Author: Katrina Villareal

Black Myeloma Patients: Access & Disparities

Post author By Katrina Villareal
Post date March 16, 2023
No Comments on Black Myeloma Patients: Access & Disparities

Multiple Myeloma: How Your Race and Age Can Affect Diagnoses and Treatment

Valarie Traynham

Multiple myeloma is the most common blood cancer among Black patients in the U.S., but many of those patients have an entirely different experience.

Studies show that Black patients respond better to newer treatments but are still twice as likely to die from the disease.

Patient advocate Valarie Traynham speaks with Shakira Grant, MBBS, of the UNC Medical Center. They discuss the barriers many Black patients face, how it impacts their care, and what can be done to help improve their outcomes.

Dr. Shakira Grant

Table of Contents

Introduction
How do we get more diversity in clinical trials?
How would you advise older multiple myeloma patients to stay positive?
How do you build medical trust in Black communities?
Barriers patients face that prevent their care
Conclusion

Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
Valarie Traynham

Introduction

Valarie Traynham: I was diagnosed with multiple myeloma in 2015. Being a patient advocate, I want to be able to guide others through the process. When I was diagnosed, I did not have someone to go to and I think that’s very important. Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.

I’m just so excited at the work that Dr. Grant is doing because it’s much needed. It’s an area that needs focus and she’s doing a wonderful job [of] getting that focus out there.

She focuses on a population of patients in the myeloma world that oftentimes [is] overlooked. It’s very important for that population of patients to be looked at and cared for and really understand what they are going through.

Dr. Grant is from the University of North Carolina and she focuses on geriatric multiple myeloma, health, and research.

Valarie Traynham at the IMS 19th annual meeting and exposition

Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for Black older adults with multiple myeloma.
Dr. Shakira Grant

Dr. Shakira Grant: I’m primarily here to talk a little bit about our research and how this fits into sharing stories of patients and caregivers, which our team is really passionate about.

What really drew me to this type of work was this love for trying to bridge this gap in terms of the disparities that we see existing within not only outcomes but also survival for Black and white patients with multiple myeloma.

Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for older Black adults with multiple myeloma. It’s really important for us as a research team to address some of these healthcare access barriers, which largely drive the disparate outcomes that we see in multiple myeloma.

We presented two studies. For the first one, we wanted to understand what barriers patients and their caregivers encounter when trying to seek care for multiple myeloma.

The top takeaway from that study is that many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms. Often, patients reported being dismissed by their doctors and being chalked up to just getting older and then repeating labs again in three months.

From this particular study, while we identified other barriers, including financial barriers, we do recognize that there is a need to focus on how we make the diagnosis, ensuring that patients are getting the diagnosis on time, which would allow them to enter into a care pathway where they can begin their treatment and minimize any chances that they will have any poor or adverse effects from multiple myeloma.

In terms of the other study, we wanted to look at factors that influence the participation in clinical trials for Black patients in particular. We did this by looking at the perspectives of patients with multiple myeloma as well as their hematologists.

One of our main takeaways from this is that the patient and their relationship with their doctor is really critical when trying to decide if a patient is going to be offered the opportunity to participate in a trial. Based on these findings, we do recognize that there is a need for more targeted interventions that address several steps in terms of communication between patients and their doctors to ensure that we have the best chances of offering clinical trials to a diverse patient population.

Many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms.
Dr. Grant

How do we get more diversity in clinical trials?

Valarie: I heard a lot about clinical trials. How can we get more minorities involved? What is that like for the older population that you see in the clinic?

Dr. Grant: Overall, when we think about increasing representation in clinical trials, we are coming up against two compounding factors. One is the older adult and then it’s the older adult who also identifies as having Black race.

For me, in clinical practice, one of the things that we try to do is to not only look at [the] patient’s chronologic age, but we also look at the functional age of patients. How well are they able to do their activity and to get around day to day? I believe that [is] probably better to assess eligibility for these particular patients for clinical trials in terms of Black representation or increasing representation of minoritized populations.

It is important for us to realize that myeloma does tend to affect an older adult population. We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together. Our efforts to increase representation should be geared towards the older adult population, as well as thinking about the racial, ethnic, and minoritized populations.

We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together.
Dr. Grant

How would you advise older multiple myeloma patients to stay positive?

Valarie: For a newly diagnosed older patient, how would you advise them? [There’s] so much going on. They’re getting the diagnosis. They’re trying to make it to the clinic. How would you advise them to stay positive and look for the good in the situation that they’re facing?

Dr. Grant: The thing that is really important that I’ve seen come out not only [from] our research but in my own clinical practice is the need to have a social support system. In our study, we looked at informal caregivers who were oftentimes spouses and, in some cases, adult children.

I really do think that having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you with the amount of information that you’re getting, scheduling, [and monitoring] any potential treatment-related side effects.

I think [it’s] really important for patients to also seek knowledge about multiple myeloma from credible resources. Read as much as possible what you can about this disease, about things that you can expect, and then come to your provider’s visit prepared with those questions ready.

Having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you.
Dr. Grant

Ask [about] things like clinical trial participation, if your doctor hasn’t mentioned it. It’s really important for patients to take that first bold step and say, “I’ve read about clinical trials. Do you think this could be a potential option for me?”

This really moves into this idea that we want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.

Valarie: I’m so glad you said that because that is one thing that I always try to tell newly diagnosed patients as a patient advocate. Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.

We want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Dr. Grant

How do you build medical trust in Black communities?

Valarie: We know that trust in the African-American community is a big deal and that’s what we are focusing [on], too: raise trust and build trust in the community. As a physician, what are some of the things that patients are mainly dealing with?

I was listening to something and they talked about words matter — how you talk to patients, understanding patients, words that you use, words that the patient uses, and understanding and gathering information. Tell me [about] your thoughts on that.

Dr. Grant: What we’ve seen in our studies time and time again is that there is this legacy of medical mistrust that has been brought on by past research events where Black patients were intentionally harmed by the research enterprise and so it takes quite a while to be able to reverse those effects.

Things that we’ve learned from talking to patients [and] caregivers that can help close that trust gap is really working on our communication style as physicians, making sure that we’re using empathic communication, [and] letting our patients see that beyond the doctor title, we also are real people with real lives and lived experiences.

Don’t be afraid to pull back that curtain sometimes and let patients see that that relationship between patients and providers really helps to build up trust.

Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
Valarie

I think of a particular quote from one of our studies where a patient said that it’s all about [the] relationship and if we need to build trust, we really need to be focused on the relationship. That particular participant went on to say that really they believe that the physicians could benefit from relationship-building training.

That really stuck with me because I recognized that trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.

When it comes time to think about the research, there are different strategies that our team [uses] to really help foster trust and to help engage Black participants in our study. Some of those strategies have been described in the literature, but really it’s about having a team that is representative of the population that we’re trying to engage and helping them realize the value of this research and why we need to do this, especially for the Black community.

Trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
Dr. Grant

We need to recognize that access to healthcare is dependent on several steps. This includes the patient’s ability to perceive their need for healthcare. Then they need to be able to seek out those services, reach the services, pay for the services, and engage with their healthcare provider.

I would encourage patients: if you are experiencing symptoms you’re concerned about and you’re seeing your provider and you don’t think your provider is necessarily answering or addressing those questions, don’t be afraid to talk to somebody else. Talk to another provider and do some additional research and see if there is potentially another option for you to have your symptoms examined.

They have to think about [the] costs of medications but also when they’re coming to the cancer center, the cost of parking, the cost of gas… all these things are really additive for patients, especially when they’re on a fixed income. This idea about having to pay twice was centered around the need to pay for all of these other healthcare services while also attending to the high cost associated with paying for parking at the health center.

In terms of other economic impacts, things like parking, don’t be afraid to tell your provider, “This is challenging for me to pay for parking,” or, “I’m having challenges just paying for my medications.” Because honestly, sometimes the visit time is so short that we don’t always have the time to ask if you are having financial concerns. We don’t want that. These financial challenges are a limitation to you getting your care on time.

Don’t be afraid to talk to your providers if you have concerns. Make those concerns known… If you’re having financial challenges, continue to share those concerns and ask about available resources.
Dr. Grant

Barriers patients face that prevent their care

Valarie: How often do you have patients that [face financial limitations?]

Dr. Grant: We actually see this, in my practice especially, quite often. It’s not uncommon at all for patients to be concerned about the cost of parking. Patients would express concerns about their ability to pay for parking. Sometimes it’s a bit of a challenge knowing what to do in those scenarios.

There are some efforts now at our cancer center to try to provide more accessible parking in terms of financial costs and reducing the cost of that, but it’s not always widely available to patients.

Don’t be afraid to talk to your providers if you have concerns. Make those concerns known. That goes from even when you’re first presenting, before you’re diagnosed and you’re concerned about it, keep sharing those concerns with your provider.

If you’re having financial challenges, continue to share those concerns and ask about available resources. There are more resources out there than sometimes patients may actually think or may actually have knowledge about.

Conclusion

Valarie: Thank you for joining us today and going over all of this. It’s so important what you do in the field of myeloma.

What we’re dealing with is meaningful. It’s life-impacting so it’s very important that you understand if you’re not being treated right or you feel that something is not right, say something because it’s not okay.

You have the right as a patient to have something done about that. You are in control of your health. Don’t settle. Without you, it would just be a missing piece.

Dr. Grant: Thank you for having me.

Valarie Traynham International Myeloma Foundation

If you’re not being treated right or you feel that something is not right, say something because it’s not okay. You have the right as a patient to have something done about that. You are in control of your health. Don’t settle.
Valarie

Special thanks again to AbbVie for its support of our independent patient education content. The Patient Story retains full editorial control.

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Acute Lymphoblastic Leukemia (ALL) Cancers CAR T-Cell Therapy Chemotherapy Clinical Trials Immunotherapy Leukemia Patient Stories Radiation Therapy

Tatijane’s Acute Lymphoblastic Leukemia Story

Post author By Katrina Villareal
Post date March 14, 2023
No Comments on Tatijane’s Acute Lymphoblastic Leukemia Story

Tatijane’s Acute Lymphoblastic Leukemia Story (ALL)

Tatijane first knew something was wrong when she started having pain near her ribs. Her pain became so severe she was rushed to the ER and was then diagnosed with acute lymphoblastic leukemia, both B and T cells, with mutations. At 24, she was then given 6 to 8 weeks to live.

She shares how she processed her shocking diagnosis, the different treatments she’s undergone including a double CAR T-cell therapy clinical trial, and how she’s giving back to the cancer community.

She voices how she coped with three cancer recurrences, the emotional toll her diagnosis has taken on her, and how she found support.

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

https://youtu.be/_BVF0lnSiM0

Name: Tatijane W.

Diagnosis:
- Acute lymphoblastic leukemia (ALL), B and T cells, with mutations

Initial Symptoms:
- Bone pain in ribs
- Trouble breathing
- Fast heart rate
- Painful lymph nodes in the neck
- Lump in between breasts

Treatment:
- Chemotherapy
- Radiation
- Double CAR T-cell therapy (clinical trial)
- Bone marrow transplant

Even now, I still feel like death is just sitting there in the corner, waiting and watching me. I’m not a curable patient and, at some point, they say that this cancer is going to take me. But I also am pretty tough and I’m a fighter so we’ll see what happens.

Introduction

I’m an artist. I do photography, I like to draw [and] paint, [and] I did glass art for a while. I specialized in sandblasting, but I did do some stained glass.

I love music, watching TV, [and] movies. I love crafting and knitting. I like to stay very busy with artsy, crafty things.

I love mermaids. I have a mermaid tail that I actually swim in. My whole house is mermaid-themed.

I love being with my family and friends.

Tatijane W. competitive swimming in high school

Tatijane W. with Heather day before diagnosis

Pre-diagnosis

Initial symptoms

The January before I was diagnosed, I was starting to have bone pain in my ribs. I developed this mass in between my breasts. I started to get what I thought were tight muscles or little knots in my back. It was very painful, but I just kept getting massages from my family to try and get that.

I stopped eating so much because it was hard to eat. I was having issues breathing, but I was also overweight. I was 306 pounds so I thought maybe all of this had to do with being overweight. When I went to the doctors for all these issues, they said, “Lose weight and it will help.”

Then it was, “You have PCOS (polycystic ovary syndrome) so maybe that has something to do with it,” or “You have insulin resistance; that could have something to do with it,” or I also had other hormone imbalances, maybe that has something to do with it. It always came back to lose weight and it’ll go away.

On February 17th, my best friend stayed the night at my house. Then [on] the 18th, I went into the ER because I was in so much pain [that] I couldn’t handle it. I was diagnosed [on] the 19th. It all happened very fast.

Feeling like there was something more there

I didn’t think they were doing enough tests. I thought there was something else because none of it made sense. [What] does this have to do with being overweight? It was very frustrating, but it felt like I couldn’t really get any other resolutions from this.

I was messaging my doctor on the 18th, saying, “I can’t handle this pain anymore. What can I do?” He said, “Just go to the ER. It is a cyst that needs to be drained.” Nope, that’s not what it was.

Being in the ER that night was very traumatic because it was during COVID. I was in the ER by myself. They started running these mandatory ER tests.

They did a scan and saw the masses. The mass on my chest was so large, it was as if I was wearing a sports bra. It ended up collapsing my right lung and it was surrounding my heart and crushing it.

When I was diagnosed, they gave me six to eight weeks to live. I was alone in the ER getting diagnosed with that. It was so crazy.

The doctor had to come in and said, ‘I’m really sorry to tell you this, but you have cancer and it’s throughout your whole body. You would have 6 to 8 weeks to live.’

Getting the official diagnosis

My mom was sitting in the parking lot. Then maybe 10 minutes before they came in to tell me my diagnosis, I said, “Just go home,” ’cause it was already one in the morning. “I’ll call you when it’s time for me to come home.”

By the time she got home, I was calling the house phone. The doctor had to come in and said, “I’m really sorry to tell you this, but you have cancer and it’s throughout your whole body. You would have 6 to 8 weeks to live.”

Originally, they said it was non-Hodgkin’s lymphoma. It was very sad and very scary to hear. I remember trying to keep my composure. I was like, “Okay. How do we resolve this? How did this happen?” He was telling me it could be environmental, it could be genetic, all this stuff.

I remember just crying and going, “Did I do something wrong? Did I cause this on myself?” It was the weirdest. Went from mature, “Okay, how can we do this?” to then just crying.

There was no history of cancer in my family and there still isn’t [on] either side. It had to have been environmental. My family and I think we know what caused my cancer.

For it to be you weren’t listening to me and it was something this serious, that was very frustrating because it was like, ‘Could this have been caught sooner?’

Possible environmental cause

I believe my cancer had come from medication for my insulin resistance called metformin. There is a lawsuit against them. It turns out that the factory that they were getting the metformin from in India had jet fuel or something that ended up being exposed to the medication.

There have been many cases of many different kinds of cancers that developed after taking this medication. I was in the right time frame for that to be a possibility for me.

I strongly believe that is what caused my cancer [and] so does my family. It makes me sad because it was something that was supposed to help me and ended up hurting me worse than anything.

But also, if it didn’t happen, then none of this other great stuff would have happened. It’s a positive, but also a negative. I don’t want anyone else to be put into this situation.

Not getting answers when you know something’s wrong

It was frustrating. My whole life, if anything was wrong with me, the answer I always got was, “You need to lose weight.” I was used to it.

I’m used to doctors not listening to me. But then for it to be you weren’t listening to me and it was something this serious, that was very frustrating. Could this have been caught sooner?

Official diagnosis

They were thinking it was non-Hodgkin’s. But after doing more tests, they realized that it was acute lymphoblastic leukemia, both B- and T-cell with other mutations.

I understand that my cancer is one that you either have one or the other, not both. It’s not typically found in adults and it usually doesn’t grow as fast as mine does.

Treatment

They [said], “We have to get you an oncologist and we have to keep you here until we could do the next steps.”

I spent the night in the ER. The next morning, they admitted me into the hospital for about two weeks.

I couldn’t see my family and friends in person except out the window of the room that I was sharing with someone. I was on the third floor so I would look down and they looked like little ants.

I was having such a tough time and I was crying. Luckily, one nurse, the head of that floor, came in to talk to me. She actually allowed my mom — if she had her COVID vaccinations, took a COVID test beforehand, wore a mask, all that stuff — to come in.

It was the first time I saw her since going into the ER. I just cried and hugged my mom. That was all I wanted to do because it was such a scary moment. I will forever be so grateful to this woman because for her to let me do that was the best thing ever.

Treatment plan

I got my oncologist. I was released from the hospital for about four days, just enough time to pack.

I started my stay in March. It was [a] six-step plan. I don’t remember what it was called, but the first step was being in the hospital, getting different types of chemos around the clock in a way. I got spinal tap chemo, chemo through the veins. I did radiation as well. I did that for the whole month.

We checked my body with a PET scan and I was actually in remission. It was so exciting. Then they started step two.

Halfway through, the mutations figured out the treatment plan and mutated to fight against the treatment so I was no longer in remission. Because of that, we couldn’t finish the six-step plan.

Luckily, my oncologist was talking to Stanford and they had a double CAR T-cell therapy trial going on. I said, “Yes, I will do anything.” I know that it was a trial. But knowing that going through this could possibly cure me [and] also help other people in the end, that was super important to me. My whole life, I just wanted to help people.

Double CAR T-cell therapy clinical trial

We went to Stanford [and] did a double CAR T-cell therapy. I did it in June and it was fantastic.

Dr. Muffly at Stanford, who was doing the trial, [was] the one that talked to me and became my primary over there.

I did actually have neurological problems through it. There were side effects, but in general, the process is very easy and it was very interesting to learn. That put me in remission for a little while.

Two weeks before I went into the hospital for the double CAR T-cell therapy, I went in as an outpatient and they took the T cells out. It was a very easy process. It was just like giving blood if you’ve ever done that. They just take the [T cells] out and put the remaining blood back into your body.

What they did with the T cells was make them like little ninjas. You get put inpatient and when they put the CAR T cells in my body, it was just like getting any other infusion. Then you just hang out and see what happens.

They watched you. They do neurological tests every day where they ask you questions. You have to write your name every day as well to see where you are [and] if you’re going to have a neurological issue. They watch for other side effects as well. But for the most part, it’s just easy.

I was in remission for a short time. Then I came out of remission. The cells that they were attacking were C19 and C21. My body figured out the treatment plan again and changed itself to then attack the CAR T so the cancer began to grow back.

It was only maybe a month or two. It might not have even been that long because I got my double CAR T-cell [on] June 11 then I got my bone marrow transplant [on] August 27. It wasn’t that long in between.

The process of joining a clinical trial

There was a lot of paperwork. They go through that information with you. I remember being in the office and it ended up being like an hour and a half meeting instead of a 30-minute meeting because there was just a lot to go through.

They explained how the process worked as [simply] as they possibly could so that was nice.

Tatijane W. neurological issues post-CAR T

Honestly, the bone marrow transplant was the hardest treatment I have been through.

Bone marrow transplant

We tried a bone marrow transplant. They knocked everything out of my body. At that point, I was [at] Stanford for about four or five months already for the double CAR T and then another five to six months for the bone marrow transplant.

Honestly, the bone marrow transplant was the hardest treatment I have been through.

They already knew that I needed a bone marrow transplant prior to the double CAR T. They just thought that they would get a little bit longer before they can give it to me, but it really wasn’t that long.

They [paired] with Be The Match to find a match for me and I ended up getting the perfect match. They were a year younger than me, but that was all I knew.

I did four days of radiation, twice a day. It was [the] full body but also localized to the lung area and sternum area. I also did heavy-duty chemo for about four days to maybe even five days. Then they gave me the bone marrow, which was the big bag.

My donor went above and beyond to be able to be my donor. They got a tattoo a few months prior to being asked to be my donor because they had no idea. They told me, “They can’t be your donor now unless you say that it’s okay.”

My donor got all the information to show this is a good location where I got it, all the stuff was clean, [and] all this other stuff, went above and beyond to still be my donor. I was like, “Of course, yes, they could still be my donor. Let’s do this.” The fact that they did that was so amazing to me because that really showed they really wanted to help.

They gave me the bone marrow and that was a three-hour process, I believe. Then I just hung out in the hospital as the side effects started.

With a bone marrow transplant, you get graft versus host disease. To treat graft versus host disease, they give you steroids. They did that and immunosuppressants.

They figured out that my cancer feeds off of those. I was in remission and then I wasn’t because the steroids and the immunosuppressants caused my cancer to grow.

I think that one was maybe two months. I got to go home a week before Christmas after my bone marrow transplant. I was not in remission at that point, but it was low enough that they could deal with it.

Then after that, I was put on experimental chemo, called navitoclax, paired with venetoclax, which is a normal chemo. I was on that for seven months. I did really [well] and then my body figured it out.

Now I’m on Blincyto. I’m on my two-week break. After two weeks, I get put into the hospital for two days and start round two on the day that I get admitted.

I’m watched for two weeks, get sent home for the remaining four weeks of treatment, and then go to the infusion center every week to get my bags changed. Then two-week break and then back in the hospital for round three. They want to do this for as long as my body will allow it, basically.

I was trying very hard to be positive, but it was difficult during that time.

Tatijane W. video meeting Jesse McCartney

Side effects

With every other treatment I got, they promised me my hair would fall out. Then when I did the bone marrow transplant, they said, “Your hair is probably not going to fall out.” Then my hair fell out. I was so excited because [I’d] been waiting for it.

I wanted to take control of my cancer. I did a head-shaving party with my family and friends. Jesse McCartney actually ended up doing an inspirational video for me. My family and friends got together and made that happen for me so it was super fantastic to see that. I’ve loved him since I was five. I actually cried.

My depression hit me really hard at this point. Although my family [was] coming to see me, I was alone and I just didn’t feel great.

They would give me medication for nausea and other side effects. I did get really bad mucous.

When the mucositis hit me, it went from my mouth to my butt and it was so painful. I was fighting the doctors on the pain meds because I was so afraid of becoming addicted. Not that I’ve ever been, but I was fighting them on it and I was like, “No, I have to do it myself.”

I got to the point where I couldn’t talk because I was in so much pain. My lips were so swollen and they were bleeding. I ended up getting on pain meds, which were very helpful.

I decided that I’m not going to fight doctors on it anymore, which is funny because I just fought my doctors on pain meds for my nerve pain, but then I gave in at some point.

I also got C. diff at the same time plus side effects from the radiation and chemo, including nausea, vomiting, [and] diarrhea. Smells change. Smells can trigger nausea and sickness. A lot going on. I did not feel good.

I was trying very hard to be positive, but it was difficult during that time.

I’m also very happy it happened the way it did because that was the hardest treatment. I was in so much pain. I probably lost the most weight during that treatment because I stopped eating completely.

They had to feed me through a tube in my PICC line, which is the hardest weight loss program ever. I ended up losing 100 and something pounds [from] being diagnosed to the end of my bone marrow transplant.

Managing the side effects

For nausea, Gin Gins^® from Trader Joe’s. I don’t know if other places sell them, but those helped me so much. Also having unused coffee grounds, near the door or any place [where] the smell could get through, helped. I would sometimes put it on the table by my bed so that would help me not get nauseous.

Chewing on ice helped me a lot. Ginger ale. There is something called magic rinse that helped with my throat and my mouth. I would just swish that and swallow it. It numbed it enough so that I wouldn’t have the pain for a while so that was nice.

Having a latrine next to my bed, as opposed to walking to the bathroom, helped. Trying to do things to keep my mind off of it also helps so I did a lot of crafting, a lot of drawing, and stuff like that.

Mental health

I think my depression started the day I was diagnosed. I already had really bad anxiety before [my] diagnosis, but it also got worse. I’d been like this throughout the whole treatment.

I’m a very happy and positive person. I believe that that is what’s been helping me also get such good results from my treatment. But it is okay to also have that dark side along with your bright side. It’s like yin and yang.

Tatijane W. with boyfriend Bear visiting hospital

During my bone marrow transplant, my depression was really, really bad and that is when the Stanford psychiatry department came to talk to me. They ended up telling me that I actually had PTSD, anxiety, and depression, which made a lot of sense.

I was having really bad nightmares about me dying, which would wake me up and then I would be up for a long time. I couldn’t go back to sleep afterward and I was scared to sleep. Then during the day, I was just so unhappy.

I wasn’t eating because I also have body dysmorphia that I recently learned about, but apparently, I’ve had it my whole life. It was all just piling up.

Then the anxiety with scans and bone marrow biopsies that any time I hear bone marrow biopsy or spinal tap chemo, I instantly get really bad anxiety. I have panic attacks constantly. This is something I deal with now.

I will be fine throughout the day. I’ll be happy. Then, for example, I will have to go to the grocery store to go get something and I will have a panic attack because of germs. I wear a big pink HEPA mask and I would sanitize my hands, but I’m so scared of getting sick and doing something to mess up whatever treatment I’m on that I react to it.

