.
The road ahead
Stephanie, The Patient Story: Thank you for the work that you’re doing. Obviously, people are seeing the benefits. How much work is there left to be done?
Alex, Cost Plus Drugs: Aside from the big three PBMs, there’s a host of small ones that are trying to do the right thing, be more transparent, [and] go back to the old model where they just take a small fee for doing the paperwork and electronic transmissions. And they see us as a real value add to differentiate themselves from the big PBMs who aren’t as open to working with us at this point.
The key is we work with them on our terms, which means no rebates [and] no spread pricing. The price you see on our webpage is the price everybody pays — [whether you’re] a single indigent patient on the street or [you have] a Blue Cross Blue Shield plan. Everybody pays the same amount.
Hoping long-term to change the status quo to something more sustainable… taking the pharmaceutical marketplace and making it like any other marketplace.
Alex Oshmyansky
Stephanie, The Patient Story: Between the brand name and the generic, has it been much harder with one than the other?
Alex, Cost Plus Drugs: The generic companies, it’s been easier to get ahold of those products just because there [are] more of them. There’s more competition and more people looking at ways to get their products across
The brand-name companies [are] not necessarily beholden to the PBMs but it’s a big risk to them to go outside of the PBM structure, which is not great. They’re not thrilled with it because, from their perspective, they do all the R&D, they take all the legal risks, [and] they take all the bad publicity from the public when people complain about high drug costs. And they’re like, Why are these companies getting a third of the revenue from our products? It’s insane.
At the same time, the status quo works for them. It’s a bit of a risk going with us. But I think in our conversations behind the scenes, they’re willing to take that risk at this point. They’re kind of sick of the status quo as well. We’ll be bringing them on in the near future.
Stephanie, The Patient Story: What is the next big vision of what this landscape will be like for people?
Alex, Cost Plus Drugs: Adding more and more products, brand-name products on a very tactical level. Beginning to work with insurance companies over the course of the next year — on our terms, of course.
Hoping long-term to change the status quo to something more sustainable based on taking the pharmaceutical marketplace and making it like any other marketplace — where you can see what the prices are and make rational, informed decisions as a patient and as a consumer based on real prices instead of make-believe numbers.
Manda’s Stage 2B Relapsed Hodgkin’s Lymphoma Story
Manda was diagnosed with stage 2B Hodgkin’s Lymphoma at 19, which relapsed after eight years.
She shares what it was like being a young adult with cancer and the importance of knowing your fertility preservation options, no matter your age.
Name: Manda M.
Diagnosis:
Hodgkin’s Lymphoma
Staging: 2B
Symptoms:
Loss of menstrual cycles
Iron deficiency
Itching
Night sweats
Tiredness
Night terrors
Trouble breathing
Difficulty concentrating
Enlarged lymph nodes
Treatment:
ABVD chemotherapy
Radiation
Relapse Symptoms:
Swelling
Night sweats
Night terrors
Trouble breathing
Bloating
Weight gain
Difficulty concentrating
Treatment:
ICE chemotherapy
Autologous bone marrow transplant
“I wish I would have asked about fertility, honestly… I could have frozen my eggs or I could have prepared for what’s next.”
Thank you to Seagen for its support of our patient story series! The Patient Story retains full editorial control of our content. The interview has been edited only for clarity.
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 am 39 years old. I currently work in strategy and business development. I have two children and a husband.
I grew up in western North Carolina. I stayed in North Carolina [and] live here still. As far as hobbies go, I like to be outdoors. I play with my kids and just generally like to hang out with my family.
My son, he’s six. He’s very empathetic. He understands emotions so he can tell when I’m not happy and he likes to give me a hug when he sees that.
My daughter, she’s just goofy. She does goofy things and she tries to make everybody laugh.
Both of my kids are very independent. They like to do things themselves and they get upset when they can’t do [them]. They’re just really good kids. I think they’re just exactly like they should be. When they get on my nerves, I’m like, You’re my miracle children. I remind myself, You willingly had these children.
“I knew something was wrong because I just didn’t feel quite right.”
Initial symptoms
It started back when I was ending high school and the summer after that. I was having a lot of interesting symptoms in terms of itching and my menstrual cycles. I told my mom and she started to look into different doctors that I could go see.
That progressed into a little bit more intense itching. Then I started to have trouble sleeping. I had already started college, into my sophomore year. That’s when the intense symptoms started to happen.
I went to the dermatologist first because it was itching and it seemed like a logical thing to do. Then I started to feel like, “Maybe I’m allergic to something,” and so my PCP sent me to an allergist. They tested me for a lot of things and decided that I was allergic to a couple of different things so [they] started giving me allergy shots. Then I just kept seeing individual specialists for individual things.
“My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.”
What was going through your head?
I knew something was wrong because I just didn’t feel quite right, but I had started college and so things had changed from a lifestyle perspective. Maybe I wasn’t eating as well, I wasn’t exercising as much, and maybe I was stressed out. I just thought, Maybe it’s just the new normal.
But then I would go to the doctor and just be like, “It’s still not fixed.” My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.
Finding swollen lymph nodes
I came home from school one break during my freshman year and my dad was like, “Why is your neck so big?”
I don’t think anybody thought lymph nodes because he was just like, “What are you doing?” I think you just think college. She must be getting into stuff she’s not supposed to be getting into and so that’s where it left off. I didn’t think of it then. It’s all hindsight.
Biopsy scheduled
I went to the ENT in Claremont, North Carolina, where I grew up and my parents specifically said, “Can we get a surgeon in Chapel Hill?” Because that’s where I was going to school. It took a little bit to make that all happen.
Did you think that cancer was a possibility?
No, that hadn’t even crossed my mind, actually. I thought maybe I just had mono or some infection that just had gone crazy.
Lymph node biopsy
I can’t remember exactly, but I know it was outpatient. It was just at the surgeon’s office. I didn’t go to the hospital or anything. I don’t think there was a complete incision. I think he just inserted something in there.
‘He’s in with a patient, but I can get ahold of them for you. You just stay on the line.’ That would have been a red flag because usually, they don’t drop everything.
Diagnosis
How did you learn that there was something serious going on?
