Author: Katrina Villareal

Melissa’s Life After DLBCL Relapse: Finding Strength in the In-Between

Post author By Katrina Villareal
Post date July 30, 2025
No Comments on Melissa’s Life After DLBCL Relapse: Finding Strength in the In-Between

Melissa’s Life After DLBCL Relapse: Finding Strength in the In-Between

August 5, 2025

Melissa’s experience with diffuse large B-cell lymphoma (DLBCL) isn’t just about scans and chemotherapy but what comes after relapse. Diagnosed at just 30 years old, Melissa never imagined the lump in her breast would lead to a life-altering diagnosis, let alone a relapse nearly six years later. DLBCL, aggressive and fast-growing, quickly reshaped her world—twice.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Her first encounter with DLBCL was frustrating and terrifying. Doctors initially diagnosed her with an infection, but the prescribed antibiotics made everything worse. When she ended up in the ER, a CT scan finally led to a biopsy and a phone call that changed everything.

Melissa’s initial treatment was intense. Six cycles of R-EPOCH chemotherapy and 20 rounds of radiation therapy left her physically and emotionally drained. Side effects like bone pain and severe fatigue made everyday life nearly impossible. She pushed through but never stopped feeling afraid, especially before every scan. That lingering fear of relapse haunted her, even when she was trying to live as fully as possible.

And then the relapse came.

Just after Christmas 2023, a painful lump under her arm set everything in motion again. This time, Melissa had to undergo a stem cell transplant, preceded by grueling high-dose chemotherapy. The process was not just physically taxing but also mentally and emotionally overwhelming. From losing her job to navigating endless appointments, to being isolated due to a wiped-out immune system, life after relapse never went back to “normal.”

Melissa describes feeling deep depression after her transplant. She expected to feel joy, but instead, she felt stuck. Recovery wasn’t just about healing her body; it meant rebuilding her mental health, confidence, and ability to trust her body again. Slowly, she emerged. She reconnected with family, leaned on her incredible support system (shout out to her sister!), and began doing the things that bring her joy.

Melissa continues to deal with anxiety around scans (scanxiety), but she’s more focused on living than worrying. She emphasizes the importance of self-advocacy, especially when less likely diagnoses, like DLBCL, aren’t immediately considered. Her story is an honest, empowering reminder that survivorship doesn’t mean everything is fine. Life after relapse is complicated, but it’s also filled with second chances and deeper appreciation for the everyday.

Watch Melissa’s story to find out more about:

What gave her the strength to keep going when everything changed
When she realized that her voice mattered
Who became her rock through every scan, treatment, and tough moment
Why she decided to share the hardest parts of cancer
How she rebuilt her life after her DLBCL relapse

Name: Melissa B.
Age at Diagnosis:
- 30 (relapsed at 36)
Diagnosis:
- Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms:
- Lump in the left breast
- Persistent rash (started near the belly button and spread)
- Intense fatigue and energy loss
Treatments:
- Chemotherapy: R-EPOCH
- G-CSF: Neulasta (pegfilgrastim)
- Radiation therapy
- Surgery (to remove scar tissue and necrosis)
- Autologous stem cell transplant

Thank you to Genmab and AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents

Introduction
When Something First Felt Off
I Experienced Other Symptoms
Finding Out I Didn’t Have an Infection But Needed a Biopsy
The Moment Everything Changed
My First Treatment Plan
What Life Was Like Between My Original Diagnosis and Relapse
A Second Lump Appeared
Finding Out the Cancer Was Back
The Only Time That I Ever Feared Relapse Was Right Before a Scan
Navigating DLBCL Relapse with My Loved Ones Was Hard
The Plan Moving Forward
How I Prepared for My DLBCL Stem Cell Transplant
What Recovery Looked Like After My Stem Cell Transplant
How Treatment Impacted My Day-to-Day Life
What Survivorship Looks Like for Me
I Still Experience Anxiety Before Scans
What I Want Others to Know
Why Self-Advocacy is So Important

I noticed a lump in my left breast… I went to my primary doctor. She ran some blood work, told me I had an infection, gave me some antibiotics

Introduction

I was diagnosed with diffuse large B-cell lymphoma twice. The first time was in 2017 and unfortunately, I relapsed in January 2024.

I’m a concert junkie, so I go to as many as I can afford to. I love tattoos and have quite a few. I have five cats who are my children. I love them. I like riding roller coasters. I love going to karaoke. I play video games. Sometimes, I enjoy relaxing and watching a movie.

When Something First Felt Off

I noticed a lump in my left breast. The kind of cancer I have is very aggressive and grows very quickly, so it went from a little lump to twice the size within a couple of months.

I went to my primary doctor. She ran some blood work, told me I had an infection, gave me some antibiotics, and sent me home. She even joked at one point and asked if I had a breast implant on one side because it was so much larger. That joke left a bit of a sour taste in my mouth.

I took the antibiotics, but I got worse. I was freaking out, so I called my mom and she said, “Go to the emergency room. They’ll probably lance the infection. You’ll be fine.”

I Experienced Other Symptoms

I got a bad rash, which is very common with lymphoma. It started around my belly button. At first, I thought I was allergic to the metal in my belt buckle. Then it started going down my back and my legs. I thought I was allergic to my laundry soap or body wash, so I started switching everything to unscented. I thought it was an allergy, so I put cortisone cream, but nothing was working.

I was also incredibly tired all the time. I didn’t want to do anything. All I wanted to do was go home to sleep. I wasn’t the sleepy kind of tired. I was drained and had no energy, so I didn’t want to do anything. I thought I was experiencing the usual side effects of having an infection. I wasn’t having fun. I was going to bed super early. I was taking naps. The rash didn’t hurt, but it itched and there was nothing I could do to relieve the itching.

I didn’t think it was serious. I was 30 years old. Cancer doesn’t cross your mind at that age.

Finding Out I Didn’t Have an Infection But Needed a Biopsy

When I took the antibiotics and my symptoms got worse, I got scared. The doctor told me what to do, which I did, but it didn’t work, so I decided to call my mom. My mom was trying to calm me down, telling me everything was fine, and to go to the emergency room so they could take care of me.

They did a CT scan. When the doctor walked in and said, “It’s not an infection,” cancer never crossed my mind. They gave me a request for a biopsy and told me to have it done immediately. I thought it was weird. At the time, I didn’t think it was serious. I was 30 years old. Cancer doesn’t cross your mind at that age.

I set up an appointment and, luckily, they had one available in a couple of days. When he walked into the room, he looked at me and said, “Did they tell you that you might have breast cancer?” Cancer wasn’t even in the realm of possibilities and that’s the first thing he said to me. I started bawling. He left the room and the nurse came over and comforted me.

When he came back, he explained what he was going to do. He showed me the giant needle that they were going to use to collect the sample for the biopsy. The procedure was ultrasound-guided, so I watched everything. He was professional, but for subsequent things that I needed a surgeon for, I specifically requested not to have him again.

The Moment Everything Changed

I heard back about a week later. It was a Monday morning and as I was getting ready for work, I got a call from Virginia Oncology Associates. They said, “We need to schedule an appointment.” I said, “May I ask why?” They said, “Oh, have you not talked to the surgeon yet?” I said, “No, I hadn’t heard from them yet.” It was an awkward conversation.

As I was on the phone with them, I got a call from the surgeon. He doesn’t have me come into the office but tells me over the phone. He said, “It’s not breast cancer, but you have this other type of cancer.” It took a minute before the tears began to fall. I went back to the other call and made the appointment with the oncologist.

After I hung up, I called my boss. I had been telling my boss about what was going on and my boss said, “You’re not coming to work today. Go be with your family.” I went to my mom’s house and shared the news. It was difficult to tell people.

I knew lymphoma was a type of cancer, but I didn’t know specifics about it. People are aware that cancer exists, but the various types aren’t widely known. I had no idea what to expect. I didn’t know what it would look like. I wasn’t sure I would be okay. I don’t know what kind of treatment. I knew nothing.

Every time I got a scan, I would get nervous a week or two before getting one.

My First Treatment Plan

My first treatment regimen was R-EPOCH. I had a port put in and I was in the hospital to receive chemotherapy for 24 hours over four days. They would give me 15 minutes off in between bags of chemo to take a shower. I would get premeds to try to help with the side effects and then I would get hooked up to another bag. On day five, I received rituximab. I would go home and get two weeks off in between cycles before I had to go back and do it again. I had to do that six times.

After each round, they gave me a shot of Neulasta (pegfilgrastim), which is designed to boost the immune system. For me, it felt like every bone in my body was breaking at the same time. It hurt badly. I took pain medicine, but nothing worked.

After chemotherapy, I did 20 rounds of radiation.

(Editor’s Note: R-EPOCH is an abbreviation for a chemotherapy combination used to treat certain types of non-Hodgkin lymphoma. It includes the drugs rituximab, etoposide phosphate, prednisone, vincristine sulfate [Oncovin], cyclophosphamide, and doxorubicin hydrochloride [hydroxydaunorubicin]. -National Cancer Institute, )

What Life Was Like Between My Original Diagnosis and Relapse

Anytime I got a rash or noticed anything off, I freaked out. I ended up getting another lump on my right breast at one point, so I went to the surgeon, but it turned out to be a fibroid. Everything was fine, but with every little thing, I was terrified.

I tried not to let it overwhelm me too much. Every time I got a scan, I would get nervous a week or two before getting one. I would freak out that something was going to show up and, thankfully, nothing ever did.

My very first follow-up scan showed scar tissue and necrosis, so they had to do surgery. After that, everything was perfectly fine. Anytime I would see scan results, I would always ask, “What does this mean? Is this bad?”

I try to live life to the absolute fullest, enjoy myself, and not let the little things bother me. I do things I’ve always wanted to do. I’m planning a trip that I’ve always wanted to go on. I’m going to start doing things on my bucket list because I think I’ve earned it.

I kept trying to tell myself that I would be fine. The first time I got diagnosed, I believed that I was fine. Now, it’s hard to tell myself that I would be fine because the first time, I wasn’t.

I was still hopeful. Though in the back of my mind, I knew that it could be DLBCL again.

A Second Lump Appeared

Right before Christmas, I started noticing a painful lump under my right armpit. I decided to have it checked because it hurt so badly. I went to the ER the day after Christmas, but they did nothing. They didn’t scan it, test it, or do blood work. I waited for four hours only for the doctor to see me for about 45 seconds and say, “Go see your surgeon.”

At that point, I was having scans every two years. I started having them every six months, then every year, and then every two years. I had a scan about eight months prior, but there was nothing. Again, this disease pops up and grows very quickly, so it could be nothing and then a week or a month later, there it is.

I had always been told that tumors do not hurt, which is true. Tumors themselves do not cause pain, but this lump hurt badly, so I thought maybe it was something else. Even when I went to see the surgeon, he agreed. He said the fact that it hurts is a good sign.

I was still hopeful. Though in the back of my mind, I knew that it could be DLBCL again. But I was past the five-year mark, almost at six years.

Finding Out the Cancer Was Back

Luckily, I was able to see him within a week. He did a biopsy, but this time, instead of the giant needle, they removed a lymph node from under my arm.

I got my biopsy results on MyChart. I was at work when I got the notification. I decided to take a look. When I read it, I thought, “This can’t be right. Are these my old test results?” I checked the date and saw that it was current. Then I broke down right in front of my boss. We talked for a little bit and he told me to go home, so I left for the day.

I called the surgeon’s office and, luckily, he called me back pretty quickly. He said, “It wasn’t what we were hoping for.” They gave me a referral back to the oncologist. I originally saw the same oncologist, but because they recommended that I do a stem cell transplant, I had to go with a different doctor.

I wasn’t ready to die, so I was going to do whatever the doctor told me to do, no matter how bad it sucks.

The Only Time That I Ever Feared Relapse Was Right Before a Scan

The only time that I ever feared relapse was right around a scan. I was afraid they would find something. Other than that, I tried hard not to think about it too much. If you’re constantly thinking about it and worried you’re going to get it again, it’s going to eat you alive.

They said to keep an eye out for the symptoms that I had. They also said that relapse occurs mostly within the first two years. It can come back after that period, but the first two years are the critical time.

Navigating DLBCL Relapse with My Loved Ones Was Hard

After I came home, I called my husband immediately, then called my mom. I was crying the whole time. I was scared. I didn’t know what was going to happen. Was it going to be as brutal? Was it going to be more aggressive because it’s the second time? How is this going to progress?

I had moments at night when I’d be lying with my husband and I would break down and say, “I can’t do this. I don’t want to do this. This isn’t fair.” But at the end of the day, I wasn’t ready to die, so I was going to do whatever the doctor told me to do, no matter how bad it sucks, and I’ll get through it. I still have a lot of life left to live.

