Jessica’s Stage 4 BRAF Mutation Colon Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Jessica was diagnosed with stage 4 colon cancer at 26. Four months before her diagnosis, she began experiencing intense episodes of stomach cramps, diarrhea, and vomiting, which would last for 48 hours. She initially thought she had a gluten intolerance and visited emergency doctors several times. They misdiagnosed her with gastroenteritis and prescribed ineffective medication
Frustrated by the recurring symptoms, Jessica pushed for blood tests, suspecting something more serious. During a particularly severe episode of stomach cramps, she called an ambulance and was taken to the hospital. Blood tests revealed that she was severely anemic, requiring multiple blood transfusions. A subsequent CT scan suggested the presence of a tumor in her colon. Despite some reluctance from doctors to comment on the findings, a colonoscopy confirmed the diagnosis.
Jessica described the colonoscopy as a traumatic experience since she was awake during the procedure and could sense something was wrong. Afterward, she was told she had a tumor blocking part of her colon, causing her digestive issues. Although it wasn’t immediately confirmed as cancerous, Jessica underwent surgery to remove half of her colon (a hemicolectomy), during which 36 lymph nodes were tested. The results showed that the cancer had spread, confirming stage 4 colon cancer.
Jessica faced a roller coaster of emotions when told she had the BRAF genetic mutation, which is resistant to chemotherapy. However, a post-surgical PET scan revealed no remaining cancer in her body, which was a miracle. Despite the initial bleak prognosis, she completed six months of chemotherapy and has been in remission since November 2022.
Throughout chemotherapy, Jessica experienced manageable side effects, including fatigue and neuropathy. Mentally, she remained optimistic, having come to terms with living a fulfilling life regardless of her prognosis. Her treatment gave her a new perspective on life, changing her outlook on relationships and personal boundaries. She acknowledged grieving her old self but ultimately embraced her transformed identity.
Jessica’s message to others is that they are stronger than they realize. She encourages people to see difficult experiences as temporary and reminds them that life can look vastly different in a year, offering opportunities for growth and new perspectives.
Name: Jessica T.
Diagnosis:
Colon Cancer
Staging:
Stage 4
Mutation:
BRAF
Symptoms:
Severe stomach cramps
Diarrhea
Vomiting
Anemia (discovered later)
Treatments:
Surgery: hemicolectomy (removal of half the colon)
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Paul was diagnosed with stage 3 rectal cancer in early 2024. He had initially experienced unusual bowel-related symptoms, such as frequent bowel movements and loose stools, for over a year before his diagnosis. During a routine physical in late 2023, he brought up his concerns to his doctor, who advised monitoring the symptoms, suspecting inflammation or a dietary issue. Over the next few months, the symptoms persisted and eventually worsened, with the appearance of blood in his stool. This led to a referral to a gastroenterologist, who recommended a colonoscopy, ultimately revealing a sizable tumor.
Paul admits he might have downplayed his symptoms had it not been for his wife, who urged him to seek further medical evaluation. Despite being young and in good health, Paul and his doctors initially considered alternative diagnoses like ulcerative colitis, Crohn’s disease, or diverticulitis, conditions more common in people his age. However, his intuition and his wife’s insistence that something more serious was at play led to the colonoscopy, where the tumor was discovered.
The diagnosis was a shock to Paul and his wife, especially since they had recently welcomed their first child and were enjoying other life milestones. The colonoscopy revealed a tumor consistent with rectal cancer and further tests, including a biopsy, confirmed it was malignant. Additional imaging, such as a CT scan and an MRI, revealed that the cancer had spread to nearby lymph nodes, leading to a stage 3 diagnosis.
Paul began his treatment plan, which included chemotherapy, radiation, and eventual surgery. His medical team opted for CAPOX chemotherapy and planned for radiation therapy to follow. The goal was to shrink the tumor and affected lymph nodes to make surgical resection more effective. Radiation was strategically moved closer to the surgery timeline to avoid excessive scar tissue formation.
Paul is also passionate about raising awareness, particularly among younger people, about the rising rates of colorectal cancer. Encouraged by his wife, he started sharing his experience on social media where his videos discussing symptoms and the importance of early detection reached hundreds of thousands of viewers. He emphasizes the importance of being one’s own health advocate, urging others not to ignore symptoms or delay crucial medical tests like colonoscopies. The high cost of these procedures for those under 45 prompted Klug to advocate for better insurance coverage, as the financial barrier often leads to dangerous delays in diagnosis.
Despite the challenges, Paul remains optimistic and is determined to use his platform to spread awareness, especially among younger individuals, about the importance of recognizing cancer symptoms early.
Name: Paul K.
Diagnosis:
Rectal Cancer
Staging:
Stage 3
Symptoms:
Frequent bowel movements
Loose stools
Blood spotting in stool
Treatments:
Chemotherapy: CAPOX (capecitabine and oxaliplatin)
Radiation
Upcoming surgery: colon resection
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Partner with Your Oncologist for Better Multiple Myeloma Care
The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Multiple myeloma patient advocate Cyndie Dunlap and her doctor Dr. James Berenson, president and medical director of the Berenson Cancer Center, discuss what makes their patient-doctor teamwork truly effective.
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Partner with Your Oncologist for Better Multiple Myeloma Care
Hosted by The Patient Story
Join myeloma patient advocate Cyndie Dunlap and her doctor, Dr. James Berenson as they discuss what makes their patient-doctor teamwork truly effective.
Learn how to build trust and open communication with your healthcare team. Understand the role of shared decision-making in multiple myeloma care. Hear first-hand experiences of navigating chronic cancer with your doctor by your side. Discover practical tips for advocating for yourself or a loved one during the treatment process. Explore how teamwork fosters a supportive environment for long-term care.
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 Sanofi for supporting our patient education program. The Patient Story retains full editorial control over all content
Tiffany Drummond: I’m an advocate who has worked in cancer research for 20 years, but more importantly, I became a care partner advocate when my mom was diagnosed with endometrial cancer in 2014. Her journey led me on a quest to find out as much as I could to help with her care. Information wasn’t easy to find, that’s why we at The Patient Story put on programs to help people navigate life after diagnosis.
This program is hosted by The Patient Story. Our multi-platform organization aims to help people navigate life before, at, and after diagnosis in human terms through empowering patient stories and educational discussions focused on how patients, caregivers, and their partners can best communicate with their doctors as they go from diagnosis through treatment with myeloma.
We want to thank The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists, to help you communicate with members of your healthcare team and provide information about treatment options.
We want to thank our sponsor, Sanofi, for its support, which helps us host these programs for free. The Patient Story retains full editorial control over all content. Please keep in mind this program is not a substitute for medical advice.
I have two exceptional guests. Cyndie, a multiple myeloma patient, and her wonderful doctor, Dr. James Berenson, a hematologist-oncologist at the Berenson Cancer Center in West Hollywood, California, and the president and CEO of the Institute of Myeloma and Bone Cancer Research.
Cyndie’s Multiple Myeloma Story
Initial Symptoms
Tiffany: Cyndie, what were your symptoms leading up to seeing a hematologist-oncologist?
Cyndie Dunlap: I was having a little bit of back pain, but I was prompted when I got a routine DEXA scan and was told to take Fosamax (alendronate). I decided to see a bone specialist and instead of going on Fosamax, the bone specialist found myeloma.
Tiffany: Take me through that. What made you decide to talk to someone else?
Cyndie: My first career was as a critical care dietician, so I had some hospital experience and I also had a sister who had a lifelong illness. I realized to trust my gut. I knew that I wanted to see a specialist.
Finding the Berenson Cancer Center
Tiffany: How did you get to the Berenson Cancer Center, which is in a whole other state from where you live?
Cyndie: I started at a top 10 cancer hospital. I was diagnosed at the beginning of the pandemic, so I didn’t have an option. I did the standard treatment that every myeloma patient gets put on and had a transplant.
I always knew that I would get a second opinion when things opened up. I started researching and Dr. Berenson’s name kept coming up over and over and over again, so I decided he was where I was going to start.
The Berenson team absolutely fought for my treatment to get covered. They’re very skilled in navigating insurance.
Cyndie Dunlap
Insurance Concerns
Tiffany: Was it an issue having to go to a different state? Did that affect your insurance at all or was it more seamless for you?
Cyndie: It was fairly seamless. My insurance is national and Dr. Berenson accepts different kinds of insurance, so that was not an issue at all. I’ve had a great coordinator in case I had any issues.
Not that you don’t have to fight. The Berenson team absolutely fought for my treatment to get covered. They’re very skilled in navigating insurance as well, so I appreciate the teamwork on that end.
What is Multiple Myeloma?
Tiffany: Dr. Berenson, can you explain in basic terms what multiple myeloma is?
Dr. James Berenson: Multiple myeloma is a form of blood cancer, but it’s bone marrow-based and it involves a type of white cell called a plasma cell. The job of a plasma cell is to make antibodies. Normally, one plasma cell makes one antibody. About a half percent of the cells in your bone marrow are plasma cells and each one makes a different antibody.
What happens in myeloma is it starts with one cell that keeps dividing and dividing. Eventually, there are billions of these cells in the bone marrow, so the protein in the blood—the antibody—sticks out like a sore thumb and tells the patient there’s a marker for myeloma.
Myeloma can cause bone destruction, blood count problems because it’s in the bone where you make all your blood cells, kidney problems, or high calcium from the calcium leaching out of your bones. However, myeloma patients are doing much better because of all the new treatments.
Tiffany: It seems very complex as opposed to a solid tumor, so thank you so much for explaining that.
The Initial Consultation
Tiffany: You get patients pretty much from all over the country. How do you approach your patients? In Cyndie’s instance when she already saw someone, what was your initial consultation like? What general questions are asked and what general information do you give at the initial consult when you meet a patient?
Dr. Berenson: I saw a new patient who came in from a kidney doctor because his kidneys were a little off. The big thing here is to make sure that you take the whole patient into account. A lot of things are blamed on myeloma. A patient who’s anemic could probably be iron deficient. Kidneys don’t quite work right, but that may be from diabetes and not myeloma.
I’ve seen this all the time. What happens many times is patients have a blinder-on type of doctor that blames everything on myeloma, they throw everything but the kitchen sink, and the patient just has iron deficiency. He doesn’t even need treatment for myeloma. They have kidney disease maybe because they took too much medication, from diabetes, or high blood pressure. When you see a patient, you have to think about the whole patient and not just the myeloma.
Take into account: what are their goals for treatment? How old are they? What’s their quality of life? What are their expectations? Do they want to travel? Do they want to stay local? All these things come into account. It’s not just myeloma.
He looked at me as a whole patient and explained things incredibly thoroughly. I’d had myeloma for two years, but he described the plan that he wanted to put me on and why he wanted to and it’s been amazing.
Cyndie Dunlap
Getting a Second Opinion
Tiffany: Cyndie, when you wanted a second opinion, you knew you wanted to go to Dr. Berenson’s cancer center where you’re getting treatment. How did that look for you? Did you already have in mind what your quality of life needed to be in order for you to sustain yourself? Or did you say you want to see what Dr. Berenson had to say first and go from there?
Cyndie: Withmy previous experience, I was put through some pretty hardcore treatment. It was very fear-based and not quite as helpful. I’m a very positive person, but that was probably the biggest difference when I went into Dr. Berenson’s office. We discussed. He looked at me as a whole patient and explained things incredibly thoroughly. I’d had myeloma for two years, but he described the plan that he wanted to put me on and why he wanted to and it’s been amazing.
Honestly, I’m doing things that I didn’t think I’d be able to do and I have no hesitancy doing them. One of the things that I appreciate is that I am youngish to have this disease and I live a very carefree life. I have virtually no side effects from the treatment I’m on. He had me in complete remission within, I would say, two months of starting this treatment and I had not achieved that after all the hardcore chemo.
One time, I asked him if I could go down on steroids and we discussed it and what my goals were. Ultimately, I trust his judgment. He’s one of, if not the best, in the world, but I appreciate that he takes the time to explain why he does or does not want to do something.
The goal here is to give patients a long life that they can have with great quality.
Dr. James Berenson
Novel Approaches to Care
Tiffany: Dr. Berenson, you have this novel approach to the way you do care. Do you find that most of your patients are open to that? How do you approach that when the actual treatment plan isn’t something that is a standard?