During the bone marrow transplant, my depression hit me so hard that when I was in the apartment [after] I was released [from] the hospital, all I did was sleep. I was awake for maybe 30 minutes a day. That’s how it was for a couple of months. It was really bad.

It hit me so hard. I didn’t get on medication or anything to help any of it until recently, but it was also because I wanted my body to feel. I wanted to figure out a way to get out of it myself. I don’t know why.

I’m a very happy and positive person… But it is okay to also have that dark side along with your bright side.

Reaction to PTSD diagnosis

I didn’t really understand what that meant. I did research afterward because I didn’t know that ordinary people could get PTSD.

Hearing that, looking into it, and realizing that was the cause of my nightmares — in a way, it’s helpful to have a label on what’s wrong with you.

But having a label doesn’t change it and it doesn’t fix it. You just know what it is and that’s it. It was nice to know, but it also didn’t really help fix it. It just gave it a name.

Taking care of mental health

I ended up going to therapy and two different group therapies, which helped me. My therapist is independent and then the group therapies, one of them is for blood cancer and one of them is an AYA program.

AYA is through UC Davis and then the blood cancer is through Sutter, I believe. But they allow people from everywhere to come and join, which is fantastic.

Tatijane W. with mom walking in Stanford

I also did get put on medication for anxiety and depression.

With my therapist, we worked on the things that were causing nightmares. Death and the 6 to 8 weeks to live [were] causing a lot of anxiety. Yes, I outlived that, but when is it my time?

Even now, I still feel like death is just sitting there in the corner, waiting and watching me. I’m not a curable patient and, at some point, they say that this cancer is going to take me. But I also am pretty tough and I’m a fighter so we’ll see what happens. We’ll see who’s right.

Having to work through accepting death as a potential because with life is death so just accepting it helped the nightmares go away. Doing work like that I think helped a lot.

To be in these support groups and also talk with people that know what you’re going through and understand was super helpful and beneficial for me.

I wish I knew them [earlier]. In that first year when I was going through all these treatments and going in and out of remissions, I would have loved to be in these support groups and this excess support besides my family and friends.

Words of advice

Your emotions are completely validated 100%. You don’t have to be positive all the time. It is great to be positive, but [not] toxic positivity.

I thought in order to survive this cancer, I had to be positive all the time and hold the darkness in and that’s not how it is. It’s okay to let them live together. It’s okay to scream and cry and have those emotional moments. It’s very cathartic to do that sometimes.

Go to online programs. I found my blood cancer group therapy through Wellness Within. Finding cancer links to help you, whether you’re AYA or not, is very helpful.

Be completely honest with your caregivers, but also with your doctors on how you’re feeling. It’s okay to say I need therapy. It’s okay to say I need help sleeping. Whether you want to do it naturally or through something else, it’s okay to just tell them everything.

At this point, I’m an oversharer because I tell everyone everything that I’m thinking and I’m feeling.

I have found that when people ask, “How are you doing?” It’s easier for me to say, “Emotionally, I’m this. Physically, I’m this. Spiritually, I’m this.” That has been the easiest way to answer that question instead of just going, “I’m fine. I’m happy.” I’ve compartmentalized everything.

Know that you can do it, even when times get hard. You are a fighter and you can do this. You got this.

You are a team with your doctors… How is your team going to run well, if you’re not honest with each other?

Advocating for yourself

Knowing that your life is your life. No one can do it better than you. It’s okay. You’re not annoying the doctor if you are pushing them and saying, “No, no, no, there is something wrong. Please test for this.” Even if you don’t know what to test for, push for it because it’s your health in the end and your life and that’s the most important thing.

When I first got diagnosed, I was so worried about annoying the doctors that I didn’t want to tell them if I had a side effect. I was like, “Oh, I’m okay, I’m fine,” and put a smile on my face, and that wasn’t the case.

I realized that was hurting [me] more than anything. I was so uncomfortable that it was unnecessary. Just being able to advocate for myself and be like, “Okay, here’s how I’m actually feeling. What are your plans? What are your ideas on this?”

You are a team with your doctors. They are not working for you, you are not working for them. You’re a team and that’s just how it is. How is your team going to run well, if you’re not honest with each other?

You have to lose that filter. You’re going to have to tell them everything. You’re going to show them your whole body and that’s okay. Again, it is your life so [advocating] for yourself is the most important thing that you could do.

Tatijane W. Light the Night with friends and family

Giving back through participating in clinical trials

For me, one of the things that helped is knowing that doing these clinical trials can help me, but even if it doesn’t help me, I’m helping scientists, future patients, current patients, [and] doctors learn more, potentially putting these treatments on the map for the future. That to me is fantastic.

In these trials [and] in treatment in general, you meet some pretty great people. I’ve become friends with people that have gone through the trials after me.

My Stanford doctor said, “Hey, they’re going to do this treatment. They’ve never done it before. Can you talk to them?” I’ve made some of the bestest friends that I’ve had that understand what I’m going through and I understand what they went through.

Cancer sucks, but there’s been so much good and positivity that [has] come from it. Being a part of these trials, meeting these people, and knowing that I’m helping [have] been one of the biggest, positive things that have come from it for me.

Whoever is out there battling cancer, you can do this. I know that it’s frustrating and it’s hard, but just don’t give up. The fight is worth it because the fight is you. You are the fight and you are completely worth it.

All feelings, whether negative or positive, are okay to feel.

It’s frustrating and it’s hard, but just don’t give up. The fight is worth it because the fight is you. You are the fight and you are completely worth it.

Thank you for sharing your story, Tatijane!

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Tatijane W.

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Treatment: Chemotherapy, double CAR T-cell therapy (clinical trial), bone marrow transplant

Cancers Chemotherapy Kidney Neuroendocrine Tumors Pancreatic Cancer Patient Stories Rare

Burt’s Pancreatic Neuroendocrine Tumor (PNET) & Kidney Cancer Story

Post author By Katrina Villareal
Post date March 8, 2023
No Comments on Burt’s Pancreatic Neuroendocrine Tumor (PNET) & Kidney Cancer Story

Burt shares his nightmare hospital experience where he almost bled out on the table, how he found out and processed his diagnosis, and how he strives to make sure cancer never defines him.

Burt’s Pancreatic Neuroendocrine Tumor (PNET) & Kidney Cancer Story

After experiencing brain fog and being completely out of it, Burt went to the hospital. They found out he had bad internal bleeding from ulcers. Doctors subsequently discovered a double diagnosis of pancreatic neuroendocrine tumor (PNET) and kidney cancer.

Burt shares his nightmare hospital experience where he almost bled out on the table, how he found out and processed his diagnosis, and how he strives to make sure cancer never defines him.

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

Name: Burt R.
Diagnosis:
- Pancreatic neuroendocrine tumor (PNET)
- Kidney cancer
Initial Symptoms:
- None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatment:
- Chemotherapy: CapTem (capecitabine + temozolomide)
- Surgery: distal pancreatectomy (to be scheduled)

I’m not thankful I have cancer, but there [are] so many silver linings and I’m so grateful for all that I’ve learned because I have cancer.

Table of Contents

Introduction
Pre-diagnosis
- Initial symptoms
Diagnosis
Treatment
How did your cancer treatment affect your mental health and emotional well-being?
Death and cancer
Importance of a positive mindset
Words of advice

I’m not a cancer patient. The disease will never define me.

Introduction

I consider myself a person first. I will never refer to myself as a cancer patient. I never refer to myself as the type of cancer I have. I’m always Burt who happens to have cancer. That’s the way I refer to myself because I never want the disease to define me.

I’m a native New Yorker. Moved to LA, San Francisco, back to New York, Connecticut, and then, ultimately, ended up in Portland, Oregon.

I’m married [with] two kids — one who works for a company in Redlands, California, and a daughter who’s a senior in California.

I love living in Oregon. It’s such a beautiful place and I love the outdoors. I walk outside a lot. I hike a lot.

I love talking to people. I’m an extrovert so I try to go out and meet people. I have a lot of coffee or Zoom meetings.

Once I got my diagnosis, I became a lot more driven to make a difference in the world. I do a lot of volunteering. There’s an organization called Catchafire, [which matches] nonprofits with specific project needs, with people who want to volunteer time.

I’ve met a lot of nonprofits that way. [I’m] involved with my own hospital. I’m also working with the group called NETCancerAwareness.org; I’m on their advisory board. I’m also on the Patient Advocacy Committee for the Society for Integrative Oncology.

I like to experience new things.

I’m not thankful I have cancer, but there [are] so many silver linings and I’m so grateful for all that I’ve learned because I have cancer.

I did a bucket list. I’m going to try to do stuff that I haven’t done before because I really want to, not because I’m worried about dying.

I don’t plan on dying. I’m going to live for a really long time and die with cancer, as we say, not from cancer. It’s helped me crystallize what’s important to me and some of the things that are important to me are doing new things.

I’ve never gone to Bryce or Zion or any of the big national parks on the West Coast. I’d love to go to Yosemite and climb Half Dome and do stuff like that.

Pre-diagnosis

Initial symptoms

I have chronic Lyme disease and I was in treatment for a long time. I have had a rough couple of years work-wise. I was laid off twice in three years and both jobs were ridiculously stressful.

[For] one, I had flown 71,000 miles in a year by June 1st. I don’t mind travel, but I don’t want to be on planes nonstop so that was extremely stressful and really took a toll on my body and my mind.

The one after was just highly political. I had somebody I worked for that didn’t go well and wasn’t respected by him. He thought he was a great marketer and he wasn’t.

I got laid off from the second job in June of ’21 and my health just started to decline. I wasn’t feeling myself anymore.

As time went on, I started to develop more brain fog. I flew to a conference in Boston and I basically couldn’t think. I couldn’t write a text, I couldn’t write an email, I couldn’t order food. I would lose my phone, which is something I’ve never done before. I wasn’t myself. I was completely out of it.

I talked to my wife and my sister and they both said, “Get on the next flight back home. Don’t stay anymore. Just come home.”

I believe in holistic medicine so I’ve been seeing a naturopath for 14 years. I came home, we went to him, and he helped bring me out of the brain fog. He helped clear my brain.

In June, I started to regress. Finally, right around July 1st, my wife looked at me and said, “We’re not going through this anymore. We’re going to go to a hospital and make sure there’s nothing seriously wrong with you.”

We went to the hospital. It turned out I had bad internal bleeding from two ulcers, one in my small intestine. Had a bunch of tests done. They found out I had cancer when they were doing CAT scans for internal bleeding.

We said we’re putting cancer on hold because [with] internal bleeding, I could die today. [With] cancer, there’s time. About 8-9 days [later], finally got that under control through interventional radiology. As I started to heal, we turned our attention to oncology.

I wasn’t admitted because of cancer symptoms. I was admitted because of other things I had going on. I’m holistic so I believe I’m a box. Burt is a box and all the stuff is connected. You can’t tell me the ulcers aren’t connected to the fact that I have cancer in my GI tract. It’s all connected.

The hospitals and the doctors won’t say it is because they don’t understand how. They’ll never say it’s connected because they can’t explain it. I got admitted for things that wouldn’t be classified as cancer-related symptoms, but they found cancer and those symptoms.

When you can’t think and you can’t control your thoughts, it’s terrifying. When you’re aware that you can’t, it’s terrifying.

The brain fog was terrifying. And brain fog is a Lyme disease so I actually thought it was Lyme.

I was supposed to start seeing a new Lyme doctor. I hadn’t even had my first appointment with her yet. I called her, crying, and just saying, “Help me. This is the scariest thing I’ve ever gone through.” When you can’t think and you can’t control your thoughts, it’s terrifying. When you’re aware that you can’t, it’s terrifying.

My Lyme doctor said, “Next time that happens, you immediately walk yourself into an emergency room and say, ‘I think I’m having a stroke.’ I don’t think you had a stroke. I think you have what’s called a TIA (transient ischemic attack).”

It was really, really scary. I’m not great when I’m not in control. I’m not a control freak but not having some level of control is hard for me. It was terrifying. It was sad, but sad doesn’t even really enter your consciousness when it’s like, “What’s going on in my head?”

When I checked into the hospital in early July I had an upper endoscopy. The doctor didn’t do anything wrong, but I think the scope hit my abdominal wall and started bleeding, [flooding] my whole cavity. I almost died on the table from an upper endoscopy. I almost bled out on the table. They had to intubate me.

There’s a lot of scary stuff that I’ve gone through. That being said, I feel amazing. I probably feel more myself than I have in years. I give myself what I call a Burtness scale, which is how much I feel like Burt, where a 10 is I feel exactly like myself and nothing’s wrong whatsoever. I’m pretty high on my Burtness scale lately.

I really feel great. I have two cancers, but I feel great and it doesn’t stop me from doing anything. I drive. I’m self-sufficient. I volunteer for three organizations. I hike. I go to yoga.

Diagnosis

My wife and I phrased it as phase one and phase two — phase one was stop the bleeding and phase two was cancer. Once the bleeding got under control and I was stable, then we started to deal with cancer.

Despite the fact that I said I’ll deal with cancer later, as soon as I heard that I had cancer, I would wake up at three in the morning thinking, Oh shit. am I going to die? If I die, where do I want to die? Who do I want around? I would start crying. I actually have an image in my head of where I wanted to be when I was going to die and it was pretty wild.

I’m not going to die. I can’t be more clear. I will not die from this. Barring anything I don’t know that’s about to take away everything I’m capable of doing, it’s not even in my consideration yet.

I really feel great. I have two cancers, but I feel great and it doesn’t stop me from doing anything.

Getting the official diagnosis

[During] the first three or four days in the hospital, I was mostly non-coherent because of the brain fog, which turned out to be an ammonia buildup in my brain because I was having liver function issues. They cleared that up and put me on meds that actually helped a ton.

I was in and out of coherence. The day after I had that upper endoscopy, I was coherent enough. The GI doctor came in and he was talking to my wife. At one point, he looked at my wife and whispered, “He knows he has cancer, right?” I didn’t and that’s how I found out.

First of all, there’s no ideal way to hear. Second of all, I refer to cancer as the most successful unintentional marketing ever. You say you have cancer, everybody thinks you’re going to die. There [are] so many things associated with the word cancer that may or may not be true.

I have two types — one is kidney cancer, which can [be] removed by surgery, and the other, I’ll have for the rest of my life. But there are people who have lived 20 years with it or even more and don’t die from it but die from other stuff. Cancer doesn’t terrify me. Actually, not at all. But that’s how I heard.

Cancer doesn’t terrify me. Actually, not at all.

Reaction to the diagnosis

The first question is, “Am I going to die?” The second question is, “When am I going to die?” And I was asking a GI who’s not even an oncologist. I think he was trying to figure out, How do I answer his questions but not answer his questions?

He answered them, which he probably shouldn’t have, but I don’t think he knew what to do. It was a really tough position for him. He’s not used to telling people they have cancer unless it’s a polyp that they removed from a colon.

The first question I had in my head [goes] towards mortality because that’s honestly what we’ve all been conditioned to think. It’s not like, “Oh, you have cancer. That’s a chronic illness, like ulcerative colitis,” People think, “Oh, you have cancer? Death.”

I use my blog for my own therapy. I wrote a post about how the biggest struggle for me was people, that when I told them I had cancer, who would say, “I’m so sorry.” Don’t be sorry. I’m fine. I’m not sorry for myself. If you want to feel sorry for me, that’s up to you. Just don’t do it in front of me because I don’t need it.

How other people react to the diagnosis

I wrote this whole article [about] the pity load, [which is] all about removing the pity load from people who are trying to figure out how to react to your bad news.

People want to be helpful, which is nice. But I appreciate it when they’re helpful because they know me and they want to be helpful in a way that’s going to help me.

I got home [from] the hospital and people kept saying, “Do you want us to bring over dinner or do you want us to do meal trains?” It was like, “No, thanks, I’m fine. I get up and cook three meals a day for myself. I don’t need a meal train.”

The “I’m so sorry” was another one. Prayers drive me crazy. I’m an atheist. I don’t believe in God. If you want to pray for me, do it for yourself. It won’t hurt. It can’t hurt, but I’m not excited. There [are] some things like that that are actually slightly annoying to me.

When I talk to people and tell people I have cancer, they’ll say to me, “How are you?” I’ll say, “I’ll tell you, but you can’t tell me you feel sorry for me.” My goal is to remove that conversation from them so they don’t have to feel the whole time, “What do I say?”

I was talking to a friend and she said, “How are you?” I gave her that speech and she said, “That’s fine. I won’t tell you I’m sorry for you.” I went through it. We had a great conversation.

She comes from the health insurance industry and she said, “I know health insurance can be a bear with stuff like this. If you want me to go through all your insurance stuff and see how I can help, negotiate with the insurance company to become a patient advocate, [or] whatever you want, that would be amazing. I’d be happy to do it.”

People want to be helpful, which is nice. But I appreciate it when they’re helpful because they know me and they want to be helpful in a way that’s going to help me.

To me, that was amazing because she understood what I was going through. She was empathetic enough to say, “Let me help you with what you’re going through.” It was like she understood my situation and knew what people in my situation needed and she responded based on that.

When I got home from the hospital, one of my cousins gave me a subscription to MasterClass. That is a genius gift for somebody who is basically really weak, somewhat bedridden, and can’t do a lot early on. It’s just so smart. It gives me something else to do.

People who are actually thoughtful enough to think about who you are and what you might like or what might help you and respond, that’s worth its weight in gold.

The generic stuff, it’s fine. If somebody says, “I’m so sorry for you,” it’s like, “Thanks?”

If you say to me, “I’m so sorry for you. Tell me more about what you have. Are you worried about it? Can you sleep at night? How’s the impact on your family?” That’s a whole different thing. That’s great, too.

People who are actually thoughtful enough to think about who you are and what you might like or what might help you and respond, that’s worth its weight in gold.

Treatment

I was in the hospital for two weeks. It was really about stopping the bleeding and getting me stable.

I did have biopsies taken of my kidney and my liver while I was in the hospital, but it was basically a side procedure.

I was at a hospital part of the Providence health system so they set up an appointment for me with one of their oncologists.

My wife and I both come [from] business backgrounds. While in the hospital, we made two lists [with] criteria that [are] important to us in a cancer doctor and then who we want to ask for recommendations.

It turned out that one of my better friends is a radiation oncologist so he obviously knows people all over the place. Then I’m also good friends with somebody who runs a research lab at Oregon Health & Science University, a major hospital in Portland.

We reached out to the two of them first. I had [an] appointment at Providence and they both said OHSU is great.

My friend who works there set me up with the head of the pancreatic cancer unit. I don’t have pancreatic cancer, but I have an offshoot. He met with me and we really liked their approach.

I like the fact that it’s a teaching hospital. They’re internationally recognized. The surgeon is one of those godfathers of the type of cancer I have. And so we started going there.

I’m really well connected in the healthcare community because of the time I spent in healthcare marketing so I had a million people to ask. I was really happy, honestly, with the second person I found, which was the OHSU people.

Providence was really good, too, but I had heard there was some turmoil in the hospital. There were some people leaving and they were getting some new people. They actually ended up getting a really, really good oncologist who specializes in PNET, but I was already at OHSU. It turns out, my medical oncologist at OHSU and the Providence NET doctor are friends.

Treatment plan

They got me on a protocol called CapTem, which is two meds. One is called capecitabine and one is called temozolomide. You also take Zofran for nausea when you take the temozolomide. It’s the same protocol that I’m on now.

The protocol is 28-day cycles. You have 14 days on capecitabine. [In] the last five of those days, you add the temozolomide so you’re on two drugs for the last five days and take the anti-nausea when you take the temozolomide. Then you go two weeks off of any chemo drugs.

That’s the only oncology protocol I’m on. In addition to that, I’m trying to go to yoga twice a week. I eat really, really well. I’m trying to exercise more, although it’s been tough. I’m trying to be active as much as I can.

I found that my mental health is the key to my physical health. If my mind is engaged and I’m feeling useful, valuable, and using creativity, I feel better overall.

I go to two naturopaths. Western medicine is more about, “How do we kill cancer?” The naturopaths will be more about, “How do we take care of your body to make sure it’s capable of killing cancer?”

My naturopath is the only one who’s actually said to me, “We have to figure out why tumors even grow inside you.” That’s not a conversation you ever have with an oncologist.

We don’t know yet. I know I don’t have any genetic stuff. I’ve been tested for that and I don’t show any mutations that would lead to cancer. There’s some other genetic testing I want to do, but I’m not sure I have enough tissue samples so we’ll see.

The PNET’s the priority because it’s already metastasized. I have it in my liver, some lymph nodes, and some other places.

The kidney cancer, everybody’s basically said that’s your second priority so we’re not going to worry about that yet. The only way to deal with kidney cancer really is through surgery. My chemo protocol is systemic so it would make sense that it would shrink the tumors and it’s shrinking the tumors in my kidney, too.

The surgery scares me. Having cancer doesn’t scare me. The surgery I’m going to have to have is a huge surgery and that scares the hell out of me. Hopefully, they can do the kidney part as part of that surgery. If they can’t, then I’ll have to probably have a separate procedure for the kidney.

If my mind is engaged and I’m feeling useful, valuable, and using creativity, I feel better overall.

Side effects from treatment

The protocol is considered pretty mild and most people don’t have a lot of side effects from it.

The way I look at it is I have symptoms from cancer. My main symptoms are GI stuff, fatigue, which is fairly common, [and] some skin issues. Those are the biggest ones. I have a little bit of brain fog on occasion, but it’s really married to fatigue.

When the chemo impacts me, what I refer to as a side effect is it makes those worse. It’s not like I take the chemo and I get heavily nauseous, get bad headaches, or get bad pain. None of that.

When I’m on chemo, my fatigue is worse. Even when I’m off chemo because I think it still accumulates in [my] body. I’m still able to function for the most part.

And it’s not consistent. It’s not like I can tell you day eight of every cycle, I’m going to get hit with something.

If I start to get more side effects, I feel like there [are] a lot of natural treatments and remedies. The Society for Integrative Oncology [has] published studies on acupuncture for pain management, music therapy, and other things that can help with some of those side effects. But, luckily, I haven’t had to do a lot of them.

Distal pancreatectomy for PNET

I currently have a 6.5-centimeter tumor on the tail of my pancreas. They’ll remove that part of my pancreas, my spleen, my gallbladder, and then since I have metastases in my liver — I think four or five tumors in the left lobe of my liver — they’ll remove the left lobe of my liver.

I do have some tumors [on] the right side, but they think they can just take those out. Supposedly, the right lobe of my liver has already grown a ton to accommodate for some of the function lost with the left lobe. My kidney functions both show fairly normal in all my blood tests.

I’m not excited. To me, losing organs is just such an unnatural solution. In 10 or 15 years, no one’s going to do this surgery anymore because it’ll be considered barbaric, but it’s what we have now.

My surgeon has told me it’s a serious surgery. He said, “You could be on the table for nine and a half hours. I’m going to be in constant conversation with the anesthesiologist about, ‘Do we think you can take more or are you losing too much blood? Do we need to close you up and have you come back in four months or can we get most of it out?’”

They won’t get 100% of the cancer out. Again, the kidney is different. They can get 100% of the kidney, I think.

[Regarding] the PNET, though, my surgeon has read studies where if you get 70% of it out, it’s as effective as getting 90% out. He feels like he can get out the primary tumor, which is the one on my pancreas, and a bunch of the other stuff.

He’s also said to me, “The liver is the most important thing for you. The liver decides if you live or die.” Basically.

He said our focus will be the liver and then if we can do everything we have to do in the liver, then we’ll remove the primary from your pancreas and then we’ll do the other stuff.

My goals moving forward are to heal myself, to help others heal, and then to help others who can help others heal.

How did your cancer treatment affect your mental health and emotional well-being?

When I got out of the hospital, I was really, really weak. Going from the couch to the bathroom, I couldn’t walk straight. I couldn’t do a lot. My wife, who’s unbelievable, was making [my] meals.

Early on, it was tough. It was depressing. I was just sitting there. I could do some MasterClass stuff. After a while, I could read a little bit and I’d watch a little bit of TV, but it just got depressing.

I have a lot of energy so I always have to be doing stuff. I can relax, but it’s hard for me to relax sometimes. As I started to get better, I just needed more challenges and the challenges tended to be more mental whether they were business problems, creative solutions to different things, or even blogging because that gave me a great outlet.

I started to look for those things. I’m Jewish. I’m not practicing but because of my upbringing, I remember when Yom Kippur is every year. This year, I couldn’t fast. I’ve always done it just because I like the concept of not focusing on food for a day. It’s pretty amazing if you haven’t done it.

I decided to go take a walk in the woods instead — no headphones, no music, [and] no podcasts. I decided that I wanted to organize myself.

I built my own strategic plan. My goals moving forward are to heal myself, to help others heal, and then to help others who can help others heal.