I had a couple of close friends who were very supportive. My older sister lives 20 minutes from me and she is my absolute best friend in the entire world. She was there when I did chemotherapy the first time. She was with me in the hospital almost every morning. We would have a list of questions and when the doctor would come in, we would talk about them together. She went the second time when I did the stem cell transplant. She was there all the time. She is my ride or die. I love her to death.

‘There are different second-line treatments for relapse and stem cell transplant is one of them. We feel you’re a good candidate for it.’

The Plan Moving Forward

I talked to Dr. Burke first and he said, “There are different second-line treatments for relapse and stem cell transplant is one of them. This is going to be your best course of treatment because not everybody qualifies for that. We feel you’re a good candidate for it. Your body is strong enough to handle it, so we want you to do this. We think it’s your best chance of getting rid of this for good.”

They went in-depth. He introduced me to the new doctor who took over from there, who was also wonderful. His name is Dr. Simmons. He’s an amazing man. He’s very detailed. Anytime we went over anything, he would write it out. He drew charts, which I always appreciated because I’m a very visual person.

My medical team was pretty thorough. When they recommended it to me, they explained it in detail. They told me what was involved, how it worked, and how it’s recommended for certain situations.

I also learned not to research too much because though the Internet is full of knowledge, it’s also full of crap. When you try to Google your symptoms, everything comes up as cancer. It’s the same thing once you already have cancer. Everything looks awful. You’re going to die. You’re going to have all these horrible side effects. I limited my research because when I didn’t, I scared the crap out of myself.

How I Prepared for My DLBCL Stem Cell Transplant

To prepare for the process itself, they had to do a bone marrow biopsy to make sure my stem cells were cancer-free and everything was fine. I had to have my entire body examined from head to toe. I had to get dental clearance. They had to make sure that my body was strong enough to handle the chemotherapy and the transplant.

Before they do the transplant, you have to undergo six days of high-dose chemotherapy to wipe out your system because the transplant is like a restart. You have to make your body handle that because it’s hard. I was sick.

When they take out the stem cells, you sit in a room and can’t leave for about six hours, where they hook you up to a machine. I had the port on one side and a big catheter with tubes hanging out on the other side, which I had for weeks beforehand and had to be covered with a bandage.

The machine takes your blood out. It has two tubes. In one tube, the blood comes out and goes through the machine. It takes out the stem cells and then, through the other tube, the blood goes back. Someone comes in once in a while to check on you. Once they have your stem cells, they send them off.

They have to test the stem cells, make sure that they have enough and that they’re good to use. If they don’t get enough, you have to go back another day or however many days until they get enough. Thankfully, I got enough from a single apheresis session because it was horrible having to sit in a chair for six hours. It was so boring and the machine is loud.

Then you’re admitted to the hospital to undergo chemo. When it’s time for the transfusion, they bring your stem cells, which are frozen in a bag, and thaw them out. But it’s still cold and I could feel it while it was entering my body. The transfusion only took a few hours. They monitor you in the hospital for a while. I was there for two and a half weeks.

I didn’t know that when you do a stem cell transplant, it resets your immunity, so I had to get all of my immunizations all over again.

What Recovery Looked Like After My Stem Cell Transplant

Recovery took a while because I was in the hospital for two and a half weeks. I barely got out of bed, so it messed up my back. I couldn’t walk very well for a while. I had to go to physical therapy and a chiropractor for several months to try to regain some strength and fix my back.

I had to quarantine for a while until my immune system started rebuilding. I had to stay away from people. I was on so many medications. I recently stopped taking an antiviral.

The first anniversary of my transplant was on July 8, 2025. They said I had to take the antiviral for a year and now I don’t, so that’s one less pill I have to take. I didn’t know that when you do a stem cell transplant, it resets your immunity, so I had to get all of my immunizations all over again. Six months after the transplant, I’ve had four appointments, wherein three of them were six shots each.

I have to get a few more. Some are live vaccines that they can’t do within the first two years of the transplant. I still have a couple of appointments sometime in the summer of 2026 to get more shots, but I’m done this year. I was so excited. The last appointment I went to, when she said, “You’re done for the year,” I did a little dance.

I still have a lot of doctor’s appointments. I get blood draws very regularly and get scans every six months. I had one done in May 2025 and it came back totally clear. My doctors’ appointments are starting to slow down. For the first few months, it seemed like I had an appointment every week or two. I was constantly doing something.

How Treatment Impacted My Day-to-Day Life

I tried to do the treatment while working, but I was taking so much time off from work because I got so sick from the treatment. I ended up losing my job, so I was out of work for a little over a year. I only recently started working again.

It’s hard. The first time around, because of the intensity of the treatment, there was no way I could work. By the second time, I tried to continue working, but I was so sick that I was missing so much work.

There are things outside of treatment that aren’t talked about enough, especially after finishing treatment. It’s not the end of it. There are still challenges. You’re still sick. You’re still dealing with doctors’ appointments. You’re still dealing with bills. Even with insurance, medical bills can get crazy and there’s a lot that you don’t think about. Navigating life with no immune system, I would be afraid to leave my house because a cold could take me out.

Getting anxious about it isn’t going to help the situation. It’s going to happen if it’s going to happen. If it’s not, it’s not.

What Survivorship Looks Like for Me

I went through a deep depression for a little while. After I finished, I thought I would be happy and celebrate, but because I was confined for so long, I couldn’t go out. I’m stuck and can’t do anything.

Once I was finally rebuilding, starting to get my immune system back, and able to venture out a little more, I came out of it and now I’m enjoying and living life to the fullest. I go out as much as I can. I see my family and friends. I do everything that I can.

I appreciate my family and my friends. I appreciate things more than I used to, like doing normal everyday things such as going to the grocery store. When you go through a time when you can’t do those things, they mean a lot more. Things on my bucket list that I’ve always wanted to do are much higher priority in my life now.

I Still Experience Anxiety Before Scans

I still feel a little bit of anxiety, but it’s not as bad as the first time around. At this point, getting anxious about it isn’t going to help the situation. It’s going to happen if it’s going to happen. If it’s not, it’s not. There’s no point getting worked up over it.

I’ve only had two scans so far. I had my remission scan in October 2024 and then a follow-up scan in May 2025. The only thing I hate is having to drink barium. There are different flavors, but they don’t help. It’s like a runny, chalky yogurt. It’s awful. And you have to do it every scan.

I don’t mind the scan itself. MRIs are loud and scary, so I don’t like them. PET and CT scans are fine. It’s just the barium. I hate the barium.

If you feel that something is up, even though they tell you that you’re fine, go to see a different doctor.

What I Want Others to Know

During DLBCL treatment, life sucks. There’s no way around it. They give you all kinds of medications to help with the side effects, but it’s going to suck. You’re going to be tired. You’re going to be sick. But know that there is an end to it all. It gets better. You come out the other side. Most people have a completely different appreciation for life and I definitely did.

The only thing that’s weird for me is when I go to doctors’ offices and you have to fill out forms that ask if you’ve ever had cancer before and I have to check yes. That still weirds me out.

Why Self-Advocacy is So Important

Don’t give up. You have to be your own advocate because nobody else will. People in the medical field do their best, but a lot of the time, they’re so far removed from it because they don’t want to get overly emotional. It seems they don’t put their best foot forward when it comes to that. It almost seems like you’re just a number.

It hurts and it sucks that that’s the truth. Especially in the ER, they have to get you in and out. But if you feel that something is up, even though they tell you that you’re fine, go to see a different doctor. Do something else. You have to be your own advocate.

Listen to your gut. Don’t always listen to the doctors. Listen to yourself. You know yourself better than anybody else knows you. I’m living proof of that.

Thank you to Genmab and AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Melissa!

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How Getting a Second Opinion Saved Crystal’s Life After a Rare Soft Tissue Sarcoma Diagnosis

Post author By Katrina Villareal
Post date July 25, 2025
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July 25, 2025

How Getting a Second Opinion Saved Crystal’s Life After a Very Rare Soft Tissue Sarcoma Diagnosis

Crystal is the kind of person who lights up a room — bubbly, energetic, and always smiling. But in February 2022, her world shifted when she started having severe trouble urinating. What started as one uncomfortable ER visit turned into a life-changing realization: she had a malignant peripheral nerve sheath tumor (MPNST), a very rare type of soft tissue sarcoma tied to her neurofibromatosis type 1 (NF1).

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Doctors initially thought it was a urological issue. After being catheterized twice, Crystal pushed for more testing. When her request for a CT scan was denied, she advocated fiercely for herself until they agreed. That scan revealed a mass. It was a shocking moment that would eventually lead to the correct diagnosis of MPNST sarcoma, a type of cancer that requires highly specialized care.

Despite discomfort with change and loyalty to her first care team, Crystal followed her instincts — and the advice of supportive family and friends— and got a second opinion. That decision changed everything. Her new sarcoma specialist reviewed all her records and immediately diagnosed her with MPNST sarcoma, which aligned with her NF1 diagnosis.

Not only did this doctor explain the cancer more clearly, but he also had a complete surgical plan laid out at their very first meeting. Crystal finally felt seen, heard, and, most importantly, safe. That second opinion gave her more than just answers; it gave her a confident path forward for treating her MPNST sarcoma.

Crystal’s surgery was complex and intense: a procedure that included bladder and rectum removal, a permanent colostomy and urostomy, and reconstructive work. Recovery was rough, both mentally and physically. However, Crystal managed to get through it by staying informed, engaging with online communities, and learning how to adapt to her new normal. Social media became unexpected lifelines for practical advice and emotional support. Navigating life after MPNST sarcoma isn’t easy, but Crystal found strength in unexpected places.

Crystal is now nearly three years cancer-free. She emphasizes how essential it is to advocate for yourself, ask questions, and not be afraid to speak up, even if doing so feels uncomfortable. Her story highlights how vital it is to meet with a doctor who specializes in your specific cancer, especially with rare cancers like MPNST sarcoma. A second opinion didn’t just help; it gave her a real shot at living her life again.

Watch Crystal’s full video to find out more about her story:

Hear how a wrong diagnosis nearly changed everything and how Crystal uncovered the truth about her MPNST sarcoma.
Find out why she pushed for a CT scan and how speaking up became her most powerful tool.
Learn how social media and community support helped her face life after surgery with two ostomy bags.
Discover why choosing a sarcoma specialist made all the difference in Crystal’s care.
See how Crystal’s second opinion gave her not just a new diagnosis but a real plan and peace of mind.

Name: Crystal S.
Age at Diagnosis:
- 29
Diagnosis:
- Malignant Peripheral Nerve Sheath Tumor (MPNST)
Symptoms:
- Inability to urinate
- Intense pain due to inability to urinate
Treatments:
- Chemotherapy
- Surgeries: cystectomy (bladder removal), proctectomy (rectum removal or Barbie butt surgery), permanent colostomy and urostomy, partial hysterectomy, reconstruction

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Crystal!

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How Speaking Up Led to Drea’s Rare Cancer Diagnosis of a Gastric Neuroendocrine Tumor (gNET)

Post author By Katrina Villareal
Post date July 23, 2025
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July 23, 2025

How Speaking Up Led to Drea’s Rare Cancer Diagnosis of a Gastric Neuroendocrine Tumor (gNET)

Drea was 23 and in her third year of college when her world shifted. What started as dizzy spells during yoga spiraled into frequent fainting, crushing fatigue, and a deep gut feeling that something wasn’t right. Although she voiced her concerns again and again, doctors attributed her symptoms to anemia, her weight, her diet, and even her anxiety. As a young woman, overweight and navigating the chaos of college life, Drea felt unheard, unseen, and constantly dismissed. All of this would change with a gastric neuroendocrine tumor diagnosis—but first she would have to go through more symptoms.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

It wasn’t until Drea’s hemoglobin dropped to a dangerously low level and she landed in the emergency room that the urgency finally clicked for the medical team. After an endoscopy and a CT scan, doctors discovered a gastric neuroendocrine tumor (gNET), a rare type of stomach cancer that had been silently bleeding for months. Her symptoms finally made sense, but the diagnosis shattered her. She spiraled, felt disconnected from her identity, and grieved the life she thought she’d have.

Drea’s authenticity shines as she reflects on the isolation of waiting for answers, the trauma of not feeling heard by medical professionals, and the emotional toll of watching her friends graduate while she remained hospitalized. Therapy and support from loved ones became lifelines. Her experience underscores the critical importance of self-advocacy, a voice she had to amplify even when others told her nothing was wrong.

The diagnosis wasn’t the aggressive gastric cancer doctors feared, but a well-differentiated grade 1 gastric neuroendocrine tumor. Still, it meant a life-changing surgery: a total gastrectomy with a Roux-en-Y reconstruction. (Editor’s Note: A total gastrectomy involves removing the whole stomach. A Roux-en-Y reconstruction involves rejoining the esophagus and the small intestine.)