Dr. Berenson: I have the outcome data now to say we’re doing well. Our patients are living longer. As my daughter said, “They’re living better and they’re living longer.” When you walk into our clinic, you don’t even know anybody has myeloma or is sick because we don’t make them sick with treatment and yet they do well. There’s nothing better.
What Cyndie’s getting isn’t approved as a single agent, but we’ve published it works great. There’s another antibody in the company that makes it and another drug said you have to use them together. My 90-year-old, who’s been in complete remission for five years, would disagree. I won’t say everything works for every patient because it doesn’t. I’d rather start slowly and give drugs in a way that people don’t get sick.
Most oncologists don’t understand that the goal here is to give patients a long life that they can have with great quality. If people are living with better quality, they’re going to live longer and that’s shown in the results from our patients over the last 20 years.
Part of the story is our hands-on approach. Everybody has my cellphone number… We respond immediately and that makes a huge difference in outcomes.
Dr. James Berenson
Tiffany: You both are the epitome of a patient-physician partnership. You’re communicating with each other and very trusting of each other. You know that this plan is what works for you. Like you said, it doesn’t work for everyone, but your data is clearly showing that, which is promising.
Dr. Berenson: Part of the story is our hands-on approach. Everybody has my cellphone number. I don’t care when they call me, day or night. It doesn’t bother me. My daughter had a problem that a GI doctor helped with and we were all over it within an hour or two. That’s how I respond to my patients.
Cyndie: In fact, I had a GI problem and Dr. Berenson had me on the phone with the same GI doctor.
Dr. Berenson: Being available is such a big thing. I had a patient who came in with neck pain and had cord compression lower down. I got his MRI that same afternoon. Thank God he didn’t have anything on his neck, but if he did, we would have been all over it that afternoon with the surgeon and the radiotherapist. We respond immediately and that makes a huge difference in outcomes. It’s not just throwing the right brews and cocktails together of drugs, but also being available for all these other things and trying to sort them out so they don’t become major problems for the patient.
When you talk to him, you realize that he has an understanding of this disease like no one else.
Cyndie Dunlap
Traveling for Your Care
Tiffany: Cyndie, how often do you have to travel to see Dr. Berenson and what does that look like? Do you have a local healthcare team that communicates with him and shares your medical information? How does that work?
Cyndie: My treatment is every two weeks. Up until recently, I traveled every 4 to 10 days. We’ve created a special arrangement where Dr. Berenson is my primary and does all of my oncology and myeloma blood work. I receive one treatment a month locally and then I go to California for a week once every four weeks. I appreciate that he’s willing to talk to my local oncologist if I need to, but honestly, he has me in such good shape.
If anything changed and, for some reason, I needed a different treatment, I would go to California more frequently. It’s a hands-on approach. When you talk to him, you realize that he has an understanding of this disease like no one else. My kids and I all want me in his care.
Tiffany: Dr. Berenson, can you talk to me about monitoring from afar? Has the pandemic even changed how you do that? Is telehealth part of your care now? What’s that like for you when you have patients who don’t live in your local area?
Dr. Berenson: I had a consult with a guy from another country and his doctor’s the head of their myeloma unit. I wanted to give a drug that Cyndie’s on with another one because he has a very specific genetic marker. Sometimes, it’s hard to deal with other countries because they don’t have approvals and these people can’t get drugs. It’s very frustrating. I do telehealth with people all over the country and around the world, and I’m aghast at some of the care.
I have a patient in Nelson, British Columbia, who’s getting his care for his myeloma from a primary care doctor. There’s an incredible myeloma doctor I know well in Calgary, 150 miles east, but he can’t go there because it’s outside the province. He’s got a marker in which he would do beautifully on what Cyndie’s on, but he can’t go. This is frustrating for me because you know what to do, but your hands are tied.
I appreciate the way that he practices medicine and the thought behind how he approaches his patients in the clinic is filled with hope.
Cyndie Dunlap
Why is Your Patient-Physician Relationship Successful?
Tiffany: Your relationship is one that a lot of patients want to have with their physician. Cyndie, what makes your relationship with Dr. Berenson so successful?
Cyndie: He’s a very unique physician as well as an outstanding human being. There was another patient that I know who said this is a passion and not just his profession. I do believe that I am positive because I had a different experience. I appreciate the way that he practices medicine and the thought behind how he approaches his patients in the clinic is filled with hope. I appreciate the way that he treats me holistically. It’s not fear-based. I’m positive and I respond to that. I’m not alone in this feeling about him. You could survey his patients and I think you’d get similar responses over and over again.
What Makes Your Patient Relationships Special?
Tiffany: Dr. Berenson, what makes you so successful that your patients travel hundreds and thousands of miles to see you and want to keep coming back? What do you think it is that makes that relationship so special where they feel that they’re getting the best care?
Dr. Berenson: We have the best survival rate in the entire world by far. We’ll be publishing that, so I can’t say what it is right now. Let’s not let facts get in the way of opinion. If I were a patient, show me the data. Let me look at it. Let me peruse it. That will not tell you the quality of life data, but I always say if you’re feeling better, you’re probably living longer.
I don’t think very many oncologists give their cellphone numbers, but I do. Everybody has it. I don’t care when you call me. I had a patient who was worried that she had dents in her skull, which turned out to be nothing. But she was freaking out, so I said, “Come in tomorrow morning. I’ll get X-rays in the clinic.” Then I can reassure her that she’s fine. You don’t want that anxiety. You want to get rid of it with reassurance.
For example, like what happened with Cyndie, I got her to the guy who knows. I don’t know about her gut, but I know the guy to deal with it. Figure out a triage. Figure out what you don’t know. Don’t pretend you know everything. Know your limitations. All of that comes into play, but the big thing is availability, willingness to think outside the box, and not being afraid to try things.
I use drugs in more combinations to treat myeloma than any oncologist in the world. I’m not afraid. Sometimes you blow it and it doesn’t work, but I’m also quick to respond. We have a new marker that’s allowing us to respond. You can respond quickly if something’s going awry and that’s cool. I have a patient who’s the first person in the world going on a trial using that marker to make a clinical decision, so we’re very excited about that.
I’m more interested in trying to figure out how to use fewer drugs so we have less cost to the system and fewer side effects for patients.
Dr. James Berenson
Multiple Myeloma Clinical Trials
Tiffany: Dr. Berenson, do you conduct clinical trials at the Berenson Cancer Center or do you keep it more investigator-initiated where you’re developing it yourself?
Dr. Berenson: We try to spread the love. Sometimes, we start on a whim and we’ll try a drug that may be approved for something else, repurpose it, we’ll get an activity, and then we’ll go to the company to spread the love and do it with other sites around the country. Sometimes we’ll piggyback on larger drug company-sponsored trials.
I’m more interested in trying to figure out how to use fewer drugs so we have less cost to the system and fewer side effects for patients. Perhaps, we’re going to be able to intermittently treat with some of the newer drugs and the better markers we’re going to have to track myeloma.
I tell people that no matter where they are in the country, they should at least try to get a consultation from Dr. Berenson before they start treatment.
Cyndie Dunlap
Key Takeaways
Tiffany: This conversation has been great. It’s going to be evident to anyone how this patient-partner relationship works. Cyndie, if you could advise someone who may be newly diagnosed or even relapsed/refractory, what is something that you wish you knew?
Cyndie: I would have asked my initial oncologist: what are the other options? It was very directly said to me that my treatment was the only way to go. I tell people that no matter where they are in the country, they should at least try to get a consultation from Dr. Berenson before they start treatment. If not for the pandemic, that’s the way I would have gone. I wish that I had started with him. It would have saved me from getting a transplant and all kinds of chemo.
Tiffany: I’m pretty sure there are some people out there who feel that they’re stuck in one place. There’s no one replacing Dr. Berenson, but there may be someone close to him in your local community. Find that person if you can’t get to Dr. Berenson.
We shouldn’t allow this hands-off and less involved approach to occur… To me, it’s individualized care and getting to know everything about your patient and their life. Only then can you personalize care.
Dr. James Berenson
Dr. Berenson: You have to try to push what people should be doing. What should be the norm? The norm should be availability. The norm should be that you touch a patient and examine them. The norm should be that you spend enough time to find out whether their eyes, ears, nose, throat or something else is going on. That should be what we allow.
We shouldn’t allow this hands-off and less involved approach to occur. People are talking about personalized medicine. I find it rather ironic at a time when medicine is so much more depersonalized and I don’t think that’s the idea of personalization. To me, it’s individualized care and getting to know everything about your patient and their life. Only then can you personalize care.
Tiffany: Especially for my loved one that I was caregiving for, their care team became our family. I looked at them like I would look at family and wanted the best for them like I would family as well.
Conclusion
Tiffany: Thank you, Cyndie and Dr. Berenson, for a great discussion. Dr. Berenson is such a colorful character and brings humanization to cancer that we at The Patient Story continuously strive for. It is important to be empowered so that you and your caregivers can make informed decisions about your care.
Thanks again to our sponsor, Sanofi, for its support of our independent patient program and to our partner The Leukemia & Lymphoma Society. Check out the links on their website and also check out their information resource center, which provides free one-on-one support. Until next time.
Building Bonds Episode 1: Patient-Doctor Partnerships for Better Waldenström Care
The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Dr. Shayna Sarosiek, an expert in Waldenström macroglobulinemia, and patient advocate Jason Euzukonis discuss what makes their patient-doctor teamwork truly effective.
Building Bonds Ep. 1: Partner with Your Oncologist for Better Waldenström Care
Hosted by The Patient Story
Join Waldenström expert Dr. Sarosiek, and patient advocate Jason Euzukonis, as they discuss what makes their doctor-patient teamwork truly effective.
Learn how to build trust and open communication with your healthcare team. Understand the role of shared decision-making in Waldenström treatment. Hear first-hand experiences of navigating chronic cancer with your doctor by your side. Discover practical tips for advocating for yourself or a loved one in the treatment process. Explore how teamwork fosters a supportive environment for long-term care.
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 Pharmacyclics, an AbbVie company, for its support of our patient education program. The Patient Story retains full editorial control over all content
Tiffany Drummond: I have worked in cancer research for 20 years, but more importantly, I became a care partner and advocate when my mom was diagnosed with endometrial cancer in 2014. Her journey led me on a quest to find out as much information as I could to help with her care. Quite honestly, it wasn’t easy to find and that’s why we at The Patient Story put on programs to help people navigate life after diagnosis.
This program is hosted by The Patient Story, a multi-platform organization that aims to help people navigate life before and after diagnosis in human terms through in-depth patient stories and educational discussions, focused on how patients and care partners can best communicate with their doctors as they go from diagnosis through treatment in Waldenström’s.
We want to thank The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists who can help you communicate with members of your healthcare team and provide information about treatment options.
We want to thank our sponsor, Pharmacyclics, an AbbVie company, for its support, which helps us host more of these programs for free to our audience. The Patient Story retains full editorial control over all content. While we hope this is helpful, please keep in mind that this program is not a substitute for medical advice.
Jason Euzukonis: My name is Jason. I recently turned 50 years old. I’m married and have two children who are 13 and 10. I live on the North Shore of Massachusetts. I’m an avid runner and a sales rep in the athletic footwear industry, and I was diagnosed with Waldenström’s macroglobulinemia in June 2018.
Dr. Shayna Sarosiek, Hematologist-Oncologist
Stephanie Chuang: Dr. Shayna Sarosiek is someone whom we’ve had the pleasure of collaborating with before and have heard so many great things about. Dr. Sarosiek, can you tell us about who you are, what you do, and what drew you to this specialty?
Stephanie: We hear about shared treatment decision-making, being an empowered patient, or self-advocacy, and sometimes that concept can get a little bit lost in the mix. There’s a lot of conversation without specific examples. Our goal is to showcase not the only kind of communication and the relationship that can happen between a physician and a patient but also to showcase what a great relationship looks like.
Jason and Dr. Sarosiek have a great relationship and a lot of that is centered on communication and long-term relationship building. Having said that, Jason, what were the signs that something wasn’t right and who was the first physician you went to see?
Jason: I’m a runner and I know my body well. In the spring of 2018, I noticed signs that something wasn’t right. I can go for a run and feel tired but still slog through a few miles, but I started feeling some fatigue that felt off. Three or four minutes into the run, I would feel like my body was shutting down. It felt like blood and oxygen weren’t getting to my muscles.