The first one is obviously just about me. The second one was about meeting as many patients as I could, helping both one on one and group, and volunteering. Then the third was a job specific to healthcare where I can make a difference in people’s lives.

Once I had those three guiding principles, that kind of organized me. I actually removed myself from stuff that wasn’t healthy and didn’t fit those principles. I resigned from a board that had nothing to do with helping other people.

I started to put different things in those buckets. Yoga has made me feel great in the past so I want to start doing yoga. I know it’s going to open my body more. It’s going to let things flow better. I started going to yoga twice a week.

I’d been in therapy for a while, but my therapist became more important because I was dealing with more serious issues in a lot of ways. I go to therapy once a week. I meditate most nights.

I got to the point [where] I decided there are going to be two parts to my healing — the drugs and “Let’s go kill the crap,” then “How do we make Burt healthy enough to survive killing the crap?”

A lot of people believe that while chemo might kill cancer, chemo kills you. And there’s a lot written on that stuff, too.

Part of it was just from boredom and from knowing that I needed more challenges and seeing how I felt as I undertook those challenges. Then the other part was the focus on doing things to help me get healthier in ways that weren’t just taking pills.

I don’t plan on dying. I’m going to live for a really long time and die with cancer, as we say, not from cancer.

Death and cancer

Unfortunately, there are cancers out there that will kill you and there’s nothing that science or anything can do to save you.

For others, look at mortality rates. The latest cancer numbers I might have seen is 50% of people with cancer pass away from cancer. So 50% don’t. The number of people who die from it will come down over time. It’s certainly not going to increase.

So much depends on the individual and on the type. That’s why I’m so upset when I say I have cancer and somebody says, “I’m so sorry.” Don’t pity me. I’m fine. Nobody needs to feel sorry for me.

It’s hard because, again, we also all have different personalities. I’m pretty optimistic and positive just by nature.

There are all these thoughts and emotions associated with the word cancer that don’t have to define you. I consider myself Burt who happens to have cancer, the same way I happen to have eczema or happen to have my legs itch.

Cancer is a higher degree of difficulty, no doubt. But that’s what I am. I’m not a cancer patient. The disease will never define me.

Death is hard, but there [are] a lot of people who have cancer who don’t die. And there [are] a lot of people who live a really long time with cancer, even if they ultimately end up losing to it.

Importance of a positive mindset

I’m very, very, very lucky and I’m very grateful. I know who I’m grateful for, but I don’t know who I’m thankful to.

I have an amazing support system. My wife is unbelievable. My medical team is great. My two naturopaths are both amazing. There’s a really strong community, even though it’s a kind of rare cancer that I have.

You have two choices. You can just sit around and wait or you can just say, “You know what? I have it.”

Sometimes I accuse myself of not dealing with the fact that I have it. I was in therapy and my therapist said, “What do you want to work on?” I said, “I think I need to get more in touch with myself emotionally. I have cancer. I have [what] a lot of people consider a deadly disease. I don’t really deal with it. I just ignore it and I go on and do other stuff.”

He said, “We could try to break all that stuff down, but it’s doing a lot of good for you right now. Those defense mechanisms are letting you feel good and it’s letting you do all these things. So for me to strip those things away from you right now, that’s not a good idea.”

Words of advice

The most important thing I’d say is you’re an individual. I can tell you what’s worked for me. You can read tons of articles about what’s worked for other people. It doesn’t matter. What matters is what works for you.

When you close your eyes and start thinking about what makes you happy or what you’ve done in the past that made you happiest, can you do those things more?

If you love quilting, even if you’re bedridden, can you quilt? Can you quilt more? Can you just start doing things like that?

I think what happens is as you start to take on more of those things, then you start to think about other things you’ve done. Maybe it’s quilting and cooking. Figure out what makes you happy and then just try to do some of those things. If you can’t always do them, maybe you can do things around them.

Even if you can’t quilt, maybe you can start watching YouTube videos of other people quilting. Maybe you can read books about people who quilted. Maybe you can study history through quilting.

Start with things that make you really excited. This is hard and I know people say this a lot, but it’s really important. You have to tune into yourself.

You’re an individual. I can tell you what’s worked for me… What matters is what works for you.

A lot of nights, before I go to bed, I will say to myself, just in my own head, “What else can I be doing to make myself feel better?” Sometimes I actually get answers back. Sometimes I don’t. Sometimes there’s nothing interesting.

It’s like, “Okay, that just tells me [to] stay the course. I’m doing fine.” There are other days like, “Yeah, you really should reach out to this person. I think it’ll help you a lot.”

I know that sounds a little wacky, but you know a lot more than you give yourself credit for. Looking inside and trying to find those things that get you excited and put a smile on your face are the places I would start.

You’re always going to be your own advocate. There’s no way to say this, but our healthcare system sucks. There are some decent people who work in it and there are some good people who work in it, but the system itself is horrible. If you don’t advocate for yourself, a lot of times, no one’s going to advocate for you.

I was bedridden in the hospital. If I got out of bed, the alarms would go off. My mom wanted to talk to me and my wife said, “Nice Burt has to go away. If you don’t feel up to it, you have to say, ‘Mom, I can’t talk now. I’ll call you tomorrow. Hopefully, I’ll feel better.’ You have to stop worrying about making other people happy.”

I’m a people pleaser. I always want other people to be happy. And I learned that early. You have to put yourself first. It doesn’t mean you can’t be sensitive to other people.

I went through [an] upper endoscopy. I almost died while having it. A couple of days later, they wanted to do another to see if the bleeding stopped and if the ulcers were getting better. I said no.

They said, “Why not?” I said, “My body can’t take it. I don’t want the procedures to cause my body more harm than whatever’s going on in my body.” They were generalists. I said no and they said, “Okay. It’s your call.”

The next day, the gastroenterologist came in. We told him the story and he said, “Yeah, I would never give you another one now. I wouldn’t do it either.” At the end of the day, you’re in control.

I know people who are 80 who have the type of cancer I have who refuse treatment, who say, “I’m getting close to where my life is probably going to move on anyway. I don’t want to put myself through that right now.”

You’re always in control of yourself and yet you have to be in control of yourself. Ask questions. Because at the end of the day, you’re the one who has to. You’re the one who this is supposed to help and you’re the one that this is going to hurt.

If you’re worried about something, don’t do something because the doctor says to. All the best doctors are used to having discussions.

At the end of the day, you’re in control… You’re always in control of yourself and yet you have to be in control of yourself.

Almost every time I’ve gone to my oncologist, I’ve said, “Hey, what about this procedure that I read about online?” I put the onus on him to explain to me why it won’t work.

That’s the one other piece of advice I would give. Three or four months in, I said to my doctor, “Can we have an appointment where we don’t talk about my test results at all? We’re going to be working together. We’re going to be partnering on this for a long time. Can we just talk?” And we did and it was amazing.

We talked about Twitter. He told me who he follows. He told me who his mentor was. We talked about some other doctors and what they were doing. I think we even talked a little bit about his kids.

If the doctor can’t spend the time, they’re going to say, “I’d love to. I wish I could stay longer, but I have to go to somebody else.”

You can say, “Great. So when can we follow up on some of the other questions I have?” Sometimes they’ll say send me an email or send me something through the messaging platform. Sometimes they’ll say set up another appointment, but don’t censor yourself.

The day of the doctor is god is gone. If you treat your doctor that way, it’s only going to hurt you. In the cancer world, everybody expects you to get a second opinion. A lot of them will recommend you do and even give you people to go talk to.

When you first get diagnosed, you think, Am I going to die? It doesn’t matter what type of cancer you’ve been diagnosed with. You have those thoughts and talking to other people who have those thoughts would be really valuable.

I do think there’s a lot of work in the cancer world to be done around understanding the experience and culture of actually having it.

I think there [are] really two parts to cancer — the treatment part and the experience part. The experience part is [what] people don’t ever focus on or talk about.

A lot of groups are about cancer treatment. The groups I haven’t found yet, which I’m trying to find, are, “I was just diagnosed last week with cancer, what do I do? Who do I talk to?” “How do I explain to my mom I have cancer?” “How do I explain to my brother [who] I haven’t talked to in 50 years that I have cancer?” Those groups don’t exist and the experience stuff needs a lot more focus than it gets.

The week I got diagnosed, I had more in common with somebody who was diagnosed with bladder cancer — something that I didn’t have, who had just found out about it — than I did with people who had had my condition for 15 years.

All the support groups and organizations are set up around [the] condition state and not experience with the condition. I think that’s a huge miss and a huge opportunity.

Be your own advocate and understand, at the end of the day, you’re in control of every decision. Your caregivers can tell you, “Here’s what I think.” You can still say to a caregiver, “Thank you for sharing your opinion, but I just don’t agree and I’m not going to do that.”

You’re in charge. It’s you. This is all about you. That’s the biggest thing I tell people.

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Neuroendocrine Tumor Stories

Jennifer Petersen, Neuroendocrine Tumor, Stage IV

Cancer details: Unknown site of origin, metastasis
1st Symptoms: Pain in upper back
Treatment: Chemotherapy, immunotherapy
...

Burt R.

Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatment: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
...

Tags Kidney cancer resources, pnet

Bladder Cancer Cancers Patient Stories

Karen’s Stage 1 High-Grade Urothelial Cancer Story

Post author By Katrina Villareal
Post date March 2, 2023
No Comments on Karen’s Stage 1 High-Grade Urothelial Cancer Story

Karen’s Stage 1 High-Grade Urothelial Cancer Story

Karen was diagnosed with stage 1 high-grade urothelial cancer after having kidney stones removed. Her story of strength and survival began years earlier.

An armed robbery left her a paraplegic at 19 years old. Since that tragic event, she has been in a wheelchair. Because of her paralysis, she needs to catheterize five times a day to empty her bladder, which eventually led to recurrent UTIs.

A cluster of kidney stones led her to the hospital. When the lithotripsy failed, the doctor put in a scope and saw the tumor.

She shares how she managed her mental health, learned to self-advocate and find a community for support.

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

Name: Karen R.
Diagnosis:
- Bladder cancer
Initial Symptoms:
- Recurrent UTIs
Treatment:
- BCG immunotherapy

You can’t stop tragic things from happening, but you can definitely use them for good.

Table of Contents

Introduction
Pre-diagnosis
- Initial urothelial cancer symptoms
Urothelial Cancer Diagnosis
Treatment
Words of advice

I was shot in an armed robbery when I was 19… [I became] T10 complete paraplegic, lost eight units of blood, and was lucky to survive.

Introduction

I live in Baton Rouge, Louisiana.

I was shot in an armed robbery when I was 19, [the] beginning of my sophomore year. I was a student at LSU. My boyfriend and I had gone out to this blues place after an LSU game [where] he played guitar that night.

We were going to get in our cars. My car had been broken into so we were looking at that [when] some kids with guns came up from behind us. Somebody put a gun [at me] and grabbed my shoulders. There was a kid with a gun on Mike’s side of the car [who] put a gun to his head.

I got shot in the back point blank as a result of a shuffle that happened. [I became] T10 complete paraplegic, lost eight units of blood, and was lucky to survive.

Crazy way to start college.

[I’ve been] a manual wheelchair user for 35 years as a result. I finished my undergrad in psychology, got a master’s in social work, [and] got married. Not to him — everybody asks me that. We dated for seven years and I called the wedding off after invitations were mailed out.

I met my husband in grad school. He was getting his engineering degree. I had a nine-month-old when I started grad school. Then I became a licensed clinical social worker [and] worked in hospitals for 20 years.

I now work for a company called Numotion. We’re the largest supplier of custom wheelchairs. I still sort of use my social work degree trying to help people with disabilities.

I do a podcast: Life Possible with a Disability. It’s mostly for people with mobility impairments.

I do a lot of social media. Part of my job is social media for people with mobility impairment disabilities. It’s LifePossibleKR on Instagram and Facebook. It’s not just education and super strictly professional. You get to see glimpses into my life.

I let a lot of my personal life bleed over into those channels — maybe more than I should — because I want people to see that life with a disability or with a cancer diagnosis can still be such a beautiful thing.

I think that’s what you do with [a] tragedy. It’s the best way to handle it. And my cancer diagnosis as well. You can’t stop tragic things from happening, but you can definitely use them for good.

I was having a lot of UTIs. But when you [do] intermittent catheterizing, you kind of do so that was not a big, major warning sign.

Pre-diagnosis

Initial urothelial cancer symptoms

Because of my paralysis, I have to do intermittent catheterization to empty my bladder. I have to use a catheter five times a day and that’s just something that I don’t even think much about. [It’s] pretty routine but can cause infections.

Unbeknownst to me at the time and to a lot of people now, there are plastic softeners in catheters that have DEHP (di(2-ethylhexyl) phthalate) in them and that is, of course, a known carcinogen. It’s a combination of a foreign object repeatedly going in and out of your bladder and then the infections. I’m working now and advocating to get DEHP and other carcinogens out of catheters because we need to be able to eliminate that.

It was February. I had a cluster of kidney stones that I ended up in the hospital. One was obstructing and I had to have it removed. Once I healed from that down the road, he said, “There [are] some other stones in there that we’re going to have to deal with.”

Fast forward six months later, he did lithotripsy, where they use sound waves to hammer those stones from the outside of your body, and it “failed” because he said I moved. I was like, “Well, your nurse sedated me, so…” And I was like, “There should probably be a money-back guarantee. I feel like this is your fault.”

The lithotripsy failed. He said, “We’re going to have to go in in a few months and put a scope. I’m going to have to go in with a tool, cut these stones, and pull them out. I don’t want what happened last time to happen again where it obstructs and you could go septic.”

I was having a lot of UTIs. But when you [do] intermittent catheterizing, you kind of do so that was not a big, major warning sign. I didn’t have blood or anything yet.

He went in with that camera to remove the kidney stone and when he did, he saw the tumor. It was a high-grade urothelial cancer that he caught early. Stage 1.

I was lucky that it was not yet in the muscle and I don’t think they normally catch them on stage 1 because you can’t tell. You have to go into the bladder and look. Urine prevents from lighting up a tumor so unless you’re in there looking, you’re not going to see it.

I know how to roll with the punches when it comes to bad news, but I was in a fog.

Urothelial Cancer Diagnosis

After removing the kidney stone, he told my mom and [me] that he thought it probably was [bladder cancer].

When I went to the office, the nurse was coming to get the patient before me, but I could tell [by] the way she looked at me very empathetically. I was like, “Okay, I have cancer.” I felt like I knew before the words came out of his mouth.

But when he said high grade, I was like, “Got it. If I had to have it, [a] low grade would have been better.” I just had all kinds of probably stupid thoughts.

I didn’t cry. I have been through a lot. My husband died in 2016 and I raised teenagers by myself. I’ve always worked. My daughter had cancer as a kid. My mom went through cancer treatment. I know how to roll with the punches when it comes to bad news, but I was in a fog.

Treatment

I started doing my research right away. Being a social worker, I found [the] Bladder Cancer Advocacy Network. They have a podcast called Bladder Cancer Matters. I learned a ton from them and decided to start [treatment].

I love my doctor here, but MD Anderson had blue light cystoscopy and some other avenues if the BCG failed. For this type of cancer, BCG is immunotherapy. It’s actually the tuberculosis vaccine and it’s the most effective treatment.

There’s a shortage [and] I was afraid that I might not be able to get it in Baton Rouge so I started going to MD Anderson for the beginning part of treatment.

There’s still a shortage, but I haven’t had any trouble getting it. [At] MD Anderson, they were actually splitting doses though because the data was showing that a smaller amount was almost exactly the same efficacy. You had to wait for two other patients to split a dose.

It was very difficult driving back and forth to MD Anderson. And honestly, my doctor and I weren’t really seeing eye to eye.

Advocating for yourself is doing tons of research on your own.

The importance of advocating for yourself

Advocacy as a social worker has always been important to me. I knew the importance of advocating for myself, even when you’re at a cancer center of excellence.

My doctor is world-renowned and he’s got fellow student doctors following him around. But when it came down [to] getting the BCG treatment, [a] five-hour drive when you’re getting any kind of chemotherapy or immunotherapy is excruciating.

I decided to take a friend or family member with me [on] every trip and we’d spend one night, like a silver lining of having a cancer diagnosis. But with the trip being so hard on me, it really needed to be worth my time.

I got a cytology report back about six to nine months into treatment where it said that the cancer was back. It was a high-grade urothelial cancer with squamous cell changes and that’s not good news. I found that out on my chart. No one called me.

I couldn’t get my doctor on the phone. I would leave messages and he would have his PA (physician assistant) call back every time, even though I specifically request to speak to him.

He was going to put off another biopsy for four months because of some scheduling problem of his. I was like, “Highly unacceptable. Absolutely not waiting, sorry,” so I get the appointment moved up.

I wanted to speak with him. I’m like, “If this is true and we biopsy today or tomorrow and find out that it is a squamous cell change, what are the next steps?” He basically said, “You’ll need to have your bladder removed.”

Advocating for yourself is doing tons of research on your own. I was like, “From what I’ve read, that’s not the next step. There could be other next steps.”

I’m young. I was 53 at the time. I was like, “I’m not ready to have organs ripped out.” I didn’t drive all the way here for that.

He said, “There are two other patients of mine that didn’t have their bladder removed when I recommended it. I gave them a certain chemo and they’re both dead.” And I was like, “From chemo?” And he’s like, “Yeah.”

Then at some point, I was like, “What does bladder removal look like?” He’s like, “You’ll have to cath.” Heads up: I’ve been cathing for 35 years and if you didn’t read my chart… He didn’t want to come in to talk to me at all. But since he didn’t look at my chart, I was already kind of done with him.

The biopsy was scheduled. We had the biopsy. It was a false positive, so yay me. But I never went back to MD Anderson after that.

It was made very clear to me through the Bladder Cancer Advocacy Network that a good doctor is never offended by a second or third opinion.

How did you find another doctor?

I went back to my doctor [in Baton Rouge]. He trained at the Mayo Clinic and he leads the urology department here. Now, they didn’t have the blue light cystoscopy, but as I went on, I was like, “You know what? That may not be the most important thing here. At this point, [what’s important] are treatment options, somebody [who] cares about me, and actually [knows] me.”

He knows me and his nurse knows me. If I asked to speak to Dr. McCall or [if] there’s a bad lab result, Dr. McCall’s calling me. And he knows I cath. He has friends at Tulane or at LSU Medical School that are MD Anderson- and Mayo Clinic-trained, and that’s what you have to look at, too.

You may not have to go to the cancer center of excellence. There are physicians trained from those facilities that have all the same protocols and maybe more. Maybe they’re willing to do more.

What treatment did you undergo?

I’ve been going through BCG. I’m still going through BCG. I was diagnosed in October 2021. Made a year clear. We had that one scare, but it was a false positive.

I’m [at] the point where every six months, I get scoped and then I get another round of treatment. It’s a three-year thing with no gaps, but I got COVID. You can’t go when you have COVID. I didn’t have bad COVID and I was like, “Can I just hurry up and get treatment?” But you can’t.

I’ve got another scope coming up and another round of treatment, but I feel like it’s mostly in the rearview mirror. A few years but every six months, so it’s not nearly as disruptive.

The first round was six weeks in a row. I went to Houston every week for six weeks. Then you wait three months and you got treatment once a week for three weeks.

I work full time and I’ve got a lot of responsibility. I have three kids in their 20s. I’ve been a single mom for a long time, too, so every six months is like cake compared to what we’ve been through.

I go down the street and I get a full dose. They’re not splitting the dose here, which is nice.

You see how many people really love you that you don’t slow down normally to appreciate.

What challenges did you go through during urothelial cancer treatment?

I try not to put my whole life on hold during treatment and tried to incorporate as many fun things as my body could handle.

One of the best things was when I put it on Facebook, friends I hadn’t seen in 10-15 years reached out in the kindest ways. “I’m not working right now. Do you want a ride? Do you want me to ride with you or drive?”

I’m not one to take a bunch of help. I’m pretty stubbornly independent. But I was like, “Yeah, you know what? You want to go? Because I don’t know if I’m going to feel terrible on that ride home and I need to get back to work.”

I had met my now fiancé in June before the October diagnosis and we were in a long-distance relationship. He lives in Arlington, Tennessee, and I’m in Baton Rouge. We incorporated MD Anderson into our dating life. It’s not the most [ideal], but I didn’t want to not see him or not see my friends.

Now, I can look back and say you see how many people really love you that you don’t slow down normally to appreciate.

It’s a financial burden, especially if you’re trying to travel out of state for treatment.

I reached out to the MD Anderson social worker. They have all the resources. I found out there were programs that helped with hotel and/or mileage. But it does get expensive, especially if you’re missing some work.

My work [was] amazing. If I travel during the week for treatment, I could work at night [or] on the weekends. They were great.

Go straight to your type of cancer and find the advocacy network that’s most popular because they are armed with a ton of information.

Words of advice

When I got shot at 19, I realized that doctors are not omnipotent. Most of them start off with great intentions, but they don’t know everything. I learned that really fast being thrown into the medical world at such a young age.

Yes, there are many brilliant physicians out there and I admire them for persisting through medical school and all that. But every doctor doesn’t know everything.

In grad school, I learned about statistics, how to read a study, and to look for biases in the studies. If the study is done by a radiation oncology department, they may have a bias toward radiation. You have to look at the study and who did it. You have to find as much information as you can.

My daughter had cancer growing up and it was rare. Again, I had to fight a lot of fights. It was based [on] me being armed with as much knowledge as I could find.

Go straight to your type of cancer and find the advocacy network that’s most popular because they are armed with a ton of information. That’s how I found out about the BCG shortage and the standard of care for a high-grade urothelial noninvasive cancer. I would go straight to one of those advocacy networks.

Find a mentor. Find physicians [with] that specialty.

Ask a bunch of questions. I wanted to know the most effective course of treatment according to the data. I also wanted to know if this fails, then what’s next? What other options exist? And that obviously served me well down the road.

Who are the best physicians in the country? Can I get there? Can I afford to? Where could I stay to get a second opinion?

It was made very clear to me through the Bladder Cancer Advocacy Network that a good doctor is never offended by a second or third opinion.

When your tribe reaches out to help you, they want to help.

Trying to not take it on all yourself

For some people, that’s really hard. I happen to be one of them — wheelchair or no wheelchair.

When my mom moved in with me recently, she’s like, “Can I help you?” I usually say no. I’m like, “I got it.” But now, I started saying yes.

“What can I do?” I’m like, “You want to bring me a pizza?” When your tribe reaches out to help you, they want to help. Saying no is almost a disservice to your friend.

Resources to help with the financial burden of cancer

Social workers are the plethora of information. If they don’t have it, they will find it. I just reached out. That’s how I found everything that was available and where.

There are programs out there but no one’s going to present you with the welcome packet that says, “Here are all the things we have to offer.” It takes a little digging.

Whatever your particular diagnosis is, a lot of them have nonprofit organizations that have resources. If it’s a financial burden, you need to reach out to the facility and to your advocacy network.

Talk to people in the waiting room. They may have done it for years and really know the ropes.

Taking care of your mental health

Being a social worker, I would say [you] might require some counseling. You shouldn’t be afraid to reach out for that as well. See what benefits you have through work or other mentioned things.

Having a mentor through the Bladder Cancer Advocacy Network was really helpful because you get to hear other people’s stories. Honestly, I learned a lot in the waiting room from other people waiting for treatment.

Talk to people in the waiting room. They may have done it for years and really know the ropes. That was how I learned I could get the BCG in Baton Rouge probably, not from anyone else. My doctor mentioned it early on, but I was thinking the best thing for me was a cancer center of excellence.

Bad things are going to happen and all you can do is really make the best of it.

Staying positive

So much of being diagnosed and hearing that you have cancer is such a mental strain. Your brain goes to the worst places. Stay really positive throughout the whole thing. Sounds very cliché, I know.

A lot of how a diagnosis of any sort impacts you, you get to frame it however you choose. It takes a minute because you can die. That’s the first thing you think of. “I could die.”

There’s a lot of data to show the connection between a positive mental attitude and a good outcome. It’s not the cure-all, but it sure doesn’t hurt.

I am just bound and determined not to let life get me down. But, obviously, my fiancé, my children, my mom, and my friends, knowing that you’re really loved and appreciated.

A sense of humor. That was really important. That helps.

I’m not saying it’s easy. When I got shot, I said, “This is not fair. I’m a good girl.” I was a rule follower, scared to death of my parents, and just a good kid. My father said that fair was for games like Monopoly and that he never told me life was going to be fair. I was like, “Okay, well, that sucks.”

But it does put it in perspective, right? Bad things are going to happen and all you can do is really make the best of it.

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CLL Highlights from ASH 2022

Post author By Katrina Villareal
Post date March 2, 2023
3 Comments on CLL Highlights from ASH 2022

CLL: The Latest in Treatment and Research

What Patients and Caregivers Need to Know

Andrew Schorr

Chronic lymphocytic leukemia patient advocate Andrew Schorr has been living with CLL for 26 years.