Drea, a self-described foodie, mourned the loss of her ability to eat freely. The physical recovery was brutal, but the emotional healing ran even deeper. Eating remains a balancing act. Social events require planning, but she’s learned to embrace a new kind of normal — one that’s grounded in self-awareness, patience, and gratitude. She surrounds herself with people who love her exactly as she is and is slowly reclaiming parts of herself that were buried under fear and uncertainty.

Drea’s story is a powerful reminder that young people can get serious diagnoses and that symptoms, like unexplained fatigue, fainting, or persistent anemia, shouldn’t be ignored. Her honesty is refreshing, her strength palpable, and her advocacy deeply empowering.

Watch Drea’s full interview to find out more about her story:

What it’s like to be young, sick, and told, “You’re too healthy for cancer”
How fainting during a yoga class became the first clue that something serious was happening
How a missed diagnosis almost cost Drea everything, including her life
The moment she realized no one was going to advocate for her, except herself
What losing Drea’s entire stomach meant for her daily life and mental health

Name: Drea E.
Age at Diagnosis:
- 23
Diagnosis:
- Gastric Neuroendocrine Tumor (gNET)
Staging:
- Stage 3
Grade:
- Grade 1
Symptoms:
- Fainting spells
- Fatigue
- Dizziness
- Anemia
- Shortness of breath
- Absence of menstruation
- Unexplained weight loss
- Night sweats
Treatment:
- Surgery: total gastrectomy (complete removal of the stomach) with a Roux-en-Y reconstruction

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Drea!

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How Wyatt Navigated a Surprise Diagnosis of Stage 4 Lung Cancer

Post author By Katrina Villareal
Post date July 19, 2025
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July 19, 2025

How Wyatt Navigated a Surprise Diagnosis of Stage 4 Non-Small Cell Lung Cancer with KRAS G12D Mutation

When Wyatt found out he had stage 4 lung cancer in early 2021, he had no idea it would reshape not just his health but also his purpose. Diagnosed during the height of the COVID pandemic, Wyatt’s experience navigating stage 4 non-small cell lung cancer with a KRAS G12D mutation has been anything but typical, and he’s turned that into his strength.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

It all started with migraines so intense they’d knock him out for days. Wyatt visited the emergency room multiple times, but doctors told him it wasn’t serious. Then came vision loss and frightening neurological symptoms, so he went to see his neurologist, who told him he had to have his shunt replaced. After a CT scan post-surgery, they spotted the lesions in his lungs.

The initial reassurance of it not being cancer quickly gave way to a life-changing diagnosis: stage 4 non-small cell lung cancer. Wyatt was blindsided. No cough, no pain, no classic signs — just cancer hiding behind confusing symptoms.

From the beginning, Wyatt had to learn the power of self-advocacy. He realized that doctors don’t always connect the dots unless you speak up. At one point, he had to document everything he was eating and throwing up just to be heard. For him, building a relationship with the right oncologist made all the difference.

Living with stage 4 non-small cell lung cancer meant becoming an active participant in his care. Wyatt didn’t know about biomarker testing or what the term “KRAS” meant at first. However, over time, he discovered communities like KRAS Kickers and began connecting with others like himself. That connection was powerful, especially for someone who also lives with HIV and has often felt overlooked in medical settings.

Through trial and error with treatment, Wyatt learned to advocate, adjust, and persist. He’s on his seventh line of treatment now, managing side effects like neuropathy, nausea, fatigue, and chemo brain with humor, creativity, and ginger candy. But what truly fuels him is sharing knowledge and support.

Wyatt’s not just surviving — he’s making sure others don’t have to feel as lost as he once did. He’s working on building an online document of resources, pushing for access and inclusion, and showing up for others. Community has been a lifeline, and Wyatt’s working to strengthen it, one conversation and connection at a time.

Watch Wyatt’s full interview to find out more about his story:

Discover how a brain shunt led to an unexpected lung cancer diagnosis.
How self-advocacy helped Wyatt reclaim control over his care.
Learn why finding the right doctor is more important than just going to a big-name hospital.
See how one resource-filled document opened doors Wyatt didn’t know existed.
From cancer camps to ginger tea hacks, he shares tips with heart and humor.

Name: Wyatt D.
Age at Diagnosis:
- 33
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- KRAS G12D
Symptoms:
- Intense migraines
- Vision loss
- Muscle cramping in the hands
- Fainting
Treatments:
- Chemotherapy
- Immunotherapy

Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Wyatt!

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Haley’s Advice After Her Pancreatic Neuroendocrine Tumor Diagnosis

Post author By Katrina Villareal
Post date July 18, 2025
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July 18, 2025

Haley’s Advice After Her Pancreatic Neuroendocrine Tumor (pNET) Diagnosis

When Haley found out she had a pancreatic neuroendocrine tumor (pNET) in 2022, it didn’t happen in a dramatic, sudden moment. Instead, it was a slow build-up of digestive issues she couldn’t ignore anymore. She finally told her doctor that she needed to be seen. That request paid off. After an ultrasound revealed a tumor and more testing confirmed it, she received a diagnosis that changed everything.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

At first, the news was overwhelming. Haley describes the moment she saw her scan and spotted something bright, white, and round in her abdomen. It was a surreal, gut-wrenching image. Humor became her coping tool, and calling the tumor a “meatball” made the reality a little more bearable.

From the beginning, Haley took an active role in her care. She scoured online test results, Googled medical terms, and advocated for the best surgical team to perform the complex Whipple procedure. This mindset helped her feel empowered, even in moments of uncertainty. She was shocked to learn her pancreatic neuroendocrine tumor wasn’t genetic, especially given her family history of cancer on her mom’s side.

What stands out in Haley’s experience is her focus on mental health and identity. She allows herself to feel everything — grief, fear, gratitude — and takes things day by day. Her humor, spirituality, and self-awareness keep her grounded through it all. Despite her fears about recurrence, she leans into positivity and self-talk to keep her mind strong.

She also became more open about her experience with a pancreatic neuroendocrine tumor, showing off her scar in modeling photos and letting it be a source of pride rather than shame. At first, she kept the diagnosis private and even tried to push a new partner away. But over time, she realized that being vulnerable allowed her to receive support and to heal emotionally.

Navigating life post-surgery hasn’t been easy. Learning how her new body works, especially around eating and digestion, is an ongoing process. She now works with a team of specialists to stay healthy and informed. But above all, Haley emphasizes this: listen to your body, trust your intuition, and don’t be afraid to speak up. Neuroendocrine pancreatic cancer may have disrupted her life, but it hasn’t defined it.

Watch Haley’s full interview to find out more about her story:

Discover how she turned a shocking cancer diagnosis into a powerful reminder to trust your body.
As a model, find out how she reclaimed her identity in the process.
What it means to advocate for yourself in the face of a life-altering diagnosis.
Learn how Haley reshaped her mindset after losing part of her stomach, pancreas, and gallbladder.

Name: Haley M.
Age at Diagnosis:
- 30
Diagnosis:
- Pancreatic Neuroendocrine Tumor (pNET)
Symptom:
- Persistent digestive issues
Treatment:
- Surgery: Pancreaticoduodenectomy (Whipple procedure)

Haley M. neuroendocrine pancreatic cancer

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Haley!

Inspired by Haley's story?

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Haley M., Pancreatic Neuroendocrine Tumor (pNET)

Symptom: Persistent digestive issues
Treatment: Surgery (pancreaticoduodenectomy or Whipple procedure)
...

Chemotherapy Colectomy Colon Colorectal Metastatic Patient Stories Surgery Treatments

How a Mom with Stage 4 Colon Cancer Turned Pain Into Purpose

Post author By Katrina Villareal
Post date July 14, 2025
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July 14, 2025

How a Mom with Stage 4 Colon Cancer Turned Pain Into Purpose

When Lauren began feeling off in early 2025, she figured it was just constipation, since she was usually irregular. But when she found herself running to the bathroom up to 27 times a day, she knew something wasn’t right. Despite her persistence, early appointments with her primary care provider and even an ER visit didn’t give her the answers she needed. Her path to a stage 4 colon cancer diagnosis would take perseverance.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Eventually, her gut instincts led her to push for a GI consult, and that’s when her life changed. After a colonoscopy couldn’t even get past the blockage, a CT scan finally revealed the unthinkable: stage 4 colon cancer, specifically a rare and aggressive type called signet ring cell carcinoma (SRCC).

Lauren’s diagnosis came fast, and with it, a whirlwind of decisions. Within hours of her arrival at the ER, doctors were talking about cancer and prepping for emergency surgery. Lauren underwent a colon resection and came home with a colostomy bag. At just 41 years old, she found herself facing a diagnosis most people associate with much older adults. And while the shock was overwhelming, Lauren chose to face it with openness, strength, and grace.

Navigating treatment has been tough. Chemotherapy brought on intense neuropathy, nausea, and deep fatigue, but Lauren focuses on what keeps her going: her two young children, her incredibly supportive husband and family, and her inner fire. Talking to her kids about the changes in her body, including the colostomy bag and the port in her chest, wasn’t easy, but she handled it with honesty and love. Her children quickly adapted. Their curiosity turned into acceptance, and their resilience reminded Lauren that life, even now, is still full of beauty.

Since being diagnosed with stage 4 colon cancer, Lauren’s perspective has shifted in powerful ways. She’s slowed down, learned to cherish simple joys like reading in the backyard, and poured her heart into writing children’s books, stories inspired by her daughter’s autism diagnosis. Cancer pushed her to finally do what she loved.

Lauren now advocates fiercely for early screenings, especially since her cancer type often doesn’t show symptoms until it’s advanced. She also urges others to trust themselves. If something feels off, speak up. Her story is a moving reminder that you don’t need to look sick to be facing something serious, and that even in the hardest moments, it’s possible to find love, purpose, and joy.

Watch Lauren’s full interview to find out more about her story:

Discover how a bathroom log helped lead to a life-saving diagnosis.
Learn how Lauren explained stage 4 colon cancer to her young children in the most beautiful way.
Find out why her daughter’s autism diagnosis gave even deeper meaning to her children’s books.
Hear how Lauren’s life shifted from corporate chaos to creative purpose.
See how love, laughter, and support lifted her through one of life’s hardest moments.

Name: Lauren G.
Age at Diagnosis:
- 41
Diagnosis:
- Colon Cancer (Signet Ring Cell Carcinoma)
Symptoms:
- Frequent urges to have bowel movements (up to 27x/day)
- Incomplete evacuation
- Abdominal bloating
Treatments:
- Surgeries: colectomy (colon resection), colostomy bag placement
- Chemotherapy

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Lauren!

Inspired by Lauren's story?

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How Sasha Faces the Mental & Emotional Weight of Stage 4 Ocular Melanoma

Post author By Katrina Villareal
Post date July 8, 2025
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July 8, 2025

How Sasha Faces the Mental & Emotional Weight of Stage 4 Ocular Melanoma

When Sasha first felt eye pressure and dryness in late 2019, she never imagined it would lead to a stage 4 ocular melanoma diagnosis. At first, doctors attributed her symptoms — headaches, vision changes, and even a black curtain covering part of her eye — to migraines or retinal detachment. But deep down, Sasha felt something wasn’t right.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Sasha trusted her instincts, pushed for more opinions, and eventually got the diagnosis: a malignant tumor in her eye. Within days, she underwent emergency surgery to remove the eye. The physical loss was difficult, but the emotional impact left a deeper scar.

Soon after, routine scans revealed tumors in Sasha’s liver and lungs, confirming that her cancer had already been stage 4 ocular melanoma when it was discovered. This is a rare and aggressive disease with limited treatment options. The mental toll was immense. The uncertainty, the frequent scans, and the lack of a cure left her navigating a reality that changed every few months.

Sasha tried multiple treatments: dual immunotherapy, radiation, and eventually traveled to Germany for chemosaturation and chemoembolization, all financed in part through a crowdfunding campaign. Accessing care beyond what was offered locally required advocacy, persistence, and the courage to question even trusted doctors.

At one point, Sasha’s immunotherapy was discontinued in Finland. Frustrated but determined, she sought opinions from experts in France and Germany, who confirmed she should’ve stayed on treatment. Thanks to crowdfunding and her research, she continued privately funded therapy, which she still receives every other week.

Living with stage 4 ocular melanoma isn’t just a medical ordeal, as it affects every corner of Sasha’s life. From the limitations of monocular vision that challenge her work as a visual artist to the difficult reality of not being able to plan for a family, the impact is personal and profound. Through it all, she emphasizes the importance of mental health. The hardest part isn’t always the physical treatment — it’s the emotional weight of knowing the disease may never go away.