A week had gone by and I haven’t heard from the doctor. My parents were constantly asking me. Finally, my dad was like, “We’re coming up and we’re going to figure out what the answer is.” They came up to Chapel Hill and called the surgeon’s office.
My dad was on the phone. My mom and I were sitting with him. The receptionist was like, “He’s in with a patient, but I can get ahold of them for you. You just stay on the line.” That would have been a red flag because usually, they don’t drop everything.
The surgeon came on the line and then my dad, I just saw his face drop, and that was when they were like, “Your daughter has Hodgkin’s lymphoma.” I looked at my dad and was like, “What’s happening?” He was like, “You have cancer.”
My dad, I just saw his face drop… I looked at my dad and I was like, ‘What’s happening?’ He was like, ‘You have cancer.’
What was it like hearing from your dad that you have cancer?
It was just weird because I didn’t actually get it from the surgeon. It was relayed from my dad, which, now that I think about it, probably was good because both my parents were there at the same time.
He’s stoic. It’s almost as if it was a relief because finally, I know what’s going on. But also scared, obviously, because I didn’t quite understand what it meant. A little uncertain and nervous about it.
Choosing where to go was pretty easy because I was on campus already at UNC and they have a UNC Cancer Hospital there. That process went pretty quickly. I got in to see them within a week or two.
At that point, it was just talking about what the next few months were going to entail. I decided to stay there because they’re on campus so I could walk to treatment. It made it easier because I had everything I needed to reduce my course load.
I had ABVD every other Friday. My parents would come up and I would meet them at my class. They would pick me up, take me to outpatient chemotherapy, and then take me home for the weekend.
Side effects from ABVD chemotherapy
My major [side effect] was nausea and vomiting. I would actually start vomiting before I even got treatment because I was just so nervous. I think they called it anticipatory nausea. I would sit in my biology class and start getting sick without any treatment.
I did have some hair loss. I got my hair cut really, really short so it looked like I just had a really short haircut. It was falling out. But, at any given point, I don’t think I went entirely bald. Ultimately, nausea, vomiting, and the general overall ickiness that I felt [were] my main [side effects].
I just had a really, really sore throat. I actually ended radiation about a week before the last day of classes. I thought it would be cool to take a shot of something to commemorate the end. That was the worst thing I could have ever done because it just burned my throat down.
I went to my radiation oncologist. “I am sorry. I can’t do that,” and he was just laughing. He was like, “I’ve seen it before. There [are] a lot of college students that have come through here who’ve had cancer and radiation. I understand. Here’s the stuff.” He gave me this liquid and then he was like, “Take it like a shot.” I was like, “Okay, fine, whatever. I deserve it. I’m never doing that again.”
A month later, I had no problems. I would say after that, my radiation oncologist was really adamant about testing me for hypothyroidism. He was constantly checking my thyroid. That ended up being a long-term side effect of the radiation treatment.
Getting diagnosed with hypothyroidism after radiation
It wasn’t too bad. It was just understanding that for the rest of my life, I have to be tested for this and make sure my blood work is okay. But other than that, it was just trying to find the right dosage and sticking with a plan [to] make sure that you’re getting the right dosage over time. They walked me through that and then my primary care physician was brought on board. He understood what was going on.
Now it’s just routine where every couple times a year, I go and make sure my thyroid levels are correct. Then they [adjust] the medication [as necessary] to keep it stable.
It helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.
Being a young adult with cancer
What was that like being 19 & having to reconfigure your college life to this?
Looking back, it was probably the best thing I could have done because it gave me normalcy. I think if I moved back home and just stopped everything, I would have been unhappy. Having my friends around and a normal college life was actually helpful. Now, my GPA probably wouldn’t say the same thing, but as a person, it helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.
I actually met someone who had Hodgkin’s, an undergrad who was in law school at the time. The doctors put me in contact with him. He was like, “It seems daunting, but I think with the reduced course, you might be okay,” because he had done the same thing.
I was able to take my course slowed down to less than half and still be considered a full-time student. I took his advice. He was really helpful during that whole time.
I don’t know if I took it in stride. I felt like I didn’t really have a choice so I had to do it. It was probably the best-case scenario for me that I was at a campus that had a really great cancer hospital. It almost felt like it fell into place a little bit so it helped drive my decision-making.
How did you cope with seeing your peers live normal lives?
I found my people. I had some really great friends who were willing to change their lifestyles for me. They knew that I couldn’t go out and have fun on most nights after treatments or when I got back.
My parents would drop me off after treatment. I would go home with them on Friday and then they would drop me back off Monday morning. Monday evening, my friends would come over with takeout and they would just watch a movie with me. It was just really having a support system that helped and allowing my friends to just be.
Sometimes they would come and sit with me during treatments. My parents were there but just knowing that they’re there was nice.
I found my people. I had some really great friends who were willing to change their lifestyles for me.
[Don’t] try to push people away. I felt like I can’t really make friends now because I’ve got all this stuff going on but [don’t] let your mind go there. Your friends want to help you and they want to be with you. It may not be ideal, but they’re willing to put the effort into helping you, too.
It was cool because UNC is a really big sports school. But if [my] platelets were low or [my] white blood cells were low, I can’t go. They were like, “Let’s just do something else.” They were really good about including me in things that they knew that I could go to and I wasn’t going to get sick.
Your friends want to help you and they want to be with you. It may not be ideal, but they’re willing to put the effort into helping you, too.
How did you open up about your diagnosis?
After the first diagnosis, I was pretty open to people about it because it was a huge part of me. I felt anybody that I was romantically involved with should know and just could tell if it was going to be a problem or not
A lot of my friends already knew because I was still talking with the same friends. The new friends that I had made maybe weren’t really privy to it, but I felt like they were really just supportive, good people so I didn’t worry too much.
I honestly don’t know how you would bring it up to people who don’t know. There’s a certain part of your life where you just think you’re never going to get it again so why bother telling people about it.
It’s just a select few where you’re like, Maybe this person should know. I just felt that way, at least with my boyfriend, because we had been dating for a long time and there was something there. I should probably make sure that he knew a lot about my health history.
Was there any talk of fertility preservation or family planning options?