In this conversation, he talks with hematologist-oncologist Dr. Nitin Jain from the MD Anderson Cance r Center who specializes in patients with CLL and ALL.

They discuss the latest treatment and developments in CLL coming out of ASH 2022, the annual meeting of the American Society of Hematology.

Dr. Nitin Jain

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

Table of Contents

BTK inhibitors: choosing the right drug for the right patient
Ibrutinib
Venetoclax + ibrutinib
The importance of getting an infusion vs. oral medications
What is the advantage of a third-generation BTK inhibitor?
New data on Richter’s Transformation
CAR T-cell therapy
Chronic Lymphocytic Leukemia Patient Stories

BTK inhibitors: choosing the right drug for the right patient

Andrew Schorr: With us is one of my favorite CLL researchers and experts, Dr. Nitin Jain, from MD Anderson.

Patients like me have lots of questions. We hope we can live a long, full life with CLL. You have more options than ever before.

One of the areas is BTK, Bruton tyrosine kinase inhibitors. We have Imbruvica, acalabrutinib or Calquence, [and] zanubrutinib that may be approved in CLL before long but is used in some other conditions. These drugs have made a big difference for people. What [do] we know about them now and how [do] you choose which one is right for which patient?

Dr. Jain: BTK inhibitors are oral drugs. They target a specific protein called BTK on the CLL cells.

The first one was ibrutinib. The second-generation ones are acalabrutinib and zanubrutinib. Zanubrutinib is not yet approved for CLL, but we are expecting it to be approved pretty soon, maybe in the next couple of months.

There’s a third-generation BTK inhibitor called pirtobrutinib, which is not yet FDA-approved, but it’s on track and there’s a lot of data presented about this drug.

Currently, FDA approved for CLL are two BTK inhibitors: ibrutinib and acalabrutinib. In terms of deciding which drug to choose between these two, for my patients, I really look at the efficacy and safety profile of these drugs.

There are a couple of trials done in patients with relapsed CLL, [those] who had prior therapy for their CLL then their disease came back. Half of the patients were given acalabrutinib [while the other] half of the patients were given ibrutinib.

What those studies showed is that those drugs were equally effective but acalabrutinib [had] less toxicity. Based on that and some other data, I preferentially [use] acalabrutinib these days as the BTK enabler of choice for my patients.

Again, that argument may change a bit when zanubrutinib comes [into] the picture, and certainly down the line when we get pirtobrutinib. That would be another exciting addition to the field of BTK inhibitors.

Andrew: Okay, so that’s really going to be physician and patient choice, it seems. They’re all good drugs.

Dr. Jain: It will come down to the physician, how comfortable they are using a particular drug for their patients, and the medical data and how they look at it.

I present all these options to my patients, discuss some of the clinical trial data and big picture view, give my recommendations to the patients for the treatment, and follow what their wishes are.

Andrew: Then also in this discussion is what other conditions a patient might have, right? Do they have a heart condition or other things that would determine which medicine you might go with, correct?

Dr. Jain: You’re absolutely correct. One of the things we [are] concerned about is the side effect profile. Some side effects are bone aches, muscle aches, diarrhea, and skin rash. [They] certainly can be an issue and some patients require dose reductions, especially for ibrutinib.

Some things are somewhat less common but can be more serious, such as atrial fibrillation, which is an abnormal rhythm of the heart, hypertension, which can become a problem for some patients, or bleeding issues.

If a patient has some of those medical conditions ongoing — heart issues, recent heart attack, or heart rhythm issues — then many times, I try to stay away from BTK inhibitors and use venetoclax, which is a Bcl-2 inhibitor. Among the BTK inhibitors, that will really make the case for second-generation agents, which are less toxic in terms of cardiovascular side effects.

Andrew: There’s data coming out related to zanubrutinib, not yet approved, but whether there are [fewer] concerns related to that for some patients, am I right?

Dr. Jain: Yes, correct. Similar to acalabrutinib, zanubrutinib was also studied head to head [compared] to ibrutinib in relapsed CLL. In that study, they showed that there was less atrial fibrillation with zanubrutinib compared with ibrutinib. That’s the first time two BTK inhibitors were compared head to head and they’re also showing that one is more efficacious than the first.

Ibrutinib

Andrew: Let’s just talk about the one that’s been around a long time: ibrutinib. There are thousands and thousands of patients on it. If they’re doing well, there is not necessarily a reason to change, right?

Dr. Jain: I agree with you and I think that’s a very important question from a patient standpoint. I get asked this question all the time in the clinic because ibrutinib certainly was the first drug [on] the market. It really changed how we manage these patients and really dramatically improved the outcomes of our patients.

But now, we are seeing some side effects of these drugs. There are patients who have been on ibrutinib for years and years — five years, seven years, nine years — and they are tolerating the drug well, [with] no side effects, [and] disease is well controlled.

I’m not switching those patients to a different agent at this time. We continue to use ibrutinib. However, if they’re starting [to get] side effects, then we look into moving to a different agent.

Andrew: There’s a significant percentage of CLL patients who are on watch and wait for an extended time. Is there any new thinking about doing anything differently now or is that still the standard in CLL?

Dr. Jain: As a CLL research group, we are investigating whether you can treat certain patients with CLL who are [at] high risk for disease progression early on, for example, patients who have deletion 17p and high-risk disease unmutated IGHV gene.

These are patients [who] we expect to progress a bit faster. Their time to treatment after CLL diagnosis is probably shorter than other patients with CLL.

There are ongoing randomized studies in the United States where patients with CLL are randomized. Either [they are treated] right away with venetoclax-based therapy or we watch these patients and whenever the disease progresses, which could be several years down the line, at that time, they receive venetoclax-based therapy.

That’s an ongoing and very important trial in the field. We’ll have to wait to get that medical data.

The current standard remains the same. We should watch these patients until they meet our CLL treatment criteria, which is basically having low blood counts, low hemoglobin, low platelets, big spleen, big liver, big lymph nodes, or significant symptoms from the disease affecting [their] quality of life. If you meet those criteria, then we treat [you].

Venetoclax + ibrutinib

Andrew: We talked about single-agent therapy with BTKs primarily, but you gave a presentation with longer data on ibrutinib plus venetoclax. Tell us about that and whether that combo has promise for people.

Dr. Jain: Both ibrutinib and venetoclax are FDA-approved for patients with CLL. Back in 2014, our group and many other groups showed data that combining these two drugs together is actually [more] synergistic for the two in the lab. Based on that, we started this clinical trial of combining ibrutinib plus venetoclax, two oral drugs together, for patients with CLL.

We treated 120 patients at MD Anderson. These patients have never received treatment so this is the first treatment for CLL.

Almost 70% of patients achieved MRD-negative remission in the bone marrow after getting these two oral drugs. We saw very few relapses over the course of four years. Our four-year progression-free survival was 94%.

The importance of getting an infusion vs. oral medications

Andrew: How important is it to get that infusion versus these oral medicines?

Dr. Jain: That’s an unanswered question in the CLL field right now. We know that the CD20 antibody infusion, whether it’s rituximab or obinutuzumab, works very well when we combine it with chemotherapy [and] also works very well when you combine venetoclax.

There is some conflicting data when you combine rituximab with ibrutinib; it doesn’t really work that well with ibrutinib. However, obinutuzumab, which is second-generation rituximab, works a bit better when you combine [it] with acalabrutinib.

Now when we combine ibrutinib plus venetoclax together, the two most potent drugs we have for CLL, we are already seeing very high rates of remissions.

The question is: can you improve that further by adding an antibody? This is the question of doublet versus triplet. Two drugs versus three drugs.

When we designed the study, we did not elect to use the antibody because we thought [that] antibody would add more toxicity than benefit. However, there are other medical data with triplets, which [have] been reported as well.

Right now, it’s very difficult to say because all these drugs are very, very effective regimens. Doublets versus triplets, it’s really difficult to tease out if one is better than the other.

There are ongoing randomized controlled trials where they are evaluating doublets versus triplets. I’m hoping we’ll hear from some of these trials in one to two years. Then we can have a more informed decision [about] whether you really need to have CD20 antibody when you’re using these two older drugs together.

What is the advantage of a third-generation BTK inhibitor?

Andrew: You’ve mentioned pirtobrutinib, which is a third-generation BTK in trials. What would be the advantage of a third generation? How would that be different?

Dr. Jain: Pirtobrutinib, previously called LOXO-305, is a third-generation BTK inhibitor. The main advantage here is that, unlike the first two generations of BTK inhibitors, namely ibrutinib, acalabrutinib, and zanubrutinib, they bind to a very specific protein pocket.

They bind to a residue called cysteine 481S, which attaches to these drugs. These patients, when they relapse, develop resistance mutations and then these drugs cannot bind to that pocket.

However, pirtobrutinib is a non-covalent inhibitor. It does not need that residue to bind. It just blocks the pocket. That’s why it’s able to work for patients who have failed ibrutinib, acalabrutinib, or zanubrutinib. That’s one advantage that pirtobrutinib can work against patients who have failed previous BTK inhibitors.

The second advantage is safety. We have seen [an] excellent safety profile of this drug with very few patients having atrial fibrillation, bleeding complications, or any other major issues. What we know so far is that this drug works very well and it’s also very well tolerated.

New data on Richter’s Transformation

Andrew: A small percentage of CLL patients develop a much more aggressive condition called Richter’s Transformation. Is there progress being made there? Any news that gives hope in treatment for Richter’s?

Dr. Jain: Richter’s Transformation remains a tough disease. We are working on several clinical trials looking at new pathways to control the disease, including immune checkpoint inhibitors using venetoclax. One was actually pirtobrutinib.

When you use this drug as a single agent for patients who had Richter’s Transformation, almost half of the patients respond to the treatment and the response lasted for several months. That is one important agent for patients with Richter’s Transformation.

There’s also this new class of drugs called bispecifics, which on one hand bind to a protein called CD20, which is on the cancer cells, the CLL cells, or Richter cells, and then on the other hand, they bind to a protein called CD3, which is on the T cells.

What they do is bring the cancer cell and the T cells together. That has been shown in several trials to be very effective in diffuse large B-cell lymphoma. There is data presented [on] clinical activity for patients with Richter’s Transformation as well.

Those are two important classes of drugs being pursued [in] clinical trials.

The third one is CAR T-cell therapy that also several studies have started to evaluate for Richter’s Transformation, but no specific medical data was reported.

Andrew: Okay, let’s pull all this together. People are still in watch and wait, and that’s fine if their quality of life is not diminished, their blood counts are strong, etc. But when they move on to treatment now, it seems like there’s a discussion about which BTK might be right for them and whether or not they should consider BTK, still investigational, with a second drug like venetoclax. Is that correct?

Dr. Jain: Yes, correct. Absolutely.

Andrew: You have this whole line of tools that we haven’t had for that long and for people with aggressive transformation, there seems to be a glimmer of hope as well. If you had a new patient today, would you say that the likelihood is they can probably live a long and full life? You have medicines that may not cure the CLL — although sometimes you feel CLL is cured — but they can live long and live well.

Dr. Jain: Oh, absolutely. That’s exactly what I tell my patients these days, especially patients who are newly diagnosed. [When] they come for the first visit, obviously, [there are] a lot of questions in their mind. Hopefully, all patients with CLL can expect to live a normal lifespan with good quality of life.

We have excellent medicines for patients right now and the field is improving. [We have] other important, better medications, safer medications, immune therapies, [and] CAR T-cell therapies coming down the line.

I really, truly believe that we’ll be able to have patients with CLL have a normal lifespan. An important point is that you don’t need [a] cure to live a normal lifespan in the context of CLL.

You could have a small amount of disease present, but if it’s not interfering with your quality of life, your blood counts, your health, [and] what you do in your life, you can just continue to live with a very low level of the CLL.

Overall, we’re in very, very good shape in terms of the treatment paradigm for CLL patients. We’re all making really good progress.

CAR T-cell therapy

Andrew: I know CLL patients who’ve had CAR T-cell therapy. It is not yet approved. What is the future of chimeric antigen receptor T-cell therapy for CLL? It’s approved in some other blood cancers, but not yet in CLL.

Dr. Jain: I think this is one of the biggest advances in the last few years, I would say, in the context of blood cancers. It’s not approved for CLL, but [for] lymphomas, leukemias, [and] myeloma.

The field has somewhat lagged behind and we don’t have much clinical data yet. There are [a] few trials, which have been reported, but not very many.

There’s a lot of interest and discussion in general with investigators to develop CLL-specific clinical trials with some new constructs.

CAR T-cell therapy is very dependent on what kind of genes are inside of the CAR so it’s very technologically heavy where even small changes in what gene you insert can make big differences [in] how patients do. There’s a lot of effort happening [on] the lab side to draw up new constructs, which specifically could work for patients with CLL, also for patients with Richter’s Transformation.

That’s an area where I think many more clinical trials will come. In one to two years, I think we’ll have somewhat more clarity of the data in terms of CAR T-cell therapy for patients with CLL as well as for Richter’s Transformation.

Andrew: Okay. What you’re touching on is: can we get the immune system to fight the CLL and do it long term, correct?

Dr. Jain: Correct. From [the] chemoimmunotherapy era to target therapy era, now we are asking our immune system to dress [for] the job and take care of stuff.

Immune therapy works very well for melanoma, for solid tumors. So can we use our immune cells to help get rid of the CLL?

Andrew: It sounds like a great time of progress for those of us living with CLL. With the current therapies, some that may be approved even in the short-term, combinations, and then this work going on in immune therapy that’s happened in some other areas and where this pays off for us.

Dr. Jain, thank you so much for being with us on The Patient Story. We wish you well with your research and your clinical care of patients at MD Anderson.

Dr. Nitin Jain: Thank you.

Chronic Lymphocytic Leukemia Patient Stories

Susan K.

Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Venetoclax & obinutuzumab

Hannah D.

1st Symptoms: fatigue, high WBC

Treatment: Imbruvica, Venetoclax

Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Jeff F.

1st Symptoms: Fatigue and night sweats

Treatment: Clinical trial of ofatumumab

Leesa T.

1st Symptoms: Bruising

Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)

Michele N.

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

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

Tamsin W.

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

Bill M.

1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen
Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37

Stephen B.

1st symptoms: difficulty swallowing and fatigue
Treatment: Rituxan, Bendamustine, targeted therapy BTK inhibitor (ibrutinib)

Sean R.

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

Lacey B.

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

Tony D.

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

Tags ASH 2022, CLL article

Leukemia & Lymphoma Medical Experts Medical Update Article

DLBCL: The Latest in Treatment and Research

Post author By Katrina Villareal
Post date February 22, 2023
1 Comment on DLBCL: The Latest in Treatment and Research

DLBCL: The Latest in Treatment and Research

What Patients and Caregivers Need to Know

Dr. Josh Brody — Dr. Joshua Brody
Mount Sinai

Robyn, a three-time DLBCL survivor, and two top lymphoma specialists, Dr. Tycel Phillips from the City of Hope and Dr. Joshua Brody from Mount Sinai, discuss the latest DLBCL treatments and developments happening in the most common subtype of non-Hodgkin lymphoma: diffuse large B-cell lymphoma (DLBCL).

Brought to you in partnership with The Leukemia & Lymphoma Society and its Clinical Trial Support Center.

Thank you to Genmab and AbbVie for their support of our patient education program! The Patient Story retains full editorial control over all content.

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

Table of Contents

Introduction
What is DLBCL? What is the standard care for first-line treatment?
Bringing up different treatment options with your hematologist-oncologist
What is CAR T-cell therapy?
Benefits and challenges of CAR T-cell therapy
CAR T-cell therapy for refractory patients?
What are bispecific antibodies?
What is the comparison between epcoritamab and glofitamab?
Side effects from bispecific antibodies
CAR T or bispecifics for relapsed/refractory patients?
Clinical trials
DLBCL Patient Stories

DLBCL, diffuse large B-cell lymphoma, is the highest incident lymphoma in America. Every year, about 90,000 people [are] diagnosed with lymphoma [and] about 25,000 of those are diffuse large B-cell lymphoma.

Dr. Josh Brody

Introduction

Stephanie Chuang, The Patient Story: I went through non-Hodgkin lymphoma treatment back in 2017 so this is a topic that’s very near and dear to me. My own experience as a cancer patient is what motivated me to start something to really help humanize the cancer experience for those of us who don’t have a science background. That was the genesis of The Patient Story.

We reach cancer patients, care partners, [and] caregivers with content; mostly in-depth stories. We also highlight conversations with specialists in the field.

The goal is to humanize cancer. What does that mean? It means you’re not alone and here’s some information we hope will be helpful.

Our partner, The Leukemia and Lymphoma Society (LLS), has done incredible work in terms of research and community. The LLS also has a clinical trial support center. It’s a free service where patients can get one-on-one support with a LLS Clinical Trial Nurse Navigator, who will personally assist you throughout the entire clinical trial process.

The focus in this webinar, is the latest in DLBCL treatments and research. We have three doctors: two lymphoma specialists and one who is a three-time DLBCL survivor.

Dr. Joshua Brody is from Mount Sinai and Dr. Tycel Phillips is from [the] City of Hope. Robyn spent years on the medical side, started off [as a] radiologist seeing patients, and then became a patient [herself].

What is DLBCL? What is the standard care for first-line treatment?

Stephanie, TPS: Let’s set the stage. We hear about DLBCL a lot. Dr. Brody, what is DLBCL and what is the standard care for first-line treatment?

Dr. Josh Brody: DLBCL, diffuse large B-cell lymphoma, is the highest incident lymphoma in America. Every year, about 90,000 people [are] diagnosed with lymphoma [and] about 25,000 of those are diffuse large B-cell lymphoma.

We have about 84 types of lymphoma. People say, “Wait, do I have the good one or not?” It’s not just two types. It’s not the good one and the bad one. We divide these lymphomas into many ways so we don’t have to memorize a list of 84 things.

The first way we divide them is Hodgkin’s and non-Hodgkin’s. We are talking about non-Hodgkin’s lymphoma. We divide non-Hodgkin’s lymphoma into B-cell and T-cell lymphomas. We’re talking about B-cell lymphoma. Then we sometimes divide B-cell lymphomas into low-grade versus aggressive. Low grade, these grow very slowly: follicular lymphoma, marginal zone lymphoma, [and] some others. The aggressive lymphomas, diffuse large B-cell [is] the most common of them. Maybe you’ve heard of Burkitt lymphoma, mantle cell lymphoma, [and] some of these other things that can grow more quickly.

We’re so lucky because the treatments for lymphoma have evolved more rapidly than for any other cancer in the world. Even though we are the fifth most common cancer, we have more FDA-approved medicines than any other cancer. The reason is [that], thankfully, the progress has been very rapid. We don’t get FDA-approved medicines without progress to prove that those therapies can be pretty good.

Over the past 20 years, the standard therapies for diffuse large B-cell lymphoma [are] these alphabet recipes. R-CHOP sounds a little aggressive and it is, as Robyn can tell you. People that are working full-time before R-CHOP are frequently working part-time during R-CHOP so it’s aggressive enough that it affects your life in a real way. It affects your hair.

R-CHOP is not the most aggressive stuff we have. It is standard therapy. Today, it may not be the only standard front-line therapy. There are a couple of slightly new versions of R-CHOP that are options now. I will say that five years from now, I don’t think R-CHOP will be the standard. I think we’ll even have some better things.

The R [is] rituximab. It is immunotherapy — targeting lymphoma using your immune system to kill those lymphoma cells, but not powerful enough by itself. The P is prednisone. The CHO is chemotherapy.

All the side effects you’ve heard about with chemotherapy — hair falling out, a little bit of nausea — not so bad, but it’s a real thing and some of these other side effects you heard about.

R-CHOP, thankfully, cures about 60% of people with DLBCL — not every type of DLBCL, but overall. That’s pretty good. We’re lucky to be able to cure 60%. Not that lucky if you’re in the other 40, though, as Robyn or lots of our patients could tell you.

We actually have a lot of progress and probably still some curative things. A lot of progress, more so than probably any other cancer, and yet a lot of room for improvement still.

The treatments for lymphoma have evolved more rapidly than for any other cancer in the world. Even though we are the fifth most common cancer, we have more FDA-approved medicines than any other cancer.

Dr. Brody

Stephanie, TPS: I do want to ask Dr. Phillips to lay out the options. If somebody relapses in the first six [or] 12 months, how different is that prognosis or treatment?

Dr. Tycel Phillips: For patients who do not respond to R-CHOP and immediately relapse — what we consider primary refractory patients and that likely extends out at least into the first six months — those patients have done very poorly historically with a lot of the standard options that we have, like RICE, which are just various combinations of chemotherapy drugs. Hopefully, not cross-resistant to each other [and] provide a different mechanism of action compared to the drugs using CHOP with rituximab as well, with the goal of getting them to autologous stem cell transplantation.

Again, historically, that group has done fairly poorly because they are probably chemo-resistant. They’re not going to respond to any sort of chemotherapy drug. The whole design of chemotherapy is to prevent DNA replication or cause DNA damage at some point during the replication cycle. If a cancer drug has figured out a way to get past one, it’s likely to figure out a way to get past most of the rest.

An auto transplant really should be named an autologous stem cell rescue because it’s still just more chemo. It’s not anything fancy about the stem cells that you’re getting back there, just your own stem cells to rescue your body.

For the most part, a lot of the clinical trials that help these relapsed/refractory regimens are probably heavily dependent on these relapse patients, which are generally the patients who relapse a year or so after chemotherapy.

These are the reasons why we get the response rates for most of these regimens, such as RICE, DHAP, and the big CORAL study, which was a big regimen looking at these relapsed/refractory regimens to see which one was better. They’re really probably driven by refractory patients again because these are relapse patients. These refractory patients are not the ones that are going to drive these studies.

A lot of big emphasis recently has been on other ways to treat these patients, especially these early refractory patients or patients who relapse within six months to a year with other regimens besides chemotherapy, which brings into the CAR T discussion.

For patients who can’t get to CAR T or who are ineligible for CAR T, in the second-line setting beyond chemotherapy, there is lenalidomide and tafasitamab, which are for patients who are ineligible for autologous stem cell transplantation. That regimen itself, at least from the clinical trial, seems to be more effective in those who have only received one line of therapy versus those who are heavily pre-treated, meaning they have two or more prior lines of therapy before [receiving] this drug.

In that second-line setting, there aren’t a ton of other agents approved, even though we have options such as polatuzumab-bendamustine-rituximab. We are a bit hesitant to use that regimen in some sense because the bendamustine does cause quite a bit of depletion of your immune system, specifically T cells. The T-cell depletion can be quite profound and prolonged, which can hamper things that depend on T cells to be effective, like CAR T, etc.

There also is a new agent recently, which is a CD19 drug antibody conjugate called loncastuximab, which has a very different drug attached to it, which is a little bit different from MMAE, our usual antibody drug target. That is also another option.

Then there is selinexor, which is [an] export one inhibitor [that] was approved [for] this patient population, but probably has very little uptake because of the toxicity of the agent.

If we’re looking at currently approved agents, the chemo or the regimens I just mentioned are the currently only approved ones outside of CAR T at this point.

A lot of big emphasis recently has been on other ways to treat these patients, especially these early refractory patients or patients who relapse within six months to a year with other regimens besides chemotherapy, which brings into the CAR T discussion.

Dr. Tycel Phillips

Bringing up different treatment options with your hematologist-oncologist

Stephanie, TPS: Robyn, you’ve been through a lot: different kinds of chemo, chemoimmunotherapy regimens, auto stem cell transplant, and eventually CAR T. It sounds like you were the one who researched CAR T. How did you bring up the discussion of CAR T with your hematologist-oncologist? What were the differences for you in terms of going through the stem cell transplant and then going through CAR T?

Robyn: Overall, I did extremely well. The auto stem cell transplant was extremely difficult for me. I was very, very sick. [It was a] terrible experience. I did survive. I’m here, but I didn’t want to go through that again.

When the auto stem cell transplant failed, I did not want to go through an allo (allogeneic) transplant.

I’d gone online. There’s a site called www.clinicaltrials.gov. Anybody can get online. I really had no advantage being a doctor except that I had heard about the site so I had started looking at different trials. My husband, who’s an engineer, and I both looked at all these different trials and emailed investigators when I relapsed. We just tried to find a space and a trial.

I just thought that was the right decision for me. It was not recommended by my oncologist. [As] a matter of fact, my oncologist thought that I should go ahead and have an allo transplant using my son as a donor, as a haplo (haploidentical) and I didn’t want to do that.

I looked at it on my own. Nowadays, things are very different. In 2016, there was only one phase 1 clinical trial for Kymriah, which is what I had. I based my decision on 26 patients and 12 went into remission, which is not a big number. My oncologists were not comfortable with that, but somehow, I felt that was the right decision for me. Everyone is unique.

I did get different opinions from other oncologists. I was a very complex case. I was a younger patient who was healthy. But I was so sick during the stem cell transplant with septic shock and that helped determine what I decided to do.