Sasha’s story is a powerful reminder that self-advocacy saves lives, mental health deserves more attention, and financial support can be life-extending. Her voice is strong, real, and deeply needed in conversations around disability, rare cancer, and patient empowerment.

Watch Sasha’s interview to find out more about her story:

How a black curtain over her eye changed everything.
Why she had to erase any reminder of the day she lost her eye.
The emotional cost of rare cancer and how she’s coping.
Why she stopped making long-term plans.
One simple piece of advice she believes every patient must hear.

Name: Sasha F.
Age at Diagnosis:
- 28
Diagnosis:
- Ocular Melanoma
Symptoms:
- Eye pressure
- Eye dryness
- Intense headache
- Red blood vessel in the eye
- Black curtain in vision (partial vision loss)
Treatments:
- Surgery: enucleation (eye removal surgery)
- Immunotherapy
- Radiation therapy
- Chemosaturation
- Chemoembolization

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Sasha!

Inspired by Sasha's story?

Share your story, too!

Head and Neck Cancers

Alyssa N., Adenoid Cystic Carcinoma

Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals

Treatments: Surgery (tumor removal), radiation
...

Eva G., Oral Cancer, Stage 4

Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...

Kandi B., Adenoid Cystic Carcinoma, Stage 3

Symptoms: Fatigue, headaches, depression, occasional feeling of tongue being on fire or inflamed, appearance of tumor on salivary gland on tongue

Treatment: Surgery
...

Larry W., Neck Cancer (Malignant Neoplasm of the Neck), Stage 4

Symptom: Lumps on the right side of the neck

Treatments: Surgery (tonsillectomy, lymphadenectomy), chemotherapy, radiation, clinical trial

...

Michael W., Squamous Cell Head and Neck Cancer, Stage 4

Symptom: None; caught at routine neck CT scan

Treatments: Surgery, chemotherapy (cisplatin), radiation
...

Tags stage 4

ALK Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments

From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis

Post author By Katrina Villareal
Post date July 6, 2025
No Comments on From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis

July 6, 2025

From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis

When Kathrin was diagnosed with stage 4 ALK+ lung cancer in 2024, it came as a complete shock. She didn’t have a cough, chest pain, or shortness of breath — none of the symptoms you’d expect. Instead, it all started with subtle signs: persistent fatigue, frequent illness, and a lingering pain in her left foot that she chalked up to an injury.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Being a fitness professional, Kathrin assumed it was nothing serious, but after the pain worsened, an MRI revealed something unexpected: a tumor in her foot. Initially thought to be benign, the biopsy showed it was a malignant metastasis. From there, a full-body PET/CT scan uncovered the real culprit: stage 4 ALK+ lung cancer, which had already spread to her bones, abdomen, and liver.

Despite the shock and the immediate fear of not surviving, biomarker testing provided a silver lining. Kathrin was ALK-positive, making her eligible for targeted therapy. Treatment began with radiation on her foot, followed by a daily ALK inhibitor pill. Within weeks, the treatment produced remarkable results.

Kathrin’s scans looked almost clear, which felt like being handed back her life. She describes this part as surreal, going from imagining death to being filled with hope. While the physical treatment has gone well, the emotional part has been more complex. Even though the cancer was under control, the reality of living with an incurable condition remains. She knows it may come back, so she consciously chooses to focus on what she can control: her mindset, her movement, and her moments of joy.

Exercise has been Kathrin’s anchor. Even during radiation, she kept moving. For her, movement isn’t just fitness; it’s therapy. It’s how she reconnects with herself, processes her emotions, and taps into her inner strength. She emphasizes the importance of staying active, not just for the body but for mental clarity and emotional balance.

Her story highlights a powerful truth: stage 4 ALK+ lung cancer doesn’t always look like what we expect, especially in women. Kathrin’s experience is a reminder of the importance of advocating for your health, listening to your body, and honoring your strength, even when life throws something unimaginable your way.

Watch Kathrin’s full interview to learn more about her story:

She had no cough, just foot pain. That’s how her stage 4 ALK+ lung cancer was discovered.
Kathrin opens up about the emotional whiplash of a sudden diagnosis.
How yoga and exercise became her daily lifeline through stage 4 ALK+ lung cancer.
Why Kathrin believes powerful treatments and positivity can change everything.

Name: Kathrin W.
Age of Diagnosis:
- 44
Diagnosis:
- Lung Cancer
Staging:
- Stage 4
Mutation:
- ALK+
Symptoms:
- Weakness
- Decline of performance in sports
- Depression
- Pain in left foot
Treatments:
- Radiation therapy
- Targeted therapy

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Kathrin!

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More ALK+ Lung Cancer Stories

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B

Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Lindsay W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptom: Severe pain in her side

Treatments: Chemotherapy (targeted therapy), radiation

Dan W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatments: Radiation, targeted therapy (alectinib)

Tags ALK+, Biomarker Testing, stage 4

Bacillus Calmette-Guérin (BCG) Bladder Cancer Chemotherapy Gemzar (gemcitabine) Immunotherapy Patient Stories Surgery Transurethral resection of bladder tumor (TURBT) Treatments

Why Speaking Up Matters: Dorinda’s Life with Bladder Cancer

Post author By Katrina Villareal
Post date July 3, 2025
No Comments on Why Speaking Up Matters: Dorinda’s Life with Bladder Cancer

Why Speaking Up Matters: Dorinda’s Life with Bladder Cancer

When life threw curveball after curveball at her, she didn’t flinch; she adapted. She was living in a fifth-wheel trailer on her parents’ property, helping care for her dying mother, when she noticed something alarming: a significant amount of blood in her urine. While she initially thought it might be a urinary tract infection, her instincts told her otherwise and she was right. It turned out to be bladder cancer.

Navigating the healthcare system wasn’t easy, but she stood firm, advocating for herself by insisting that something was wrong. That determination led to a cystoscopy, where a tumor was found on her bladder wall. She describes it looking almost like a piece of coral — strange, fascinating, and life-changing.

She had never heard of bladder cancer before her diagnosis. Like many, she associated cancer with more commonly discussed types, like breast or lung cancer. But her diagnosis opened her eyes to how little awareness exists about bladder cancer, especially in women.

Her care team, especially her urologist, played a major role in helping her feel empowered. He explained everything clearly and respectfully, building trust. When he told her, “You’re going to be fine,” she believed him. That kind of confidence, paired with open communication and mutual respect, made all the difference.

Treatment involved a transurethral resection of bladder tumor (TURBT) surgery and intravesical BCG therapy, which hit her hard with fatigue and other side effects. Despite this, she showed up — until she no longer could. She decided to stop maintenance BCG, fully informed and supported by her doctor. Later, when a growth appeared in her bladder, she underwent surgery again, followed by intravesical chemotherapy. Thankfully, it wasn’t cancer.

Throughout her experience, she became her own best advocate — asking questions, researching treatment options, and connecting with others online. Sharing her story on social media not only helped her process what she was going through but also gave others a sense of community and hope. She encourages everyone to speak up, take notes, and never feel guilty for asking questions because your voice matters.

She reminds us that people living with bladder cancer deserve compassion, informed care, and access to all possible options. Most importantly, they deserve to be heard.

Name: Dorinda G.
Age at Diagnosis:
- 59
Diagnosis:
- Non-Muscle Invasive Bladder Cancer (Malignant Neoplasm of Bladder Trigone)
Symptom:
- A significant amount of blood in the urine
Treatments:
- Surgery: transurethral resection of bladder tumor (TURBT), surgery for papillary lesion
- Immunotherapy: BCG (initial and maintenance)
- Chemotherapy

Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Interviewed by: Stephanie Chuang
Edited by: Katrina Villareal

Table of Contents

Introduction
When I Knew Something Was Wrong
The Moment Everything Changed
What My Cystoscopy Was Like
I’m Grateful That My Doctor Listens to Me
How I Felt After Finding Out I Had Bladder Cancer
Learning More About Bladder Cancer
Having Support Around Me
Discussing Bladder Cancer Treatment Options
Why I Decided to Stop Maintenance Treatment
Getting Intravesical Chemotherapy for the Recurrence
The Side Effects of BCG Treatment I Experienced
The Advantages and Importance of Having Treatment Options
How You Can Advocate for Yourself

I saw a significant amount of blood in my urine.

Introduction

People describe me as being strong. I’m divorced and I’ve raised kids on my own. I’ve survived cancer and domestic violence. I didn’t let what happened stop me or slow me down. I’ve looked at everything that’s happened to me as an opportunity for learning and growth.

During the pandemic, some circumstances came up and I needed a place to live. Since everything was shut down, I couldn’t view rental properties. Prices went through the roof, doubled and tripled in some cases.

My mom was ill, bedridden, and on hospice care. My parents needed me close by, so I bought a used fifth wheel in fair condition and parked it on their property. That’s where I was living when I was diagnosed. I helped care for my mom until she passed.

When I turned 59, one thing after another started to happen. I was taken to the emergency room, where they found out that my gallbladder was full of gallstones and I had a blockage. It caused a lot of issues with my liver. They had to get everything under control before they could send me home, so I was in the hospital for four or five days. A couple of months after that, I found out I had bladder cancer.

But how I view things is: what other option is there? Lying down, playing victim, and saying woe is me was never an option. The choice was to keep going and keep doing. You do the best you can every day and get through it.

When I Knew Something Was Wrong

I saw a significant amount of blood in my urine. I had recurrent sinus infections, so I scheduled a visit with whoever was available at my doctor’s office to get in right away.

I knew the assistant who was checking me in and she asked how I was doing. I said, “It’s just another sinus infection. But there’s one other thing. There’s a lot of blood in my urine.” She said, “Oh my gosh. Let’s get you into the bathroom. I’m going to set you up. We need a sample.”

Right away, she did everything she needed to do. When the provider came in to talk to me, he tried to explain that I wasn’t seeing blood in my urine, but it must be something I ate. I told him, “I’m 59. I’ve had five children. I think I know very well what blood looks like in the toilet and a lot of it.”

As the results come up on his computer screen, he says, “Oh my God, that’s a lot of blood.” I’ve never gone back to that provider again. He was trying to dismiss my symptom. It’s a real problem in women’s health across the board for all various kinds of reasons, especially — and unfortunately — with male providers. If you look at the history of medical research, women are blatantly ignored concerning their symptoms. Men are researched more than women.

The cystoscopy was uncomfortable but manageable. It wasn’t painful at all.

Imagine a woman on her menstrual cycle seeing blood in the toilet; it was like that. It was a significant amount of blood and I knew that. It wasn’t a spot on the toilet paper.

It started with tiny spotting around three to five days prior, which was thought of as possibly a urinary tract infection (UTI). I may not be remembering clearly, but I think I was given a round of antibiotics, and the amount of blood kept increasing.

I happened to also be sick and wanted to be seen for that sinus infection, so I decided to tell them about the blood because I knew that something was wrong. That wasn’t normal. There was no pain with urination. There wasn’t any pressure. There were no other symptoms.

When the doctor saw the result of my urine test, I was given a quick referral to a urologist.

cystoscopy — Cancer Research UK / Wikimedia Commons

The Moment Everything Changed

My initial appointment was with the physician assistant (PA) in the urologist’s office. We discussed what was going on and I gave another sample for a urine test, which they sent off to check for cancer cells. When they called me back, they said, “Great news. There are no cancer cells in your urine, but we still want you to come in and see the urologist for a cystoscopy.” Lo and behold, they found a tumor.

What My Cystoscopy Was Like

The cystoscopy was uncomfortable but manageable. It wasn’t painful at all. You undress from the waist down and put your feet up in the stirrups. They use lidocaine at the opening of the urethra, which helps tremendously.

They insert the scope, which looks like a catheter with a camera at the end, through your urethra to see into your bladder. There was a screen facing me, so I could see everything that he saw. Everything was explained to me.

I understand it’s a lot different for a man. My son-in-law recently had one and he did not have a good experience at all. I think it’s different for him because our anatomies are different, which I think makes it less traumatic for a woman. I may be completely wrong because I only know from my experience. I don’t look forward to it, but I go every time they ask me to come in for one.

My urologist listened to me. I feel heard.

Partway through treatment, I got COVID at the same time I had my BCG treatment, and the side effects were compounded exponentially. I was very ill. I was so fatigued and couldn’t get out of bed. It was pretty bad, so I declined further maintenance treatment.

It was very interesting and pretty fascinating because the tumor looked like a little sea anemone or piece of coral. It had a funky shape and was stuck on the bladder wall. After the cystoscopy, he gave me a one-dose antibiotic right away to help stave off any kind of UTI. He took me into his office and brought out all the pamphlets on bladder cancer.