No, not at that time. Doctors never really mentioned it and I never really said anything because I just wasn’t thinking about it. I wasn’t really prepared to ask questions.
Is there anything that you would have done differently?
I wish I would have asked about fertility, honestly. I had just read everything about Hodgkin’s lymphoma, how usually it’s cured, and you never really have to deal with it again.
There was a span of eight years between my first diagnosis and then it coming back. I could have done something. I could have frozen my eggs or I could have prepared for what’s next. Even if I wouldn’t have needed it, it would have been nice to have had that opportunity to know that there is a chance that this could happen.
It’s not really part of the treatment plan going forward and so I just never really thought about it. I wish I would have.
Now, when I talk to other 19, 20-year-olds that are going through this, I’m always like, “You think you don’t need it and you may never need it, but just be sure that you ask about infertility and if there [are] options for freezing your eggs.”
I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.
Importance of knowing your fertility preservation options
At that time, I feel like [the] doctors did what they were supposed to do. They cured my cancer, but they didn’t really tell me what’s life after that. What are the things you might have to deal with later? And it’s not just infertility.
I had hypothyroidism, which they told me a little bit about. But then you have the potential for heart problems, lung problems… There was a blood clot I had that ended up showing its head 20 years later, in terms of things that I had to go through during my pregnancies.
The cancer’s gone but then [there’s] all this other damage in the process that I wasn’t really privy to. You go through your health history and doctors are like, “Oh, okay. Well, that could be a problem,” then you have to deal with it over and over again.
I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.
I didn’t even bother going to my primary care physician. I just knew.
Relapse
What made you think something was wrong again?
I just didn’t feel right. I didn’t even bother going to my primary care physician. I just knew.
I tried to shove a lot of things into a couple of months that I know I really wanted to do. Then I was like, “Okay, now I’m ready to go tell somebody that this is back.” And that’s how that started in 2010.
‘I think I’m going to go to the doctor because I think something’s up.’
Why did you decide to do a last hurrah before seeing your doctor?
I met my boyfriend, who’s now my husband, back in 2006. I had given him an overview of what I had gone through in 2002 and 2003 so he understood what was going on because he knew that I was getting scans and stuff still for that.
Then in 2009, I started grad school. In the back of my head, thinking, I really want to get through grad school. I want to marry this guy and start my life. When 2010 rolled around and I started feeling a little off, I was like, Uh-oh. Maybe this isn’t the plan anymore.
I scheduled a vacation for the summer between my 2009-2010 grad school year. There were a couple of steakhouses I wanted to eat at because once you’re on chemo, you don’t like to eat so I went and ate at some of my favorite places.
Then finally, I was telling my parents and my boyfriend, “I think I’m going to go to the doctor because I think something’s up.” They knew that if I were saying something, I probably felt it.
I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.
Why did you decide to wait?
How much worse can it get in two months? I went a whole year without treating it last time so if I spend the next two months just trying to get things settled, then I felt like I could do it.
I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.
Was there a worry?
There was [a] worry I wouldn’t be able to enjoy, that my boyfriend would probably not want to stick around — which wasn’t the case, by the way, but it was in the back of my head. This is just going to wreck my life and so let’s just savor it for the last few months and then deal with it as it comes.
Official relapse diagnosis
I was like, “What stage is it?” They were like, “We don’t stage. We just say it’s recurrence.”
Treatment
ICE chemotherapy & autologous bone marrow transplant
They were pretty much adamant about [getting a bone marrow transplant] from the beginning. That was going to be the endgame
[With] ICE chemotherapy, I did a lot of my own research and I realized that it was pretty serious. They told me, “It’s intense. You would have to be in the hospital over three days in order to get the treatment.”
I don’t remember how many weeks I had in between, but it took a good chunk of that time to get healthy enough to even think about having the next one. There were a couple of times where we had to postpone, which didn’t happen with ABVD.
They had to postpone because my platelets had tanked or I [needed] blood transfusions and wasn’t healthy enough to get the next treatment. I had never had a blood transfusion before then. I can’t even keep track of how many blood transfusions I had over the span of those ICE treatments.
Then being really, really careful about not getting sick. During the pandemic, I was joking around with a friend, “This was my life in 2010 — always wearing a mask and never going anywhere,” because you just didn’t want to get sick. You wanted your next treatment because you didn’t want to postpone it again and again.
No evidence of disease
How is it thinking about that?
It seems like time has flown by. It doesn’t feel like it was 12 years ago because some things are still very vivid in my memory and other things are really fuzzy.
Thinking back on it, I’ve forgotten a lot of things as well. I don’t know if that was on purpose or my mind was just like, Maybe we should just shove this way far back because you don’t want to remember it.
Fertility preservation & family planning
What was the big difference between being diagnosed at 19 & again at 27?
At 19, it just wasn’t there at all. You spend a lot of your teenage years thinking, I can’t get pregnant. Don’t get pregnant. Then in [my] 20s, especially since I was in a committed relationship, I thought, Oh, I can see myself being a mom. It was pretty much at the forefront for me and the doctors as well.
The second time around, they actually mentioned about fertility and the impacts that my treatment would have on it. It went from being nothing to something that was talked about quite a bit when I was older.
Did you bring up fertility or did somebody else?
The doctors actually brought it up, but they brought it up in a really weird way. I couldn’t quite comprehend it at the time. I had to start treatment pretty quickly the second time around so there wasn’t really time to even think about freezing eggs or anything like that.
I was just laying in the hospital bed and a fertility specialist came in. I just received some of my ICE treatment and they were like, “Freezing your eggs is just not an option for you. This treatment, along with the bone marrow transplant, is underway and there’s just not going to be an option for you to have children.” It’s what I took from it. My mom, who was sitting there at the time, was just like, “Wait. She’s not really comprehending this,” because I was on medications.
They definitely had to explain it to me a couple of times. My BMT doctor also reiterated, “Let’s just get you better and we can talk about this later. But as of right now, there’s not going to be too many options for you.” I just took it as I guess I’m not going to have kids.
At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later.
How did you process the news?
It was just like mark this down. It’s another thing that’s just not happening. Okay, I guess grad school is on hold. Not happening. Maybe I’m not getting married. Why would this guy stay with me now that I can’t have kids? Let’s just keep marking things that aren’t going to happen.