Everyone is unique and it’s a big decision, but I wanted to live my life and not have the risk of graft versus host disease, which could actually limit the enjoyment of life and so that was also within my decision.

I just thought that [CAR T] was the right decision for me. It was not recommended by my oncologist. [As] a matter of fact, my oncologist thought that I should go ahead and have an allo transplant using my son as a donor, as a haplo (haploidentical) and I didn’t want to do that.

Robyn S.

Stephanie, TPS: It’s a great example of this equation. For everybody, it’s a different equation in terms of what you weigh more heavily. Is it how long you think you can get more out of life in terms of survival or is it quality of life?

Drs. Brody and Phillips, I know that this happened back in 2016 so it’s a very different landscape than now. But anything you want to add in terms of the decision-making or talking about this with a patient?

Dr. Phillips: She highlighted a very important dilemma we have. The decision for an allo transplant is probably very controversial amongst lymphoma doctors. You have some people who are very beholden to it and others who probably would never send a patient for an allo transplant based on what Robyn has already mentioned. The simple fact of the risk of graft versus host disease, finding an appropriate donor, and, with lymphoma, actually making sure the cancer is in remission before you get to an allo.

I wish we had a better system to illustrate clinical trials throughout the US. I don’t think we still have a great system, even in 2023. A lot of us depend on clinicaltrials.gov or word of mouth versus having a good system where any patient can just plug in their disease and we pop up all these studies and trials that are actually active and open.

That’s the thing about clinicaltrials.gov. Just because they list sites doesn’t necessarily mean those sites are actually up and active, which I think a lot of people don’t realize.

Dr. Brody: I agree with everything Tycel said. Robyn was either lucky or prescient or maybe a combination because in retrospect, if it was me, CAR T versus allo transplant, it would be a no-brainer.

We now have randomized trials comparing CAR T to autologous transplants for those that relapse quickly, 12 months after front-line therapy. CAR T is probably both more effective and kinder with less of those toxicities. CAR T can be toxic, but overall, head to head, I would probably rather get a CAR T-cell therapy than an autologous transplant. I think most people would probably agree.

It’s tricky. If you’re a specialist, you think that’s the way to go. A transplant doctor will say, “Yeah, we could do [a] transplant.” It’s the same with clinical trials. If you’re a doctor that doesn’t focus on clinical trials, you won’t think of that. It won’t come to mind.

Robyn is one of these rare people that can advocate very well for herself. You do need doctors sometimes to be able to help advocate for you.

The last time we looked, 25 to 30% of patients that are eligible are getting CAR T. That means the vast majority of patients are not getting CAR T.

Dr. Brody

What is CAR T-cell therapy?

Stephanie, TPS: I love that, Dr. Brody, thank you.

Let’s talk about CAR T more in depth. What exactly is CAR T-cell therapy and what does it entail in terms of how people actually go through it?

Dr. Brody: We take a little bit of a person’s immune system, some immune cells from their blood. They literally do gene therapy on your immune cells. They put a new gene into your immune cells and when we put [them] back into you, that gene allows those immune cells to go find lymphoma and then kill lymphoma.

Humans have about 20,000 genes. This gene that they stick into those immune cells is not one of those 20,000. It’s amalgamated from five other genes put together into one gene. That gene is called CAR, a chimeric antigen receptor. You get FluCy (fludarabine and cyclophosphamide) chemo and then we re-infuse the CAR T cells.

A few years ago, we would say folks with multiple-relapsed DLBCL didn’t have curative options just like patients with metastatic breast cancer. In those patients, we would say the CAR T-cells might cure 35 to 40% of patients. Going from what we call 0% to 40% sounds like it’s miraculous. Not 100% so still a lot of room for improvement. The efficacy is very impressive, miraculously impressive, but it’s not benign therapy.

There is this risk of side effects and probably 20% of people get some of these high-grade side effects. The most commonly discussed one [is] cytokine release syndrome, CRS. It’s like having a terrible infection, but there’s actually no bacteria [or] virus infecting you and people can land in the intensive care unit because of that.

Another one [is] neurotoxicity [or] ICANS (immune effector cell-associated neurotoxicity syndrome). It can literally be a type of encephalopathy. People can start hallucinating [or] become unconscious. It can be dangerous.

These high-grade toxicities might happen in up to one in five patients. Even if it doesn’t happen in the other four out of five, we don’t know which one in five is it going to happen [to] because we have to monitor all of those patients very closely, usually in the hospital.

The last time we looked, 25 to 30% of patients that are eligible are getting CAR T. That means the vast majority of patients are not getting CAR T.

Dr. Phillips

Benefits and challenges of CAR T-cell therapy

Stephanie, TPS: With that being said, Dr. Phillips, if you could just touch on the benefits and the challenges?

Dr. Phillips: The biggest excitement is that we’ve been all talking about immunotherapy for decades and here we are with a true immunotherapy with a much better and manageable safety profile than what we typically would see with an allogeneic stem cell transplantation.

The uptake of CAR T is not what it should be. The last time we looked, 25 to 30% of patients that are eligible are getting CAR T. That means the vast majority of patients are not getting CAR T due to access issues, meaning they can’t get to a CAR T center, or they don’t have anybody that needs to be there with them or relocate to a center for a month to get CAR T.

These are all logistical challenges that we are trying to fix and overcome along the way, but it’s not been necessarily the easiest thing to get over because these patients will need caregivers, especially as we’re trying to move CAR T to an outpatient setting. They have to have somebody that can take care of them.

Financially, I don’t think CAR T is going to be feasible moving forward where, originally, patients are hospitalized for 30 days. Unfortunately, payers aren’t going to pay for that and hospitals can’t [foot] the bill for that any longer.

They do need some support to help take care of them, which is not unfortunately dissimilar to what we see with transplant patients. The hope is that requirement may ease for some patients who aren’t necessarily going through complications. But right now, unfortunately, it is a requirement in most centers that they have somebody to take care of them.

CAR T-cell therapy for refractory patients?

Stephanie, TPS: [With] refractory patients, [they undergo] different treatments [and] there’s no response. It’s not [that] you were in remission and then you relapsed. It just didn’t respond. When would you consider CAR T for someone in that position?

Dr. Phillips: Thankfully, now, in second-line. That generally would be the immediate treatment at this point, unless there’s some reason that they can’t get CAR T.

Those patients should be the patients we get to CAR T because we already have two studies that have demonstrated that CAR T was superior to autologous stem cell transplantation with both axi-cel and liso-cel in this patient population. This is the ideal patient population for CAR T.

The key thing with bispecifics, at least from what we can see from the early stages, is that they appear to be effective in patients with relapsed/refractory diffuse large B-cell lymphoma.

Dr. Phillips

What are bispecific antibodies?

Stephanie, TPS: Wonderful. Now let’s get into bispecific antibodies. Dr. Phillips, what are bispecifics?

Dr. Phillips: The easiest way to think about bispecifics is like [an] off-the-shelf CAR T product. It still works to utilize your own T cells to fight off cancer, but instead of the manufacturing process, it basically administers an antibody that will bind to some marker in your cancer, bind to your T cell, which will force an interaction between the two, [and] lead to T-cell activation and [hopefully] some sort of T-cell expansion, growth, etc.

These antibodies, at least the CD20/CD3s and some of the newer CD19/CD3s, are a bit better than what we have with blinatumomab, which was given as a continuous infusion, by allowing those Fc portions and just muting them to be still intact to the antibodies. They have a much longer half-life so these things can be administered more conveniently.

If we look at the agents that we have that will likely get approval, we have mosunetuzumab, which is approved for follicular lymphoma. [This] is given as a step-up dosing once a week until you get to [a] full dose and then once you reach full dose, given every three weeks for either eight or 17 cycles.

We have epcoritamab, which will likely get approval for diffuse large B-cell lymphoma. Again, given in a step-up dosing every three weeks, but will continue weekly through the first three cycles and biweekly from cycles four through nine, and then once a month indefinitely.

Then glofitamab, which is another CD20/CD3 bispecific antibody given in step-up dosing. This one is given with a pre-medication obinutuzumab to help reduce the risk of CRS, which is still prevalent because it’s a T cell-directed therapy, and then given once every three weeks thereafter. This one is also given for a fixed dose of just 12 cycles.

Then we have odronextamab [and] plamotamab in the pipeline of other bispecific antibodies and there are many more coming down the line.

The key thing with bispecifics, at least from what we can see from the early stages, is that they appear to be effective in patients with relapsed/refractory diffuse large B-cell lymphoma. Some studies have shown that they are effective in patients post-CAR T. The question that we’ll get into later is: which post-CAR T patient is actually a patient that’s going to respond to a bispecific?

The same side effects exist. CRS occurs, probably not to the severity and intensity [that] we see with CAR T and the management strategy will probably end up being a bit different. There is ICANS or neurological toxicity. Again, not to the degree of severity that we see with CAR T but still present.

A lot of community physicians and patients will get first-hand experience, good or bad, with these bispecifics and, hopefully, more guidance will get out there for how to best manage some of these events because a lot of these physicians haven’t dealt with this.

In a couple of years, hopefully, as more and more physicians get comfortable with these drugs, they’ll get more access to patients and they’ll be more comfortable managing the side effects. This will probably have a bigger catchment area just because of [fewer] restrictions on these drugs than what we see with really CAR T at this point.

We don’t want to confuse complete remission with cure. Just because we can’t see any cancer doesn’t mean there might not be a little bit left.

Dr. Brody

What is the comparison between epcoritamab and glofitamab?

Stephanie, TPS: Dr. Philips does a great summary of a huge space so [I] appreciate that. It sounds like, for DLBCL in particular, there are two that are a little bit more advanced in the studies than the rest although there are many that we should be watching out for. Dr. Brody, between epcoritamab and glofitamab, anything you see with the response so far [in] the clinical trials?

Dr. Brody: Overall, these two are much more similar than different.

They’ve been in many hundreds of patients. They focused on a trial of about 150 patients each and both had complete remission rates of about 39%, 39.4% for both of them so that’s pretty similar. Again, just under 40% of people. The tumor melts and disappears so that we cannot even see it on a PET scan or a CT scan.

We don’t want to confuse complete remission with cure. Just because we can’t see any cancer doesn’t mean there might not be a little bit left. But it does seem like a lot of these complete remissions are very durable [and] very long-lasting.

We definitely have patients in complete remission from these therapies for more than two years. We don’t have five years yet because these medicines haven’t been around for five years. But if a person stays in complete remission for two years, the chance of being cured seems to get pretty good. That’s true for many therapies, certainly for CAR T and for other therapies.

One little difference between them is the way they are administered. Epcoritamab is given as a subcutaneous shot, just a shot under the skin, so pretty quick. Glofitamab is given as an infusion. The first infusion is eight hours. Later on, it becomes four hours and two hours. A little bit more time intensive there, but not too bad. Maybe that’s a point in favor of epcoritamab.

I’ll give a point in favor of glofitamab, to be fair. The glofitamab studies are mostly designed to be time-limited. You get 12 cycles, about nine months of glofitamab, and then you just stop the therapy and you’re in complete remission. We just keep an eye on you. If you were to relapse, you could get more of it, but if you’re in complete remission, we just stop giving the therapy. That’s just how they were designed so we don’t have to give it forever.

The epcoritamab studies have been designed to just keep going. As long as the person is in remission and doing well, just keep giving it.

It’s hard to say which one is better [or] worse. I find half of my patients like the idea of, “Yeah, give me a break. I’ve been through a lot,” and [the other] half say, “I don’t know. I kind of want to keep getting this therapy.” We don’t know which one is right or wrong. Some people see the benefit of time-limited therapies. They don’t have to keep coming to the doctor as frequently.

Maybe a little bit of benefit of one over the other in both directions but, overall, more similar than different, [with] remarkable efficacy, and much easier to use than CAR T cells.

If I do not have a caregiver and someone’s recommending CAR T, what kind of options come up there? [The] one-word answer is bispecifics.

Conceptually, it’s the same possible side effects, but, thankfully, we’ve mostly just seen much less of them and lower-grade versions of them.

Dr. Brody

Side effects from bispecific antibodies

Stephanie, TPS: Assuming bispecifics are approved and it’s not being used as a clinical trial for somebody, what about the side effects, Dr. Brody? Dr. Phillips did [mention] CRS seems to be [a] lower grade in bispecifics as opposed to CAR T. Anything else?

Dr. Brody: As Tycel said, conceptually, it’s the same possible side effects, but, thankfully, we’ve mostly just seen much less of them and lower-grade versions of them.

The average CAR T-cell patient today is sometimes still spending 11 days in the hospital just for observation, whereas the average bispecific antibody patient usually spends one day in the hospital. Even though the vast majority of them don’t get any of those side effects, at the moment, we have to still observe them all just to make sure that we don’t miss the one out of ten that gets the bad side effect.

For DLBCL, the plan with most bispecifics still is at least one day of observation. Probably about 5% can get the high-grade version of CRS and much less than 5% get neurotoxicity. Rare, but it can happen and, therefore, requires a bit of monitoring.

If I have access to both, if I can’t get CAR T, then ideally, a bispecific is good in that situation.

Dr. Phillips

Statistically, you would want to get both.

Dr. Brody

CAR T or bispecifics for relapsed/refractory patients?

Stephanie, TPS: How do you consider which one to go to first for relapsed/refractory patients? What are the considerations?

Dr. Phillips: CAR T has the more definitive data so if you have access to both, you’re hard-pressed to put a bispecific before CAR T at this current date. I would say CAR T then bispecific thereafter, pending the response to the patient with CAR T.

If the patient has no response to CAR T, I have very little faith that they will have a response to a bispecific. We’d feel much, much [more] comfortable if a patient had some sort of response to CAR T [and] then lost it to try to resurrect that response with the bispecific.

But if I have access to both, if I can’t get CAR T, then ideally, a bispecific is good in that situation.

Dr. Brody: It’s actually less of a question of which is better, CAR T [or] bispecifics, because, frustratingly, for all the advances that we’re bragging about, the numbers are that the majority of patients are not cured by either.

Statistically, you would want to get both. You’d want to have the option to get both. As Tycel just said, if you get CAR T today and they fail 30 days from now, quite honestly, you probably won’t be able to get bispecifics because there [are] no trials that allow rapid failing CAR T patients to get access to bispecifics.

We’ve done the opposite in our patients quite a bit where they’ve got bispecific [and] if they stayed in complete remission, they kept going. But we had a few where they progressed eventually and we gave them CAR T-cells.

In a lot of cases, clinical trials are some of the best medical care that you’re going to receive.

Robyn S.

Clinical trials

Stephanie, TPS: I like that we’re comprehensive about this. We could talk about clinical trials really quickly because I think there’s a lot of misunderstanding. Robyn, you went through a clinical trial. Anything you want to say from the patient’s perspective? I think people think there’s a placebo or I’m going to be in an experiment and there’s a lot of fear. What would you like to tell people about your actual experience with a clinical trial?

Robyn: As a patient and also as a physician, it’s important that people realize that in a lot of cases, clinical trials are some of the best medical care that you’re going to receive. They’re cutting-edge. It is often the way to go in unusual cancers or some other diseases that can’t be controlled by anything else.

Dr. Phillips: That’s the thing people need to remember. It’s not guinea pigs. This is how we advance the field, especially in diseases without [a] standard of care. This is really your chance to get something that could potentially be life-saving. More people should be offered clinical trials.

Robyn: Keep your options open. Keep your mind open. Do some research. Read.

In this case, this is a blood cancer group. Talk to LLS if you’ve relapsed. See what their opinions are and get several opinions.

Be your own advocate. Physicians don’t agree on things, [which] doesn’t make somebody wrong or right. It’s a process. Science is not exact. It’s not black and white so you need to figure out what’s right for you. Do your research and don’t be afraid because a clinical trial might be the solution for you.

Stephanie, TPS: Thank you, Dr. Tycel Phillips, Dr. Joshua Brody, and Robyn. Thank you so much for making this such an enjoyable conversation about what could be very overwhelming.

Be your own advocate. Physicians don’t agree on things, [which] doesn’t make somebody wrong or right… You need to figure out what’s right for you.

Robyn S.

For FREE 1:1 support to enroll in and stay in a clinical trial, check our The Patient Story’s partner organization in the program, The Leukemia & Lymphoma Society, and its Clinical Trial Support Center!

Here is a direct link to a form to fill out – and someone from The LLS will reach out after.

Thank you to Genmab and AbbVie for their support of our patient education program! The Patient Story retains full editorial control over all content.

DLBCL Patient Stories

Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1

Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation

Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4

Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)

Harriet C., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Cancer Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Weight loss, difficulty walking, stomach pain, feeling unwell Treatment: Chemotherapy, EPOCH, methotrexate

Sammie F., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Cancer Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Chest pain, back pain, bump on neck, night sweats Treatment: Chemotherapy, CAR T-Cell therapy

Alesia A., Diffuse Large B-Cell Lymphoma (DLBCL) Cancer Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Fatigue, shortness of breath, swelling, night sweats, anxiety Treatment: Chemotherapy

Tony W., Relapsed T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL)

1st Symptoms: A lot of effort needed cycling, body wasn’t responding the same; leg swelling
Treatment: R-CHOP chemotherapy, CAR T-cell therapy

Jonathan S., Diffuse Large B-Cell (DLBCL), Stage 4

1st Symptoms: Severe shoulder pain
Treatment: 6 rounds of R-CHOP chemotherapy, 10 rounds of methotrexate, 12 rounds of focal radiation, autologous stem cell transplant

Leanne T., Follicular Lymphoma Transformed to DLBCL, Stage 3B

1st Symptoms: Fatigue, persistent cough
Treatment: R-CHOP chemotherapy, 6 rounds

Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4

Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy

Stephanie Chuang

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

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

1st Symptoms: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy

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

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

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

1st Symptoms: Abdomen and gastric pain

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

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

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

Treatment: Chemotherapy R-CHOP and methotrexate

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

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

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL

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

Shahzad B., Refractory Diffuse Large B-Cell (DLBCL), Stage 4

1st Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
FDA approved: October 2017

Erin R., DLBCL & Burkitt Lymphoma, Stage 4

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

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

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

Tags ASH 2022

Medical Experts Medical Update Article Myeloma

High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022

Post author By Katrina Villareal
Post date February 18, 2023
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High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022

What Newly Diagnosed Patients and Caregivers Need to Know

Jack Aiello

Multiple myeloma patient advocate Jack Aiello has been living with myeloma for 28 years.

In this conversation, he speaks with Dr. Shaji Kumar, a hematologist at the Mayo Clinic whose research focuses on the development of novel drugs for the treatment of myeloma.

They discuss the difference between smoldering myeloma and active myeloma, the determining factors of high-risk patients, and what high-risk smoldering patients can do to delay or possibly avoid progression to active myeloma.

Dr. Shaji Kumar

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

Table of Contents

Introduction
What is smoldering multiple myeloma?
The difference between smoldering myeloma & multiple myeloma
What is the ASCENT trial?
How long until SMM patients are cured?
Are there still trials open for high-risk smoldering patients?
Asking your doctors about clinical trials (high-risk smoldering patients)
Conclusion
Multiple Myeloma Patient Stories

Introduction

Jack Aiello: I’m with The Patient Story. I’m a myeloma patient and have been for 28 years. I have followed this field very closely and always know that there’s more to learn.

Dr. Shaji Kumar: I’m a hematologist at Mayo Clinic in Rochester, Minnesota.

What is smoldering multiple myeloma?

Jack: Around 30,000 oncologists, researchers, physicians, pharma reps, and more from around the world attend the annual American Society for Hematology conference, also known as ASH, to hear the latest myeloma research from clinical trial investigators, like Dr. Kumar.

We’re going to primarily focus on a topic of myeloma called smoldering myeloma and that’s important because it’s a precursor to myeloma, although you may have never been diagnosed as smoldering.

Dr. Kumar, can you explain the differences between smoldering myeloma and multiple myeloma? And what determines high risk for smoldering vs. high risk for myeloma?

Dr. Kumar: With myeloma, we have precursor stages that clearly exist before patients actually get active multiple myeloma.

What we have learned is that the process that eventually leads to [the] development of active myeloma probably happens sometime in the 30s for many patients. We think it takes an average of about 15 years for that initial seed, so to speak, to grow into a stage where it is actually creating problems like active multiple myeloma does.

There are two distinct stages within this precursor phase. One of which is called monoclonal gammopathy of undetermined significance, essentially saying that you can find that initial condition. We can find some abnormal plasma cells, but they’re quietly sitting in the bone marrow, making protein that we can detect in the blood, which allows us to identify and diagnose this condition, but not really doing any major damage that we are aware of. We know that in some people, it can lead to some symptoms other than what we see in myeloma.

It’s important to note that this monoclonal gammopathy of undetermined significance is not something that is uncommon and certainly increases with age. In fact, if you take 100 people who are 70 years or older, you’re probably going to find that eight to ten of those people will have a monoclonal protein in their blood, suggesting that they do have this early condition that is sitting there.

We also know from long-term studies that [for] the vast majority of the people, eight out of ten people with that monoclonal gammopathy, it will amount to nothing. People will just live their normal life, a normal length, without it ever becoming a problem. But for the other two out of the ten, it can evolve into something that needs something to be done to it and that is often multiple myeloma.

Jack Aiello with friend multiple myeloma advocate

When patients develop multiple myeloma, clearly they have damage to their body because of this abnormal group or collection of plasma cells or myeloma cells which have become cancerous. They can destroy the bone, produce high amounts of protein that get deposited in the kidneys and cause renal failure or kidney malfunction, can cause high levels of calcium, [and] can cause people to be anemic.

In some people, we can certainly identify them before these things happen or identify them at a stage where these things are very imminent and we can start treating them. But those definitions overall together [are] what you would call active myeloma or symptomatic myeloma that clearly needs treatment.

Wedged in between active myeloma and monoclonal gammopathy of undetermined significance or MGUS are people with what we call smoldering multiple myeloma. These are patients or individuals where the amount of plasma cells or proteins [has] progressed to a point where there is [a] considerable amount of those cells in the bone marrow, typically defined as more than 10% or an M protein in the blood that’s more than 3 grams.

Over time, what we have learned is these people are in between the markers and myeloma; [it] is not a distinct diagnosis, so to speak. It’s more of a collection of people who truly has more MGUS or more myeloma. We just can’t do one test and say you are more myeloma-like or you are more MGUS-like. We just have to depend on time for things to declare itself.

For at least half or two-thirds of people with smoldering myeloma, it is okay to sit and wait, but the other third may be at a higher risk of progressing. Those are the individuals [whom] we really think we could do something with the treatments we have and actually make a difference.

When we say make a difference, we mean [delaying] the time they actually get active myeloma, maybe [preventing] them from ever getting active myeloma, or maybe [curing] some of those people and we can just forget that they will ever get myeloma and not even worry about it again.

How do we identify those people? We need to be able to get to them in as precise a fashion as we can. We want to limit the number of people who might get exposed to these treatments, which may not have the same benefit [to] others.

One of the ways we do that is to use the International Myeloma Working Group criteria. Laboratory markers tell us the risk of that individual getting active myeloma in the next two years. If you think it’s more than [a] 50% chance, we feel like we need to do something about it.

There have been large phase 3 trials that have been done, which clearly show that there is a rationale for intervening in those people.

The difference between smoldering myeloma & multiple myeloma

Jack: You’re saying there is a method to determine high-risk smoldering. What’s the difference between them?

Dr. Kumar: We are talking about a stage that you may or may not have gone through. Not everybody has to be in a smoldering stage before they go from markers to myeloma, but many would have gone through the stage.

What we are trying to do here is to see [if] we can do something different for future patients, a course that is different than what you all went through.

The most critical thing that is different is, of course, whether it’s doing damage to your body — bone lesions, kidney problems, anemia, high calcium — or not. There are some individuals who may not have those characteristics, but the risk of getting that is very high: 80% plus in the next two years. Those people, we already consider as active myeloma and not smoldering anymore.

Jack: High-risk myeloma patients are more determined by mutations of certain chromosomes and things like that, right?

Dr. Kumar: That is right. When you talk about high-risk multiple myeloma or active myeloma, we’re talking about people with chromosomal abnormalities (translocations or 17p deletion), high LDH levels, or if they have stage 3 [based on] the International Staging System.

What is the ASCENT trial?

Jack: At ASH, you presented abstract 757 on the ASCENT trial for high-risk smoldering myeloma patients. What was this trial about?

Dr. Kumar: When you think about doing something different with people with high-risk smoldering, what’s our ultimate goal? We want to make sure they never get myeloma and they never have to get myeloma-type treatment that is often given continuously for long periods of time.

There are two approaches. One is obviously to give less intense treatment than what we do in myeloma and try to kind of kick the can down the road, so to speak. The other option is since we caught it so early, to see [if] we actually just get rid of it completely and maybe never even worry about it.