After I learned my diagnosis, it turned out that’s exactly what was happening. It led me down the path of trying to figure out what was going on. I went to my primary care physician then to a hematologist then to a general lymphoma specialist. I went through multiple steps before I ended up at Dana-Farber with a team that specialized in my subtype of non-Hodgkin’s lymphoma.
Primary care physicians are not cancer specialists.
Stephanie Chuang
Stephanie: I want to dive into some of this because I think different parts of your story will resonate with different people. As we know, primary care physicians are not cancer specialists. Yours ordered blood work and saw something was wrong, but your self-advocacy started pretty quickly. Can you describe that?
Jason: The primary care physician was able to identify that something wasn’t right. I was very anemic and they had me come in within a day or two to make sure blood counts weren’t crashing in case there was some internal bleeding, in which case I would have needed to go to the emergency room. Things seemed stable, even though my blood counts were low, and that’s when they kicked me over to the hematologist.
I started doing more research and realized that I needed someone who knew the disease.
Jason Euzukonis
As I look back, there’s certainly a role for hematologists, but even then, especially for my situation with a rare type of non-Hodgkin’s lymphoma, you want to go to another level. That’s when I started doing more research and realized that I needed someone who knew the disease.
There were some things that the hematologist said that jumped out at me. When they were talking about treatment, they said, “We treat all these tough types of non-Hodgkin’s lymphoma the same way with chemotherapy.” I thought that didn’t sound right. I was fortunate that I knew someone who worked in a lab at another medical center in Boston and that’s when we started taking a deeper dive and getting the true diagnosis of Waldenström’s macroglobulinemia.
This is why I think it’s important for a patient to continue doing research. They were great over there, but during that time, if you search Waldenström’s macroglobulinemia, it’s not going to be too hard to find The Bing Center at Dana-Farber.
When I realized that there was a team there that truly specialized in my cancer, that’s when the real journey began of getting over to that team. I felt like the more I could work with doctors who truly know this disease inside and out, the better my chances of living a normal lifespan.
Doing Research & Asking Questions
Stephanie: Jason, you mentioned in a previous conversation that you love research. I was a professional journalist and a research geek myself. When I became a patient, I felt very self-conscious about being labeled as a problematic patient, which I defined as asking too many questions. Did you have to get over any hump like that, even though that’s your nature to ask questions, to want to know? Do you have guidance for those who have less of an affinity for asking questions or wanting to take up that space?
Jason: I didn’t have a problem getting over that. My life was on the line. I’m naturally curious anyway and when I get on top of certain topics, I like to take a deep dive and learn as much as I can, but I don’t have a problem asking questions.
That said, I know there are patients for whom that can be challenging. We’ve had to deal with that in our own family where an older relative got a difficult diagnosis. Their generation tends to be a little bit shyer about questioning the doctor, but I think good doctors have no problem with patients asking questions and probably prefer that.
Get your family or friends involved because there’s likely someone who will take the bull by the horns. Let them know the situation because there likely is somebody who will be more familiar with what to do and what questions to ask.
I’m naturally curious anyway and when I get on top of certain topics, I like to take a deep dive and learn as much as I can
Jason Euzukonis
Patient Demographics
Stephanie: Dr. Sarosiek, can you describe how many years you’ve been focused on Waldenström’s and how many patients you see on average?
Dr. Sarosiek: I’ve been focusing on Waldenström’s for about four years now since I came over to Dana-Farber. It varies a little bit, but I see about 30 to 40 patients a week and the vast majority of them have Waldenström. A few of those patients might be patients with a precursor to Waldenström called MGUS (monoclonal gammopathy of undetermined significance) or related disorders.
Navigating Your Way to a Specialist
Stephanie: You’re seeing 30 to 40 patients a week, the majority of them have Waldenström’s, some of them with MGUS. Whereas in the community, hematologist-oncologists are seeing everybody across the board, so they may only see one or two Waldenström’s patients a year.
Similar to Jason’s trajectory, most people are probably going to see a community provider and then end up with someone like yourself. Dr. Sarosiek, what is your guidance to people on how to get to a specialist and the importance of that?
Dr. Sarosiek: Because of what I do, it’s important to get to a specialist in whatever way you can. If you’re able to and have the means to see a specialist, that’s the best because you can have one-on-one dedicated time.
There are other ways of getting a specialist’s opinion. If you’re unable to travel, Dana-Farber offers grand rounds where you can send in your records and physicians can review them.
I give patients as much time as I can to dig deep into their disease knowing that it’s not possible in the community to specialize in Waldenström’s.
Dr. Shayna Sarosiek
Some employers have second opinion programs and it’s a good idea for patients to look into that. The employer provides the ability to give your records and a physician can give a second opinion. Those physicians are typically at large academic centers that specialize in the disease. You can also access some opinions of physicians as well through some support groups. It wouldn’t be exactly for your case, but it might be a way for the patient to inform themselves and learn a little bit.
But if possible, seeing a specialist is a good idea. Having practiced for a few years before I came to Dana-Farber, I saw a handful of Waldenström’s patients a year. I never could have known all the literature that there was to know about Waldenström’s then or any other particular disease. If you’re able to see a specialist, they might be able to better tailor your care around all of the literature on that one disease.
The other part that I try to do with my patients—and hopefully I’m okay at it—is to recognize that when patients come to see me, typically they’re seeing their local doctors who are excellent physicians but don’t know all the details. I give patients as much time as I can to dig deep into their disease knowing that it’s not possible in the community to specialize in Waldenström’s.
Decentralized Care
Stephanie: Many people hear, “Go see a specialist,” but logistically speaking, that might seem daunting for some people, especially if this is something that they’re going to have to be minding for a long while. How does that work? Do they have to travel every single time? Do you have relationships where patients see you as the specialist, but they’re getting their blood draws and some of the routine care closer to home?
Dr. Sarosiek: We have a lot of cases where patients do what works best for them. Patients who live nearby can travel to see us. We have an ongoing relationship with routine care and routine blood work at our center. But a lot of our patients can’t travel, so they have a local oncologist who we’re willing to work closely with and they can have their routine follow-up there.
Patients will see us once a year and then for the rest of the year, we remain available to them for questions or concerns. Sometimes we might do an initial consult and then tell the patient if something comes up in the future, now that we have a little bit of their background, their local oncologist can reach out to us with questions or concerns or they can come back if and when they have to make a big treatment decision. We can tailor it to what works best for the patients in terms of their ability to visit our center.
Stephanie: That’s wonderful. It sounds like you are as flexible as you possibly can to meet the different situations that patients and care partners have.
My gut was telling me that there should be more discussion between the patient and the doctor.
Jason Euzukonis
Your Doctors, Your Decision
Stephanie: Jason, the first place you were at, you were there for a year before you went to Dana-Farber and saw Dr. Sarosiek. Could you describe what the difference was between where you were before and Dr. Sarosiek?
Jason: With the doctor I was seeing before, there wasn’t as much back and forth in terms of decision-making. It was here’s what we’re going to do and that’s that. I felt like I didn’t know if that was the right approach. My gut was telling me that there should be more discussion between the patient and the doctor.
By the time I got to Dana-Farber, which was about a year after my diagnosis, I couldn’t believe the difference. At my first appointment, I worked briefly with another doctor before Dr. Sarosiek and that doctor was phenomenal. I remember him sitting back and saying, “What questions do you have?” He took more time than any other doctor I’d ever met with before and that seems to be the case with the whole team at Dana-Farber.
That’s something important for all patients to remember. If you feel like you’re getting rushed, if you feel like there’s not a good discussion with your doctor, then you might want to see if there are other options. It was just such a big difference not just between Dana-Farber and that one hospital, but also almost with any other doctor I’ve met with before.
How the Right Care Impacts Mental Health
Stephanie: Mental health is a huge part of every diagnosis, but because this is long-term, it’s a huge part of the consideration. Can you describe the daily impact and what shifted for you after you moved to Dana-Farber?
Jason: In that first year after my diagnosis, I had a massive amount of anxiety. I woke up every morning and I could feel it in my chest. I had to spend a good solid half hour in quiet meditation every day. Fortunately, I’m an early riser, so I’m up before the family and I get that moment of quiet.
Meditation was huge for me. Whether people believe that works or not, the point is to find things to help you get through your day. At the end of the day, we have to get used to living a long time with this cancer and at some point, once you start to feel better, you’ve got to get back to your routine in terms of work and, in my case, raising a young family.
A cancer diagnosis can feel very lonely and being around others who are going through something similar is helpful.
Jason Euzukonis
I felt like I lost control of my health, so I was trying to do whatever I could to reclaim that control. I changed the way I eat. I was able to get back to exercise. It doesn’t have to be an intense form of exercise. It’s simply moving, like going for a walk or gardening. It’s helpful that those were the things that I did.
Support groups are a critical component in moving forward with your mental health. There are a lot of people who have been through some difficult journeys in those groups. You can learn a lot. If you’re dealing with something, there’s a good chance that somebody else in that support group has been dealing with the same thing at some point. Another great way to help with your mental health is to talk to others who are on the same journey. A cancer diagnosis can feel very lonely and being around others who are going through something similar is helpful.
Stephanie: Absolutely. I know you lead a couple of support groups for the IWMF, so thank you for highlighting that.
It’s a journey for patients as they get used to living with this disease and restructuring their lives around the disease. I have to change a little bit of who I am for the patients depending on where they are in that journey.
Dr. Shayna Sarosiek
Approaches to Care from a Doctor’s Perspective
Stephanie: Dr. Sarosiek, hearing Jason’s journey to you, how often do you see patients who are in a very similar space where they’ve been told what to do? What are you noticing from the patients you’re seeing and how do you approach them when you first meet them?
Dr. Sarosiek: Patients will see me and say, “What would you do for my treatment? This is what I was told I have to do.” Luckily with Waldenström’s, we often have quite a few options. I lay out the options and some patients don’t know that they have other options and that’s an important part of seeing a specialist.
The longer I’ve been in Waldenström’s, the more I learn that a lot of patients face something similar to Jason. I can’t speak to this personally, but patients come to see me initially around the time of diagnosis and it’s an everyday, day-in, day-out thing where they’re thinking about the disease and worrying about the future.
It’s a journey for patients as they get used to living with this disease and restructuring their lives around the disease. I have to change a little bit of who I am for the patients depending on where they are in that journey. Initially, patients will have a lot of questions and a lot of anxieties. I even tell them that this is a time when you ask questions because relieving your anxiety or getting questions answered is important right now.
At one point, they’re going to learn to live with this and feel more relaxed, and it’s not going to be the only thing on the front of your mind all the time. I try to adjust to patients as they work their way through because it’s life-changing, but it also changes during the time that they’re living with the disease as well.
Approach with Different Kinds of Patients
Stephanie: You see different kinds of people with different personalities and preferences. I know that there’s so much more depth to this, but could you generalize the different kinds of patients and care partners who walk through the door? Jason is very research-oriented and has no problem asking questions. How about the other kinds of people who are not the same? What’s your guidance to them on how to approach a Waldenström’s diagnosis?
Dr. Sarosiek: That’s something that I try to feel out during an appointment. Who am I meeting with and what works best for them? Many of our patients who come to Dana-Farber for a second opinion tend to ask more questions and want more information. But as I talk to the patients in the first few minutes, some patients are overwhelmed by a lot of information, especially in the beginning. I try to tailor what I’m saying or what I’m offering in that first appointment in terms of information.
Then you might have someone who wants to learn more after they get over the initial shock or anxiety about the diagnosis. Sometimes after I give them the options, patients want more guidance from me rather than leaving the decision up to them. There are a lot of different people and a lot of different personalities and I try to feel that out, so hopefully I can best serve the patient in a way that would make them most comfortable with their disease.
Stephanie: Are there top questions you recommend that patients should ask their doctor after a Waldenström’s diagnosis that would be pretty key in helping them understand the disease and how the care is going to follow?
Dr. Sarosiek: A lot of patients want to confirm if they have the right diagnosis. Most of the time, they do but occasionally, that’s not the case. Part of what we do in that initial visit is walking through to confirm that a patient has Waldenström’s. No one wants to hear that they have cancer, but sometimes that helps patients to understand that this is the cancer that they have and they can move forward without having doubts.
It’s important to ask what treatment options are available. They should ask, “Are there other things that I could consider as my options? Are there alternatives?” Most cancers do; not all of them, but most have multiple options for treatment.