During the scope, he didn’t say that it was cancer. I credit him for my reaction to it because his bedside manner was outstanding. He was very confident. He said, “This is what it is. We’re going to remove it. Then we do this treatment and you will 100% be fine. You are going to recover.” He was so confident. I put my trust in my urologist. He’s amazing.

I was involved in an online journey mapping. Several patients, caregivers, and doctors had experience with bladder cancer. I was listening to other people’s stories with their providers. I felt so incredibly fortunate to have the provider I have. Listening to other people’s stories made me feel so grateful for my experience.

I’m Grateful That My Doctor Listens to Me

The big thing for me was that my urologist listened to me. I feel heard. I provide him with that same respect and listen to him because he has the expertise. He understood why I wanted to stop the maintenance treatment. We discussed what that would look like in the future if there’s a recurrence and I understood. He made everything very clear.

He honored my decisions and didn’t try to sway me. We discussed the potential consequences of stopping treatment, but I still went ahead.

I had missed so much work. Part of me was afraid of how long my employer was going to let me miss work, but they were very understanding. After a while, though, you cannot afford not to be paid. Everybody has to have an income. It was affecting my life. At that point, I felt like it wasn’t going to come back and that I had a handle on it.

I agreed to keep coming in every 90 days for a cystoscopy to be checked, which was good because by December, I had a growth in my bladder.

How I Felt After Finding Out I Had Bladder Cancer

I was in shock. I was texting my adult daughters from the office, telling them I have cancer. It’s something that you see happens to other people, but don’t think it would happen to you, but now it is.

Cancer’s a scary word. It’s a scary diagnosis because the cancers that we see and hear about most often don’t always have good outcomes. I didn’t even know about bladder cancer until I got it. I’d never heard about it. I had no idea that you can get cancer in the bladder.

It was very surreal. It was a lot of information to absorb. I didn’t cry or freak out. I credit my urologist for that because he was so good at talking me through all of it. I felt confident that after I get this procedure done and do this treatment, I’ll have done it.

The last time I saw him, I talked to him about it. I told him that after hearing other people’s stories, I couldn’t thank them enough. I have the same nurse every time I go in. My care team is phenomenal and I’m grateful for that, especially after hearing other people’s stories.

I didn’t have a lot of emotions. I looked at it as fact. This is what’s happening and this is what’s going to happen next. During treatment, there was a time when I was in a very negative headspace. When I went to my appointment, I told them, “I don’t want to be here. I don’t want to do this anymore. I’m done. I’m over it. I’m here because I know I have to. I know this is what’s best, but I don’t want to do it anymore.”

I was sick and tired of having medication put into my bladder. I was tired of undressing from the waist down. I was tired of putting my feet in stirrups. I was just over the whole experience. I had my first BCG treatment in June 2023. By January 2024, I started getting that feeling of not wanting to do it anymore and by September, I said I didn’t want to continue with the maintenance treatment.

On one of my TikTok videos, some people asked me about discontinuing the maintenance treatment and whether you’re allowed to do that. My doctor didn’t say I could stop. He understood where I was coming from.

I agreed to keep coming in every 90 days for a cystoscopy to be checked, which was good because by December, I had a growth in my bladder. It turned out to be non-cancerous, thank goodness, but I still had to go in and have it removed through surgery and have the pathology done. At that time, we didn’t know. Because it looked like the original tumor, we did chemotherapy in the bladder in December.

I communicated with people through my videos, which helped me deal with what I was going through.

Learning More About Bladder Cancer

I read the bladder cancer pamphlets multiple times. Then I would get online and Google everything, like most people do. I did a lot of research online as well and the information I found aligned with everything in the pamphlets. I had to keep rereading and reaffirming myself.

I researched what bladder cancer is and what the treatments are, and BCG was the gold standard. I’m hearing more recently that there are alternative treatments, which is good because of the global shortage of BCG. In some areas of the country, I learned from other bladder cancer patients that they have not had access to BCG. I felt fortunate that it was available to me.

Having Support Around Me

My daughter Madeline took me to every appointment. She also stayed with me because when you come home, you have to lie down and rotate every 15 minutes until it’s time to go to the bathroom. She was my major support person.

I have met other bladder cancer patients who are much better with their social media than I was. When I started sharing, it was my way of dealing with it and processing it. Somebody who saw my TikTok video found me on Facebook. She reached out on Messenger to check in with me every Thursday. She was just diagnosed and hadn’t started her treatment yet, but she would ask how my treatment went and how I was doing.

I communicated with people through my videos, which helped me deal with what I was going through. I know people who have had breast cancer. I had a nephew who had childhood cancer. But I didn’t know anyone with bladder cancer.

How did I get this? Where did this come from? I thought if I started talking about it and put myself out there a little bit, other people would come forward or somebody would learn something. I wanted to get the word out.

The possibility of bladder removal was mentioned… We didn’t discuss it because he was very confident that removing the tumor and the BCG treatment were going to be effective for me.

Discussing Bladder Cancer Treatment Options

My urologist talked to me about treatment options immediately because I had to get the surgery scheduled ASAP. I asked if we could wait until the school year was over because I didn’t want to miss work. He said no and that it had to be done immediately.

He never gave me a stage, but I know that the two-centimeter tumor was a mix of high-grade and low-grade cancer, which he was surprised about. Based on his experience and from what he saw, he was pretty sure it was low-grade cancer.

There weren’t any options. It was going to be the transurethral resection of bladder tumor (TURBT) surgery and the BCG treatment. With the BCG, he explained what it is, what it’s used for in other countries, and what we use it for here in the US, which is to treat bladder cancer.

He talked about the BCG shortage and the possibility of it not being available. If we ran into that issue, then we would discuss other options. Thankfully, it was available and I got it every time I needed it.

The possibility of bladder removal was mentioned in all the literature that he gave. We didn’t discuss it because he was very confident that removing the tumor and the BCG treatment were going to be effective for me.

I didn’t even know about bladder removal. After I’d gone through all of this, I found out that I had an uncle who had bladder cancer and had his bladder removed. Nobody in the family ever knew until I started talking about what I was going through.

My cousin was pretty vague about it, but they were aggressive with what they did. They found out later that they didn’t have to do the bladder removal, but they went forward with it because he felt that he was getting rid of the potential recurrence. I’m not 100% sure what happened.

Different doctors have different approaches. My urologist was pretty conservative, but it’s also been very positive. Everything so far has been right for me.

I could have spoken up and said I didn’t want to do the treatment, but why would I? He’s the expert. This is what he does. He knows what’s best and I felt very confident in his skills and his decisions. I trusted him 100%.

I was in a very negative headspace… I couldn’t do anything. I didn’t have any energy. I didn’t feel like myself.

Why I Decided to Stop Maintenance Treatment

With BCG, I had to go in once a week for six weeks for the initial treatment. A lot of people have very minimal side effects from it. For me, I was down for anywhere from two to four days. I was wiped out and felt extremely fatigued. I’ve never experienced that before. That’s something he noted in my charts, which is that I didn’t respond favorably.

My initial round of BCG treatment was during the summer, so I was off work. I got a little bit of a break and then I went back for three weeks of maintenance treatment. Then I had another break and went back for another three weeks of maintenance treatment. By September 2024, I said I couldn’t do it anymore.

Between January and September, I was in a very negative headspace about everything. I was tired of being tired and of feeling like I couldn’t get out of bed every day. I couldn’t do anything. I didn’t have any energy. I didn’t feel like myself.

BCG immunotherapy — Cancer Research UK / Wikimedia Commons

Getting Intravesical Chemotherapy for the Recurrence

He had mentioned that if it recurs, I would probably have to do the chemotherapy into the bladder. But he didn’t say any drug names, just that it was chemotherapy. They do it through a catheter, the same way they do BCG, but from what I understand, it takes longer and you’re in the office longer because I think you have to wait there.

None of those things have been thoroughly discussed with me because I’m assuming it wasn’t necessary. But in December, I had intravesical chemotherapy. They inserted it through a catheter and clamped it. It’s held in for an hour and then they pull the catheter out. I’ve only had it one time.

The Side Effects of BCG Treatment I Experienced

My treatment day was always on a Thursday, so I had to miss that day of work and the following day. Because of the side effects, I couldn’t function. Sometimes, I would even miss work the following Monday, so that’s at least two to three days a week of work. Then I have to repeat it all the following week.

For me, I would get the chills and feel extremely fatigued. I’ve never experienced anything like that before. I was weak and tired. I couldn’t even hold my phone. I couldn’t get out of bed. I couldn’t do anything. I lay in bed and slept around the clock.

I don’t think bladder cancer removal should be an option unless it’s absolutely necessary.

At one point, I had COVID while having treatment at the same time. That was a rough three weeks. I was at the point where I couldn’t do it anymore. I physically couldn’t. I had what they called long COVID because it took a good six to eight months for me to get over all of the symptoms. Undergoing BCG treatment at the same time did not help me feel better.

The Advantages and Importance of Having Treatment Options

I think it’s good news. I do like that because there’s a worldwide shortage of BCG. Whether or not it’s the gold standard, if you can’t get it, you have to have alternatives. We’ll find out in time if the alternatives are better. All medical advances are good. Something that’s tried and true doesn’t always mean it’s the single best treatment because something better could come along.

Bladder cancer has a high recurrence rate, so there’s always a chance that it will come back. Knowing that there are advancements and new treatments, if it comes to that, then I can talk to my urologist and find out what’s available and what’s different.

I would want to consider the side effects and how they’re going to affect my life and my ability to work and function, and the effectiveness. In the grand scheme of things, of course I would like fewer side effects, but if something’s not going to be as effective, then I’m going to have to suck it up and go with what’s most effective.

I don’t think bladder cancer removal should be an option unless it’s absolutely necessary. Has there been multiple recurrences? Is the tumor invading the muscle now? Is it growing? I had non-muscle invasive bladder cancer, so why would I do that?

For me, that would be the extreme option in my situation. I want to continue to live and have a good quality of life, but I don’t think bladder cancer should be discussed as an option unless it’s a necessary course of treatment.

Doctors need to be open-minded and explore the new options coming out. Think about your patients: who they are, their age, their activity level, and their lifestyle. What do they do for a living? What do they do for recreation? Then think about the treatment options.

What treatment can improve the quality of life of my patient? What’s going to give them fewer difficulties? What’s going to interfere the most and what’s going to interfere the least? What treatment would be the least impactful in terms of side effects?

Don’t be afraid to speak up. Don’t be afraid to ask. You are your own best advocate. If you don’t speak up, who else will?

I want medical professionals to see us as human beings. Yes, we have this condition. Yes, you are the expert. But we also have a life outside of our condition.

How You Can Advocate for Yourself

I’ve been a paraprofessional in special education for over 30 years and I’ve had to advocate for students who can’t advocate for themselves. I’ve always been that way.

Ask questions. Do the research. In December, when I had the growth removed from my bladder and my doctor started talking about intravesical chemotherapy, I started spouting percentages back to him about how that was going to reduce the rate of recurrence. He was chuckling and I said, “I’m sorry, but I did my research because I wanted to know,” and he thought it was great. He was pretty impressed because I don’t think he expected it from me.

Don’t be afraid to speak up. Don’t be afraid to ask. You are your own best advocate. If you don’t speak up, who else will? You may have a caregiver, a spouse or a significant other, a parent or an adult child looking out for you, but we have to advocate for ourselves.

If you have questions, jot them down. Make a note in your phone or a notebook. Write your questions and concerns down, and bring them up. Talk to your nurses, to your doctor, and to everybody there. They’re a wealthy source of information. I don’t think that puts anybody in a negative light. We should be as informed as we can be.

How did I get this? I was never a smoker. I don’t work in the agricultural industry where I’m exposed to pesticides and chemicals, because he did ask me about that. But I have, unfortunately, put myself in situations where I’ve been exposed to second-hand smoke throughout my life.

Now I’m very cautious about my exposure. If I go out for a drink with friends, it’s in a nonsmoking bar. I won’t hang out in a garage or a shop where people are smoking. I’m limiting my exposure to reduce any risk because I take it very seriously.

Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Dorinda!

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CLL Treatment Advances: Moving from Research to Reality

Post author By Katrina Villareal
Post date July 1, 2025
No Comments on CLL Treatment Advances: Moving from Research to Reality

CLL Treatment Advances: Moving from Research to Reality

Targeted Therapies, Breakthrough Combinations, and Minimal Residual Disease (MRD)

The world of CLL treatment is evolving fast, with new breakthroughs offering more options and greater precision than ever before.

This program brings together expert Dr. Jeff Sharman and patient advocate Andrew Schorr to break down the most important updates from recent research and clinical trials. Learn what’s changing, how it impacts treatment decisions, and what it all means for patients today.