The former approach is what has been taken in the large phase 3 trials that the Spanish group did [and] the cooperative group in the US did. Both trials showed that people with high-risk smoldering myeloma, if you treat them with lenalidomide or lenalidomide and dexamethasone — far less intense than the three- and the four-drug combinations we use for patients with active myeloma — those interventions actually delay the progression to myeloma and, in fact, make people live longer.

What we’re really trying to do with the second approach is trying to cure the disease. There have been some trials looking: can we use more intense treatments and give it for [a] short duration to try and get rid of those myeloma cells?

The Spanish group did a trial called the CESAR trial, which was also updated at ASH [2022]. They treated people with the combination of carfilzomib, lenalidomide, and dexamethasone (myeloma-type treatment), did [a] transplant (this trial only included transplant-eligible patients), and then get them on maintenance treatments like what we would do for myeloma but give it over a defined period of three years instead of giving it continuously until [the] disease comes back.

With a longer-term follow-up [of] four-plus years, what they have seen is only five of the 81 or so patients that they enrolled have progressed to active myeloma. [For] many of those people who have progressed, the progressions have been predominantly just biochemical, meaning the M spike goes up [but] they don’t actually get myeloma.

What the ASCENT trial did was take a slightly different tact. Knowing that a significant number of people cannot go do a stem cell transplant, instead, we will do a monoclonal antibody, like daratumumab added to carfilzomib-len-dex. We use carfilzomib, lenalidomide, daratumumab, and dexamethasone for 12 cycles and then gave them maintenance for 12 cycles for daratumumab and lenalidomide. Basically, two years defined duration of treatment in patients with high-risk smoldering myeloma.

What we found was these results are quite similar to what we have seen in [a] myeloma setting. We get deep responses. Almost two-thirds of the people actually get what we call a stringent, complete response, meaning we can’t really see any protein. We can’t really see any myeloma cells under the microscope.

More importantly, nearly two-thirds of the people who got there also were minimal residual disease negative. We cannot even detect myeloma cells in the bone marrow by using highly sensitive approaches. It seems like this approach does manage to eradicate at least a significant proportion of the myeloma cells in the bone marrow.

The question that’s going to be really critical for us is: does this eradication mean that these cells will not grow back like what it does in myeloma? Only time will tell. I think both studies will continue to follow these patients over a long period of time to see if this emerging activity that we have seen is something that can be sustained over a long period of time without continued treatment.

Jack Aiello with other multiple myeloma advocates

How long until SMM patients are cured?

Jack: How long do you think you need to follow these patients before you can say these patients are cured?

Dr. Kumar: That is a good question and I don’t know if we all know the right answer to that. But the longer we can go without the disease coming back, I think the higher the probability that we may have actually eradicated this.

I’m just going to put a number out there. If in 10 years from the start of the treatment — that means eight years without any treatment — the myeloma hasn’t reared its head back up, I think I would call it successful. Obviously, each passing year is more and more of a success.

Jack: I guess we hope to see some plateau of the curve where people are no longer relapsing if you will.

Dr. Kumar: I think that is going to be the key because, in myeloma, we know that even if they get to be MRD negative, that curve never becomes flat. People continue to kind of fall off because of myeloma coming back. We’re hoping that it would be a different picture here, like what we see with some other hematological cancers like lymphoma and so forth.

Are there still trials open for high-risk smoldering patients?

Jack: At the IMF ASH symposium, Dr. Vincent Rajkumar said that treatment for all high-risk smoldering patients should either be Revlimid with or without dexamethasone or a clinical trial. Do you agree? Are there still trials open for high-risk smoldering patients?

Dr. Kumar: Yeah, I completely agree. We have to always build upon what we have learned and what we have learned in smoldering from two large trials that doing something is better than not doing anything. Giving them at least lenalidomide or lenalidomide with dexamethasone [not only] prevents the myeloma [from] coming back, [but] the Spanish trial has actually made people live longer. We owe it to our patients to have that discussion about the choices.

Ideally, if I had the option, I would definitely put everybody on clinical trials rather than using that treatment because there’s so much more to be learned. We don’t know if lenalidomide-dexamethasone is the right approach. Should we treat them like myeloma with three drugs, which is the focus of the ECOG trial?

The SMM trial is currently enrolling so that is a trial that can be considered. There’s [an] isatuximab trial that is currently accruing looking at isatuximab-len-dex versus len-dex. There [are] also multiple smaller trials in different institutions that are looking to try and see: are there specific combinations or specific drugs that might actually provide a meaningful benefit for patients with high-risk smoldering? It remains an area of active investigation so I would strongly encourage everyone to consider enrolling in clinical trials.

Asking your doctors about clinical trials (high-risk smoldering patients)

Jack: The important thing for smoldering patients is to ask their doctors: are they considered high-risk smoldering or not high-risk smoldering? If they are high-risk smoldering, they should be asking their doctor about trials. Most of these trials that you just mentioned can actually be done locally. They don’t necessarily, I think, have to be done at major cancer centers. Is that correct?

Dr. Kumar: That is right. That’s especially true for the cooperative group trial like the one we have in ECOG. It should be open in pretty much all the community cancer centers across the country.

Conclusion

Jack: Thank you so much. I’ve learned more about smoldering as well. As I said, you can always learn more about myeloma and different avenues of myeloma treatment. Any final takeaway from ASH that you want to mention?

Dr. Kumar: There’s a lot of data presented at ASH. Spanning all the way from simple questions like, “Should we be doing a bone marrow in patients with MGUS?” to obviously, “How do we treat those people or new drugs that would be potentially effective in people who have seen it all?” It’ll probably take hours to go through all that important data.

There are so many new therapies that are coming through that are so effective, especially immune therapies. We started seeing some of those being employed in the first-line treatment and the first relapse. In five years, the treatment of myeloma is going to look very different than what we are doing today.

Jack: Dr. Kumar, it’s always a pleasure talking with you and I want to thank you so much for providing your insights to The Patient Story.

Dr. Kumar: Thank you, Jack.

Multiple Myeloma Patient Stories

Clay D.

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

Melissa V.

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

Elise D.

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

Marti P.

Diagnosis: Multiple myeloma, stage 3

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

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

Ray H.

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

Valarie T.

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

Jenny A.

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

Keith G.

Symptoms: High levels of protein
Treatment: Chemotherapy, stem cell transplant
...

Julie C.

Symptoms: Queasiness, food aversions, lack of appetite, fatigue
Treatment: Stem cell transplant, chemotherapy (D+PD), bispecific antibodies (talquetamab & cevostamab)
...

Erin H.

Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...

Gregory P.

Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...

Laura E.

Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies
...

Tags ASH 2022

Bladder Cancer Cancers Chemotherapy Patient Stories Surgery

Vickie’s Muscle-Invasive Bladder Cancer Story

Post author By Katrina Villareal
Post date February 16, 2023
No Comments on Vickie’s Muscle-Invasive Bladder Cancer Story

Vickie’s Muscle-Invasive Bladder Cancer Story

Vickie was diagnosed with muscle-invasive bladder cancer at 66.

She was initially experiencing intermittent pain but after being told that she did not have a urinary tract infection, she knew she had to keep pushing for answers.

Margo, also a bladder cancer patient, talks with Vickie as she shares her journey of how advocating for herself helped save her life.

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

Name: Vickie D.
Diagnosis:
- Bladder cancer
Initial Symptoms:
- Intermittent pain in the gut and burning sensation
Treatment:
- Chemotherapy: dd-MVAC (dense-dose methotrexate, vinblastine, adriamycin, and cisplatin)
- Surgery: cystectomy

It did not surprise me when I got that phone call that it was a tumor. What surprised me was that the only way out was to do chemo and have my bladder removed.

All of us are doing what we can to increase awareness of bladder cancer… to help bring this conversation to normalcy and share stories, hope, and inspiration for others going through it.

Margo W.
Plasmacytoid Bladder Cancer Survivor

Introduction

Margo W.: I’m a bladder cancer patient who is still cancer-free because I had access to great doctors [and] because I advocated for myself.

We know a fair amount about other kinds of cancer, but not so much about this one. Cancer is not something you want to learn about if you don’t have to so we all have big gaps in understanding what the journey is going to look like.

I had the opportunity to meet and talk with other patients. I love that I get to interview Vickie. She can share her experience and how much it meant to her that she had a bladder cancer mentor who [can] show her what life after [having] your bladder removed looks like. It’s not as terrible as you fear. You have no idea what to expect so that’s why I think it’s so important to share these stories.

We all have some similarities in our stories, but we also have unique experiences. One of the most valuable things to do is to help people not feel alone and to remove a lot of the fear [and] the unknown so that we can see ourselves making it through that journey, get to the other side, and get back to living life.

I hope what it does is inspire and help people feel connected, understand, and reduce fear as we face a variety of different battles.

Vickie, if you had to describe yourself to someone who’s never met you before cancer, how would you describe Vickie?

I was diagnosed in the fall of 2020. I was 66 years old.

Before cancer, I was trying to cram as many things as I could into a day, almost aggressively staying busy.

I’m outdoorsy. Tomboy is what they would call me. I have a small lake house. I spend time out there doing projects.

I love the water. I swim, paddleboard, kayak, bicycle, travel, [and] garden. I have some chickens that are pretty fun to have in the city. I live in the middle of Austin, Texas, and I have lived here most of my life.

Margo found me through Dorothy, who is also a bladder cancer survivor. She’s my bladder cancer mentor.

Margo W.: And I met Dorothy and her husband, John, at the bladder cancer think tank in August of ’22. Dorothy and her husband are very involved with BCAN, Bladder Cancer Advocacy Network. They are also Austin-based. They’re working to create more awareness.

All of us are doing what we can to increase awareness of bladder cancer because it is the least talked about of the major cancers. It’s number sixth or seventh most diagnosed in this country. We are doing what we can to help bring this conversation to normalcy and share stories, hope, and inspiration for others going through it.

Pre-diagnosis

Initial symptoms

Margo W.: What made you think about the pain that you were in? What about that told you [that] you needed to keep pushing for answers?

I didn’t feel well and had some pain. The pain was intermittent enough that it was reoccurring. It wasn’t every single day, but it was enough.

I had a doctor’s appointment coming up in September; May 2020 was when I first noticed that the pain was getting to be less intermittent and almost daily.

I did believe I needed to see my gynecologist and not my family practice physician. I realized that I needed to keep pushing until they would see me. But unfortunately, she wasn’t interested in an old woman that was having a little pain.

Margo W.: How did she specifically respond to you?

She responded by saying that all of my tests had always been fine. I hadn’t had any abnormal test results over the years.

Unfortunately, because I was 66, I had seen many gynecologists over the years from having my children. Then as I aged, these wonderful doctors quit taking patients.

‘You do not have a UTI.’ That wasn’t a good answer for me because I knew if it’s not that, then what is it?

This young woman had only seen me once a year before and I guess she’s just going off of all the test results we had discussed and things that had happened in my life.

I said, “There is something wrong. This pain isn’t going away and I don’t believe it’s a bladder infection [or] UTI. I’ve only had one in my life and there’s no blood.” She said, “We’ll go ahead and run that test again [to] make sure it’s not a UTI.”

They ran the test again [and] called me up. “You do not have a UTI.” That wasn’t a good answer for me because I knew if it’s not that, then what is it?

Ironically, the day after my exam, I started seeing blood. I called them right back and said, “I need to see you again. There’s something wrong.” They had me see the assistant and she also said, “You do not have a UTI.” I said, “Then let me see someone else. Who can I go see?” They recommended a urogynecologist.

Seeing a specialist

Margo W.: Your only symptom was persistent, consistent pain and discomfort. You shared it with her. It’s not a UTI.

The gynecologist [was] saying, “I don’t know what it is if it’s not a UTI. I didn’t see any abnormal results from your pap smears. I haven’t seen any other abnormal results. I don’t feel anything.”

I’m freaking out on the table. ‘What do you mean? Why do we need a CT scan? Doesn’t that mean cancer?’ She said, ‘Oh, there’s no chance of you having cancer. That’s an old man, smoker’s disease.’

The next thing was to get that next specialist. I called my friends and no one had a urologist in their phone book. My next step was to rely on this doctor.

I had to call three times to get the name and then the referral. Luckily, the referral was a gyno-urologist. She said, “I don’t think there’s anything the matter here, but just in case, we’re going to take some measurements. We’re going to go ahead and do a CT scan. We’re also going to do a cystoscopy.”

I’m freaking out on the table. “What do you mean? Why do we need a CT scan? Doesn’t that mean cancer?” She said, “Oh, there’s no chance of you having cancer. That’s an old man, smoker’s disease.”

I did smoke for a short while in my 30s, but I hadn’t smoked then for 30-something years. “It’s probably nothing, but let’s do the CT.”

The next step was to make the appointment. No one in Austin could see me for at least two weeks. I finally found a place out in Cedar Park, which is a good 30 miles away.

It was daunting and because it’s COVID, I have no one with me. Everything that I did, I’m completely by myself because no one was allowed with me. I’d have my phone with me and do a conference call.

Diagnosis

Getting the official diagnosis

I was on a trip. The urogynecologist called me up and said, “I have some bad news,” and that’s how she said it. “I can’t help you. I need to refer you to another doctor.” I have a tumor in my bladder. She told me it was about two and a half centimeters and I said, “That’s the size of my thumb. Oh, that’s not good.”

Doctor wasn’t available for two weeks. It’s now [the] end of October. I pushed that appointment up. I said, “No, I need to see this doctor. What’s his next available? Work me in,” so they did. They worked me in and that was November.

That was daunting to see his business card saying that he was not just a urologist, he was a uro-oncologist. I went, “I have cancer.” I’m thinking, Tumor. They get rid of a tumor. I’ve had a benign tumor removed from my breast. I thought everything was fine. He said, “No, let me show you your scan.”

I saw the tumor on the bladder wall. “What does this mean?” He said, “It means, yes, we’re going to do the cystoscopy. We’re going to try to remove it, but it looks like it’s on the wall. And if it’s in the muscle, there’s nothing that we can do but remove the bladder.”

I was by myself. I’m just going, “Please don’t tell me this. I don’t know what that means for my life because I am super active and I don’t want to stop.”

I took his information. I said, “What about a second opinion?” He goes, “Before we get there, I want to do the cystoscopy.” He was putting me out [for] two more weeks. I said, “Nope, I need you to schedule me next time you’re doing this procedure. Please work me in. I beg you.”

He’s 35 years old at the time. He’s my daughter’s age. I’m just going, “I don’t believe this doctor knows what he’s talking about,” but he does. I knew it, but I didn’t want to know it.

We [did] the cystoscopy two days later. He came out and said, “I can’t do anything for you but chemo and remove the bladder.”

I have tried to eat right, stay fit, [and] do everything to be healthy. I always thought it would be a heart attack or a stroke. I had no idea it would be a tumor that I would have to face.

Knowing it was more than a UTI

Margo W.: When you first went to the doctor, the gynecologist said it’s nothing and it [was] not a UTI. What were your feelings at that point?

It was not the news I wanted to hear. I wanted to hear that you can take an antibiotic and the pain will go away. “You need a hysterectomy.” I could handle that. Isn’t that weird?

I could handle someone telling me that [I] need a different operation because I know many, many women that have had a hysterectomy and I’ve watched them go through this process and healing [from] it. You just don’t need the uterus at this age anyway. But the bladder?

Margo W.: Still need one of those. Then you went to the next doctor who was a urologist-gynecologist. She’s the one who said, “No way this is bladder cancer. That’s an old man’s disease.” How did you feel when she told you that?

I felt bad that I had smoked cigarettes in my life. My first thought is, Oh, old man smoker. Well, I’m an old woman and I did smoke, but I haven’t for so long.

Then my brain just went to, I don’t believe her. I believe there’s something much… I don’t want to say much worse because something could be much worse, we know that. Things can be worse. But I thought, I don’t really believe her. I think it is something.

It did not surprise me when I got that phone call that it was a tumor. What surprised me was that the only way out was to do chemo and have my bladder removed.

Going to doctor’s appointments alone

Margo W.: You are doing all of your doctor appointments solo. No one could go with you. What did that feel like?

I’ve always been independent so, at first, that didn’t bother me. But the day that Dr. Laviana said, “You have cancer and this is what has to happen if you want to live,” then I needed somebody. That is the moment I wish somebody had been with me.

I’ve been with my partner for 13 years. We’ve known each other for longer. At that moment, I needed a person so that I could find out, “Is this reality?”

Anyone that’s ever had this kind of news, it’s hard at that moment to say, “Is this really happening?”

I have tried to eat right, stay fit, [and] do everything to be healthy. I always thought it would be a heart attack or a stroke. I had no idea it would be a tumor that I would have to face.

I felt very alone.

After that appointment, I went to UT Dell Hospital and they did the cystoscopy. Mitch did get to sit in the waiting room there. They did allow that.

When Dr. Laviana told both of us this horrible news, I was glad that he was with me. I needed someone else to hear what he was saying. From that moment on, I realized I needed to always have my phone on me so that it could be a conference call if need be.

A couple [of] days later, I told my daughters, which was really hard. I wanted my daughters, Mitch, and my sister, who has been in medicine — she’s not a doctor or a nurse, but she’s been in the field — to hear whatever the doctor was saying. I needed this support group so it wasn’t me trying to jot down every single fact.

I didn’t cry until chemo. Once chemo hit, then I started feeling sad because the changes were taking place.

Reaction to the diagnosis

Margo W.: I feel so comforted knowing there’s another woman out there who’s been through [something] similar. You want to have as many people close to you as you could. You were jotting down what the doctor is telling you. What was that like for you?

This is a business now. My body is my business. I had run a business and I thought I now have to take care of everything. Even though I’ve got these folks that I’m relying on to listen and hear, I have to make these decisions. No one else is going to make them for me.

He told me, “Yeah, you could just go on with your life, but in five years, you’ll be dead.” My imagination [started] running around. I would jump from, Okay, so I just die. I had a good life. All right. Just throw in the towel and have this horrible cancer in my body. But then I thought, I’m not quite there yet. I still have a lot to do. I don’t know what it is, but I have a lot to do.

My daughters are very important to me. We’re very close. They both live in Austin. My partner and I, we’ve traveled. We have great times. We do a lot of volunteer work. I thought, I need to just keep plowing away.

I don’t think I got depressed. I’ve always found a way to not feel that I can’t handle it. I just told myself this is my new job. My new job is Vickie’s body. Clearly, it wasn’t a good business. I didn’t choose this business. There [are] other things I would have rather been doing, but I just hung in there.

I don’t know how else to describe it. I didn’t cry until chemo. Once chemo hit, then I started feeling sad because the changes were taking place. I didn’t care for the way I felt physically. I didn’t have the energy that I always have. I couldn’t even walk a block down the street and I’m used to walking five miles and hiking.

Treatment

What were your treatment options?

Margo W.: It is interesting how it’s a different journey for everyone. That’s interesting that your go-to was, “Okay, I’m going to project manage this. I’m going to science this,” and I get that because part of us just goes into that mode. How did the doctor present to you what your treatment options were and how did you feel when he told you that?

I remember, he said very quickly, “There’s a couple [of] schools of thought about the chemo regimen. Some people even do radiation.” He handed me the BCAN folder, which, of course, I wanted nothing to do with.

I just thought, Oh, no, I don’t want anything to do with this. It was not that it was scary. It’s just I didn’t really want to read it until I had to. Like for a test.

His idea was, “We’ve got UT Dell Oncology here.” He didn’t mention Texas Oncology. He just started automatically saying, “All of this is right here at this facility.” But he’d only been in Austin for two and a half or three months. He didn’t really know all the resources yet.

The interesting thing was, I did say, “How do you feel about a second opinion?” This is after he’s done a cystoscopy and he’s telling Mitch and me, “You have cancer. This is what you have to do.” I said, “How do you feel about me going to MDA (MD Anderson)? Because I’m going.” And he’s like, “Of course, always get a second opinion.”

I was in excellent hands. [I’m grateful] to have modern science and these two facilities so close to us.

After I told my daughters, I reached out to some friends and one of my friends happened to have aunts and even her grandmother that had bladder cancer and they lived into their 90s. I was like, “Oh, Lord, this is good news.” Then she said, “One of my dear friends from Corpus Christi was diagnosed years ago and she’s about your age, Vickie. You need to talk to her.”

That was probably one of the best conversations I had throughout the journey because Toby is the one who said, “Dr. Kamat, he’s the man. He did my surgery 15 years ago,” and told me exactly what she went through. That was eye-opening.

I got in to see Dr. Kamat and all of those teams of people there. It’s daunting, but it’s amazing, the expertise. Even though I think my doctor is an expert and I’m really glad I have him in Austin, I knew I had these folks and that I was in excellent hands.

[I’m grateful] to have modern science and these two facilities so close to us.

Our mutual friend, Dorothy, and her husband dropped by and brought me the BCAN swag bag. We have the Bladder Cancer Advocacy Network’s coffee cup, brochure, and brochures for the whole family. A wristband that I still wear every day, as does Mitch, my partner. That was really good for me to be greeted into this new community of bladder cancer survivors.

They are my earth angels, Dorothy and John, and the whole BCAN network.

Urinary diversion options

Margo W.: We aren’t innately comfortable talking about bladder cancer. We’re ladies. This is below the belt. We talk about breast cancer. We talk about prostate cancer. We talk about colon cancer.

There is a problem with this kind of cancer being misdiagnosed, especially in women. What I love is that you and I are both willing to go out on a limb and talk about something we don’t especially love to talk about.

The neobladder: did the doctor present that as an option? How was that handled?

I was always going to have the neobladder. I just thought, That’s the only way I can do this. I have to have something that’s not external. I’m so active. I don’t want this extra piece of equipment.

I don’t know what I was picturing. I was picturing another set of organs on the outside of your body. And it’s really not that big.

After seeing Dr. Kamat and that wonderful team at MDA, they were saying the exact same things that Dr. Laviana was saying in Austin.

We had to go [to MD Anderson] twice because the first time, they wanted their very own COVID test. We went down on a Sunday, got the COVID test, turned around, went on a Tuesday, and stayed through that Thursday.

Dr. Kamat, bless his heart. What a physician. He wanted all the tests new. He knew what he saw, but he said, “I’m going to go in and I’m going to see what I find.” All the tests were redone.

He and I talked about neo because Dr. Laviana knew I wanted that. As soon as he told me about the neobladder, I was right on it.

Then Dr. Kamat, his group, and the oncologist there, Dr. Campbell, are looking at me going, “Are you sure you want the neobladder because you’re super active? It takes about a year to ever even figure out how to avoid having these accidents. You’ll be wearing a diaper for at least six months and maybe longer. You will [catheterize] yourself daily.”

I had catheters when I had my children. I am done with catheters. I can’t do that. No, I’m not catheterizing. Up until the day of surgery, Dr. Laviana thought I was going to do it. He said, “Oh, neobladder.” I said, “No, I’m not doing it. Too much.”

Margo W.: What is a neobladder?

It is a piece of your intestine. They cut out the little ostomy. They use part of your colon and create a bladder out of that. It fills up and then you would urinate just the same — theoretically — as you would if you still had your bladder.

However, the problem is, especially with women, they’ve now cut through all of those muscles. They’ve pretty much stripped you of any feeling that your bladder is full. My understanding is that it would take the place [of your bladder], but it’s made out of your own body.

The problem would be that at my age, especially, I don’t have [a] strong muscle reaction to something filling up down there. For me, it just probably would have taken two years to ever get that structure back and not void all over myself.

Two women that I’ve spoken to have neobladders. They were in their early 50s when they were diagnosed and they did tell me how difficult it was.

The third option is the Indiana pouch, which Dr. Kamat recommended not doing [because of] your chances of having infections. That’s the other reason I didn’t want the neobladder.

[With] the Indiana pouch and the neobladder, your chances of having numerous infections the rest of your life, like UTIs, it’s a great percentage.

The last part of that is you can get cancer in your neobladder or the Indiana pouch. I thought, If I’m going to do this, I’m going to try to erase all chances as much as possible.

Margo W.: Can you describe what an Indiana pouch is?

As far as I understand, from the people I’ve spoken with, they also take a piece of your intestine. They’re hooking up your ureters to another piece of your intestine. But instead of it coming out for an ostomy pouch, it stays within your gut.

It is similar to the neobladder, but you do catheterize at least twice to three times a day to void your urine.

Whereas anyone that has an ostomy and the little pouch, you just feel it. “Okay, it’s kind of full. I’m using the restroom,” wherever you are.

Margo W.: Funny question: what’s the best thing about having a urostomy?

I did a five-mile hike in the woods. My friend that I was with [had] to use the restroom. I’m like, “I’ll go and use the restroom, but I don’t have to because I’m out in the woods,” and I just walk behind a tree. There’s no more squatting and I like that.

I like that I don’t have to touch a toilet and that’s the best. My friends all know what my body is now. We all joke about it. “Vickie doesn’t have to use the restroom. She can just go behind a tree.”