Knowing the key markers to watch closely empowers the patient to know what’s going on with their disease.
Dr. Shayna Sarosiek
Patients should ask about the differences in the treatments and that depends on the patient’s goals. What are the differences in side effects? How long am I going to be on treatment? The patient can help tailor their treatment to what their goals are in life.
Another key question is, “What do I need to look at going forward? What are the most important markers?” With Waldenström’s, we watch their IgM level and we watch for anemia. That’s another key thing that often helps patients to feel a sense of control if they know exactly when they should be following up and what they should be looking for. We always check labs and a hundred values will come up on any patient portal for any visit, but knowing the key markers to watch closely empowers the patient to know what’s going on with their disease.
You have a certain amount of time with a doctor and it’s a matter of being more upfront and telling them if you’re not comfortable with where things are at with the relationship.
Jason Euzukonis
Taking Back Control of Your Care
Stephanie: I’ve heard control come up a couple of times and that resonates with me as well, the sense of how to regain control. Like you said Dr. Sarosiek, some people are clearly overwhelmed and you recognize that they may not be able to or want to hear and digest a ton of information, so you tailor the conversation to them. What is your recommendation on anything else that can help them in the beginning? Jason, when you had some problems feeling heard or feeling like an actual participant and partner in the conversation, what is your recommendation?
Jason: In retrospect, with the doctor who I saw before I got to Dana-Farber, I probably should have been more upfront and said, “I’d like you to hear me out a little bit more. Are you okay with me asking more questions?” Because I think a lot of people have a hard time getting past that hurdle. I wish I would’ve been more upfront because for all I know, maybe they were more open to a back-and-forth.
The challenge that the doctor ran into was that particular center was overwhelmed. The healthcare system was very taxed. It was one patient after another and it felt like they didn’t have the time. I don’t think that was the fault of the doctor. But at the end of the day, it’s your life. You have a certain amount of time with a doctor and it’s a matter of being more upfront and telling them if you’re not comfortable with where things are at with the relationship.
Ask your physician, ‘What’s the best way for me to ask questions?’… You need to have a comfortable way to reach out to your provider and be able to ask those questions.
Dr. Shayna Sarosiek
Stephanie: Thank you for pointing that out. It’s true. The systems are quite inundated, unfortunately, and time is the biggest resource that is unavailable. Dr. Sarosiek, do you have anything to add?
Dr. Sarosiek: As a physician, I agree that there are a lot of time constraints in terms of seeing patients and other responsibilities. You could ask your physician, “What’s the best way for me to ask questions?” Maybe there isn’t enough time in that initial appointment or they have a full schedule.
They may say, “You can reach out to me through the patient portal or talk to my nurse who’s an excellent resource.” Some patients email and if they’re comfortable with that, that’s another avenue. You have to see with your physician the best way that they feel comfortable and a way that you feel comfortable communicating. If you can’t get all of that done in a clinic appointment, then is there another way? Because that’s a key part of the relationship.
As a physician, I feel like it’s important to be available if questions come up, particularly in the beginning when there are a lot of anxieties or questions surrounding a diagnosis. Even as time goes on, there can be things that pop up and the patient wants to know if it’s something they should worry about. You need to have a comfortable way to reach out to your provider and be able to ask those questions.
Navigating Conversations Between the Patient and the Physician
Stephanie: Dr. Sarosiek,you see so many Waldenström’s patients, family members, care partners, and caregivers. What’s your message to healthcare providers who don’t see so many Waldenström’s patients and who may not understand how to navigate the conversation? What are your top tips for them on how to navigate these conversations in the beginning?
Dr. Sarosiek: I don’t know exactly the secret to this, but I do think that as a physician, it’s important to know that we don’t know everything. I know a lot about Waldenstrom’s, but still, I don’t know everything and I certainly don’t know a lot about things outside of Waldenstrom’s. It’s important for us all to realize that we have limitations and to be open to hearing from other people.
Physicians who don’t have the expertise shouldn’t hesitate to reach out to specialists at larger academic centers and feel free to ask questions.
Dr. Shayna Sarosiek
We try to be available to other providers who might not have expertise. I usually tell my patients to tell their local doctor that I’m more than happy to answer questions and be available. Physicians who don’t have the expertise shouldn’t hesitate to reach out to specialists at larger academic centers and feel free to ask questions. People email us a lot and even if I don’t know who they are or I haven’t personally interacted with them before, we’re happy to answer questions. The goal for all of us is to provide the best care.
As a physician, it’s important to be open to learning. I do it all the time. I see patients who have other clinical questions or needs that I don’t know about, and I reach out to specialists in different fields to try to answer those questions. We all have to be open to learning and open to asking other people questions when we don’t know the answers.
Understanding Waldenström’s Treatment Options
Stephanie: It’s a rapidly shifting landscape of treatment options in lymphomas, non-Hodgkin lymphoma, including Waldenström’s, and there’s a lot of discussion we’re hoping can happen in the clinic between the physician and the patient. Jason, before you met Dr. Sarosiek, where was your mind in terms of wanting to understand treatment options and what was that first conversation like with the other physician?
Jason: That was a very difficult and very different time. I didn’t know even remotely as much as I know now, so I was still very much in the mindset of doing whatever the doctor said. As I got deeper into the journey, that’s when I realized that there were other options, but I initially pretty much did what the doctor said.
My treatment options are a tad more limited than the average Waldenström’s patient. Chemotherapy wasn’t a great option for me. In retrospect, the good news is that the previous hospital did put me on the right path, so I’m grateful for that. I didn’t know about the other options anyway and I likely would’ve started with the same option. As time went on, I got more informed and realized the right questions to ask, but I didn’t know them back then.
Stephanie: Dr. Sarosiek, how do you define what Waldenström’s is at the first meeting? What is top of mind for you as you try to lay out treatment options?
Dr. Sarosiek: I draw out the bone marrow and how the IgM comes out of the bone marrow. I usually try to explain it and do a little bit of a drawing because some people are more visual while other people like to hear it. I give a little background about Waldenström’s and ask what questions they have and what they want to know.
Usually, at a first appointment, patients have something that’s at the forefront of their mind or they have a list of questions. If I’m spewing out information about other things that they don’t care about before I answer the question that’s most burning, it’s not helpful. I often ask them what questions they have and that guides the conversation.
Ultimately, we often end up covering the same things at every new appointment that I have with a patient with Waldenström’s, but we might get to it in a different order or a different way, depending on what’s most important for them.
Stephanie: It sounds like during the initial meetings, you’re meeting people where they are. At what point do you lay out the treatment options? Whenever that happens, how do you lay out the options in a way that people will understand and the impact on quality of life?
Dr. Sarosiek: There’s a small percentage of patients that need treatment immediately. For those patients, in the first conversation, we go through the diagnosis and then we jump right into treatment options.
Stephanie: What’s that profile? Why do they need treatment? How do you explain to them why they need treatment faster than other patients with Waldenström’s?
Dr. Sarosiek: A lot of our patients present similar to what Jason described. They have pretty significant anemia, their disease was brought to their attention, and they have symptoms that need to be addressed right away. In the case of Waldenström’s, the reason most patients need treatment is because of anemia. They presented to their doctor to work up the symptoms of their anemia.
Another percentage of patients will have hyperviscosity or thickened blood and that’s causing symptoms related to their Waldenström’s. In those cases, patients typically need treatment right away, so we jump into treatment discussions.
Some patients come to us because their disease was incidentally diagnosed. They had a routine blood test for their annual checkup with their primary doctor and they were noted to have high protein or very mild anemia that’s not causing any symptoms. In those cases, we have the opportunity to discuss treatment later on. We often don’t get to treatment discussion on the first visit; that comes up months or even years later.
Stephanie: For the majority of patients, when you do talk about treatment decisions, how do you lay these out for them?
Dr. Sarosiek: I usually walk through the options. Often with Waldenström’s, we’ll have two or three different options. I typically write those out and give the big-picture details. Is this a treatment you stay on for years or is it a limited-time therapy? What are the main side effects that patients can experience? What are the biggest risks that we worry about with each of those treatments?
Next, I try to figure out what might be most important to the patient. Are they someone who doesn’t want to be on a pill every day? Are they someone who would hate to take a pill because they would miss it all the time? That information helps me to guide the patient on which treatment option might be better for them.
Stephanie: Can we go into specifics of the major courses of treatment that you would offer? You mentioned the continuous and time-limited therapies. What patient profile would you consider for one versus the other?
Dr. Sarosiek: For Waldenström’s, one of the main treatments that we talk about is chemoimmunotherapy, which is chemotherapy and immunotherapy together. It’s an IV therapy and it’s time-limited, usually four to six months. Some patients prefer to have a very time-limited therapy. There are risks associated with that, particularly infections. There’s a small risk of damage to the healthy cells in the bone marrow, so that’s an important conversation to bring up with patients
On the other end of the spectrum is another treatment option, which is oral therapy. Patients take pills every day and it’s continuous as long as your disease is responding, which is often for years. It’s a little bit easier because you’re not getting aggressive therapy upfront with all of the treatment at once. It’s low-level therapy all the time. There are risks associated with that as well. For example, a small risk of heart side effects, but in a patient with severe heart disease, I might stray away from using that as a first option.
Then there are some options in between, like targeted therapies that are injections and we use those in a small percentage of people. Luckily, Waldenström’s has a lot of different options.
Stephanie: What are some of the most common questions you get from patients? Are there some that rise to the top when you’re introducing these treatment options?
Dr. Sarosiek: An important question is: how will I be able to live my life during these treatments? Many of our patients are still working, have families to raise, and have other things that are important to them, so they ask, “What will my day-to-day life look like?”
Another important question is, “How will this treatment look to people around me? Will I lose my hair? Will I be constantly sick?” That’s a huge part of how patients can deal with and move forward with their disease. The biggest thing is what their lives will look like on the treatment.
The next important question that patients ask is, “How long is this treatment going to work for? What’s going to happen with my disease if I start this treatment? Am I going to need more treatment again in a year or two?”
They also ask, “What’s the worst thing that could happen to me from this treatment? What are the scariest risks associated with the treatment?”
Dr. Sarosiek and I did have to decide on treatment when I was starting to experience some side effects… That’s when Dr. Sarosiek led into the conversation about shared decision-making.
Jason Euzukonis
Stephanie: Jason, your first line of therapy was a BTK inhibitor. You had some rituximab infusions earlier on, but you were on the daily pill. What was that like for you? What were the considerations for you before you met with the Dana-Farber team?
Jason: At the time I was diagnosed, there weren’t quite as many options as there are now, so I’m a lot more at ease knowing that there are a lot of good options on the table for me when the time comes. I was already responding well to a BTK inhibitor. By the time I got to Dana-Farber, there wasn’t a need to change it, I guess.
Probably the more relevant question from someone in my shoes is: had chemotherapy been an option, which way would you go? That’s a common question with pros and cons, as Dr.Sarosiek mentioned for both approaches. Had both been an option for me, I likely still would’ve chosen the same path of the BTK inhibitor.
As a younger patient, there are some things to think about in terms of the long-term potential side effects of chemotherapy versus targeted therapy. I’m in pretty good health overall, younger, and don’t have heart issues, so I wasn’t all that concerned about any potential side effects surrounding my heart.
Dr. Sarosiek and I did have to decide on treatment when I was starting to experience some side effects; nothing overly threatening but more annoying. I approached her and asked, “What do you think about cutting the dose?” That’s when Dr. Sarosiek led into the conversation about shared decision-making and presented this newer version of the targeted therapy. I guess it’s the best example of the decision-making with Dr. Sarosiek that put me on the right path.
Stephanie: What I appreciate about this is you had clearly done enough research where you even knew to ask about lowering the dosage. What got you to that point? What were your considerations about staying on something that had been working versus shifting completely?
Jason: At the end of the day, part of it is a certain amount of trust in your doctor. I have my feelings on things, but I quite literally would trust Dr. Sarosiek with my life. But at the same time, this is where hopefully people do their homework and read up on what’s latest and greatest.
I had already read up a bit on the newer targeted therapy that Dr. Sarosiek presented and when she mentioned that, I was also fortunate that it had recently been approved. I was already aware of it and knew that the side effect profile was better on it, so I was very comfortable when she brought up moving to that.
Knowing the side effects I was dealing with, there was a good chance a lot of it was related to what I was on. With the newer version of that, based on the data, those side effects were improved. It’s a combination of doing your research, trusting your doctor, and asking them what they think.