At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later. You get a lot of bad news all at once and so it was a little bit disheartening. But the real thing that I really [wanted] was just to be done with the treatment. Let’s just get this over as fast as possible.
I talked to my parents quite a bit and my siblings. A couple of times, I called my dad crying, “All my hair’s falling out and all this is happening.” He would just be, “This is par for the course. Why are we crying about this?” And I was like, “Well, you know…” And he’s like, “You just have to keep pushing forward.”
I think it just all stemmed from because he had gone through a lot of stuff that I couldn’t even imagine. He was just like, “Sometimes, things just don’t go your way and you just have to go through it anyway. Just know that it can be better after it’s done. But it’s going to be worse before it gets better.”
There were just people like my dad who were like, “You can’t get down on yourself too much. Otherwise, you’re not going to get through this.” I think that was helpful to have that perspective of somebody who can just be like, “Pull up your big girl panties and just get it done.” That’s his mentality and that helped because otherwise, I would just sulk around and do nothing.
Feel bad for yourself, cry, and then get up and move on. Okay, fine. I’ll feel sorry for myself today and then I’ll move on. And so I tried. I tried waking up every day and like, “Okay, what’s the one good thing I’m going to do today that makes me feel good about myself?”
I went in for one of my scans, maybe my third-year scan. “Look. I got married and I’m thinking about having children and I just need to know my options. I don’t know what they are.” He’s like, “Oh, okay. Let me refer you to a fertility specialist that works with cancer patients.” I was like, “That would be wonderful.” Why do I have to ask for this?
He referred me to her and that got the ball rolling on understanding what my real options were. If I really wanted to have a kid, then let’s make this happen and this is how it’s going to happen.
It’s interesting because it’s still very much related to cancer. I wouldn’t be infertile if I hadn’t had cancer. It keeps coming up over and over again.
First, she wanted to see physically where I was from a fertility standpoint. She did ultrasounds, took bloodwork, and confirmed what we had suspected that physiologically, I was going to be able to have a child in the traditional way. She confirmed all of that.
Then she took me and my husband and [went] through the different possibilities. There was surrogacy, adoption, frozen embryos that can be donated, and IVF with an egg donor. She laid out all those things and was like, “I think you would be a perfect candidate for IVF with [an] egg donor.” Then we just talked through what that process would be and why she thought that that would be a good option for me.
I could carry a pregnancy and then my husband could actually be the father of the child. We could plan it so that we could use multiple embryos from the same donor and they would actually be full siblings to each other.
She said, “The good news is you have a cute uterus.” I was like, “Oh, okay. Good to know. I didn’t know they could be cute.” The silver lining is that [I] have things that are still functioning in [my] body so let’s go, let’s use them. I thought that was pretty, pretty nice.
The bad news is that I was fully in menopause. My ovaries were not working. She even showed me a picture. They’re supposed to look like chocolate chip cookies, I think, and mine didn’t.
She reiterated, “A lot more people have to use this route than we think,” and made it sound more like it’s a normal way of doing things. “It’s being done, people are using it, and it’s working so it’s going to work for you. We have a really high success rate with this.” She was just really confident and very hopeful that this was going to be the answer.
During the whole conversation with me and my husband, [there] was never a moment where she didn’t think there was an option. “We’re going to get you pregnant. You’re going to have a baby. This is the way to go.” She was just very confident.
The whole time, I was like, “Well, I don’t know if this is going to work or anything.” She was just like, “Yeah, it’s going to work. I know what I’m doing.” It was just refreshing to have someone who was just like, “This is done all the time and it’s going to happen for you, too.”
I also have a little bit of reservation. Will she be a little bit upset that I’m a cancer survivor and that maybe I shouldn’t be having kids? But none of that came up. “You’re fine. You’re five years out. Your doctor gave you the go-ahead. We’re doing this.”
Deciding to have children after cancer
Should I bring a child in this world that may have a mom that has cancer for [the] third time? A part of me was like, Maybe I shouldn’t have kids because I don’t want to put them through that process. But I thought, If I live that way, then I would never do anything.
I just thought through that a lot more because I wouldn’t want a child to have to see me suffer. But I quickly understood that I couldn’t live my life thinking that it would show up a third time.
It was just understanding that I got to point B in a really interesting way. And it was miraculous in some instances. When I think back about all that I went through and now that I look at my kids, I’m like, “They are truly unique and never would have existed had my story not existed.” When I think about that, it’s almost as if I would go back and do it all over again to get the same exact thing because it made it all worth it [in] the end.
It wasn’t the path I thought [I] would take, but I got what I had hoped for so why would I change that?
Before we could do the IVF, we had to go through counseling because it’s very important that your children understand where they come from and they were giving us pointers about how you talk to them about it. I just always tell them, “You are incredibly special because you came around in unfavorable circumstances. A lot of things had to happen for you to get here in a weird kind of way and so that kind of makes you extra special.”
It wasn’t the path I thought [I] would take, but I got what I had hoped for so why would I change that?
Process of choosing an egg donor
It was way easier than I ever thought it would be. They were really on top of it — the fertility doctor, all of her nurses. They walk you through the whole process and make it super easy.
They already had donors lined up that they thought met my expectations. I wanted someone who was Caucasian because I wanted them to look like me and my husband. I wanted someone who had a fairly good health history so they test them for a lot of different genetic diseases. As far as eye color [and] hair color, none of that really bothered me. I just wanted to make sure that they were healthy and kind of looked like me; that was my only thing. They were like, “Are you okay with having a first-time donor? We may not know if she’s going to be able to produce eggs or not.” I was like, “Yeah, that’s totally fine, too.”
I didn’t have too many requirements so they had quite a few donors that met the requirements and a little bit more. The donors can tell you about their ambition, their goals in life, what they do now, their personality, what they like to do, if they own pets, and the reason why they’re donating.
This particular donor said she was donating because she watched her aunt go through a lot of infertility issues. She felt because she was healthy and at an age that she could donate eggs that she wanted to do that in honor of seeing her family member go through this.
If this doctor is for real, this is happening… And it did. The first implantation worked.