I could have gone to the hospital but I liked coming home and being in my little world.

Chemotherapy for bladder cancer

Margo W.: Talk to me about chemo and what you ended up doing. How long you were in? What was that like and how did you feel about it?

The one that I wanted was the dd-MVAC (dense-dose methotrexate, vinblastine, adriamycin, and cisplatin). You go in one day and they give you two of the drugs. Then you go in the second day and they give you the rest of them. That’s for two months, two times a week, every other week for two months.

I went to Texas Oncology. I was very fortunate that Dr. Campbell, the oncologist at MDA, was a resident with Dr. Yorio at Texas Oncology so he actually got my appointment.

I was just about to start it with UT Dell. They didn’t even have the drugs on hand. They were going to have to order it.

They did the port. After a while, especially [with] these drugs, you might have trouble finding that vein.

Vickie D. and partner Mitch with daughters

I picked that one over the other regimen. The other regimen was for four months, I believe, and you do the same thing every other week. However, you don’t lose your hair. It’s not as intense, but I wanted to get rid of this tumor and they said the best way to do it is to use this heavy, dense dose.

Again, I was really glad about modern science because I know that a couple of years ago, and at MDA they still do this, you are in the hospital when you receive your chemo treatments.

I could have gone to the hospital but I liked coming home and being in my little world. [There] was COVID again and no one could go into Texas Oncology with me. I would just sit there and freeze. It was winter. It was so cold.

Besides the surgery, I think that was the most frightening part of this experience. MDA was daunting and frightening [with] all the tests being done there by myself. Going into Texas Oncology by myself, walking up the steps, and seeing all the patients was very, very, very hard.

I was so sick [that] I couldn’t stand food. Just looking at it…

Side effects from chemotherapy

Margo W.: How long was each session of chemo? How did you feel after?

Day one was about five hours and day two was about eight.

I lucked out. [The] very first day that I went to Texas Oncology, I had a nurse. She was this little firecracker. She was giving me all these facts and saying, “This is what exactly is going to happen. In 14 days, you will lose your hair. In a couple [of] hours, you’re going to feel like this.”

I made this joke about [a] John Prine song where when I go to heaven, I’m going to have a ginger ale and vodka. He has this wonderful song about dying and what’s going to happen when he goes to heaven.

She just said, “I want you to go home and have a ginger ale and vodka tonight.” I was like, “But I’m not drinking. I’m trying to save my organs.” And she goes, “No. You need to because you’re a nervous wreck, I can tell, and this will help.”

I got ahold of my partner and said, “Hey, Mitch, stop at the store and get me a ginger.” I was drinking ginger ale anyway, but it was just funny how that was my first day.

My first impression [was if] this is what it’s going to be like, no problem, right? That first treatment, I went, “Well, that’s not too bad.”

Then I saw that I was going to take seven other pills. Again, modern science [is] amazing. In the hospital, they’re going to give it to you on IV but the second you get home, you start taking these pills and you do that every other week.

I’m taking all these pills. I hate pills, but I’m going to take them. One of them, she said, “You’ve got to take it,” because it was the steroid, I believe. “It’s going to help your immune system. You’re going to feel weird,” and she told me how I would feel and she was exactly right.

I became more ADD than I am. I couldn’t focus. But I was [on] the chemo regimen so I just said, “This is what I have to do.”

Another modern medicine that I just have to be grateful for is anti-nausea because I was so sick [that] I couldn’t stand food. Just looking at it… [On the] third day, [I] was down.

I was lucky because one of Mitch’s brother’s best friends had just gone through the dd-MVAC. He had just had it at MDA and he told me exactly what was going to happen also. “This is how you’re going to feel. Be sure to have some Miralax. You’ve got to have that mouthwash stuff that they’ll mix up for you.”

Margo W.: Did you ever have mouth sores? What was that like?

It was horrible. It was just like my oncologist, Dr. Yorio, told me. He said, “They’re ulcers, Vickie, they’re sores. And if you don’t treat them, you can get infections.”

I did the baking soda salt. Mitch would even mix it up. They add milk of magnesia to it. They pour all this stuff together and you’re supposed to swish it and swallow it because your stomach also has those sores.

Mitch is a great cook. He would fix these meals and I just take one bite and say, “Honey, nuh-uh. I got to have macaroni and cheese if I could even stomach that.”

But my best friend was Mexican Coca-Cola. I don’t even drink Coke but Mexican Coca-Cola was the most soothing drink. I didn’t drink much of it, but it settled my stomach. I felt like I had eaten. It was filling me up. I guess it reacted with those sores because it didn’t hurt to drink it, whereas just water would kill my mouth.

I finished chemo [in] mid-January. I saw my general practitioner in May. He did the blood work [and] he goes, “You know that you’re borderline diabetic.” I said, “Yeah, because I’ve been drinking these Mexican Cokes. I promise I’m getting off of them.” And I did.

I quit cold turkey. I saw them at a store one time and went, “I have to have one.” I’ve got this feeling of I’m going to allow myself to have one. But I got off of them.

Vickie D. and partner Mitch with daughters haircut

Margo W.: Did your hair start to fall out [on] day 14? What was that like? What did it feel like physically? What did you notice and how did you feel emotionally about it?

I had long, long hair and put them in braids one day. We picked the day. I think it was week two. I’d had chemo. I was feeling good because [by] week two, I always felt almost normal.

My daughters came over. They each took a braid. They cut it off. Then one of my daughters styled my hair. Once they cut the braids off and I had short hair, I didn’t notice the hair coming out as much. We did a punk ’do. The girls came over and we just hacked on it. You could see then that I was going bald and so that’s probably 21-28 days.

Finally, I just said, “Mitch, give me your buzzer. I’m buzzing it. I can’t take it. I don’t want to see these hairs on the floor. I don’t want to see them on my body.” I buzzed it, he buzzed it, and then I just started wearing scarves and hats all the time so I don’t have many photos without a hat or a scarf on.

It was challenging because I always did the bun, the braid, and the ball cap. I just tucked it up and off I went and did my thing so it was weird to not have hair.

This is fun now. It’s fun to have short hair. I don’t think I’ll grow it long ever again. I think I’m going to stay with this because I think I’m so different myself that I don’t really want to have that look that I had. I’m from a generation where we grew our hair and never cut it. I’ve had hair down to my rear end, but now, I just go, “Eh, I’m different now.”

Exactly six weeks after my surgery, when I could start exercising again, I was out there doing everything I could to get my physical strength back.

Self-image and cancer

Margo W.: Personally, I had to wrestle with who am I if I’m not a woman with long blonde hair, which sounds shallow, but it’s a part of who we are. Did your sense of identity change? What did you go through when that was happening?

Yes. My identity of being the strongest person in the room like, “I am strong. I can do anything,” was not that anymore. I felt like, “How can I guide anybody?” People come to me for information and guidance and I thought, I guess I’m not that person anymore, but I’m kind of getting it back.

My children and their friends rallied behind me. They come to me and I was freaking out. I thought, How am I going to help these young people if I am so ill?

Exactly six weeks after my surgery, when I could start exercising again, I was out there doing everything I could to get my physical strength back. Just getting older is scary because I don’t have the balance I used to have. I practiced yoga for over 20 years and I had the best balance around and now like, “Oh, I could fall over.”

When people say they fought cancer, that’s great. I don’t think I fought cancer. I wanted it gone. I didn’t want that to be my identity. I wanted it to be more of, “Okay, everybody, I’m here. I’m who I used to be. I may look different,” because I have to tell myself that. I’m not the same.

Live your life now.

Life after cancer

Margo W.: You have [a] presence and I can tell how you’d be an instant leader and encourager of other people. What’s different now? How are you different now after this journey?

I have this little statement in my home office: “Live your life now.” My personality was always, “I’m going to live my life, but I have to get all these other things done.”

I make my bed every morning. I’ve always believed in it. It feels good to me to say, “Okay, I’m actually out of the bed. I’m actually going to make the bed.” I may stay in my jammies in my room for a while and drink my coffee and I go into my day.

I’m a little less “got to get going.” I’ll sit and look outside. I don’t meditate, but I do try to hear those birds singing or the squirrels running around on my roof. I’m going into everything a little less hurried.

I am trying not to be as negative as I used to be. I don’t want to find fault with things. When I catch myself going, “That was not so good,” I’ll go, “Oh well.” And that’s what I say. “Oh well. That’s not important.”

Living intentionally

Margo W.: I think that’s magnificent. You are now living better than you have before because that sounds very intentional to me. Tell me more about how that feels to be able to be in the present. Being intentional and present is hard.

It is, especially for me. I’m just always looking at what’s next, what’s next, what’s next. I still am that person, but I’m not as apt to think that everything has to be in its place.

I used to think I can’t even enter the room unless all this stuff is organized, put away, and everything has to be in its place. So there [are] a couple of things out of place. I’m okay with that.

To me, the word “now” is better than saying I’m in the moment. I’m trying to enjoy being out in the woods. I want to do more hikes. We’re surrounded by great trails here in Austin.

I’ve been trying to ride my bike more. I like volunteering. I was already doing Meals on Wheels, Keep Austin Beautiful, and other little town cleanups. But now it’s, “What else can I do? Where else can I get out of myself and help someone else?”

I still have major anxiety about bad news from a doctor… Now, when I go into these tests, I just have to say I’m going to be accepting.

Follow-up protocol

Margo W.: That’s so cool. Are you cancer-free today?

I’m tested every four months. The first was [at] one month and then the three-month test. The six months is what I’m looking forward to.

Dr. Laviana, every time I get my test results, he’s like, “Oh, I told you. It’s gone, Vickie. We destroyed it. It’s gone.” Talk about an optimist. I hope.

Everybody has that scanxiety. I don’t care at all to look at my calendar and see what the date is. It’s coming up, I just know that.

Dealing with “scanxiety”

Margo W.: The sign in your office says, “Live your life now.” How do you think this experience — getting rid of cancer and all the extreme measures you had to [do] — has changed how you approach every four months [when] you’ve got to go back and find out if you’re still cancer-free or has it?

I don’t think it’s changed. I still have major anxiety about bad news from a doctor.

Everyone that has to go through this, you look at your history and [say], “I made it through that. I made it through this. I made it through that. Wow, I can’t believe I did that.”

I did 10 triathlons. I’ve done all these things and I would have done more but I said 10’s a good number because it does involve a lot of training. That’s a lot of hours in my life training.

Now, when I go into these tests, I just have to say I’m going to be accepting. Obviously, there’s nothing I can do about it. I’m nervous going in. My blood pressure is probably super high.

Then I wait for those results. They come on my phone. I see them. I go, “Okay, Mitch, I’m going to read them right now. I’m just going to go [to] the office to sit down. I don’t want to be in bed reading this stuff.”

I start to read through it and go, “Wow. These are good numbers. It says they don’t see anything new in my lungs and other organs. Whew. I made it through another one.” I look forward to that day. I love hearing from people like you and Dorothy. Just positive that it’s gone.

Margo W.: Surreal experience. It’s an overused term, but it really does apply. As you’re walking around going to doctors and doing chemo, did you ever feel out of body? Like, “Is this happening? I feel like I’m walking in somebody’s physical body, but it’s not really me.”

Every time I get scanned. When they put the iodine in, first, I’m grateful that I can have iodine. I’m like, “Wow, at least I’m not allergic to that.” Then the next thing is, yes, I don’t know where I go, but I do feel like it’s not me, it’s somebody else’s body.

I’m going to come out of here in about an hour, an hour and a half. I’ll get my car and drive away. But each time, especially that scan.

I’m always grateful for science. I say thank you very much so we have the science and the machine that can look for these things.

Being grateful is a coping mechanism for me.

Coping with cancer

Margo W.: I love that you’ve said often throughout our conversation that you’re grateful for things. You’re grateful for science, grateful for medicine, grateful for doctors. Has gratitude always been part of your coping skill?

Yes, I think I’ve always been. I have a temper and I could get angry super fast, but then immediately I go, “Okay, I am grateful because that wasn’t a big truck. That truck almost hit me right as I’m cursing him out.” That’s where I go immediately after something gets my feathers ruffled. Being grateful is a coping mechanism for me.

Words of advice

Margo W.: It seems like you’ve come through a journey that left part of you behind and yet the core part of you is enhanced. What would you share with anybody facing a health challenge like you’ve been through or really any difficulty?

Taking the information that’s given to you. The doctors are giving you information. Hopefully, you’ve got a friend group that’s supporting you.

My sister gave me this wonderful binder. It’s like a baby journal that had pages in little envelopes that you could slide things in, like business cards. I would take that. This helped me through the very beginning. Every once in a while, I’ll pull it out and add something, especially if I meet someone.

I really believe in writing it down. It doesn’t have to be journaling. It’s more of information and who’s helping me.

I realized I had people on a list that I was keeping abreast of what was going on. I did not put it on Facebook. I wanted these people to know that I was doing okay because they were going to hear about it and then I would get information from them. Stay informed.

Everybody has said, “You’re a warrior.” And then, “Oh, by the way, I’m going to drop off cookies,” or “I’m going to do this,” or “What do you need done?” That support is what carried me through even though I’m independent.

My mother, if she were alive, would probably say, “Oh, Vickie let you do that? Wow. She allowed you to?” My mom would have said, “How did you become so reliant on folks?”

Vickie D. and partner Mitch with daughters LUCK sign

Vickie D. and partner Mitch with daughters outside house

Importance of a support system

Margo W.: It sounds like you’re talking about how valuable the connection and the support from your community [is]. It had to look different during COVID. But it sounds to me like you knew, at the time and now still do, the value of that community and support.

If I were sitting with someone that had just been diagnosed, have your friends, family, and connections. I know that’s what church is for. I know that’s what we’ve had in the past in our culture. That’s what’s gotten a lot of people through all these hard times.

Just to have those people, even though they couldn’t see me. [For] anyone that had to go through any kind of health crisis during COVID, it was especially difficult because you couldn’t have those loved ones with you.

Margo W.: Would you say that having a phone call or a FaceTime call with people you care about is as good as seeing them in person?

We have relatives in South America and Mitch’s son lives down in South America with three of the grandkids. They’re like mine. I just am in love with these children. We do WhatsApp with them and so I was already accustomed to doing WhatsApp before COVID.

When COVID hit, it wasn’t the same and I don’t think it can be the same, but thank goodness we have it.

I was imagining all the phone conversations I had with my children. They’re listening to the doctor give us all this news. My girls are listening to everything. Mitch is in the car listening. If we didn’t have that technology and I was by myself in there, jotting notes down, trying to remember everything, how do I tell them this is what I’ve got to process?

It is important to have Zoom and everything. But no, I don’t think it’s anything like having anyone in your house and saying, “Hi, come by for dinner,” or meeting them at a restaurant.

Margo W.: It’s a distant second, but it’s better than nothing.

It is.

Margo W.: What was it like when people wanted to bring you meals? Across multiple cultures, this is one of the things we know to do when things are tough for people. What did that look like during COVID?

That was hard. I really didn’t want anyone to put out. I did not want them to have to cross town. I didn’t want to have them come over, especially since they weren’t getting out anyway.

I would just say, “I’m going to peek out and say hi and hugs to you,” and they would leave it on my porch so we would have social distancing. What a difficult time.

I would accept what I could, but a lot of times, I would say, “Please, please, please, please just take care of yourself. Be safe. I love you. Thank you for thinking of me. When this is all over, we will get together and you can fix me a meal.”

Margo W.: Is there anything else you want to share with people who are dealing with any part of this journey?

You must advocate for your body and for your family. You have to show up and tell them you’re not going to be blown off because that’s what it felt like. It’s a terrible journey.

As you have these tests or whatever they’re recommending, if it doesn’t sound soon enough, I say keep pushing it. Get in there. Go for it.

I remember seeing my general practice physician in February 2020. I went back to him and said, “Why didn’t you do a urine test that day?” He said, “You were in a hurry.” And I said, “I was not in a hurry. You’re a doctor. What are you talking about?” He goes, “No, no, no, I don’t think we did it because you said that you’re in a hurry.” And I was like, “No, I don’t like that answer.” So, of course, he’s not my doctor anymore.

COVID was hitting and I think everybody was afraid to keep you in the office very long because it was right before everything shut down. And that, I realized, was a turning point where I could have stood up for myself and said, “Hey, don’t you do a urine test? Isn’t that part of the physical?” Because that was my physical. That’s why I went in that day.

No matter if you’ve been diagnosed or not, you must advocate for yourself. I remember always thinking, I don’t want to insult the doctor. I can’t tell them what to do. But I do believe you need to stand up for yourself.

Vickie D. 2022 Walk to End Bladder Cancer

Be your own advocate. Don’t let them blow you off.

Margo W.: I think that’s a really good observation. We do have this reverence for doctors [and] rightfully so. They’re in school forever and they know a lot more than we do. But the bottom line is it’s our body. We have one.

I love that you’re advocating for advocating. We need to be willing to be uncomfortable with whether we think we are hurting their feelings or disrespecting them because in your case, advocating for yourself helped save your life.

I don’t have a clue what would have happened if I hadn’t said, “I need to see another doctor. If you’re saying it’s not a UTI, get me the name of that next doctor.”

I really believe in second opinions. If you’re not feeling like this is the right answer, you’re probably right. It’s not the right answer. They’re not giving you the information that you know your body is telling you that something’s the matter.

If I had a class on cancer, that would be one of the first 101. Be your own advocate. Don’t let them blow you off, especially when you’re an old lady.

Margo W.: Regardless of your age. Advocating for ourselves is really key. I don’t think it’s 100% natural for a lot of women for a million reasons.

Thank you so much for sharing your story. It’s heartwarming to hear your story and I’m so glad you’re cancer-free as far as we know right now.

Thank you for sharing your story, Vickie!

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The Right Dose

The Right Dose: Finding the Balance in Cancer Treatment

Janice

Janice Cowden is an advisor for The Right Dose. She was first diagnosed with breast cancer in 2011. Nearly five years later, she developed metastatic breast cancer, which meant the cancer had spread to other parts of her body.

Chelsey Pickthorn is also a metastatic breast cancer patient and, together, they discuss advocating for the “right dose.”

Chelsey

Many patients are put on treatments to help lengthen survival but it comes at the cost of severe, debilitating side effects

In this conversation, they voice how to find the right dose, how to bring it up with your doctor, and the importance of advocating for yourself.

Brought to you in partnership with Project Life.

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

Table of Contents

Getting the cancer diagnosis
Breast cancer treatment
Side effects from chemotherapy
Finding out about dose reductions

I was completely shattered… Being diagnosed at 33, I thought that my whole world had come crumbling down.

Chelsey

Getting the cancer diagnosis

Janice: You actually remember every single moment when you get diagnosed. I can put myself right back in the office, hear the words, and feel the moment.

He said, “I have really bad news. You have stage 4 breast cancer. We have to get a biopsy to see if it’s still triple-negative.” But he just looked at me [and] said, “This isn’t good.” My husband and I both left in tears.

Chelsey: My mom, my grandmother, [and] my great-grandmother on my paternal side all had breast cancer. For me, it was the question of when and how long I have until this [will] happen.

I was suggested to get mammograms at 30 and I neglected to do that. At 32, I found a lump on the left side. I went in and I realized my nipple was inverted. I had a biopsy. They put a clip and everything was fine.

Fast forward one year later, I ended up finding a lump on the right side. Unfortunately, it was triple-negative.

I was completely shattered. I had a business. I had a lot of responsibilities. Being diagnosed at 33, I thought that my whole world had come crumbling down.

Having so many people in my family [diagnosed with breast cancer], I had what I thought was such a wealth of knowledge, but I had never heard of triple-negative.

Breast cancer treatment

Chelsey: I heard the term red devil before and when I heard that, that was when I was like, “Oh, this is really real. This is not just a joke or a simple little thing that might go away quickly.”

I did Adriamycin-Cytoxan and I made a lot of lifestyle changes. Being a hairdresser and standing behind the chair, I had to adjust my work schedule. Touching my legs after a day of work felt like I would shudder at just the tiniest touch, fall to the ground, and be ready for bed.

Janice: I had chemotherapy both times because, at the time, there weren’t any targeted therapies for triple-negative.

When you know you’re metastatic — you’re stage 4, it’s terminal, it’s incurable — I think at that point, you’re willing to endure just about anything because it’s your life.

Janice

Side effects from chemotherapy

Janice: I had a really rough time with my stage 1 treatment, which was Taxotere-Cytoxan. I had horrible mouth sores. I was very, very sick. I ended up having to get two dose reductions during that chemotherapy.

When I had Adriamycin, I didn’t end up requiring any dose reductions, but it made me pretty sick. It’s a really, really harsh chemotherapy. Adriamycin’s known as the red devil and it lives up to its name. It was really tough.

When you know you’re metastatic — you’re stage 4, it’s terminal, it’s incurable — I think at that point, you’re willing to endure just about anything because it’s your life.

Being 33, I wanted to be normal. I really wanted to put on a happy face, pretend I could get through this, and that everything was going to be okay.

Chelsey

Chelsey: The Adriamycin-Cytoxan was nasty. It was just not nice at all.

One side effect [was] peeing red. I’m like, “Okay, this is going through me really quickly.” And you just think, “What else is it hitting that fast?”

I didn’t have so much diarrhea. I had constipation from the steroids and from all the medication and that was the number one thing for me.

After you’re constipated for seven [or] 10 days, you get angry. You just really want it out of you so that was a really big struggle for me.

Being 33, I wanted to be normal. I really wanted to put on a happy face, pretend I could get through this, and that everything was going to be okay. Not being able to really open up and have the support that I needed definitely [affected] my relationships. I had support, but no one really knew exactly what it was like going through it. Feeling very lonely and disconnected from my community [and], at the same time, having them be there. That was really a struggle for me as well.

Janice: When I had the side effects from the Taxotere, I started with mouth sores.

My mouth was so tender. The mouth sores were on my gums, on the insides of my mouth, on the roof of my mouth, on my tongue, [and] in my throat. Anything hurt, even water. It hurt to drink it if it was cold, it hurt to drink it if it was too warm.

Even though I was on a soft food diet, everything burns. It stings and it’s painful. When they start going down your throat, then it’s not only painful when you’re trying to chew food, but it’s painful to swallow. And so you just decide to stop eating and even drinking.

I developed systemic thrush as a result. I went back and forth between all kinds of GI symptoms — diarrhea, constipation — and it would just go back and forth. I lost about 18 pounds in three months because I couldn’t eat.

When you’re dealing with GI side effects, you don’t know what to expect. One day, you may have horrendous diarrhea. Then you may not go at all for another four or five days. And so then you’re really confused. I treat the diarrhea and then I have constipation, then I have to treat the constipation, which then flips back to diarrhea. Your days just center around, Okay, which do I do? Do I treat diarrhea today? Do I take the chance that I don’t treat [it]? Because then I don’t want to get constipated.

When you’re dealing with GI side effects, you don’t know what to expect… I didn’t want to leave the house.

Janice

I didn’t want to leave the house because I didn’t know what to expect. Sometimes those bouts of diarrhea would come on suddenly and you certainly didn’t want to be caught out somewhere, you know? I didn’t feel like going out anyway.

My nose [and] my eyes ran constantly. I was miserable.

Finding out about dose reductions

Janice: I didn’t know about dose reductions. When I went to my oncologist for the third round, I think it was, he saw how sick I was and how awful my mouth and everything else was. I was just in terrible shape. He said, “We’re going to reduce your dose.”

It helped a little bit. But by the time I reached my fourth round, which was three weeks later, I still wasn’t well enough for him to feel comfortable giving me even that dose. So he reduced it [further].

Quality of life and longevity [are] the most important things I’m looking at. Being 38, I want to live as long as possible.

Chelsey

Chelsey: The prognosis of triple-negative and knowing the recurrence rate in five years was very heavy on my mind. Having had two grandmothers who passed away from metastatic disease, I was riddled with a great deal of fear.

At my one year, I noticed a small bump on my upper shoulder and I mentioned it to my doctor. Three months later, it wasn’t gone. It was still there and it was bigger.

I went on vacation and thought, All right, I’m going to enjoy myself on this vacation. But I booked a doctor’s appointment and sure enough, they immediately biopsy it that day.

The next day, I was getting a scan and had the tech basically say to me, “Well, you’re metastatic.” I remember laying there in the scanning machine and just lost it.

If this is what that is, which it sounds like it is, I was like, “Wow, what a terrible way to find out.” I said to my doctor, “I can’t believe the tech would even mutter those words to me.”

Sure enough, it was metastatic and I had another spot on my lung. My oncologist said, “We’ll just put you back on ACT.”

The knowledge that I do have from my mother and my family is many times, chemo is what kills people. I said, “Hell no. I’m not going back on Adriamycin-Cytoxan. There’s absolutely no way because how long am I going to have to live? I’m 34 years old.”