Webinar: CLL Treatment Advances: Moving From Research to Reality

Hosted by The Patient Story

The world of CLL treatment is evolving fast. This program breaks down the most important updates from recent research and clinical trials. Learn what’s changing, how it impacts treatment decisions, and what it all means for patients today.

Watch On Demand

New Treatment Advances: Get the latest updates on targeted therapies, combination approaches, and next-generation treatments.

Understanding MRD: Learn how minimal residual disease (MRD) testing is shaping treatment strategies.

Clinical Trials & Personalized Care: Discover how biomarkers and ongoing research are changing the CLL treatment landscape.

Expert Insights & Patient Focus: Hear from Dr. Jeff Sharman and Andrew Schorr on what this means for patients now and in the future.

We would like to thank The Leukemia & Lymphoma Society and the CLL Society for their partnerships.

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

Thank you to AbbVie for its support of our independent patient education program. The Patient Story retains full editorial control over all content.

July 1, 2025

Edited by: Katrina Villareal

Table of Contents

Introduction
What Happens After a CLL Diagnosis?
The Latest Treatment Options for CLL
What is Pirtobrutinib?
What is a Degrader?
CLL Treatments Being Studied Now
Deciding When to Use a Combination of Drugs for Treatment
What is CAR T-cell Therapy?
Working with Your Doctor to Decide on a Treatment
When Do Doctors Decide to Start Treatment?
CLL and Fertility Concerns in Younger Women
Addressing Side Effects with Your Doctor
What is Richter’s Transformation?
How Do Doctors Treat Younger Patients with CLL?
Considering a Clinical Trial for CLL
Concerns About Funding for CLL Research
Is There a Cure for CLL in Sight?
Conclusion

Introduction

Stephanie Chuang: Welcome to “CLL Treatment Advances: Moving from Research to Reality,” a program focused on all of the latest in research and clinical trials in the world of CLL treatment. It’s a space that we know has experienced so much development in the last few years especially. While that’s incredible news, it also means that there might be more questions about CLL treatment options. We are featuring some incredible CLL advocates on the topic from both the specialist side and the patient side.

I’m the founder of The Patient Story and I was diagnosed with a different kind of blood cancer, an aggressive form of non-Hodgkin lymphoma. While I was undergoing hundreds of hours of chemo, the idea for The Patient Story came up. I thought that other people would want humanized information the way that I did and that’s what we try to do. We help people navigate life at and after diagnosis in human terms and build community through in-depth patient stories and educational discussions.

We want to thank our sponsor, AbbVie, for supporting this program, which helps us host more of these discussions for free. I want to stress that, as always, The Patient Story retains full editorial control over all content. While we hope that this is helpful, keep in mind that this is not a substitute for medical advice so still consult with your health team about your decisions.

There’s so much to get through, so I will hand it over to someone many of you are very familiar with and who I’m proud to say has become a friend of mine, Andrew Schorr.

Andrew Schorr: Hello and welcome to this program. We’re going to discuss the latest in CLL, particularly based on one of the big medical meetings that happened not too long ago where a lot of studies came out. What does it mean for all of us? I’m in San Diego and I’ve been living with CLL since 1996.

Joining us from Eugene, Oregon, is a leading expert in CLL, Dr. Jeff Sharman. Jeff, who I’ve known for many years, is at the Willamette Valley Cancer Institute and Research Center. He’s also the medical director of hematology research for the Sarah Cannon Research Institute. Jeff, it’s great to see you.

Dr. Jeff Sharman: It’s great to be back with you, Andrew. Thanks for having me.

CLL Treatment Advances - Moving from Research to Reality

What Happens After a CLL Diagnosis?

Andrew: Jeff, I’ve been living with CLL for many years. Some people who will watch this program are newly diagnosed. I went through all the stages and I’m sure you see it in your practice daily. “What the hell is this? I’m scared. I have a blood cancer. Will my life be shorter? Am I going to die anytime soon? What do you have that’s effective to treat me? If that doesn’t work, do you have something else?” We’re going to get into all that, but at a high level, Jeff, how do you feel for today’s patient?

As a doctor, one of the things is figuring out how to administer the most unique medicine we give, which is the medicine of hope
Dr. Jeff Sharman

Dr. Sharman: I have a very large practice. I take care of about 400 CLL patients and for many of them, I’ve been their first doctor. That’s the nature of my practice. For a lot of folks I take care of, I’m their first contact in terms of understanding CLL.

What you highlighted is something I see time and time again, which is a very understandable fear patients come in with. It’s very common. You say leukemia and you see their eyes widen and see them sit up a little straighter. What you recognize is a great deal of distress that any cancer would cause. As a doctor, one of the things is figuring out how to administer the most unique medicine we give, which is the medicine of hope, and communicate that with patients in the midst of some of the worst days of their lives.

I do reference quite frequently a study done in the Italian group, which showed that if you’re age 65 and above diagnosed with CLL, you can’t measure a statistical impact on survival. Most patients are going to outlive their diagnosis and that’s an optimistic message. Most patients aren’t going to pass away from their disease and that bears out from my experience. The number of patients who die from complications of CLL is a very small fraction. Even in my large CLL practice, it’s only a small number; two or three per year might be the case. We have a lot of treatment options for CLL apart from the traditional chemotherapy. We have targeted agents, immunotherapy, and so forth.

Most patients are going to outlive their diagnosis and that’s an optimistic message.
Dr. Jeff Sharman

Andrew: The bottom line is most of us are going to live a pretty normal life. We may need to take medicines along the way, but we have more effective medicines than ever before and others that are very promising.

The Latest Treatment Options for CLL

Andrew: I was diagnosed in 1996, but I wasn’t treated until 2000. At that time, the feeling was that treatment might be more harmful than waiting and seeing what happens. There’s still a percentage of patients who never need treatment.

I was in a clinical trial of fludarabine and cyclophosphamide with rituximab. It led to a 17-year remission, but it had the chemo component. I had a treatment that sometimes comes into play years later, which was high-dose methylprednisolone with obinutuzumab. That was about seven years ago and I’ve never had any treatment since then.

Each year, there are several meetings where you discuss the latest in research in CLL, but the big meeting in December 2024 was the American Society of Hematology meeting or ASH. The impression I had, Jeff, was we have several approved therapies, but we have what looks like planes circling the airport at different altitudes — stage 1, stage 2, stage 3 — that are very promising and are waiting in the wings for CLL. We will get into the details, but am I right that we have a lot coming?

Dr. Sharman: A lot is coming, Andrew. At these meetings, we get to see a cross-section of development. We see all those airplanes in various stages of flight. Some are coming in for landing, some are still on the assembly line, some are mid-flight, and so forth. There are severeal reasons to be optimistic about what’s out there.

Andrew: Let’s understand where we are with approved therapy. I had some chemo years ago, but you mentioned that people aren’t going to need chemo. We have this whole class of medicines — BTK inhibitors — and even new generations of that we can talk about. With the approved therapies, you have quite an arsenal now where you can use drugs either by themselves or together.

Dr. Sharman: There are three main classes of drugs. You mentioned BTK inhibitors. I would add BCL-2 inhibitors and immunotherapy, particularly obinutuzumab, which goes by the commercial name Gazyva. It took a lot of work to get each of these drugs approved. Right now, we’ve learned how to combine these drugs in terms of what we call doublet therapy, where we use two of those drugs together, and even triplet therapy, where we put three of them together. What the field is trying to figure out is the best combination and the best sequence.

The good news is these drugs are FDA-approved and available to patients. When most patients think about chemotherapy, they think of the traditional drugs developed from the 1950s through the year 2000. Those are drugs that typically damage DNA and cause cells to die as a result of damaging DNA.

What’s different now is we have these targeted therapies, which have no DNA-damaging component but instead exploit certain vulnerabilities of the cancer cell. There’s an enzyme sequence or a signaling mechanism inside a cell. I like to think of it as an electrical current, which needs to keep going to keep the CLL cell alive. What BTK inhibitors do is cause a short circuit in that electrical circuit, so the cancer cells die as a result. It turns out that the cancer cells are more sensitive to it than normal healthy B cells. It’s a targeted therapy. It doesn’t damage DNA. It exploits a certain vulnerability.

BCL-2 inhibitors are similar in that the cancer cells are dependent upon this enzyme called BCL-2, which helps keep the cell alive. If we disrupt BCL-2, it’s almost like taking off the fence from around the Grand Canyon — they fall in and the cancer cells die as a result. It gets rid of the safety mechanism for the cells.

With obinutuzumab, what we’re doing is recruiting the immune system to fight off the cancer of the immune system. It’s as though we’re giving the immune system the tools it needs to fight off the cancer that’s already there.

Each of these drugs has its side effects. There’s no such thing as a drug that doesn’t have side effects, but in contrast to traditional chemotherapy, it’s not the same type of patient experience. These aren’t nausea-provoking drugs and they certainly don’t cause hair loss. In a lot of cases, these drugs are pretty easy to take side by side with the rest of your medications and you might not necessarily know there’s something unique about it, if that makes sense.

Andrew: As far as BTKs, we have ibrutinib (Imbruvica), acalabrutinib (Calquence), zanubrutinib (Brukinsa), and pirtobrutinib (Jaypirca). For BCL-2, we have venetoclax (Venclexta) and others in development. Many people are taking BTKs now. How do you determine who gets what?

Dr. Sharman: There’s a lot of terminology around first-generation, second-generation, and third-generation. We’re researching fourth-generation BTK inhibitors.

The very first BTK inhibitor to come about was ibrutinib, which turns off the BTK enzyme in a unique way. It forms a bond with the BTK molecule, which we call an irreversible inhibitor or covalent inhibitor. It forms a permanent attachment to the BTK enzyme so that particular enzyme will never work again until the cancer cell makes a new one. Cancer cells make new ones and in about 24 hours, they’re starting to wake up their BTK, which is why ibrutinib is taken once a day. The new enzyme needs to be shut down, just like the old enzyme was.

There are some unique side effects with ibrutinib. We see an increased rate of bruising and bleeding, which tends to be mild arm bruising. For most patients, it doesn’t prove to be all that much, but a lot of our patients are already on blood thinners so if you start adding them together, the risk of bleeding goes up. We see some joint aches and muscle cramps happen. Occasionally, patients can have an abnormal heart rhythm called atrial fibrillation. Originally, we didn’t know if that came from the drug, but we’ve largely concluded now that it does.

That left room for the second-generation BTK inhibitors, acalabrutinib and zanubrutinib. These medications underwent more rigorous pre-clinical development of medicinal chemistry to try to dial out some of those side effects. In fact, acalabrutinib and zanubrutinib have been compared head to head against ibrutinib in various studies and have shown fewer side effects for most patients and some increased efficacy. Within the field, most doctors who follow this area closely tend to start patients on either acalabrutinib or zanubrutinib.

How do we pick? Sometimes it’s an insurance issue. Sometimes you might have some bias. The cardiac differentiation is a bit in favor of acalabrutinib. In the head-to-head study where zanubrutinib was compared to ibrutinib, there may be a signal of higher efficacy. If you’re going to combine it with obinutuzumab, you go with acalabrutinib. There are various reasons you might pick one over the other. Sometimes it comes down to insurance, but I view acalabrutinib and zanubrutinib as more similar than different.

What is Pirtobrutinib?

Andrew: You used the term covalent. I understand there are non-covalent BTKs and I believe pirtobrutinib is one of those. What’s the difference?

Dr. Sharman: We talked about acalabrutinib and zanubrutinib as second-generation BTK inhibitors because they differentiate from ibrutinib. We consider pirtobrutinib a third-generation BTK inhibitor.

When we talk about the different generations, what’s the main difference? It’s a non-covalent inhibitor. Over time, patients can develop resistance to the first- and second-generation BTK inhibitors and the most common way they do that is by modifying the exact spot on the BTK enzyme where the first- and second-generation BTK inhibitors bind. There’s an amino acid in position 481 called cysteine that can get mutated. All of a sudden, those drugs don’t work. There are other mutations, but that’s the most common one.

Pirtobrutinib does not require forming a bond. It stays in the system a little bit longer, fits into the binding pocket more easily, and doesn’t require that irreversible bond. Pirtobrutinib has been shown to work even after patients have developed resistance to the first- and second-generation BTK inhibitors and that’s what differentiates it as a third-generation BTK inhibitor.

Another one in late development is called nemtabrutinib, which may or may not get approved — I suspect it will. It may still be a little ways away and has flown under the radar a little bit. The distinct advantage of non-covalent inhibitors is they can continue to inhibit the BTK enzyme even after the first- and second-generation BTK inhibitors have stopped working.

What is a Degrader?