Fertilization & preparing for embryo transfer
That process was lots of shots, lots of hormones, lots of things to make my body do things that I hadn’t done in years because I’ve gone through menopause at that point. That whole process was just injections and getting my uterus ready for implantation and then sustaining a baby after it was implanted.
There was a little bit of nervousness because if this doctor is for real, this is happening. At this point, I should probably start preparing to be a mom because this is going to happen.
And it did. The first implantation worked.
Financial impact of IVF
I know that they had financial help. You could pay over time or you could pay a set fee for three tries or something like that. I had opted out of the three-try one just because this is a lot of shots and I don’t know if I can do this for three rounds of IVF.
Because I had known that this was going to be the issue, we had prepared pretty well financially. When we met with the doctor, we knew it was either going to be adoption or something else. We knew that we would have to save up some money if we were going to do this and so we had been saving for quite some time.
The interesting thing is that [with] the first one, nothing was covered. It was a good sum of money.
Since then, I think some insurance companies do actually cover infertility because for my daughter, I was able to cover the implantation. Things have changed a little bit. I joke around with my kids that I need a return on investment because [they’re] expensive.
Importance of fertility preservation options
It’s just part of the cancer journey. It’s part of the treatment, really, and I don’t think people understand that. It just should be a part of how you treat it.
A lot of times, it ends after that last scan and you’re on your own. But it just really isn’t that way. There’s a ton of things that aren’t included in that treatment plan that should be. And I don’t really know how to fix it because I don’t know if that’s [an] oncologist issue. There’s just no guidance after or any help or understanding of what specialists [I] should have in place for the next 10 years in my life because I’ve gone to all kinds of specialists since then.
Just some understanding of what’s going to happen next and the things that you need to look out for because not every primary care physician is going to know what you need. You need to know yourself. It would be nice to have somebody guide you through how to advocate for yourself and where you need to go when you have these things happening to you.
I just tried to do a little bit every day. If I didn’t feel like doing any of it, I didn’t really get down on myself.
Words of advice
One of the things I really took to heart during that time… One of the PAs (physician assistant) who had had non-Hodgkin’s lymphoma and had worked with a lot of cancer patients came into my room. I was getting really down. He was like, “If you lose hope, then you lose everything. You just got to come in here and do your time. That’s all I’m asking you to do. Just come in here and do your time.” I was like, “It’s like prison here.” And he was like, “Yeah, like prison. Come in, do your time, but don’t lose hope.” And I was like, “Okay.”
I felt like I basically handed my body over and said, “I have no control over this thing anymore. You guys do your thing, get it better, and then hand it back to me when it’s done.” I just checked out mentally the whole time I was in my BMT. It was almost as if I was detached from what was going on because I had no control over it. It was just a really weird experience.
My advice would be that you just can’t lose hope and just do your time because there’s literally nothing else you can do. I think that was what he was getting across. Being here is all you can do right now. Just be here. That’s what I took to heart. Just sit here and do my time. There’s nothing else I can do.
I just tried to do a little bit every day. I didn’t try to make crazy goals for myself. I would say to myself, “Okay, you get up and you get a shower today and that’s a win.” And so I would just try to get up, shower, and then go back to my bed. But that was a win. I got up and showered. Just make small goals.
One day, I was like, “Okay, now you’re going to go for a walk around the neighborhood for five minutes and that’s it.” Tiny little steps day by day, trying to do something that maybe I didn’t do yesterday.
If I didn’t feel like doing any of it, I didn’t really get down on myself. I was just like, “Today’s not the day,” and tried to start over again the next day. Every day was like a new day, basically, where I had one small goal and that was it. I didn’t really get down on myself if I didn’t achieve that goal, but I tried really hard to see if I could.
‘If you lose hope, then you lose everything. You just got to come in here and do your time. That’s all I’m asking you to do. Just come in here and do your time.’
Kris was diagnosed with stage 4 Diffuse Large B-Cell Lymphoma.
He shares what it was like finding out his cancer diagnosis on his own, having to retire earlier than planned and learning his twin brother was diagnosed with cancer, too. He also shares his experience going through treatment alone, due to COVID restrictions, and what it was like dealing with isolation.
Name: Kris W.
Diagnosis:
Diffuse Large B-Cell Lymphoma (DLBCL)
Staging: 4
Symptoms:
Pain in the side of the abdomen
Treatment:
R-CHOP chemotherapy
If you even have just this remote idea that there could be something amiss inside your body, get it checked out. There’s no reason not to.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
There was pain that would keep me awake. I could sleep most nights but this one particular night, I woke up at about 3 o’clock in the morning and it just wasn’t feeling right.
Pre-diagnosis
Share more about yourself
I was a senior developmental engineer in electronics for a total of about 40 years. Since the cancer diagnosis and the treatment, I’ve had to retire. But I really wish I hadn’t had to retire.
I have an identical twin brother and I have a sister that’s 10 years older. My brother really got me through the treatment and everything. He [drove] me to the hospital whenever I needed. I had a few infections and spent a lot of time in the hospital during the treatment. I just can’t thank him enough.
Initial symptoms
I noticed that [for] a few nights in a row, I had this pain in my abdomen and in my side. When I [lay] on that side, which I preferred to sleep on, there was pain that would keep me awake. I could sleep most nights but this one particular night, I woke up at about 3:00 in the morning and it just wasn’t feeling right.
There were some things that led up to this. Two months before, I had a blood clot in my leg and they told me, “You can’t take Ibuprofen anymore because of this blood clot. It’s going to make things much worse.”
What was going on in your head as they were performing all these tests?
When they did the CT scan, I thought, Well, that’s a little bit weird. I figured they should be able to see anything in the blood work that would have come up. But they went ahead and did as they saw fit.
We really didn’t come up with a lot other than there was a mass in there. [In] the first scan, the mass was about six centimeters in diameter or two and a half inches. They didn’t know what it was. They were thinking that they had done the surgery there, too, when I had the blood clot in my leg so it could just be a mass of blood… bleed out of the joint where they put the catheter in for my blood clot. They went ahead thinking that that’s what it was, that it was just some sort of a liquid mass and it was not pushing things around too much.
[They did additional blood work.] I think that’s where they started to think that the mass was more solid than just blood floating around.