Addressing Side Effects
Stephanie: Dr. Sarosiek, how many times are you seeing people who are nervous to even talk about the side effects and how do you address that? We’ve heard from other people who are hesitant to bring up side effects because they’re worried their doctor’s going to take them off of their treatment because they want to preserve as many options as possible.
Dr. Sarosiek: A lot of patients are comfortable discussing their side effects; that’s my experience, at least. They’re comfortable saying what it is that’s going on without having to worry that we’re going to adjust their treatments or change their outcomes because we stopped therapy or changed therapy. I would say most patients are comfortable saying if they have a side effect.
Although maybe I have some patients who are scared to tell me that they have side effects, on the other hand, I do have some patients who don’t want to know about potential side effects from treatment. A lot of patients want to know what they can expect so that if it happens, they’re aware and not worried. But once in a while, I’ll tell a patient this side effect might happen, but they don’t want to know because either they’re then going to worry it’s going to happen or they feel like they might manifest that for themselves if they know about it.
We can still have a conversation about if it’s a side effect they can live with or if we need to change their treatment because of it.
Dr. Shayna Sarosiek
Again, it’s trying to feel out what the patients are comfortable with hearing in terms of side effects. I hope I make patients comfortable to know that they can tell me about their side effects without me immediately making a treatment decision for them based on the reported side effects. We can still have a conversation about if it’s a side effect they can live with or if we need to change their treatment because of it.
Stephanie: Jason, what were the main key side effects that you were experiencing that brought this discussion up for you?
Jason: Mouth sores were probably the biggest one. I had a lot of mouth sores. They were brutal. I was starting to experience some joint pain. Sometimes it’s tricky to determine if I’m experiencing side effects from the treatment or if I’m getting a little older. But I was getting the sense that it was a sudden increase in joint pain.
The blood pressure was a little higher than I would’ve liked. The platelet count wasn’t dangerously low, but it was a little on the low side. From what I had been reading on the newer version, it seemed like a lot of those side effects had been improved, so I was pretty comfortable. I was responding well; it was just annoying side effects.
Stephanie: Dr. Sarosiek, how do you navigate the conversations? People have different preferences and there is that mental hurdle of not wanting to make too much of a deal about side effects.
Dr. Sarosiek: When patients have side effects, then I try to feel out if there is anything that they would like to do about them. If someone has mild, loose stool once every few weeks, they might say, “Oh, forget it. It doesn’t bother me. I’m telling you about it so that you know.”
My next approach is to try to find some supportive care measurement that we might be able to do. I have a lot of patients on the treatments we use for Waldenström’s who have loose stool or diarrhea and typically, adding fiber to their diet, like a fiber supplement once a day, is quite helpful. It treats it and they can continue on the same dose.
For a lot of the side effects, I ask if it bothers them, and if it does, we try some supportive measures. If the supportive measure doesn’t help, then it is a conversation about whether or not we want to decrease or change the dose. In that case, I try to bring up any data that we have in that setting to reassure patients that if we decrease the dose, the patients will still have very good outcomes. Often, we have data to help guide us if we should reduce the dose or not. We think about that, but usually, we try other supportive things first so that we can try to stick to the regimen that’s proven in the literature.
As Dr. Sarosiek knows, I typically will ask, ‘Hey, what are you seeing? What’s the latest and greatest? Any thoughts about the future?’ That’s been my approach.
Jason Euzukonis
Patient-Physician Relationships
Stephanie: This is a long-term relationship that’s happening. What are the other points where major discussion tends to happen? I imagine it’s talking about active surveillance or watch and wait, as well as at any point that treatment may need to come up. Is that the case? How do you both approach this as an ongoing relationship that’s different than other cancers?
I think about it because I get reminded twice a day when I take my pill. I try to stay up to date on what’s latest and greatest. Ultimately, the day will come when Dr. Sarosiek and I will have to figure out what the next best step is. The good news is there are a lot of good options, so that lessens my anxiety knowing that there’ll be a lot of good options on the table for me when the time comes.
Jason: I’m on treatment, but while I could potentially get many more years out of this treatment, the reality is at some point, I’ll start to slowly lose the response. From a mental standpoint, I’m pretty good at being able to compartmentalize. I’m fortunate enough that I can move through my day without it weighing on me.
We meet every three to four months. I’ll go in for blood work, which is helpful for me because we can get a pretty good idea of not just the disease itself but also my overall health to avoid any pitfalls there as well. As Dr. Sarosiek knows, I typically will ask, “Hey, what are you seeing? What’s the latest and greatest? Any thoughts about the future?” That’s been my approach.
If we’ve known them for months or years and they show up one day and seem a little bit different than they have been at every other visit, then something’s off with their disease and we should look into it.
Dr. Shayna Sarosiek
Dr. Sarosiek: From my perspective, part of what drew me to oncology and which I love about Waldenström’s is we have this luxury in most cases to get to know the patients and be able to sit down and talk about them outside of their diagnosis. That’s what I love about what I do. It’s great because I get to know the patients and that’s how I know how they are doing.
If I know a patient is a runner, loves to spend their time golfing, or loves to spend their time with their grandkids, then they come in and say, “I cut back on my running,” or “I’m not hanging out with my grandkids,” I don’t necessarily have to ask, “What are exactly your symptoms?” I know them well enough to realize that if they’re not doing what they love to do or what they’re usually doing, something has changed.
Part of active surveillance, watch and wait, or monitoring someone on treatment is getting to know them and being able to tell if they’re not able to do the same things that they were doing. If we’ve known them for months or years and they show up one day and seem a little bit different than they have been at every other visit, then something’s off with their disease and we should look into it. What I love about oncology and what I do now is getting to spend time with my patients and getting to know who they are.
Dr. Sarosiek wants to learn more about her patients and who they are beyond the diagnosis so that she can treat them as a whole person and not just the disease specifically, allowing her to understand how different options might impact them and their quality of life.
Stephanie Chuang
Jason: I’m confident that there aren’t many doctors in the world who know this disease and the science around this disease as well as Dr. Sarosiek, but she also knows me well and that’s critical in the doctor-patient relationship.
Stephanie: I love that you’re both highlighting that this is a long-term relationship that’s very different than other cancers. We talk a lot about survivorship in other spaces, but this is an ongoing conversation. You know that Dr. Sarosiek knows her stuff and she’s at the top of her game. You talked about the anxiety and mental load that you had to work through daily.
The difference is Dr. Sarosiek wants to learn more about her patients and who they are beyond the diagnosis so that she can treat them as a whole person and not just the disease specifically, allowing her to understand how different options might impact them and their quality of life. That’s such an amazing thing that’s happening and I do hope that patients, care partners, and physicians will take that away.
Is there anything else you want to mention that is important in the context of having patients and physicians be partners? Are there misconceptions? Are there any other things that people are missing that you think would benefit them?
Dr. Sarosiek: It’s important to find a physician who is open to learning and is willing to work with you within your space. We’re all different people, as we all know. We are born into families that have different personalities and we learn to work together. Sometimes, we find friends along the way who are more like family because they’re people you relate to. You want to find a physician like that who can meet you in your space.
Sometimes, you have different personality issues and maybe you want to find a different doctor who can work with you in a way that would make you most comfortable with your disease. It’s worth getting second opinions or meeting other physicians and finding someone that you feel can be your partner through the journey. I know I fail in some ways, but I try my best to be a partner with my patients and hopefully, patients can find someone who can do that with them.
Jason: Take care of your health, both physically and mentally. Join support groups. If you have Waldenstrom’s, go to the IWMF.com. Ask your doctor lots of questions. Don’t be afraid to seek multiple opinions. Find a doctor who you’re comfortable with and who knows this disease inside and out, if possible, or at least ask your doctor to be in touch with the doctor who knows this disease inside and out.
Waldenström’s Clinical Trials
Stephanie: Dr. Sarosiek, do you ever talk about clinical trials with your patients? It’s a huge topic and very important in a space where there’s so much development. What is your mindset in terms of the research? How and when do you bring them up to patients?
Dr. Sarosiek: I’m a huge advocate for clinical trials and in general, especially in academic institutions, we tend to use clinical trials a lot to be able to offer novel therapies to patients. As Jason mentioned, he’ll come in and ask about novel therapies, so often it comes up in conversation with patients when they ask what’s new and we’ll talk about clinical trials.
If there is a trial available that a patient would qualify for, I always bring it up as a potential option. Some patients can’t participate because of logistics and not being close to a center with clinical trials, but I will always bring it up because I think it’s the best way that we can move the field forward. If a patient is eligible for a trial, it will certainly come up in conversation with me.
There are so many options that doctors are trying to figure out the right order of treatments, which one is more effective and safer than the other, and the only way we can get the answers to those questions is by patients taking part in clinical trials.
Jason Euzukonis
Jason: I’m still responding well, so I’m not there yet. But as Dr. Sarosiek mentioned, I do make it known that I’m very much open to a clinical trial if and when the time comes.
The good news is that there are so many new options now and they’re making advances every day. The challenge is there are so many options that doctors are trying to figure out the right order of treatments, which one is more effective and safer than the other, and the only way we can get the answers to those questions is by patients taking part in clinical trials.
A lot of people think that with clinical trials, they’re guinea pigs, but no. There are a lot of great options and the doctors are looking to get answers.
Stephanie: From the patient’s perspective, what would be your major considerations on whether you would want to go on a particular trial?
Jason: I’d be very interested in a clinical trial that combines agents that aren’t chemotherapy and will eventually be able to give me a break from treatment. There’s a lot of progress being made on that front. I know that’s a priority for a lot of the centers and doctors out there.
At the end of the day, it’s a drug… Each one of us is different, so I don’t know how it’s going to impact me long-term
Jason Euzukonis
Stephanie: That makes perfect sense, for sure. But if we could dive in, can you share more about what it is that’s coming up for you? Chemotherapy sounds like it’s the side effects and quality of life. With time off treatment, who doesn’t want a break? Can you describe why that’s so important for you and what’s driven you to that point?
Jason: With the targeted therapy that I’m on now, there doesn’t seem to be a lot of risk long-term, but it’s still relatively new and we don’t know that. I also know that these treatments aren’t cheap and pretty taxing on the healthcare system to remain on these things, so I know that’s a consideration.
At the end of the day, it’s a drug. There are no free rides when it comes to these medicines. Each one of us is different, so I don’t know how it’s going to impact me long-term if I stay on this for 10, 15, or 20 years. I likely won’t be on it for 20 years, don’t get me wrong. But as we say in the Waldenström’s community, if you know one Waldenström’s patient, you know one Waldenström’s patient. That can be applied to a lot of different cancers, but the bottom line is I don’t know the long-term ramifications of continuous therapy, so it would be nice to not be on a drug for a period of time.
Stephanie: Dr. Sarosiek, is there anything else that you think would be helpful for patients to understand both in terms of guidance for them and questions that they can ask that might be helpful?
Dr. Sarosiek: Some concerns that patients bring up when they hear clinical trials include: Are you testing something that you don’t know anything about? Am I going to get a placebo so I won’t be getting any treatment for my cancer? Does this mean that this is the last option for me, that I’m going to be dying with this cancer soon?”
It’s important for patients to know that that’s not the case. Often, we have many trials for patients who have never been treated before and this is going to be their first treatment in decades of life that they’ll live with Waldenström’s. It’s important for patients to know that clinical trials are a way to get novel therapies.
While clinical trials may not be right for everybody, it’s great to have the conversation so people can choose what is right for them.
Stephanie Chuang
Currently, we have a clinical trial that uses two oral therapies that we know independently work very well in Waldenström’s and we use them as the standard of care. But the trial is trying those two together so that you can use them for a limited amount of time and get a better response. It’s a way to get novel therapies or advanced therapies that otherwise wouldn’t be available as a standard of care.
Stephanie: Sometimes you hear people say, “Tomorrow’s treatment today.” While clinical trials may not be right for everybody, it’s great to have the conversation so people can choose what is right for them.
Conclusion
Stephanie: Thank you, Dr. Sarosiek and Jason, for joining this conversation. You highlighted a lot of the nuances that come up in the conversations between the physicians and the patients. You’re a great example of how partnership can work well here, so thank you both so much.
Tiffany: Thank you, Jason, Dr. Sarosiek, and Stephanie for such a great discussion. It’s so important to be empowered and to lean into communication so that you and your caregivers can make informed decisions about your care.