Andrew: Some of our patients are like mini scientists and are asking about degraders. What are degraders? I know we don’t have them approved yet, but where are they going to fit in?

Dr. Sharman: They would be a fourth-generation BTK inhibitor. I’ll take the cloud-level view. One paradigm in all of oncology is that when you find a good target, a good enzyme to inhibit, or a good surface target, there are always efforts to continue to exploit the therapeutic opportunity of going after that target in new and improved ways. Clearly, one of the improved ways is to work when the other drugs stop working.

BTK degraders get rid of the BTK enzyme completely instead of turning it off.
Dr. Jeff Sharman

The concept of degraders is a lot like pirtobrutinib, although it does it through a different mechanism. It’s designed to inhibit BTK even when the BTK inhibitors have stopped working. Within any cell — cancer cell or regular cell — there is trash disposal for old broken-down proteins. We are constantly synthesizing new proteins and getting rid of the old ones. Degraders glue a couple of molecules together — one that goes after BTK and then the other one designates the protein for the trash heap — and tags the BTK molecule to dispose of this enzyme. Instead of inhibiting BTK, it’s degrading BTK, which is very different. BTK degraders get rid of the BTK enzyme completely instead of turning it off.

BTK degraders are a very active area of research right now. These would be the airplanes that aren’t necessarily coming in for a landing or even mid-flight. They are still getting manufactured and haven’t taken off from the ground.

CLL Treatments Being Studied Now

Andrew: Venetoclax is a BCL-2 inhibitor, which is a different mechanism of action. There are other BCL-2s in development as well. What are some of the names?

Dr. Sharman: Sonrotoclax is probably the one that’s farthest along. There have been a handful of other BCL-2 inhibitors that have gotten out there. Venetoclax is an incredibly effective drug. In fact, it’s so effective that its effectiveness may almost be its biggest liability. It can literally kill cancer cells so fast that the consequences of that can be some electrolyte abnormalities and disturbances that can be life-threatening, which is what we call tumor lysis syndrome where you’re killing cancer cells too quickly. The inside of cancer cells has a lot of potassium and uric acid.

Andrew: Your kidneys can’t keep up.

Dr. Sharman: You can’t keep up. It can clog up the kidneys, cause heart arrhythmias, and so forth. With venetoclax, we start with a very low dose of 20 mg for a week. The following week, we go up to 50 mg. The week after, we go up to 100 mg. Then 200 mg. Patients generally go on 400 mg.

It also has some drug interactions, more for our patients who have acute myelogenous leukemia (AML) or patients on cardiac medications. What we have to do is check labs frequently. We stratify the risk for these patients. Are they low risk, intermediate risk, or high risk? That has to do with how high their white blood cell count is, how big their lymph nodes are, and how their kidneys function, so we follow these patients closely. For a lot of patients, it’s a month with a lot of lab visits. Sometimes, we even put patients in the hospital when we start the medication because we want to be able to jump into gear if they’re high risk.

It has logistical challenges. It’s not used quite as frequently in the front-line setting as BTK inhibitors, which are oftentimes quite simple to give, but it’s a very effective drug. One of the big advantages is it gives very deep remissions. Oftentimes, we’re able to give patients the drug for one year in the front-line setting, two years in the relapse setting, and then stop the medicine. Patients can have remissions that can last multiple years without requiring ongoing therapy. Whereas with BTK inhibitors, once we start them, patients always ask, “Am I going to be on this forever?” I say, “You’re going to be on it as long as it’s working for you.” For many patients, it can be from five to 10 years, which feels like a long time to be on an anti-cancer medicine for patients.

Patients can have remissions that can last multiple years without requiring ongoing therapy.
Dr. Jeff Sharman

Deciding When to Use a Combination of Drugs for Treatment

Andrew: Let’s tie this together. We have BTK inhibitors that work for most people and depending on the side effects you might experience, the health of your heart, or other issues you might have, your doctor would work with you to choose one that’s the kindest on your body. You might combine it with another drug. You talked about doublets or even triplets, so somebody might receive one of these drugs with obinutuzumab. Would somebody get a BTK and a venetoclax?

Dr. Sharman: That leads us to some of the discussions at the 2024 ASH meeting. If we go back in time to a couple of meetings ago, we saw data for the combination of ibrutinib and venetoclax that was compared against one of the standards at that time, which included obinutuzumab with a chemotherapy drug that’s not used much anymore called chlorambucil. The ibrutinib-venetoclax clearly beat obinutuzumab-chlorambucil and interestingly, we had a different opinion depending on where you are in the world as to whether or not it could be approved. That combination was approved in most of Europe and is reimbursed by insurance in several jurisdictions. In fact, ibrutinib-venetoclax is a very common regimen utilized in Europe.

The combination of acalabrutinib-venetoclax or the triplet acalabrutinib-venetoclax with obinutuzumab was compared against two of the harder chemoimmunotherapy regimens.
Dr. Jeff Sharman

Interestingly, there was a different take on the US regulatory environment. There were some technical reasons that had to do with some of the side effects of combining ibrutinib with venetoclax. Diarrhea was considerably more common and this was in an older population. It was a harder regimen in older patients. The US did not approve it.

You have this difference between the US and Europe. The combination of ibrutinib-venetoclax is not used much in the United States outside of some studies. It does have an endorsement by the National Comprehensive Cancer Network (NCCN). Oftentimes, you could get it, but it leaves a window of opportunity for other BTK inhibitors, which gets us into some of the discussion at the 2024 ASH meeting.

The combination of acalabrutinib-venetoclax or the triplet acalabrutinib-venetoclax with obinutuzumab was compared against two of the harder chemoimmunotherapy regimens, either fludarabine, cyclophosphamide, and rituximab (FCR) or bendamustine-rituximab (BR). In both experimental arms, the doublet (acalabrutinib-venetoclax) and the triplet (acalabrutinib-venetoclax with obinutuzumab) beat chemoimmunotherapy.

Within the field, there’s an expectation that there will be approval fairly soon for acalabrutinib-venetoclax with or without obinutuzumab, which is attractive to patients because it’s an all-oral regimen. You take the acalabrutinib for a while before you start the venetoclax. It cuts down on the risk of tumor lysis quite a bit. It’s convenient, effective, and fixed duration, so patients don’t take it until it stops working. There are a lot of advantages to that combination and it’s one of the things that we’re expecting to get an approval by the FDA sometime in 2025.

Andrew: To be clear though, obinutuzumab is an infused therapy.

Dr. Sharman: Yes, obinutuzumab is an infused therapy. The triplet includes obinutuzumab, which is an infused therapy.

Andrew: Jeff, it sounds like we’ve got lines of therapy. We have people who you might start on a single drug. You might have a discussion with a patient about fixed duration, putting two drugs together, taking them for a while, and if you can get their disease undetectable or very low, they can stop and see how long that goes. That might be attractive.

Dr. Sharman: We haven’t talked about obinutuzumab-venetoclax as another doublet. We’ve talked about BTK inhibitors. We’ve talked about venetoclax. Most of the time, once somebody starts a BTK inhibitor, they stay on it until it stops working.

Obinutuzumab-venetoclax is generally considered a one-year therapy. Patients start with obinutuzumab, get a sequence of several infusions, and continue on it for a total of six months. We start venetoclax somewhere around month two and go through a careful ramp-up. For those patients, we generally can stop at 12 months. For the molecularly favorable, they may not need therapy for another five, six, or seven years. For some of the higher risk, like the IGHV unmutated population, those remissions might not last quite as long. But one of the big things in the field right now is: what’s the optimal doublet?

Most of the time, once somebody starts a BTK inhibitor, they stay on it until it stops working.
Dr. Jeff Sharman

We have obinutuzumab-venetoclax. We’re likely going to have the approval of acalabrutinib-venetoclax. Which of the two would you rather do? There might be different reasons for different patients. I’m excited about the MAJIC study, which we helped design and lead. The study directly compares obinutuzumab-venetoclax to acalabrutinib-venetoclax. We’re going to learn a lot from that. Do you take it for one year or two years? All oral or IV? That’s one of the big questions in the field. If I’m going to pick a doublet, which two do I pick?

What is CAR T-cell Therapy?

Andrew: Some people will progress and there’s one kind of treatment we haven’t talked about yet: CAR T-cell therapy. Where do we stand with that? My friend Dr. Brian Koffman, who’s gone through many different therapies, had CAR T-cell therapy. It’s a big gun. Where does that fit in for people who don’t do so well on some of these other drugs?

Dr. Sharman: CAR T is an amazing science, Andrew. It’s so amazing to see. The concept here is that we have a patient go through a one-day procedure that is conceptually like dialysis. We take out and isolate their T cells then ship those T cells to a lab. They get reprogrammed in part by the use of a virus that’s been engineered to give the cell different instructions. The cells get manufactured, expanded, and infused back into the patient. It’s amazing, Andrew. The CLL cells get destroyed by these reprogrammed T cells and patients can get very deep remissions.

Now, this is a technology that’s not unique to CLL. In fact, it was first used in CLL and acute lymphoblastic leukemia (ALL). The development in CLL stalled a little bit. But in other diseases, such as diffuse large B-cell lymphoma (DLBCL) and ALL, we feel very comfortable as a field saying that CAR T-cell therapy can be curative in those settings. It is too early to say whether it can be curative in CLL or not. My professional opinion is that for some patients, it could be.

Right now, [CAR T-cell therapy]’s only approved for patients who’ve had both a BTK inhibitor and a BCL-2 inhibitor, but it’s been an effective therapy for a number of my patients.
Dr. Jeff Sharman

The clinical trial that led to the approval of CAR T-cell therapy took the worst of the worst patients who were extraordinarily sick. The data that led to the approval wasn’t the most impressive or compelling; it limped across the finish line. That said, sometimes we design studies to get a drug approved by the FDA and then how we use them in the real world can differ. The opportunity with CAR T-cell therapy may exceed the perception from the study that led to its approval.

Who’s it right for? The reality is a lot of older patients with CLL may not ever need it. Give them a pill, send them on their way, and they’re going to be fine. But the younger they are, the more aggressive the disease, or the combination of young patients with aggressive disease, CAR T-cell therapy is something that needs to be factored into their thinking earlier on. Right now, it’s only approved for patients who’ve had both a BTK inhibitor and a BCL-2 inhibitor, but it’s been an effective therapy for a number of my patients.

We think about treatment sequencing… You need to almost have a game plan in mind for somebody from the outset.
Dr. Jeff Sharman

Working with Your Doctor to Decide on a Treatment

Andrew: In 1996, when I started talking to Dr. Kanti Rai, one of the grandfathers in CLL in clinical research, there wasn’t much to talk about. I said, “Dr. Rai, it seems like you have a lot of furniture in the room and you’re trying to figure out where to put the couch, where to put the easy chair, and how to move things around.” It sounds like that’s where you are now, except you have more furniture.

Dr. Sharman: We’ve lived in the house longer, so it’s more cluttered, and we’ve upgraded the couch.

Andrew: I’m sure there are patients whose heads are spinning. Not all CLL patients are the same and treatment is an individualized choice.

Dr. Sharman: Absolutely. There are some patients who, from the physician’s perspective, I would say, “Oh, this is what we’re doing.” Then there are other patients who are very involved in their care and want to be involved in the decision-making. That’s great and they should be involved.

A patient might have preferences, but I may have different preferences based on how I’m thinking. Sometimes it’s a matter of calling to attention some of the potential side effects in a certain circumstance. Maybe somebody wants to do a fixed duration, but their kidneys aren’t doing well, they have bulky disease, or other reasons why we might pick one over the other.

We think about treatment sequencing. If we’re going to pick this first, what’s the patient going to look like five to seven years from now when we might need to do a second therapy? You need to almost have a game plan in mind for somebody from the outset.

When Do Doctors Decide to Start Treatment?

Andrew: I went four and a half years without treatment and felt pretty good. Then I started to develop some lymph nodes and my white blood count fueled by lymphocytes went up to about 283,000. My friend Dave has a white blood count that’s even higher than that, but he hasn’t had treatment and feels fine. When do you start treatment for a new patient?

Dr. Sharman: Back in the 1950s, steroids were a new thing. This was a byproduct of World War II and we were giving steroids to patients with CLL. In some original manuscripts, patients were getting white blood cell counts of 1.5 million, a number we would never see today. Patients always want to know: At what white count do I need to intervene? The answer is: There isn’t a white count where you need to intervene.

We look at the lymphocyte doubling time (LDT). When that number goes up more than twofold in less than six months, that’s our clue that we need to do something.
Dr. Jeff Sharman

You see doctors get squeamish at different thresholds. If you’re a non-CLL doc, you start to get squeamish around 100,000. If you’re a CLL doc, 200,000 or 300,000 will start to make you nervous. If you’ve been around the block a long time, you have patients who come into your clinic with a white count of 600,000 who are stable. You get desensitized to it.