The diagnosis was diffuse large B-cell lymphoma. That was a shock because I had heard of lymphoma before and it was never good. It was never in a good light.
Diagnosis
Finding out the results of the CT-guided biopsy
There was a listing of what the biopsy found — a bunch of numbers, CD 20s, and all kinds of different things. The diagnosis was diffuse large B-cell lymphoma. I looked at that, went back up to the top, and said, “Wait a minute. Is this my file? Did I accidentally get in somebody else’s file?” That was a shock because I had heard of lymphoma before and it was never good. It was never in a good light.
[The] first thing I did was call my brother and go, “Dude, what’s this lymphoma thing?” He says, “What?” I said, “Well, it looks like I have cancer.” And he says, “Oh, come on now.” And of course, I was interpreting the chart so he was like, “Well, who are you? You’re not a doctor, you know.” And I said, “But it says pretty clearly: lymphoma.”
I had a doctor’s appointment the next day with the oncologist. I, of course, had a little trouble sleeping that night, but I didn’t really get sad about it. I was thinking, They’ll just tell me that it was a mistake and I’ll carry on. When I went to the doctor, they said, “Oh, no, that wasn’t a mistake. And we really do want to start treating you pretty soon.”
I knew what my diagnosis was before they actually told me. I spent the rest of the day looking everything up online, but none of them made any sense to me.
They started to set up all of the appointments outpatient. It was going to be three to four weeks to start chemo and another five weeks to do the PET scan. I was going, “Oh, can’t they get me in any sooner? I mean, it seems like I need it.” Then they said, “No, you really do have this,” and I thought, “Okay, well, we’ll wait.” They were going to try and bump them up sooner and let me know. But at that point, they had already said, “You’re not working for a while.”
How did you feel when they said you’re not going to work for a while?
The feeling was, “When can I go back to work?” I had intended to work another 10 years if I could. At the company I retired from, I was going into 10 years total with them. I had worked with them in the early 2000s, then I left, and came back. I told them I was planning on working at least 10 years. I want to work for 20 years if I can. My brain will hold out. But obviously, that wasn’t going to be the case.
I knew what my diagnosis was before they actually told me. I told them, “Nice system you got where you find out just ad hoc online that you’ve got cancer,” but they talked their way around it pretty well. It doesn’t happen all the time, but they’re trying to figure out a way to make it different.
It was interesting. I spent the rest of the day looking everything up online, but none of them made any sense to me so I just carried on. “I’ll find out tomorrow what’s going on.”
There really wasn’t a lot of information that I got [on] the first visit. They handed me a folder that was probably about [an inch] thick and I didn’t read any of it. The last thing I wanted to do is dig into a bunch of medical jargon that I didn’t understand anyway.
I talked to friends that had been through similar things and that was a lot of help. My brother’s in-law’s family had just a bad few years with cancer.
I had intended to work another 10 years if I could. My brain will hold out. But obviously, that wasn’t going to be the case.
The importance of having someone with you during appointments
It was incredible. [My brother] was taking me to all my doctor’s appointments so he could be there as a witness. I’ve heard so many people on The Patient Story videos say [that] after they had said “cancer,” everything else was gone.
The doctors didn’t really go into much detail. They just said, “We’re going to do chemo and it’s going to be R-CHOP.” They told me what drugs they were and all that. They said that the first one that I get is going to be a weird one because they have to decide how long the treatment has to be.
The first chemo in the hospital was 16 hours. When they figured out how fast I could take that first drug, they cut it down to seven hours. All of my chemo treatments after that were seven hours.
There really wasn’t a lot of information that I got [on] the first visit. They handed me a folder that was probably about [an inch] thick and I didn’t read any of it.
Being admitted into the hospital for treatment
They called me and said, “We’re admitting you to the hospital. We have a room for you on the oncology worked in. We’re going to do all of the initial stuff inpatient — the first chemo and the PET scan and so on — because we can get you in much sooner.” They didn’t really say why they wanted to do it so much sooner. I just assumed it was some trick that the doctors could use to get me in there quicker. I appreciated it because it was much sooner than planned.
It came as a surprise, but I was ready for it. They told me that that was going to probably happen. My brother was able to hang out with me while all of that was going on. He took me to the hospital and we got all settled in the room. I was only there a few days, I think four or five days, and he was there every day to visit me all the way until March when they closed down visiting.
My brother really got me through the treatment and everything. I just can’t thank him enough.
Side effects from chemotherapy
They never really did define the infection that became septic. They were very concerned about that. I spent a few days in the hospital with each of those. It pushed out my chemo treatments by about the amount of time that I was in the hospital, usually about a week or a week and a half.
I was really looking to get those over with and see what happened because otherwise, I had no real side effects from the chemo. I was a little tired the day of the chemo and maybe a little bit the next day. But then I had a lot of fatigue from other things going on, too. All the drugs that I have to take and so on.
They gave me Neulasta. I had to go to the infusion center again and get shots for three days.
I’ve been shaving my head for so many years that I wouldn’t notice that. But I’ve always had a goatee or a full beard and it’s always been like Santa Claus in the natural sense, where the hair grows straight out and really thick. When I started growing my goatee back after the chemo was done, it was going sideways.
I heard that my dad, when he was going through chemo for his lung cancer many years ago, lost his hair. He had really white, perfectly straight hair. His hair grew back really curly. I thought, If I grew my hair out, it would probably be really curly because my hair was always really straight. Now it has this curl right down at the bottom and it all ends up over on the side. It’s not a big problem, but I just thought that was hilarious that it wouldn’t grow straight now.
I’ve never had heart issues, but I heard that it could have happened with the chemo, but I haven’t seen any of that come up.
How did you feel about losing your hair?
It didn’t bother me at all. I think I look funny without hair on my face, but everybody else said, “You look great!” I didn’t have eyebrows, eyelashes, or anything. The nice thing was I didn’t have to trim the hair sticking out of my ears or my nose. I didn’t have to shave and I thought that was really nice.
What was it like undergoing cancer treatment during the pandemic?
The hospital moved the infusion center to an easier place to get to so that most of us that were dealing with [infusions], which were mostly cancer patients, could just walk in a door and we’re in that area. That worked out really well but that was only one visit out of the six I had.
