Kristin was diagnosed with stage 3A melanoma in April 2008 at the age of 38. Her diagnosis came unexpectedly during her attempts to conceive. While recovering from a fertility procedure, she noticed a change in a lifelong mole on her leg. Prompted by her family history of basal cell carcinoma and her dermatologist’s biopsy, she was diagnosed within days.
Kristin underwent extensive treatments, including two surgeries to remove the melanoma and affected lymph nodes, followed by a challenging year of interferon therapy, which left her with flu-like symptoms and required regular interruptions due to blood count drops. Despite the physical and emotional toll, she worked throughout her treatment and planned a celebratory trip to Alaska once her therapy concluded.
The stage 3A melanoma diagnosis had profound effects on Kristin’s personal life. Her inability to continue trying for children led to a period of depression, but she eventually found emotional resilience through activities like skydiving and advocacy. She began raising awareness about melanoma prevention and promoting the importance of early detection.
Kristin also navigated the complexities of being a caregiver when her mother battled cancer. This experience deepened her understanding of the patient-caregiver dynamic and strengthened her resolve to advocate for improved support and research in oncology.
Sixteen years after her stage 3A melanoma diagnosis, Kristin continues to educate and inspire others, emphasizing melanoma’s preventability and the importance of self-advocacy in healthcare. Her story underscores the critical role of research, the availability of modern treatments, and the emotional challenges survivors face while redefining their purpose.
Name: Kristin M.
Age at Diagnosis:
38
Diagnosis:
Melanoma
Staging:
Stage 3A
Symptom:
Change in color and border of a mole on her leg
Treatments:
Surgeries: melanoma and lymph node removal
Immunomodulator: interferon
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
Building Bonds Episode 2: How to Find and Partner with a Doctor for Better Waldenström Care
Finding a doctor is important in your Waldenström macroglobulinemia care. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Patient advocate Pete DeNardis, hematologist-oncologist Dr. Jonas Paludo from Mayo Clinic, and patient advocate Lisa Ramirez discuss how her decisions led to being treated by Dr. Paludo and forming a trusted patient-doctor relationship.
Building Bonds Ep. 2: How to Find and Partner with a Doctor for Better Waldenström Care
Hosted by The Patient Story
Finding a match is important in your Waldenström care. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Join host and patient advocate Pete DeNardis, Dr. Jonas Paludo from Mayo Clinic, and patient advocate Lisa Ramirez as she discusses how her decisions led to being treated by Dr. Paludo and forming a trusted patient-doctor relationship.
Discover the importance of second opinions and how even top specialists recommend them. Understand how a Waldenström macroglobulinemia specialist can provide a unique perspective having seen more cases. Learn about shared decision-making in Waldenström treatment. Hear first-hand experiences of navigating a chronic cancer with your doctor by your side. Get practical tips for advocating for yourself or a loved one in the treatment process.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a care partner began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding reliable information to support her care, so I am committed to helping others avoid similar difficulties.
At The Patient Story, we create programs to help you figure out what’s next. Think of us as your go-to guide for navigating the cancer journey. From diagnosis to treatment, we’ve got you covered with real-life patient stories and educational programs with subject matter experts. I’m your personal cheerleader, here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.
We want to give a big thank you to The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists who help you communicate with members of your healthcare team and provide information about treatment options.
The Patient Story retains full editorial control over all content. While we hope you find this helpful, please keep in mind that the information provided in this program is not a substitute for medical advice. Pete, a patient advocate and Waldenström’s survivor, will lead the conversation.
Peter DeNardis, IWMF Chair Emeritus
Peter DeNardis: I’m currently the chair emeritus of the International Waldenström’s Macroglobulinemia Foundation. I have been a long-time volunteer for the organization and a patient myself. I was diagnosed 20 years ago and I’m well aware of the importance of a strong patient-doctor relationship. I look forward to learning from our esteemed panelists about how best to build and maintain that relationship.
With us is Dr. Jonas Paludo, a hematologist-oncologist and assistant professor of medicine and oncology at Mayo Clinic in Rochester, Minnesota. His research interests include studies to understand the biology, genetics, and therapy of lymphoma and plasma cell disorders, and he is also a noted researcher in Waldenström’s.