Thank you to Pharmacyclics, an AbbVie company, for its support of our patient education program. The Patient Story retains full editorial control over all content
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Caitlyn was diagnosed with stage 4 melanoma at 25 weeks pregnant. Her symptoms began with severe side pain, which was initially misdiagnosed as muscle spasms. After the pain escalated to pelvic pain, she was eventually airlifted to UCSF, where doctors discovered she had been bleeding internally. Further tests revealed tumors in her breast, up and down her spine, and brain, marking an aggressive spread of melanoma.
At 25 weeks pregnant, Caitlyn underwent emergency surgery to stop the internal bleeding, with her daughter closely monitored throughout. Lydia was born prematurely at 26 weeks, weighing just 2 lbs 4 oz. Five days later, Caitlyn began her cancer treatment.
The tumors responded so rapidly to the treatment that Caitlyn’s kidneys couldn’t keep up, leading to dialysis. Her health challenges continued as she suffered from multiple fractures in her spine, seizures, and brain tumors, and had to relearn how to walk. Despite these overwhelming difficulties, Caitlyn remains focused on being a mother to Lydia and fighting for her future.
Caitlyn’s treatment plan includes monthly visits to UCSF, where she receives Opdualag, despite being allergic to it. The treatment process is arduous, involving multiple blood draws, difficulty finding veins for infusions, and prolonged treatments due to her allergies. Caitlyn experiences severe side effects, including extreme fatigue, migraines, nausea, and stretch marks from swelling, which have left her with fragile skin prone to blood blisters.
Throughout her ordeal, Caitlyn emphasizes the importance of maintaining a positive mindset and being your own advocate. She recounts how her initial concerns about a mole were dismissed by doctors, which later proved to be skin cancer. Now, she is passionate about educating others on the importance of self-checks, sun safety, and second opinions. Caitlyn also shares her efforts to support melanoma research by starting a small business, with part of the proceeds going towards the cause.
Caitlyn’s main motivation is her daughter, Lydia, and she is determined to be there for her milestones. She draws strength from her late godmother, who remained positive despite her cancer. Caitlyn advocates for living each day to the fullest, ensuring that her legacy is one of positivity and resilience. Her message to others is to cherish each day and never hesitate to seek the care and support needed, even in the face of daunting challenges like a stage 4 cancer diagnosis.
Name: Caitlyn M.
Age at Diagnosis:
27
Diagnosis:
Melanoma
Staging:
Stage 4
Symptoms:
Severe pain on the side pain that worsened over time
Pelvic pain and a feeling of pressure resembling labor
Swollen lymph node on the cheek
Treatments:
Emergency surgery at 25 weeks pregnant to stop internal bleeding
Multiple surgeries to remove tumors
Targeted therapy: Opdualag (nivolumab and relatlimab-rmbw)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Melinda was diagnosed with stage 4 adrenal cancer in November 2021. Her story began with a confusing array of symptoms that baffled doctors for months before her cancer diagnosis.
In July 2021, Melinda experienced swelling in her face, stomach, hands, and feet, which she initially attributed to allergies. She developed unexplained high blood pressure and also noticed unusual symptoms like acne on her back and chest, an itchy and tingling tongue, burning and discharging eyes, hair loss on her head, and hair growth on her upper lip and chin. Additionally, she suffered from bloating, stomach pain, food aversions, easy bruising, slow healing, and eventually missed her periods. Despite these alarming symptoms, her doctors in various specialties struggled to pinpoint the cause.
In October 2021, after months of frustration, Melinda saw an allergist who, unlike others, took the time to review her medical history and symptoms thoroughly. Concerned about the swelling in her stomach, the allergist ordered a scan, which revealed a large tumor on her right adrenal gland. Initially thought to be a non-malignant pheochromocytoma, further tests at the Mayo Clinic revealed it was adrenocortical carcinoma, a rare and aggressive form of cancer affecting just one in a million people annually in the U.S.
This diagnosis brought Melinda a mix of emotions. The confirmation of cancer was terrifying, but she felt relieved to finally have an explanation for her symptoms. She quickly flew to the Mayo Clinic, where a team of seven surgeons successfully removed a 24 cm tumor that weighed 3.2 pounds and had wrapped around her vena cava.
After surgery, Melinda was prescribed EDP-M (etoposide, cisplatin, doxorubicin, and mitotane) and later underwent stereotactic body radiation therapy (SBRT). Despite initial treatments, her cancer metastasized to her liver, lungs, spine, and hips. Melinda describes the difficult side effects of treatments and also faced complications that required additional medical interventions.
After finding that EDP-M was ineffective, Melinda’s oncologist switched her to a combination of Keytruda (pembrolizumab) and Lenvima (lenvatinib), which started showing positive results in reducing her tumors. She highlights the importance of consulting with specialists and having a collaborative medical team, which she believes has been crucial to her progress.
Melinda reflects on the importance of self-advocacy in her health journey. Despite moments of self-doubt, she was persistent in seeking answers. She emphasizes the value of being thorough, organized, and proactive in medical situations. Melinda’s experience also highlights the role of complementary therapies and the need for better access for those with chronic illnesses.
Melinda’s journey highlights the importance of self-advocacy, mental health, and the support system during cancer treatment. Her experience as an LGBTQ+ patient underscores the need for more inclusive and understanding healthcare practices. Despite the challenges, she chose not to focus on prognosis. Instead, she focused on maintaining a positive mindset and living her best life.
Name: Melinda N.
Age at Diagnosis:
32
Diagnosis:
Adrenocortical carcinoma (adrenal cancer)
Staging:
Stage 4
Symptoms:
Swelling in the face, stomach, hands, and feet
High blood pressure
Acne on back and chest
Itchy and tingling tongue
Burning in the eyes with discharge
Hair loss on the head
Hair growth on upper lip and chin
Bloating and stomach pain
Food aversions
Easy bruising
Slow healing
Missed periods
Treatment:
Surgery to remove the tumor
Chemotherapy: Lysodren (mitotane), EDP (etoposide, doxorubicin, and cisplatin)
Radiation: Stereotactic body radiotherapy (SBRT)
Immunotherapy: Keytruda (pembrolizumab)
Targeted therapy: Lenvima (lenvatinib)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods
Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib) ...
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Tina, a patient advocate and founder of Own Your Crohn’s and co-founder of the South Asian IBD Alliance (SAIA), shares her experience with Crohn’s disease. Diagnosed over 18 years ago, Tina initially showed symptoms of irritable bowel syndrome (IBS) and gastroesophageal reflux disease (GERD), as well as red eyes and joint pain in childhood. Although these signs pointed to inflammatory bowel disease (IBD), it wasn’t until she was 21, after pushing for a colonoscopy, that she received her first diagnosis: ulcerative colitis. Due to family history—her father passed away from colorectal cancer, which crohn’s disease can increase the risk of getting—she knew the seriousness of her condition, yet struggled to receive proper care. It took several doctors, misdiagnoses, and months of debilitating symptoms before a gastroenterologist accurately diagnosed her with Crohn’s disease.
Her early experience was fraught with complications, including periods of remission followed by flare-ups. A trip to Mexico worsened her condition, leading to a severe C. difficile infection. Despite her family’s fears of Western medicine based on cultural mistrust and her father’s negative experience with steroids, Tina ultimately needed biologic medications and surgery. The conflict between her medical needs and her family’s cultural beliefs complicated her decision-making process. She underwent an emergency total proctocolectomy in 2008, which saved her life but resulted in her living with an ostomy bag. Her family was initially resistant, fearing that cultural stigma around ostomies would affect her ability to marry or participate in religious rituals.
Despite the cultural and personal challenges, Tina credits the ostomy with giving her a renewed quality of life. She later attempted a J-pouch surgery, but it failed, leading to six years of complications and additional surgeries. Eventually, she had the J-pouch removed and came to terms with her ostomy. This experience fueled her advocacy work, which focuses on educating others about IBD, the cultural stigma surrounding ostomies, and the importance of making informed treatment decisions.
Tina also emphasized the need for cultural competence in healthcare. She noted that patients from the South Asian community, in particular, face significant barriers due to cultural stigmas, which often delay treatment and cause emotional distress. This inspired her to raise awareness, destigmatize IBD, and ensure that both patients and physicians are better informed about these conditions. Through her advocacy, Tina aims to empower patients and encourage culturally sensitive care within the medical community.
Name: Tina A.
Diagnosis:
Crohn’s Disease
Symptoms:
Irritable bowel syndrome (IBS)
Gastroesophageal reflux disease (GERD)
Constipation
Red eyes (allergic conjunctivitis)
Joint pain
Weight loss
Frequent bowel movements with bleeding
Treatments:
Surgeries: Total proctocolectomy, permanent ileostomy, J-pouch surgery (later reversed due to complications), nearly two dozen additional surgeries related to Crohn’s complications
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: Irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), constipation, red eyes (allergic conjunctivitis), joint pain, weight loss, frequent bowel movements with bleeding Treatments: Surgeries (total proctocolectomy, permanent ileostomy, J-pouch which was later reversed due to complications, nearly two dozen additional surgeries related to Crohn’s complications)
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Maddee was diagnosed with stage 2 colon cancer in February 2023, following months of unusual symptoms that she initially attributed to other causes. She began experiencing significant fatigue and intermittent abdominal pain in December 2022, which she dismissed due to her active lifestyle. The symptoms escalated, including a burning sensation in her stomach, dizziness, and shortness of breath. Despite seeking medical advice, her condition was not immediately diagnosed, as initial assessments from urgent care and her gynecologist did not reveal the underlying issue.
The turning point came when a naturopath, who was evaluating her hormone levels, discovered she was severely anemic and suspected a slow internal bleed. This led to an expedited colonoscopy in February 2023, where a large tumor was discovered, too big for the scope to navigate. The doctor suspected Lynch syndrome, a genetic condition associated with a higher risk of colon cancer, especially given Madeline’s family history—her father had passed away from pancreatic cancer at the age of 47. Subsequent tests confirmed the presence of the tumor but fortunately showed that the cancer had not spread beyond the colon.
Surgery was scheduled quickly, during which about a foot of Maddee’s colon and 40 lymph nodes were removed. The procedure, though more invasive than initially expected due to the tumor’s size, was successful. Post-surgery, Maddee’s recovery was challenging, involving significant pain and the need for a blood transfusion. Despite some setbacks, including a slow return to physical activity, her resilience and proactive attitude helped her navigate these difficulties.
Maddee chose not to undergo chemotherapy, a decision influenced by her desire to avoid the side effects and protect her reproductive health. Her oncologist supported her choice, given that the cancer had not spread to her lymph nodes. She remains vigilant, undergoing regular blood tests and scans to monitor her health, and is aware of the potential for cancer recurrence due to her Lynch syndrome diagnosis.
Mentally, the experience has been taxing, and Maddee has relied on therapy to help manage the stress and anxiety associated with her diagnosis and recovery. She emphasizes the importance of self-advocacy, listening to one’s body, and enjoying life despite the uncertainties that come with a cancer diagnosis. Participating in clinical trials, Madeline hopes her experience will contribute to better understanding and treatments for younger colon cancer patients.
Name: Maddee M.
Age at Diagnosis:
35
Diagnosis:
Colon Cancer
Staging:
Stage 2 (borderline stage 3)
Symptoms:
Severe fatigue
Burning sensation in the stomach
Intermittent lower right abdominal pain
Dizziness
Shortness of breath
Difficulty walking up inclines
Anemia
Treatment:
Surgery: hemicolectomy & lymphadenectomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
CLL 360°: It’s Time for Treatment – Making the Right Decision for Me
Edited by: Katrina Villareal
The Patient Story Webinar – CLL 360°: It’s Time for Treatment – Making the Right Decision for Me
Hosted by The Patient Story
Learn how shared decision-making—a collaborative process where patients and doctors work together to make healthcare decisions—can help you navigate the rapidly evolving landscape of CLL treatment options and make informed decisions about your care.
Learn how shared treatment decision-making—a collaborative process where patients and doctors work together to make healthcare decisions—can help you navigate the rapidly evolving landscape of CLL treatment options.
Discover what shared decision-making means and how it can empower you in your treatment journey. Get insights into the latest advancements in CLL therapy and how to choose the best treatment plan for you. Learn how to weigh the potential benefits of treatment against its impact on your daily life. Gain strategies for discussing your preferences and concerns with your healthcare team.