Then they moved it back to way down the hallway. It was strange because it seemed like there was doom at the end of this hallway. You couldn’t see all the way to the end. But when I got down to the [center], everybody was awesome to deal with. I used to show off my port and have the nurses all giggling.
My sons, I felt really, really bad for them. They were both in retail where they dealt with the public every day. Neither of them wanted to visit me because they just assumed that if they gave me COVID, I was going to die.
How was it like going through this experience alone due to COVID restrictions?
My brother found other ways to deal with it. When I wasn’t in the hospital, he would come meet me at my house and help me clean up. We’d have some takeout when they figured out how to do that with COVID. He probably took more time to come to my house to make me feel like there was somebody there.
I had a nurse that came to my house once a week to maintain the bandages and the surgical point for the nephrostomy tubes that I had to help with my kidney failure. I got to know her pretty well and she was a lot of fun.
My sons, I felt really, really bad for them. I knew they wanted to come and visit me but they were both in retail where they dealt with the public every day. There wasn’t any way they could [work from home] since they were dealing with the public every day. Neither of them wanted to visit me because they just assumed that if they gave me COVID, I was going to die. And they were probably right. I don’t know for sure.
There was always somebody that I could talk to though. There was no point where I was suicidal or anything like that. The doctors, at one point, were calling me every day.
How to deal with the feeling of isolation
I’ve always been a happy person, even though I was diagnosed in 2014 with ADHD. I guess I was just so used to being alone. It didn’t bother me. I didn’t let it bother me at all. I felt the same loneliness that I had before I had the disease.
Every once in a while, I’ll go out for drinks with my friends. I had both men and women that I could talk to about anything. I liked working so much [because] I was hanging out with 700 of my closest friends. I knew everybody in the plant. I may not have known their name, [but] I knew their face and what their family history was and everything. I could talk to anybody in that facility and feel better when I walked away.
We ran three shifts so there was always somebody in the plant to go talk to even if it was just about work. It was always good. I like being technical with people and teaching them things. So many of the people in that facility appreciated the fact that I would talk to them as somebody at their level or try to bring them up to my level of knowledge. They all appreciated that a lot.
I’d give anything to be there again, to be there right now.
I guess I was just so used to being alone. It didn’t bother me. I didn’t let it bother me at all.
The impact of having to retire early
I worked until January before my doctor finally said, “You’re done.” There were several things that led up to it. One of the drugs that I was on for ADHD kept me awake during meetings and also kept my brain working at a point where I could do my job as I felt that it needed to be done. Everybody said they didn’t notice that I was incapable of doing my job. I felt like I was incapable.
When my doctor asked me if I could do it without Adderall, I said, “No, I can’t. I’ve got to have the Adderall.” But I’ve been losing teeth from grinding my teeth so much and I felt stressed in my head even though there wasn’t anything to stress me out.
That drug was having a profound effect on my left kidney — that was the one that was struggling after cancer, even after the treatment. He said, “You’ve got to do something else.” I said, “We’ve tried everything else and nothing else worked like this.” He said, “Well, then you’re not working anymore.” “What?” He said, “Nope, we can’t do it. It’s going to completely destroy your kidney.” And I said, “Well, I got another one.” He said, “No, that’s not good enough. We don’t do that.”
I went out on medical again in January of ’21. By December of 2021, I finally decided I was going to retire.
It’s been a lot rougher because the medical leave, I knew that at the end of it, I was probably going back to work. And I was so excited to go back to work after the cancer treatment. My doctor said, “You really shouldn’t. You should just retire now.” But I don’t want to and we couldn’t come up with a really good reason to present to the Social Security Disability Board because my legs hurt and they’re weak. Why? We don’t know. And to this day, we still don’t know.
The thing that finally got me through all of it was chemo brain, which was really weird because I was an advanced-level engineer and I sat at a desk staring at a computer all day. I’d get up and walk around once in a while, but apparently, it was the best situation because I was approved for Social Security Disability two weeks after I applied. I’ve heard people that have gone for years trying to get disability insurance from Social Security with really obvious physical problems. I was really surprised by that.
I’d give anything to be [at work] again, to be there right now.
Twin brother gets diagnosed with bladder cancer
He got cancer right as I was coming out of it and that was disturbing.
We were sitting and talking in my house. I said I had so many issues with [my] kidney even after all the treatment [and] the UTIs. I had stents in the ureter for a little while [and a] nephrostomy bag and everything on me for over six months. With all of that, he told me that he was having trouble going to the bathroom and I said, “Get your butt into the doctor right now and don’t sidestep it. Tell them exactly what’s going on.”
He went to our doctor and did a urinalysis. They said, “Wait, there’s cancer cells in there,” and discovered he had bladder cancer but it was really early. He went through one round of chemo, but they put it right in his bladder. Then he did immunotherapy for, I think, eight visits or something. It was almost every three weeks, almost like my chemo. Then they set up a maintenance plan for him after they told him that he was cancer free. We were celebrating that one, too, but mildly celebrating because it was still COVID.
He came out of it really well. I am just so happy that happened because there were a couple of scares where they thought it might have gone into the muscle tissue and I’ve heard that that’s not a good sign.
Getting a second opinion post-treatment
The last time I’d seen the doctors at Beaumont, at the Rose Cancer Center, in one sentence they told me I was cured and in another sentence told me I was in remission so I didn’t know what to believe. This was partially the reason that I went to Karmanos.
They also told me that Karmanos would be the next step if the cancer did come back, that Beaumont could no longer perform the treatments. They couldn’t do the stem cell transplant or anything if the cancer came back.
I set [it] up with Karmanos on my own. She had seen all of my records from Beaumont. They had access to my online chart. When I went into her office, I said, “I don’t want to have baby powder thrown up in the air and everything else to make me so welcome here. I want to know what’s really going on.”
It was humorous, the story. She said, “There’s a 65% chance that your cancer is going to come back.” I said, “Really?” She said, “That means there’s [a] 45% chance that it won’t.” And I said, “Well, I’m not as smart as most doctors, I don’t think, but there would be 35% that it won’t.” And she said, “Oh, yeah. You are an engineer, aren’t you?” And I said, “Well, yeah, but that one’s easy enough.” But so far, I’m good.