It’s not a number; it’s a rate of change. It’s not about whether you hit 100, 200, 400, or 600; it’s how quickly your numbers are increasing. For a patient who’s climbing quite rapidly, we look at the lymphocyte doubling time (LDT). When that number goes up more than twofold in less than six months, that’s our clue that we need to do something.

There are other reasons we might treat somebody. When they have bulky lymph nodes, start developing marrow dysfunction, get anemic or their platelets are starting to go down, those can be reasons to intervene. If you treat a lot of CLL, you see some weird ones. I had a patient who had direct kidney involvement with the CLL and had significant kidney problems; that’s not a very common one.

What comes up periodically is fatigue. Some patients have disabling fatigue. They might be 55 years old. They’re not depressed. Their thyroid is fine. They’re not iron-deficient. But they can only go to work for four hours before they have to come home. Disabling fatigue is a reason to treat. These are all pretty well spelled out in the iwCLL criteria: rate of change, symptomatic, bulky lymph nodes, marrow dysfunction, and others. Those are the reasons we treat patients.

I have had some young women, one or two in particular, who were diagnosed at childbearing potential. It’s fine to have kids.
Dr. Jeff Sharman

CLL and Fertility Concerns in Younger Women

Andrew: Another thing that people wonder about is if they’re told they’re diagnosed with CLL and they’re younger and female, would you tell them not to get pregnant?

Dr. Sharman: It hasn’t come up all that much because most women, if they’re going to have kids, will do so before their mid-40s or even younger. The typical age of diagnosis of CLL is 72 with the first line of therapy typically at 74, so it’s not a common scenario. That said, I have had some young women, one or two in particular, who were diagnosed at childbearing potential. It’s fine to have kids. It doesn’t come up often, but it’s not a contraindication.

Addressing Side Effects with Your Doctor

Andrew: We had people who wrote that they had a back rash, a migraine, or this or that. Is it because of the drug they’re taking for CLL, is it the CLL, or is it something else? How do you determine if it’s the drug, the illness, or something else?

Dr. Sharman: There’s obviously no uniform answer to all of that. It’s going to take a close relationship with your oncologist. I always invite my patients to ask questions and do my best as a clinician to say, “Yep, I own that one,” or, “Nope, I don’t think that’s me,” and call balls and strikes. I figure if I’m honest with it and own up to something, then they’ll believe me when I say it’s not on me.

As doctors, we don’t always know. Sometimes it takes working it out together with your patient about how you solve this.
Dr. Jeff Sharman

Even if I’ve done this for a long time, there are times when we don’t know. Sometimes you have to hold the drug for a little while, see if it gets better, restart it, and see if it comes back. You can do that with side effects that are of lower consequence. If it’s a major side effect, like a hemorrhage, that’s a different story altogether. As doctors, we don’t always know. Sometimes it takes working it out together with your patient about how you solve this.

What is Richter’s Transformation?

Andrew: Jeff, there’s a small percentage of patients where you talked about aggressive disease and there’s something called Richter’s Transformation. Could you explain that? One of the patients who wrote in is worried about that.

Dr. Sharman: Richter’s Transformation is a potential complication of CLL that is definitely more concerning. It’s generally when the CLL cell acquires a more aggressive behavior and becomes DLBCL, which is a different entity altogether. It requires a different treatment approach. Generally speaking, we reach for more traditional chemotherapy in that setting. In some cases, it can be fairly resistant to therapy. It’s a disease that can move very quickly.

Richter’s Transformation is rare… But if you’ve had the disease for 20 years, that risk starts to build up.
Dr. Jeff Sharman

If it’s suspected, the clinician has to jump into gear quickly. It requires a biopsy because you have to get a biopsy and prove that it’s not Richter’s Transformation quickly. Most often, you see a lymph node that’s swelling very quickly and disproportionate to the others. If you’re going to get a PET scan, it’s oftentimes bright on a PET scan. These are the things we’re thinking of as a clinician.

Fortunately, Richter’s Transformation is rare. It’s seen in about 1% of patients per year. But if you’ve had the disease for 20 years, that risk starts to build up. It probably hits a plateau at around 15 to 20%.

Sometimes, Richter’s Transformation is misdiagnosed. If you stop somebody on a BTK inhibitor, oftentimes their nodes will increase pretty quickly thereafter and in that circumstance, I’ve seen cases where Richter’s may have been inaccurately diagnosed. It requires a certain degree of suspicion if you’ve got a biopsy right after starting BTK inhibitors.

How Do Doctors Treat Younger Patients with CLL?

Andrew: I know this is complicated for people. We discussed that if you haven’t had treatment, you don’t treat the number; you look at the overall patient. You have a variety of medicines. BTK inhibitors are used by themselves or in combination, and there are different generations. We have clinical trials for some of these treatments mentioned at the 2024 ASH meeting. There are phase 1 trials for BTK degraders. CAR T-cell therapy is for people with more aggressive disease, although we’ll see if that creeps up a little earlier for younger patients.

Some people on Facebook, for instance, are under 50 with CLL and I know it’s not the most common. Is their age of diagnosis a bad thing? Are they going to have a rougher time with CLL because they’re diagnosed younger? Will they not live as long? What do you tell a younger patient based on their age?

Our therapies are as effective in younger individuals as they are in older individuals… we need to come up with something that’s going to keep this disease in control for quite a bit longer.
Dr. Jeff Sharman

Dr. Sharman: For these patients, we have to plan not only for the next 10 to 15 years but also for the next 30 years. To some degree, we celebrate that we have a lot of new tools to control the disease. It is a reasonable question to ask: Can you use these tools to control it for twice as long or three times as long as somebody who’s diagnosed at age 80? It’s a different game plan.

Our therapies are as effective in younger individuals as they are in older individuals and in some cases, maybe even more effective in younger individuals. But it does require some thoughtfulness to think about the fact that we need to come up with something that’s going to keep this disease in control for quite a bit longer.

The field is moving so fast that the tools we’ll be using five to seven years from now may not even have been conceived of at this point. If somebody’s diagnosed younger, it’s fair to assume that there will be more tools in the tool shed down the road.

There’s a general misperception that you would only do a clinical trial if you’re running out of options but it’s not the case at all.
Dr. Jeff Sharman

Considering a Clinical Trial for CLL

Andrew: Some of your patients are on clinical trials. When someone meets with their CLL doctor, should clinical trials be part of the discussion? Do you lay all this stuff out and then say what are in trials that they should consider as well?

Dr. Sharman: Andrew, we treated the very first CLL patient in the world with ibrutinib in my clinic and I’ve been a believer ever since. In many cases, we’re so grateful for patients who’ve volunteered for studies in the past because they’re the ones who’ve moved this field forward.

Clinical trials are not a one-size-fits-all scenario. There’s a general misperception that you would only do a clinical trial if you’re running out of options but it’s not the case at all. There are great studies for previously untreated patients, patients on first relapse, and patients who are resistant to certain treatments. In many cases, for the last 15 to 20 years, some of our best options have only been available in research studies.

It calls for a unique answer for every patient and what sort of studies might be available and accessible to them, but I would definitely like to dispel the notion that it’s only a therapy for patients who’ve run out of options.

Andrew: I was in a phase 2 trial in 2000 for FCR and it led to a 17-year remission, for which I’m very grateful. Would I have had that otherwise?

Concerns About Funding for CLL Research

Andrew: There are challenges about funding for research and researchers are worried. From the point of view of a CLL patient or CLL researcher, do you have a concern where that throws cold water on progress for CLL?

Dr. Sharman: It’s a great question and a sensitive discussion. People are going to have different opinions on this. The funding environment is shifting and I don’t know if we totally understand all the implications. It is worth noting that many studies are supported by the pharmaceutical industry. I know that the pharmaceutical industry is oftentimes considered a bad word, but they’ve been the friends that have brought us a lot of progress in the last handful of years.

The funding environment is shifting and I don’t know if we totally understand all the implications.
Dr. Jeff Sharman

For studies that are sponsored by pharmaceutical companies, these are oftentimes trying to develop a new drug or getting a new drug approved, so I don’t see much impact there. But when it comes to academic, university-based exploratory studies that are grant-funded, some of those will be impacted and some of the basic science research is up in the air right now. People don’t know if grants are going to be renewed or not. Amongst my academic colleagues, there is a great deal of concern and consternation about what the funding changes will mean. The whole story hasn’t been written yet, but like anything, it’s a nuanced answer where some areas will be affected more than others.

Andrew: How many years have you been at it, Jeff? How many years have you been in practice and seeing CLL patients?

Dr. Sharman: I finished my fellowship in 2008 at Stanford and I’ve been in practice in Eugene, Oregon, since then. Fellowship, residency, med school, and undergraduate studies all take a while. I don’t know where you start the clock, but I’m getting gray. How’s that?

Is There a Cure for CLL in Sight?

Andrew: I used to ask Dr. Keating, one of the grandfathers in Seattle, about this. Will we see a cure for CLL in your lifetime? Dr. Sharman, do you have hope for a cure?

Dr. Sharman: Unequivocally yes.

Andrew: I like that answer.

Dr. Sharman: I’ll leave it simple.

The world has changed in the last decade for what it means to be a patient with CLL and it is an area where I think hope is very reasonable.
Dr. Jeff Sharman

Andrew: I like that. When you put it all together, we have a variety of treatments that you can choose from with your patient based on their preference, your recommendations, and their clinical situation. We had some early- and later-stage research at the 2024 ASH meeting in December. Other meetings will happen during the year and then we’ll have ASH again, so we’ll get to talk again. You have different doublets and triplets, and even different ways of doing it. It sounds like there’s great hope for people.

Dr. Sharman: I couldn’t agree more, Andrew. I feel like the world has changed in the last decade for what it means to be a patient with CLL and it is an area where I think hope is very reasonable.

Conclusion

Andrew: Like you, I’ve been at this a while. I was diagnosed in 1996. I’ve seen some sick people, people who’ve been on clinical trials like me, and people on newer medicines. Most people are doing well. My CLL is at a very low level. You may be in long-term remission and though we may not be cured, go live your life. With Dr. Sharman and his colleagues doing the research and the studies that keep coming out, we have every reason to think that we can do that for a long time. Dr. Sharman, thank you so much for being with us and explaining all this.

Dr. Sharman: It’s my pleasure. Thank you so much, Andrew, and I look forward to future conversations.

Andrew: Remember: knowledge — and we’ve been getting some today — can be the best medicine of all.

Stephanie: Thank you, Andrew and Dr. Sharman, for leading this wonderful and very educational discussion at The Patient Story and taking the time out of your very busy schedules to provide such great insights.

Thank you once again to our sponsor, AbbVie, for supporting our independent patient education program. As always, we retain full editorial control. We want to point out some incredible resources from our friends at partner organizations, like The Leukemia & Lymphoma Society and the CLL Society.

The LLS has a community section for people to meet and chat with other blood cancer patients and care partners; in this case, in CLL. The LLS offers many things, but one of the free resources is the Clinical Trial Support Center. It’s free, one-on-one personal guidance throughout the process before, during, and after clinical trials, which, as we know, can be a lot.

The CLL Society has a lot of great programs, too. It’s dedicated to the CLL community and offers programs like Expert Access™, connecting patients to world-renowned CLL experts for a free virtual second opinion, which is so important, especially with all the things that are going on, as you can see from this discussion.

I hope this program was helpful and that you walk away with more knowledge and questions to ask your doctors. Thank you for coming and we hope to see you at another program. Take good care.

Webinar: CLL Treatment Advances: Moving From Research to Reality

Hosted by The Patient Story

Watch On Demand

Thanks to The Leukemia & Lymphoma Society and CLL Society for their partnerships.

Thank you to AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.

CLL Programs

CLL Patient Stories

Serena V., Chronic Lymphocytic Leukemia (CLL)

Symptoms: Night sweats, extreme fatigue, severe leg cramps, ovarian cramps, appearance of knots on body, hormonal acne

Treatment: Surgery (lymphadenectomy)

Margie H., Chronic Lymphocytic Leukemia

Symptoms: Large lymph node in her neck, fatigue as the disease progressed

Treatment: Targeted therapy

Nicole B., Chronic Lymphocytic Leukemia

Symptoms: Extreme fatigue, night sweats, lumps on neck, rash, shortness of breath

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CLL Treatment Advances: Moving from Research to Reality

Targeted Therapies, Breakthrough Combinations, and Minimal Residual Disease (MRD)

Introduction

What Happens After a CLL Diagnosis?

The Latest Treatment Options for CLL

What is Pirtobrutinib?

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