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 patient education program. The Patient Story retains full editorial control over all content
Stephanie Chuang: The goal of our program is for patients and care partners to walk away with a better understanding of how to approach decision-making with their medical team with all these options. There’s so much rapid change happening with continuous therapy and time-limited treatment. The ultimate question is: what is the best for you and or your loved one?
My name is Stephanie Chuang. I’m also a blood cancer patient advocate. I was diagnosed with non-Hodgkin lymphoma and that experience is how I decided to start The Patient Story, a platform that aims to help people navigate life before and after diagnosis in human terms. We do this through in-depth patient stories as well as educational discussions, which we know is especially important for those who are dealing with CLL and SLL wanting to empower themselves continuously throughout treatment.
We also want to give a shout-out to our friends over at The CLL Support Group on Facebook led by our friends, including our moderator Michele Nadeem-Baker. They offer ongoing virtual support for folks dealing with a CLL diagnosis.
Michele Nadeem-Baker, Patient Advocate
Michele Nadeem-Baker: I was diagnosed in 2012 and by the time I needed treatment, it was the end of 2015. I had a simple choice: standard of care or go on a clinical trial. I chose to join a clinical trial and luckily, it gave me part of the standard of care in combination with the future of treatment. I discussed all of this with my CLL specialist and we came to a shared decision for my treatment.
When I relapsed a few years ago, I had to make a decision once again. There were so many choices at that point, which was fantastic for patients but made it a little more difficult to make the decision.
Dr. Nicole Lamanna, Hematologist-Oncologist
Michele: Dr. Nicole Lamanna is the director of chronic lymphocytic leukemia and professor of medicine at Columbia University Medical Center. Dr. Lamanna, what drew you to specializing in CLL?
Dr. Nicole Lamanna: When I was a resident at NYU at Bellevue, we used to rotate at Memorial Sloan Kettering for our oncology experience. As an intern and then as a resident, they put me on the leukemia service every year.
When I became a third year, one of the leukemia docs kept in touch with me and said, “Nicole, what are you thinking about doing?” I was into taking care of the whole patient, so I said, “I’m going to be an internist or a primary care physician. I love taking care of every part of the patient.” He said, “Didn’t we do that on leukemia when you were in the inpatient unit? Don’t you remember we took care of infection, kidney failure, and heart attacks?”
The more I thought about it, the more I thought about applying to an oncology fellowship. Sure enough, that little push and having good mentors did that for me. I decided to apply for a fellowship and went to Sloan Kettering. While I did my fellowship, I did my research with one of the leukemia guys, was taken under their wing, and started working with a CLL mentor. I wouldn’t be doing this if it wasn’t for them. I give them lots of credit.
Dr. Charles Farber, Hematologist-Oncologist
Michele: Dr. Charles Farber is a board-certified oncologist and medical director of oncology research network development for Atlantic Health System. He also serves as a clinical assistant professor at Rutgers Cancer Institute of New Jersey. Dr. Farber, what drew you to specializing in CLL?
Dr. Charles Farber: When I was a college student, I was working in a laboratory and doing structural activity relationships. I got into an MD/PhD program at NYU and was slated to go there and start research with Eric Simon who coined the term endorphin.
Right before I got there, he moved to Columbia, so I had to find someone with a research interest that would overlap with mine. I looked at the faculty at NYU and Robert Silber was doing cutting-edge work in CLL. I ended up joining his laboratory and I’ve kept up my interest in CLL throughout my career.
Treatment Advances in CLL
Michele: Doctors, the world of CLL has changed tremendously with so many more treatment options. Dr. Lamanna, can you give us a summarized update on the current CLL treatment landscape and how it’s changed, especially in the last couple of years?
Dr. Lamanna: To allude to what Michele was saying, back in the day, we had chemoimmunotherapy regimens like fludarabine, cyclophosphamide, and rituximab or FCR, or bendamustine-rituximab intravenous therapies. These were standard of care. We didn’t have as many choices.
Now we have more of these targeted small molecule inhibitors. The two big classes we have are BTK or Bruton tyrosine kinase inhibitors and BCL2 inhibitors. These oral therapies have become the standard of care. Patients can either take a chronic therapy with one of these oral BTK inhibitors or you can get a time-limited approach with a BCL2 inhibitor.
The only one we have currently approved is venetoclax in combination with a CD20 monoclonal antibody, which is rituximab or obinutuzumab. We’ve moved away from chemotherapy and now people are on either BTK inhibitors or some sort of venetoclax-based therapy.
Shared decision-making is a collaborative process where patients—often with their family members—and their doctors sit down, communicate, and come up with a plan.
Dr. Charles Farber
What is Shared Treatment Decision-Making?
Michele: I’m extremely thankful for all of these new treatments, but this means choices, and choices mean decisions need to be made. Many patients are hearing the term shared decision-making. What does that mean?
It’s understood that doctors are the experts from a medical and clinical standpoint, and patients are the experts on themselves and what matters most. Dr. Farber, please explain in simple terms what shared decision-making means when it comes to treatment and what the process typically involves.
Dr. Farber: Shared decision-making is a collaborative process where patients—often with their family members—and their doctors sit down, communicate, and come up with a plan. It’s not limited to a choice of treatment or duration of treatment. With CLL in particular, most patients don’t need treatment, so we observe them. We do watchful waiting or as my patients refer to it, watchful worrying.
The first decision is what criteria need to be met before a treatment is offered. Then we discuss what treatment options are available, what are they, and what’s best for the particular patient. It’s individualized, so it relies on two-way communication where the doctor may have in mind what’s best for the patient, but the doctor doesn’t make the decisions for you.
We do share in the decision-making where it’s appropriate. It boils down to trying to communicate and impart important information to our patients and their loved ones to determine what’s best. It’s interactive. It’s a dialogue. The doctor with their experience and knowledge has to work with the patient with what they desire.
What Factors Guide Shared Decision-Making?
Michele: Dr. Lamanna, what factors guide you in making treatment decisions?
Dr. Lamanna: This has become more complicated and part of it is because shared decision-making has become more present because we have more options. When there was only one option, the choices were whether the patient was going to do treatment or not. With all these options, it becomes a conversation.
We do shared decision-making because these treatment options are slightly different… what may be relevant for them at this particular moment in their life may be different later on down the road.
Dr. Nicole Lamanna
We think about the genetics and the disease itself. What is going on with the patient? What are the features of their disease? Are their blood counts bad? Do they have big bulky lymph nodes? Do they have genetic features? Do they have chromosomal abnormalities? Do they have high-risk disease? You might hear about 17p deletion, TP53 mutation, or even multiple chromosomal abnormalities.
What other medical problems does the patient have? What other comorbidities do they have? How is their kidney function? What are their social circumstances? Can they get back and forth to the clinic or the hospital frequently or not? Do they need extra support? Are we looking at therapies that might be easier for that patient?
We take all of those into consideration and that’s where shared decision-making comes into play when we talk about either BTK inhibitors or venetoclax-based therapy. What are the choices in that person’s life at that particular time? Some people might have little kids and are busy and active, so they need something simple and not going to be too labor intensive. Other people may choose something different and go for more intensive therapy because they can put in the time.
We do shared decision-making because these treatment options are slightly different. They’re both great treatment options. Even though many people will wind up potentially using both of these options during their lifetime, what may be relevant for them at this particular moment in their life may be different later on down the road. That’ll come up again when you talk about relapse or needing more therapy.
Balancing Treatment and Quality of Life
Michele: Dr. Farber, quality of life is an important factor for all patients when considering treatment options. How do you balance the potential benefits of treatment with the impact on a patient’s daily life?
Dr. Farber: It’s a very complex equation. I saw a physician newly diagnosed with a low-grade lymphoma. I asked him if he was retired, about his personal life, and what he enjoys doing. He was with his wife and family. The wife interrupted and asked, “Why are you asking these questions?”
I told her it’s very relevant in terms of the big picture. What are the goals of treatment? What’s the lifestyle of the patient? What are they willing to tolerate? How temporary is the initial treatment? Is it a phase? Some of the medicines require more intensive monitoring before things get better, so the questions are very important.
Quality of life is a very important issue and one of the more important variables in the treatment equation.
Dr. Charles Farber
Quality of life is life. Whether someone is willing to sacrifice, people want to live longer and better, and what they’re willing and able to tolerate and for how long has to be assessed. It’s a very complex equation and with these many variables, it needs to be explored.
What are the goals of therapy? Is it to make you live longer? Is it to make you live better? What are we trying to achieve? What are the treatment options? What are the side effects? Quality of life is a very important issue and one of the more important variables in the treatment equation. Shared decision-making is critical where you can’t do for the patient what you think is important. It has to be a dialogue.
Michele: All this is music to my ears because when I was on frontline treatment, my quality of life wasn’t so great, but at that point, there were no choices. We are so fortunate to have these choices now and that we can have a better quality of life as CLL patients.
Approaches to Treatment
Michele: Dr. Lamanna, what are the potential advantages and disadvantages of a fixed-duration treatment versus a continuous treatment?
Dr. Lamanna: Both treatment options are great and because we have these excellent options, we talk about the logistics, the advantages and disadvantages of going for either approach, and then we align that with what’s going on with the patient at the time in their life.
Unless there’s something glaring, like a comorbidity or medical problem where I think one drug might be better than another, then I’ll still discuss both agents, but I’ll bring up my concerns and what I think they should do. You have these discussions and factor in what their wishes are.
We teach everybody that if you’re taking BTK inhibitors continuously, some of these nagging side effects can occur later because you’re taking this indefinitely unless you have a side effect or your disease progresses. The downside is you could have some uncomfortable side effects, like diarrhea, GI issues, cardiac issues, bleeding, and bruising.
The benefit of venetoclax-based combinations is that it’s time-limited. It’s very similar to what we used to do with chemoimmunotherapy where you’re getting a short duration of therapy and hopefully won’t need to be on treatment until many years down the road.
The downside is that it’s more labor-intensive in the beginning. There’s a lot of monitoring because your blood counts can fluctuate a little bit more commonly with the combination. Sometimes you need extra help.They might have dose modifications. There are different logistics with a time-limited approach that people have to be willing to commit to, but the advantage is you get a break from therapy.
I have both of these conversations with patients because it is rare to say that somebody is precluded from one regimen versus another and that’s why most patients have an option. There might be some circumstances based on comorbidity, cytogenetics, or other issues that I’m concerned about with where I might recommend one approach versus another, but we have that dialogue.
Michele Baker: Dr. Farber, is your approach different and if so, how?
Dr. Farber: No, it’s very much in line with Dr. Lamanna’s. I would echo what she said that BTK inhibitors are very easy to start and hard to continue whereas the BCL2 inhibitor venetoclax is very cumbersome to start and requires a lot of initial monitoring. The patient has to come in very frequently for lab work and hydration as we’re ramping up, but it’s easy to continue.
Treatment has to be individualized. There may not be a perfect treatment, but one clearly may be better than another.
Dr. Charles Farber
With ongoing treatment versus finite treatment, the majority of people would like to be treated with finite therapy for one or two years, but that’s not for everyone. It’s a little counterintuitive, but some people feel very comfortable being treated with ongoing therapy because they feel like they’re proactively being monitored and treated.
A lot of people panic when it comes to the end of the year or two years on venetoclax and they become concerned about what we’re going to do next. It’s not broken. Why do we want to fix this? What’s wrong with continuing with venetoclax?
Shared treatment decision-making is individualized. Comorbidities, age, and ability to come in frequently in those first few weeks may dampen my enthusiasm for venetoclax in certain individuals. If they’re on an anticoagulant or blood thinner, I worry about that with BTK inhibitors.
It’s truly a situation where the treatment has to be individualized. There may not be a perfect treatment, but one clearly may be better than another. There’s a lot of information. CLL patients tend to be older and have comorbidities, so Michele, you are quite the exception. But you do the best you can. It requires a lot of patience, but it’s very gratifying.
We’ve had amazing treatments historically. If you look back 10 or 15 years ago, it was prehistoric, particularly for patients at higher risk with unmutated, immunoglobulin-heavy chains or TP53. We had no treatment until the advent of ibrutinib. It’s a very gratifying time to be in practice where we have options and we can talk to patients about what may be better for them.