The other thing was that at Beaumont, they said that I was stage 3 to 4 and that they don’t really stage these things because there’s no real help in the treatment. I thought that was a little bit weird.
Then Dr. Sano at Karmanos said, “No, you are not stage 3 to 4. You are late stage four.” I said, “Oh. Well, what does that mean?” She said, “You are probably within a month of dying.” And I said, “Oh, I never even thought about that.” She wasn’t brutal about it or anything. I was thinking it was a quota they had to keep. She said, “That’s sometimes a quota thing. I’m not going to admit that any kind of a medical institution would do that.”
She was treating me as somebody on the same level, I’d like to think. She realized that before I had chemo brain, I was pretty smart. Since then, they’ve been pretty good. I’m afraid to say that she has left the hospital at Karmanos so I [will have to] see a new doctor next time. And I’m not looking forward to that because she was so awesome. She was really young, too. She was under 30. It was just nice talking to somebody that could tell it straight. I don’t want to sugarcoat it and that seemed to be what Beaumont was really good at.
Why did you start watching The Patient Story videos?
I was looking for confirmation that I was going to make it through all this. I’m not the type of person to be scared of a lot of things and this one scared me a little bit. I’ve been riding a motorcycle for 50 years and this one scared me a lot more than getting out in traffic on a motorcycle.
The videos were quite helpful in how people managed it, especially the thought of it coming back. When I started watching The Patient Story videos, I had already been through my chemo and they told me that my cancer was gone. Of course, I was happy about that but they didn’t really tell me the rest of the story until I started seeing a different oncologist in a different cancer center. She was the one that told me, “You could be in deep trouble here, fella.” She was very nice about it. I’m not saying that she was brutal, but it was something I needed to hear because I had no idea what my chances were of making it through without cancer coming back.
[The] interviews, especially the young people, got me through a lot of the secondary side effects that I have from the chemo and just making sure that I’m not alone.
I was looking for confirmation that I was going to make it through all this. I’m not the type of person to be scared of a lot of things and this one scared me a little bit.
How important was it to bring those moments of lightness?
It was important to me. I like to see everybody smiling. I’m the type of person [who] when I walk down the hallway at work and pass somebody, I always smiled at them. That was different after COVID hit, of course, but I still tried it and nobody responded.
I’ve always been that way, even [when] traveling. I always smile at everybody and people seem to smile back, even if they look like they were in a bad mood to start with. I just enjoy that. That’s something that I feel I need to do. And it helps. It helps me if nothing else.
Why men typically hesitate to go to the doctor
My brother is one of those tough guys. He’s really good with his hands, which was apparent in his avocation when he could still work. He was in printing and machine repair. He was an awesome mechanic. He was that kind of guy, very tough, and he wouldn’t wouldn’t admit to anything.
He was just like my dad. My dad, when he found out he had lung cancer, it was way too late. They just said, “Well, how long do you want to live?” He took the chemo treatments and everything. He lived for 15 months.
With Kurt, he would wait until it was killing him. He’s had two heart attacks and both of them were like, “Why didn’t you come in when you actually had the heart attack?” “Well, I just thought I needed an antacid or something.”
Don’t let it slide. If you have a pain that doesn’t feel like normal pain, have them look.
How to convince someone to go see a doctor
It was easy after all that I had been through. At that time, he probably heard me whimpering in the bathroom when I had to go because it hurt so bad.
For me, it was — my back hurts, yes, but not in this spot. In this spot, I’ve never felt that pain before. Don’t push it aside, especially as you start to get older.
Getting those infections that led to the sepsis, when the actual sepsis set in and my brain wouldn’t work, I was stumbling around the house and my brother’s trying to keep me from falling. I’m doing these calculations in my head that make absolutely no sense. It was like I was at work, but I wasn’t where I work. I would have probably just said, “I’m just weird, you know?” And my brother said, “No, I think we’re going to the hospital now.” He loaded me in the car and we got there. The nurse did all my vitals. My blood pressure was really low and my heart rate was really high. That was in the throes of it.
Don’t let it slide. If you have a pain that doesn’t feel like normal pain — because I know every man has some pain that he doesn’t admit to or that’s been around for 20 years. “It’ll be okay.” It probably won’t be, but if another one comes up, have them look at that one. It’s simple. It’s half an hour at a doctor’s office and you’re done with it or even a couple of hours at an E.R., if you have one that’s not too busy.
Most of us have medical insurance now. And even those of us that don’t, if you do find out you have cancer, I’m sure with a lot of the lymphoma societies, there are ways to get financial help. I haven’t needed it, thankfully. Just get it done.
Make sure you get diagnosed. If you even have just this remote idea that there could be something amiss inside your body, get it checked out. There’s no reason not to.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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].
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Initial Symptoms: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough
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.
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.
Erica H.
Tylere P.
Kelsey R.
Delishea A.: I’m from Louisiana. I was first diagnosed in June 2020, right before I turned 30. Just graduated as a medical biller and coder, and I’m about to get back [into] the workforce.
Erica H.: I am from San Francisco, California. I was diagnosed with Hodgkin’s lymphoma stage 3B [in] September 2019 and in remission as of March 2020, right as the pandemic was hitting off. I belong to a runners club and the motto is [to] start slowly and then taper off, so in all things — starting my business but especially doing treatment — that motto was really important.
Tylere P.: I’m currently in Grand Rapids, Michigan. I was diagnosed with Hodgkin’s lymphoma in 2014. As of August 1st of [2022], I just hit my five-year anniversary of no chemo so that’s pretty big. I am a videographer and photographer. I also own an insurance agency so I got a lot going on these days.
Kelsey R.: I’m from Bentonville, Arkansas, which is my hometown, but I actually live in Austin, Texas. I was diagnosed with stage 2A Hodgkin’s lymphoma in September 2017 and I’ve been in remission since March 2018. I am an architectural historian and a writer. I dabble in comedy writing and screenwriting. I also own a vintage furniture company.
Stephanie, The Patient Story: Each of our panelists really represents a different situation so we’re going to be able to hear a range of experiences.
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 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
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.
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 Janssenfor 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
[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.
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.
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.