I started trying to put out feelers and figure out what my options were. I had to switch insurances, which was just a huge stress. And, of course, working to have my insurance to be able to then have care was just a terrible situation.

I had foundation medicine done and it opened me up. I have a somatic BRCA mutation so that opened me up to be on a trial for olaparib.

Initially, the side effects were extremely low. I had a couple [of] bouts of diarrhea, but I really tried to control a lot of that stuff with my diet. I basically had been on it for about two and a half years until infections. [In] 2021, I had shingles, impetigo, COVID three times, [and] E. coli twice. The actual personal side effects seemed low, but the infections and the susceptibility that I had to everything [was] just over the moon.

[After being on the olaparib for 1.5 years, she was seeing results]. Once I hit that mark, I said, “Why wouldn’t we titrate or pull things back? Because I’m well and I’m on a trial so it’s very regimented, it’s scheduled.” My doctors were like, “Oh,” at first.

Each appointment I kept going back, “Okay, I’m ready. Are we going to do this?” Finally, I think it had been a year, they went to the trial and requested a dose reduction.

Quality of life and longevity [are] the most important things I’m looking at. Being 38, I want to live as long as possible. I’m not really interested in having leukemia and all of these other comorbidities that develop from medication. So that’s the driving force for me asking for a dose reduction because I was in a place of success, I should say. Why would I continue to keep poisoning myself while it’s done its job at this point?

You have to self-advocate. You have to be okay with going to your oncologist and saying, ‘We need to talk about this,’ because it should be a decision between you and your oncologist.

Janice

Janice: I think a lot of people don’t even realize that they can ask for a dose reduction or they don’t know to go to their oncologist and say, “How can we better manage these side effects I’m having? How can we improve my quality of life? Because I don’t want to give up treatment, but at the same time, I’m not having a quality of life with the side effects that I’m having from the treatment.”

You have to self-advocate. You have to be okay with going to your oncologist and saying, “We need to talk about this,” because it should be a decision between you and your oncologist.

A lot of times, as good as they are at treating our cancer, our physicians don’t necessarily look at the whole person and how our lives are outside of treatment. What is the impact? Are we able to get out of bed during the day? Are we so fatigued? What are those side effects that are causing us to have such a poor quality of life?

The first is just to encourage patients to advocate for themselves. If they are having side effects that are really destroying their quality of life, they need to have that conversation.

Many patients that I’ve talked to [are] afraid to report side effects from their treatment because they’re afraid that their oncologist is going to pull them off treatment that’s working. They don’t want to complain. They don’t want to be seen as a whiner. But these are things that your doctor needs to know.

Clinical trials are quite different than when you’re just getting standard of care from your oncologist because those conversations occur between you and your oncology team whereas, in a clinical trial, you have a few more people that are involved.

But even when you’re in a clinical trial, you absolutely should be able to talk to the trial investigator or the person seeing you, whether it’s a nurse practitioner or just one of the nurses working with you in the trial. You can still report it to your oncologist as well.

These are things they need to know because side effects are reported in clinical trials. For patients who may receive that drug, if it’s FDA-approved down the line, we need to know those side effects. Were they mild? Were they moderate? How much did they impact your quality of life? That’s when we need to determine: is that dose the right dose really for that patient? Because if you reduce the dose and the quality of life improves and the side effects lessen, then we need to look at that a little more closely.

At the end of the day, what we’re looking at is personalized medicine: getting the right dose, the right drug, for the right patient. We don’t experience the same side effects from a drug.

Unfortunately, the new targeted therapies and endocrine therapies come in one dose. What we really need to start looking at is: Are they effective? Are they as effective at lower doses? Does that mean that patients could have a better quality of life and still have [the] quantity of life?

The toxicities would be less because we’re on this for life so you want to preserve as much of your organ function and your general health as you can. When you’re suffering from extreme toxicities and side effects from drugs, sometimes those either cause patients to discontinue treatment or the toxicities become so severe that their organ function is impaired. And that alone will lead to also a lesser length of life as well.

We’ve looked at this whole paradigm of maximum tolerated dose. Decades later, why are we still doing that? Why are we still pushing for the highest dose possible when we could possibly look at the optimal dose?

What is the optimal dose? If that means it’s lower, it’s still effective, and we’re creating fewer toxicities and patients can stay on the drug longer, patients will take the drugs because they’re not dealing with severe side effects, then it’s a win-win. At the end of the day, it’s a win-win for oncologists and for patients.

At the end of the day, what we’re looking at is personalized medicine: getting the right dose, the right drug, for the right patient.

Janice

Metastatic Breast Cancer Patient Stories

Sherrie shares her stage 4 metastatic breast cancer story

Sherri O., Metastatic Breast Cancer & Colon Cancer Diagnosis: Colon & Metastatic Breast Cancer Symptoms: Shortness of breath, lump under armpit, not feeling herself Treatment: Chemotherapy, Transfusions

April D., Metastatic Triple Negative, BRCA1+

Symptoms: Four lumps on the side of the left breast
Treatment: Chemotherapy (carboplatin, paclitaxel doxorubicin, surgery (double mastectomy), radiation (proton therapy), PARP inhibitors

Brittney shares her stage 4 breast cancer story

Brittney B., Metastatic Breast Cancer Diagnosis: Stage 4 Breast Cancer Symptoms: Lump in the right breast, inverted nippleTreatment: Surgery, chemo, immunotherapy, radiation

Bethany W., Stage 4 Metastatic

Symptoms: Lower back pain
Treatment: Chemotherapy, radiation, maintenance treatment

Abigail J., Stage 4, Metastatic

Cancer Details: HER2-low, node negative, PIK3CA mutation

1st Symptoms: Back and leg pain, lump in breast

Treatment: Surgery, chemotherapy, radiation, CDK4/6 inhibitors

Alison R., Partially Differentiated DCIS, Stage 4 Metastatic

Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in underarm/breast
Treatment: Chemotherapy, surgery, radiation, targeted therapy

Erin C., IDC, Stage 2B/4, Metastatic, Triple Negative

Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Pain in breast
Treatment: Surgery, chemotherapy, radiation

Shari S., Stage 4, Metastatic, Triple Positive

Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in breast
Treatment: Surgery, chemotherapy, radiation

Renee N., IDC, Stage 3-4, HER2+

Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump in breast
Treatment: chemotherapy, bilateral mastectomy, radiation

Marginal Zone Lymphoma (MZL) Non-Hodgkin Lymphoma Patient Stories

My Dad’s Cancer Journey: How He Inspired Me to Take Control of My Health

Post author By Katrina Villareal
Post date February 9, 2023
No Comments on My Dad’s Cancer Journey: How He Inspired Me to Take Control of My Health

My Dad’s Cancer Journey: How He Inspired Me to Take Control of My Health

Nick has persevered through a series of health challenges. After an agonizing 13 months, he finally got a diagnosis: IgG4-RD, a rare autoimmune disorder. Seven years later, this pseudolymphoma morphed into a rare type of non-Hodgkin’s lymphoma that only represents up to 2% of non-Hodgkin’s lymphomas.

As Nick tries to set an example for his 3 young children, it was the example that his father set for him as he was growing up that taught him how to prioritize his health.

They share the importance of finding a medical team that is a good fit for you, someone you can trust, and why you should always advocate for yourself.

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

Table of Contents

Introduction
What motivated you to prioritize your health?
Getting diagnosed with prostate cancer
Dealing with “scanxiety”
Understanding medical mistrust
From autoimmune disease to non-Hodgkin’s lymphoma
Words of advice

Don’t be afraid of the prognosis. Be afraid of not knowing and not doing anything about it. Medicine in today’s world can do a lot of things.

Harry

Introduction

Nick: First and foremost, I want to thank you guys because I wouldn’t be here today. You have supported me through so much.

I feel like because of the way that you raised me, the experiences, the patience, the forgiveness, all of those things [have] helped mold me into who I am today so I just want to say thank you. Thank you for being open to doing this because this is not something that we do typically as a family so it’s pulling us all out of our comfort zone.

Ultimately, it’s not about us. It’s about creating awareness and showing other people of color and just other people in general what this can look like and how important it is to have positive role models in your life. I don’t take that for granted so I just wanted to say thank you for that.

Nick with his parents on his wedding day

Gail: Oh, you’re more than welcome. We wouldn’t have done it any other way. We wouldn’t have had it any other way.

Nick: A big reason why this came up and why The Patient Story gave us this platform to do this [is] because I mentioned a big reason that I’m still here today is [that] I had you guys as positive role models in my life.

I always saw [you] go to the doctor [and] prioritize your own health so it was just something that was natural for me. As I’ve grown up [and] gotten to meet more people and [heard] what their experiences have been like, that is not the case for everybody and for a lot of people, unfortunately.

What a great opportunity for me to put a spotlight on this and just let people know how impactful and how imperative it is to your overall health, quality of your life, and longevity to prioritize yourself, to go get checked.

Going to the doctor was an inconvenience, but it wasn’t costly and it was for my own benefit.

Harry

What motivated you to prioritize your health?

Nick: What drove you to prioritize your health all of those years, [going] to the doctor and [getting] prostate exams in the middle of the workday?

Harry: That’s how I was raised. My parents didn’t have a lot of money so we used to go to the children’s hospital [in] my early years.

I was raised to go to the doctor and get a physical. Then being in the fire department, you always had to be physically sound.

When I went to Great America, [the] first thing they said was, “Hospitalization. We can get you.” I said, “Well, I got this.” And they said, “No, we’re going to give you ours as well.”

It’s been easy for me because I’ve always worked and always had insurance. Going to the doctor was an inconvenience, but it wasn’t costly and it was for my own benefit. And that’s why we raised you that way.

Just go to the doctor [and] get it checked out. [If] you start coughing, we’ll give you a little cough medicine. If that didn’t work, we’re going to the doctor.

It’s important that everybody gets a checkup. Don’t be afraid of the prognosis. Be afraid of not knowing and not doing anything about it. Medicine in today’s world can do a lot of things.

Good health and peace of mind are the two things that you need the most. Everything else is just like gravy.

Harry

Getting diagnosed with prostate cancer

Nick: You and I haven’t really talked too much about this. I never forget that you had cancer, but our experiences were vastly different.

You went all those years and got these exams. Did anything ever come up? Any signs or symptoms along the way?

Harry: It really was a shock to me, to be honest. I go to the doctor annually. If I got sick, I go to the doctor. I worked for that and the insurance is there so I would go.

I went for a routine [check and the] urology doctor says, “Something ain’t right.” They did a biopsy and he said, “You have prostate cancer.” So I said, “Well, what do we do?” And he said, “Well, you can live with it or we can take it out.” And I said, “Take it out.”

People make such a big deal of things that aren’t necessary to have a happy life. Good health and peace of mind are the two things that you need the most. Everything else is just like gravy on potatoes is what it is.

Nick: I love that.

Harry: That’s the gravy of life. So I got a little less gravy, but I still got life. It wasn’t a hard decision. It wasn’t an easy one, but I did what I thought was the right thing to do.

Nick: It’s so powerful to have both of you [as] examples [and] also you as a strong black man, prioritizing your health, and not letting whatever stigma or what other people think. That is why you’re still here with us and I’m extremely grateful for that.

You had surgery. They removed the prostate and I’m sure that that was extremely challenging as well. Can you share a little bit about that experience?

I was raised that God [doesn’t] give you burdens you can’t carry. So I just carry it, not worry about it.

Harry

Harry: The hardest part is when you get the diagnosis. When I prayed about it and thought about it, it wasn’t that big of a deal. I’m still here. I’m still living. I still have fun. Still got my wonderful wife.

It didn’t change my life. It didn’t make it worse. It didn’t make it better. It’s just something that happened. I was raised that God [doesn’t] give you burdens you can’t carry. So I just carry it, not worry about it. Wake up every day, happy to be alive. Got my faculties about myself. It’s a great day.

Gail: Because he acted so quickly and was going to the doctor, it had not gotten to the prostate wall.

They did not have to do radiation so that was great. Now we go every three to six months, depending on what his urologist says, and just [have] the PSA checked. We’ve got that coming up.

I don’t go to [the] doctor every time I get a cough or a sneeze, but I do get regular checkups. If they find something, we do what we can about it.

Harry

Dealing with “scanxiety”

Nick: One of the things that cancer survivors often continue to combat is test anxiety or scan anxiety.

Nick: You got to go quarterly and for some people, that’s a lot. It has them relive all of these things that were pretty traumatic.

I have developed different things in my own routine to handle that. Do you ever have any scan or test anxiety? Do you ever worry?

Harry: No, no. They say you need to come [to] get checked, I go get checked. That’s all I can do.

I’m not a doctor. I don’t know medicine so I can’t judge. If he says I need to be checked, I do it. It’s that simple.

[For] a lot of people, it’s denial. They don’t want to be sick so they try to deny it, put it off, or push it back. I’m not that guy.

I don’t go to [the] doctor every time I get a cough or a sneeze, but I do get regular checkups. If they find something, we do what we can about it.

Nick: This is what I do as well in between appointments and before I go in. We talk about managing our expectations, objective thinking, neutral thinking, [and] just telling yourself the facts.

The facts are I feel good. I have everything I need to win the day. I’m loved, I’m provided for, I’m safe, and, right now, to my knowledge, I don’t have cancer. No one’s told me that so I’m going to move and operate as if I don’t have cancer. If that comes up again, then we’ll deal with it when that happens.

But often, that scan anxiety and test anxiety can just manifest. Honestly, I feel like sometimes that can lead you back into a resurgence of cancer because you’re living in a state of toxic stress and anxiety.

Gail: The negativity.

Nick: As I continue to learn more about this, when you’re in a state of toxic stress and worrying about things that you can’t necessarily control, your immune system’s down and you create an environment for disease to come back up.

A lot of the stuff that just fills me up and that has helped me get through the trials of my own life.

You are rooted in everything that I do — the way I move, the way that I think, my tattoos — all of it. I’m extremely grateful and I love that it comes from you guys.

When you do find somebody, you stick with them because then you develop that rapport, that trust.

Nick

Understanding medical mistrust

Nick: I don’t want to assume or generalize, but as I think about medical mistrust and the fear of going to the doctor, from my understanding [and] knowledge of history, black people haven’t always been treated the best in the medical community. We were the subject of test experiments for years and that just doesn’t go away. What can be done? Where is that mistrust rooted?

Harry: I recall the segregationist when I was growing up. But my father always wanted us to have the best, so he fed us and took us to the doctor to make sure we were healthy.

You just have to put your trust in the doctor that you have. When I came back from the military, my mother’s doctor [became] my primary care physician. After a while, he told me, “I got a new guy coming on. You guys could grow up together,” and he’s still my doctor to this day.

We had a great relationship. I tell him, “Just tell me like it is. Tell me what it is and what you recommend.” I put my faith in him.

Nick: That’s the only doctor I know you’ve ever seen.

Harry: Yeah. He’s good. My mother always made sure we got a physical every year. If we got a cold or cough, my dad would try to treat us with his remedies. My mom said, “I’m taking him to the doctor.” That’s how I was raised so I don’t have a problem with doctors.

Gail: I think, too, that you do have to just trust.

I’ve said many times: every doctor is not a fit for everybody, but you shop until you find somebody who is a fit for you and then you put your trust in that particular doctor. If you don’t trust them, then move on and find somebody else.

For the most part, doctors are in that field for the right reasons. You have to trust that they’re going to do the best [for] you. I don’t care if you’re red, white, black, green, or yellow. You have to put your faith in the doctors and in God. God will take care.

Every doctor is not a fit for everybody, but you shop until you find somebody who is a fit for you and then you put your trust in that particular doctor.

Gail

Nick: That’s great. I love that because that is the same thing that you taught me about advocating for myself as well. If you don’t feel comfortable with a certain doctor or you don’t like the way the visit went, that doesn’t mean that you have to stay with that doctor.

[It’s] the same thing with therapists. Just because I didn’t have the best experience with this therapist in this city [at] this time on this date doesn’t mean all therapists are bad. It doesn’t mean all therapists don’t get me. It doesn’t mean that therapy doesn’t work.

It just means that I need to continue to advocate for myself and continue to look. Then when you do find somebody, you stick with them because then you develop that rapport, that trust.

plasma transfusion before heart surgery at the Mayo Clinic in 2014

Shelby and Nick week before Mayo Clinic 2014 - Taste of Cincinnati

From autoimmune disease to non-Hodgkin’s lymphoma

Nick: I think that was in July 2013 when I first got sick and went to the hospital. They told me my heart was enlarged, my prostate was enlarged, and I needed to go to the cardiologist right away [and] cease physical activity and sports. Everything right after that kind of picked up.

It wasn’t immediate but that triggered a domino effect of going to the doctor almost every month. I was getting sick with different things.

Autoimmune diseases impact everyone differently in different ways and can sometimes be tricky to diagnose. But one of the things that I think you guys will both remember — and I know you could definitely have empathy for — was that discouragement of going to so many different appointments, getting surgery to remove lymph nodes, bone marrow biopsies, and then not having conclusive results, not having a diagnosis. It would have been easy to kind of cash it in.

I told Shelby at one point, “You shouldn’t be going through this. Nobody deserves to go through this. I don’t want you sitting in doctor’s appointments. We’re kids.”

But nobody gave up. Even when I had lost my steam sometimes, my support system — you guys and Shelby — always motivated me to continue to go. [You even] drove me if I didn’t want to go.

Nobody had given me anything to make me believe that they were going to be able to cure me or help me figure this out.

Nick

That was a learning experience in itself. Having the procedures done [at the Mayo Clinic], the full body plasma transfusion, another bone marrow biopsy, and then them sitting us down like, “Hey, we’re going to do surgery on your heart,” and then talking to us about the statistics and risks and having to sign papers.

Nobody had given me anything to make me believe that they were going to be able to cure me or help me figure this out. I remember almost bargaining with God and just like, “If you get me out of this, if I can at least make it through this heart surgery, I will change how I’m living. I will try to get better.”

I was fatigued. I was drained. I didn’t have the mental capacity. I didn’t have the physical energy to be able to ask good questions. I didn’t even know what to ask. I didn’t know what this looked like, what you’re supposed to do, or how you’re supposed to go about this.

You don’t get a handbook that says, “Here’s how you should go about this. These are the question you should ask,” so having someone like you who is anal about that kind of stuff was a game changer. I’m sitting there, embarrassed, I’m like, “Ask one more question, please. Can we just go?” But that is what you do need. [Having] you doing that is huge.

Gail: They treated you with chemo.

Nick: But I wasn’t a cancer patient, so I didn’t fit into a support group. I had you guys, but I didn’t have the resources of being in a cancer support group, even though I was being treated and talked to as a cancer patient, and being told I had lymphoma, which was difficult.

Then now [I] have a type of non-Hodgkin’s lymphoma that only represents up to 2% of non-Hodgkin’s lymphomas. I’ve been [an] interesting case before. I’m already a case study at the Mayo Clinic. I already understood that I was like hitting the lottery. Now I happen to be his only patient that had the IgG4 mutate into a full-blown lymphoma, also [a] rare type of lymphoma.

But I trusted him and I trusted Dr. Islas. Even though I got the understanding of stage 3-4, I never thought was going to die. I knew because I had done so much work investing in myself: getting sober, going to therapy, and working on myself emotionally, mentally, spiritually, [and] physically. It was almost like I personally believe my higher power got me ready to go to war to be able to face this.

mediastonoscopy recovery at the Mayo Clinic in 2014

Keep good notes and ask good questions. It’s your health. Advocate for yourself.

Nick

Words of advice

Nick: Keep good notes and ask good questions. It’s your health. Advocate for yourself.

Gail: Be diligent. With [the] insurance system, you had to keep going back and forth with them. I think that’s why some people give up and don’t want to fight. You have to be diligent about it. You have to keep in touch with the insurance companies.

At one point, when they told you that insurance wasn’t going to pay for the Rituxan, you could have easily just said, “Okay, well,” but you didn’t. You fought with it and your doctors because you trusted in the doctors.

You stayed on it. You stayed on it and your doctor stayed on it so that you were able to get help.

You can’t give up. I tell the little guys all the time, “We’re Mundys. We don’t give up.”

Harry: We don’t quit.

Nick: Yeah, Mundys don’t quit. But you’re absolutely right.

If I’m being completely honest, another reason why I went a full year without it was [that] I was defeated. I was so pissed off. I felt like a victim. It’s like, “How do I, the patient who is going through hell, have to sit and be the middleman between the insurance company and the big hospital when the hospital made a mistake [in] billing for an injection?”

They coded it as an injection because that’s the standard of care that most people were getting. I was only approved to get it intravenously so when they billed me for an injection, which was not what I received, I got stuck with a $20,000 bill. The insurance people are like, “Well, you got to pay this,” and I’m like, “I’m not paying this.”

I had done that for years before because it had happened multiple times. At that point, in the middle of COVID and all, I was being naive, too. I’m like, “I’m good. I don’t want to deal with this.” But once again, my doctor stayed [with] me.

That is why I have been able to accomplish what I’ve been able to accomplish. That’s why I’m where I am today. I know that you guys are definitely proud.

I hope that you guys are here and I hope I’m here long enough to continue to see the fruits of your labor and all of the stuff that you have continued to just invest in me and see other people benefit. It’s extremely profound when you think about it. I’m just extremely grateful for it.

Harry: You’re a good man. I love you. You really are. I’m very proud. You’ve been through a lot and you kept your head up. Never heard you complain. I’m thrilled to be sitting here with you today. I don’t want to get emotional so I’m going to stop.

Gail: We love you and [are] very proud of you. We just want to see Mundy Mindset continue on with the next generation.

Nick: We got three great ambassadors in the making.

That is why I have been able to accomplish what I’ve been able to accomplish. That’s why I’m where I am today.

Nick

Marginal Zone Lymphoma Patient Stories

The Importance of Positive Role Models

The example that Nick's father set for him as he was growing up taught him how to prioritize and advocate for his health.

Nick M., Nodal Marginal Zone Lymphoma

1st Symptoms: Daily hives, GI issues, weight loss, heart issues, night sweats

Treatment: Rituxan (rituximab) and high-dose steroids

Kimberly O., Marginal Zone Lymphoma

1st Symptoms: None at first, routine blood work showed suspicious results, bad nosebleed
Treatment: Chemotherapy (bendamustine & rituximab)

Rachel P., Marginal Zone Lymphoma, Gastric MALT

1st Symptoms: Fatigue, bloating, stomach pain
Treatment: Chemotherapy, targeted therapy, surgery

Multiple Myeloma: How Your Race and Age Can Affect Diagnoses and Treatment

Introduction

How do we get more diversity in clinical trials?

How would you advise older multiple myeloma patients to stay positive?

How do you build medical trust in Black communities?

Barriers patients face that prevent their care

Conclusion

More Medical Expert Interviews

Tatijane’s Acute Lymphoblastic Leukemia Story (ALL)

Introduction

Pre-diagnosis

Initial symptoms

Feeling like there was something more there

Getting the official diagnosis

Possible environmental cause

Not getting answers when you know something’s wrong

Official diagnosis

Treatment

Treatment plan

Double CAR T-cell therapy clinical trial

The process of joining a clinical trial

Bone marrow transplant

Side effects

Managing the side effects

Mental health

Reaction to PTSD diagnosis

Taking care of mental health

Words of advice

Advocating for yourself

Giving back through participating in clinical trials

Inspired by Tatijane's story?

Acute Lymphoblastic Leukemia Stories

Burt’s Pancreatic Neuroendocrine Tumor (PNET) & Kidney Cancer Story

Introduction

Pre-diagnosis

Initial symptoms

Diagnosis

Getting the official diagnosis

Reaction to the diagnosis

How other people react to the diagnosis

Treatment

Treatment plan

Side effects from treatment

Distal pancreatectomy for PNET

How did your cancer treatment affect your mental health and emotional well-being?

Death and cancer

Importance of a positive mindset

Words of advice

Inspired by Burt's story?

Neuroendocrine Tumor Stories

Karen’s Stage 1 High-Grade Urothelial Cancer Story

Introduction

Pre-diagnosis

Initial urothelial cancer symptoms

Urothelial Cancer Diagnosis

Treatment

The importance of advocating for yourself

How did you find another doctor?

What treatment did you undergo?

What challenges did you go through during urothelial cancer treatment?

Words of advice

Trying to not take it on all yourself

Resources to help with the financial burden of cancer

Taking care of your mental health

Staying positive

Inspired by Karen's story?

More Bladder Cancer Stories

CLL: The Latest in Treatment and Research

What Patients and Caregivers Need to Know

BTK inhibitors: choosing the right drug for the right patient

Ibrutinib

Venetoclax + ibrutinib

The importance of getting an infusion vs. oral medications

What is the advantage of a third-generation BTK inhibitor?

New data on Richter’s Transformation

CAR T-cell therapy

Chronic Lymphocytic Leukemia Patient Stories

DLBCL: The Latest in Treatment and Research

What Patients and Caregivers Need to Know

Introduction