Bridging the Gap: When Patients and Doctors Disagree on Treatment
Michele: What happens when a patient and their doctor have differing views on a treatment plan’s next steps? What do you do?
Dr. Farber: To some degree, the patient’s always right. If you feel they’re taking a misstep and if it’s not a horrible misstep, you voice your concern. If it’s something terrible to you, tell them you’re not willing to do it or perhaps they should seek an additional opinion. You try to resolve it.
The C in CLL is chronic. If they want to take ivermectin or something unproven, you try to educate them. You try to intellectualize. But it could be difficult because some patients get an idea and it may not be a good idea, but they feel very strongly about it.
If it’s something you’re uncomfortable doing, you can try to excuse yourself and offer a second opinion. It could be challenging and some patients get offended when you don’t do exactly what they’d like you to do. They could come at you with something from Dr. Google that isn’t necessarily appropriate. You have to be calm and try to explain the rationale for why you think it may not be a great idea.
Michele: What you would say to someone exactly if they brought up ivermectin?
Dr. Farber: I tell them that there have been anecdotal reports of patients doing well with various diseases, but that’s not scientific and doesn’t prove that ivermectin is effective in a given setting. I explain about randomized prospective trials. The best way that this is done scientifically is to take a group of patients and divide them into two or more groups. One group is treated with the test agent and the other is treated with standard therapy, placebo, or under observation. The true scientific way is if the group that gets ivermectin does better, lives longer, has a better quality of life, and has objective improvements in their labs or radiographs, that is scientific.
Sometimes in CLL and other diseases, there are spontaneous remission improvements. Single cases of patients getting better is akin to snake oil where someone comes up and endorses a treatment. That’s what I would I would try to explain. I try to explain that individuals getting better on ivermectin is not akin to a randomized prospective trial showing clinical benefit.
Michele: You’re very polite with your explanation and what you would say to someone about ivermectin. I appreciate that. Dr. Lamanna, what would you do if you and a patient disagree about what their treatment plan will be and their next steps?
Dr. Lamanna: To be fair, it is a dialogue. I’ve been fortunate that there aren’t many patients who I’ve had real troubles with. Thankfully, many patients either want to hear the whole discussion or read and bring up their questions with me and that helps the dialogue because you hear where they’re coming from.
If people bring up things that are completely not standard of care, then I have a discussion with them on the standard of care and about supplements or alternative medicines and how to integrate those into current practices or therapies that might be needed for their leukemia.
If somebody doesn’t want to take any standard of care treatment, then I’m probably the wrong person for them. It’s not difficult to have that conversation because either the patient is a right fit and doesn’t want to have anything, is afraid to take any kind of standard of care therapy for CLL, and that’s very easy to have the discussion and see where they want to take that.
Another conversation is when people get multiple opinions from different doctors. We see patients who talk about different therapies and they’re usually talking about all the standard of care therapies. The discussion now shifts to treatment sequencing. Should they do this one first or that one first?
Another discussion is talking about the different clinical trials and that’s great because that’s an open dialogue and right up my alley. I’m happy to talk about any of that, share my knowledge and expertise, and come to a mutual agreement if they want to do one or another, whether with me or someone else. I’ve never had too many difficulties where we’ve disagreed or where it’s been not approachable. It’s something that we have a conversation about.
You want to partner with a doctor and a team that fits you. I may not be the right person for that person all the time and that’s okay. I respect that.
Dr. Nicole Lamanna
I always say to patients that because CLL is a journey, you need to find somebody that you feel comfortable partnering with. That may not be me and that’s okay. It’s a long journey and they’re with you for a lifetime. You hope that they’re with you for 20-plus years or more. Hopefully, they will have a normal lifespan. That’s what we’re shooting for with all our research. You want to partner with a doctor and a team that fits you. I may not be the right person for that person all the time and that’s okay. I respect that.
Michele: It’s a long-term relationship and it’s important that you and your doctor gel. I always say it’s almost like dating, trying to figure out who’s right. My relationship with my CLL specialist is probably one of the longest I’ve had; not quite as long as with my husband but almost.
Beyond Initial (Frontline) Treatment
Michele: Let’s move forward to second-line and third-line therapy. Dr. Lamanna, what factors do you consider? Are they different when selecting a second-line therapy and planning for future treatment options?
Dr. Lamanna: This is a journey. Although most patients are focused on their first treatment and what they’re getting at that moment, I’m always thinking about their next lines. The goal is to try to think ahead.
What they got in the frontline and what their response duration was to that therapy will play a role in what they’re going to be recommended in the second or third line.
Dr. Nicole Lamanna
In the second or third line, you consider several factors. What did they get in the frontline? Have the genetics of their disease changed? Were they once a favorable risk and now changed to 17p deletion or TP53 mutation? How did they tolerate their first regimen? Do they have new comorbidities or new medications that we have to be concerned about? What they got in the frontline and what their response duration was to that therapy will play a role in what they’re going to be recommended in the second or third line.
If they got a time-limited approach with a venetoclax-based regimen, like venetoclax-obinutuzumab, how long did that last? Was it short? Was it long? Did they tolerate the regimen? Is that something we can reconsider? If they were on a BTK inhibitor for their frontline treatment, then we’re not going to offer them another covalent because most people at this point have gotten covalent BTK inhibitors in the frontline.
How to sequence these drugs is still being evaluated. The point is it’s important to know what they had for frontline therapy.
Dr. Nicole Lamanna
If they’re continuously taking a medicine, you’re not going to switch them to the same class of covalent BTK inhibitor. You’ll likely go to a venetoclax-based regimen. We have a non-covalent BTK inhibitor, pirtobrutinib, which recently got approved. How to sequence these drugs is still being evaluated.
The point is it’s important to know what had for frontline therapy, whether their genetics changed, if they have any new comorbidity, what their response was, and if they had any major side effects. All of those play a role in determining second and third-line therapy.
The Role of Genetics in CLL
Michele: Dr. Farber, this is something that CLL patients are always asking. I had my test when I was first diagnosed and this is what it showed, but now they’re showing something else. What happens to our genetics? Is it from treatment?
Dr. Farber: Yes, genetics can change. If you look at newly diagnosed patients who’ve never been treated, perhaps 5% or 7% will have a TP53 mutation or 17p deletion whereas if you look at populations of patients who were very heavily treated, particularly with chemotherapy drugs, up to 50% of those patients will have the dreaded TP53 mutation or 17p deletion.
If a patient needs a new line of treatment or is having progressive disease, if they haven’t had genetic testing, they should be checked
Dr. Charles Farber
By treating, you do one of several things. You can introduce new mutations or at least select a population of cells that have that mutation. What’s very important is if a patient needs a new line of treatment or is having progressive disease, if they haven’t had genetic testing, they should be checked again because there may be something emerging that was not there or not recognized earlier. There are a variety of different assays used, like FISH and next-generation sequencing.
It’s not the same biology through the course of the disease in a given patient. It can sincerely change in part through treatment and that’s one of the reasons in general that we tend to try not to treat patients until they need treatment. The International Workshop on Chronic Lymphocytic Leukemia (iwCLL) has criteria for who needs treatment and not everyone needs treatment.
They say there’s no benefit to treating early. I would take it a step further. There may be a detriment to treating a patient before they need treatment. It’s like shooting off your ammunition before the war begins. Some are seldom accused of starting treatment before an individual needs treatment. If a patient hasn’t had a genetic profile of their disease done in recent times and they progress, they should be checked out again.
Key Takeaways
Michele: What is your advice to patients? How can they most effectively advocate for themselves and have shared treatment decision-making conversations with their doctors, especially when they’re so overwhelmed with the amount of information they’re getting? How can they advocate for themselves when their doctor is not looking at newer therapies, like if they’re in a rural community and don’t have that advantage?
Dr. Farber: The patient needs to bring their spouse, a relative, or a loved one to review what the doctor’s saying at one of these critical junctures. It’s important to write things down.
When all is said and done, the patient can come up with a little chart where they can see the pros and cons of a treatment. You might have one for each different treatment being offered to you. Listen carefully to the doctor.
Come up with very focused questions. Write things down before you go in rather than having a free-for-all discussion.
Dr. Charles Farber
Ask their opinion. What do you think? Do you think one is better than the other? Do you think they’re equivalent? What aspects of one treatment would be better than another treatment? What aspects would be inferior? Are there any nuances to my current medical state that might make one treatment better than another? Come up with very focused questions.
Write things down before you go in rather than having a free-for-all discussion. Back in the day, we didn’t have options. There was one best treatment and we could change the dosing and the schedule to try and finesse it, but now we have different options. We have different agents within a given class. The doctor and the patient must come up with a good plan for the individual.
Dr. Lamanna: It’s often good for patients to bring somebody to their appointments because it’s hard to hear everything with one set of ears. Sometimes what the patient might be focusing on is different from what their loved one or friend might be. They may hear other aspects of the conversation.
The beauty of CLL compared to other cancers is we can have multiple conversations when we’re gearing somebody up for treatment. I often encourage them to write down questions and bring them to their next visit or message us. Thankfully, we have the leeway and flexibility of doing this at multiple sessions to try to answer their questions more thoroughly. That’s very rare. That’s not to say it never happens in CLL because sometimes it happens, but often, you have that luxury of time.
Thankfully, we have the leeway and flexibility of doing this at multiple sessions to try to answer their questions more thoroughly.
Dr. Nicole Lamanna
We also try to set up educational visits to go over the drugs and their side effects. There are a lot of good support groups for CLL where they can go over questions. I hook patients up early when I first meet them. I give them a book from The LLS talking about CLL and then I give them websites that they can visit. I say to patients that not everybody’s ready to go online and look at their disease. Dr. Google can be a problem, but for those who want to, I want them to go to reputable sites that talk about the disease.
Conclusion
Michele: This has been wonderful. I’ve learned so much from you. Thank you, doctors, for your devotion and dedication to helping CLL and SLL patients. We all better understand shared treatment decision-making and how important it is in our journeys.
Stephanie: Thank you so much, Michele. Thank you to Dr. Lamanna and Dr. Farber for all the work that you are doing with your patients and patients everywhere in CLL and SLL. It’s so important to be empowered again, especially in the space of this disease, which requires a lot of engagement and understanding because there’s so much rapid development happening with different therapies.
I hope that you learned something from the program, that it spurred some thoughts, and that you can walk away with some actionable items on your list of things to do. We hope to see you at a future program. Take good care.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Jeff, diagnosed with stage 4 stomach cancer (gastric adenocarcinoma), reflects on his battle with a rare form of stomach cancer that was discovered incidentally during his attempt to donate a kidney in 2022. As a molecular biologist, he finds himself in a unique position of understanding the scientific aspects of cancer and personally enduring its effects. Although initially symptom-free, Jeff’s cancer was particularly challenging to detect due to a previous gastric bypass surgery. The cancer, a diffuse tumor type, spread silently and avoided detection through routine tests like gastroscopy and CT scans.
During his medical evaluation, a kidney tumor was also identified, leading to surgery that removed the kidney and the stomach tumors. Initially, there was hope that surgery alone might suffice, but when the true nature of his cancer was discovered, the treatment plan shifted. Jeff underwent chemotherapy with oxaliplatin and capecitabine, followed by radiation therapy. Despite these efforts, the cancer persisted, leading to a prognosis where the focus is now on palliative care rather than curative treatment.
Jeff candidly discusses the physical and emotional toll of his treatments. Radiation caused severe fatigue and potential long-term complications, while chemotherapy led to painful neuropathy, making even everyday tasks challenging. Despite these hardships, Jeff remains focused on living purposefully, continuing his work, and cherishing time with his family.
Jeff also warns against the lure of unproven alternative treatments, urging fellow patients to rely on evidence-based medicine. His outlook is grounded in realism, acknowledging the limitations of current treatments while still finding value in the time they can offer.
Mentally, Jeff struggles with the uncertainty of his condition but tries to find meaning in the time he has left. He emphasizes the importance of kindness, especially as he reflects on his legacy and the message he wants to leave for his children. His story is not just about fighting cancer but about living a meaningful life despite its challenges.
Name: Jeff S.
Diagnosis:
Stomach Cancer
Staging:
Stage 4
Symptoms:
None; found during the evaluation process for kidney donation
Treatments:
Surgery: Gastrectomy & partial nephrectomy
Chemotherapy: oxaliplatin & Xeloda (capecitabine)
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: None; found during the evaluation process for kidney donation Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation ...