Lisa Ramirez, Patient Advocate
Lisa Ramirez: I was diagnosed in 2021. I was getting into a doctoral program and had to do some routine testing and physical exams, and in the process, I was diagnosed with Waldenström’s macroglobulinemia. The diagnosing oncologist was retiring, so he passed me on to another doctor in his practice.
I did a lot of research on Waldenström’s immediately and read Dr. Gertz’s recommendation on getting a second opinion, which I appreciated. I looked for the doctor who I thought would be best in getting a second opinion from and that was Dr. Paludo since he specialized in Waldenström’s in young people. I got another opinion from a physician at a major cancer center in the state in which I live as well.
I had a great rapport with Dr. Paludo immediately, but I initially thought I would only see him for a second opinion since I lived in Texas and he was at Mayo Clinic. I made it work and secured Dr. Paludo as my primary oncologist. I was very pleased about that.
Proactively Participating in Your Care
Peter: It’s good that you immediately did research and also went for a second opinion. Is it appropriate to say that you were an involved patient from the start?
Lisa: Yes. I work in public health. I’m a natural researcher and a very curious person. I wanted to learn as much as I possibly could and as quickly as I could about Waldenström’s to plan out my course of treatment and to be a well-informed patient.
I listened to all the lectures I could get my hands on and tried to understand the philosophies of the different cancer institutes. They seem to have differing philosophies about treatment and I tried to find one that fit with my personal philosophy and how I wanted to approach treatment.
I wanted to learn as much as I possibly could and as quickly as I could about Waldenström’s to plan out my course of treatment and to be a well-informed patient.
Lisa Ramirez
Signs and Symptoms
Peter: Looking back, do you think you had any symptoms that you weren’t paying attention to at the time?
Lisa: I was having night sweats, but I didn’t I thought I was experiencing early pre-menopause symptoms. Now I know the difference between hot flashes and night sweats. There’s a big difference.
I had some testing done because of other reasons and there was a note to rule out lymphoma and to check in six months after. Right at the six-month mark, my primary physician had me see a hematologist because of those test results. I had zero symptoms then. I felt great.
Looking back, I had some input from other oncologists that perhaps I had the disease for so long that I thought I felt good. That small incremental change in a negative way can go unnoticed, but I thought, “Does it matter? If I believe I feel good, then I feel good.”
Insurance Concerns
Lisa: The average time between diagnosis and treatment is about two and a half years and that’s about how long it took for me, so I was right on pace with the average.
Peter: You got a second opinion in a different state. You live in Texas while Mayo Clinic is in Minnesota. Did you have any financial or insurance issues trying to see Dr. Paludo?
Lisa: Surprisingly not. I received some treatment in another city in Texas. When you break down the costs, that treatment was more expensive.
Different institutions have different priorities in terms of testing and the amount of testing at checkups. In my case, the cost of the additional testing outweighed the cost of travel to Minnesota. It ended up being more cost-effective and worth it to travel to receive treatment at Mayo Clinic.
Peter: You’re very fortunate in that regard. I’m glad that worked out for you. You’re under great care and it appears that right from the start, you’re a very involved, proactive patient, so I applaud you for that and hope that other patients can take your lead.
WM at a Glance
Peter: Dr. Paludo, many of us patients have a general idea of what Waldenström’s macroglobulinemia is, but can you give a 30,000-foot view explanation of what the disease is?
Dr. Jonas Paludo: Waldenström’s is a rare type of blood cancer. It’s a form of an indolent or slow-growing subtype of a B-cell non-Hodgkin’s lymphoma. It’s a disease that has some overlapping features between lymphoma and myeloma, but it’s a type of blood cancer.
Common WM Questions
Peter: You see patients either coming initially to see you or for a second opinion. They probably have similar questions, but in your experience, what are the more common questions that patients ask?
Dr. Paludo: I can group the most common questions into three specific categories. In one shape or another, they’re trying to understand: What is Waldenström’s? What is this disease? Then the next one is: what do we do about this? Do we have to do anything about it right now? What it will look like? And then the third one is: what is my prognosis? What can I expect out of this disease?
Peter: Those questions are pretty common for Lisa and me when we were first diagnosed, so it’s good to see those questions are still being asked.
Diagnostic parameters, treatment options, follow-up testing, and surveillance are not as well-established in rare diseases as they are in more common diseases.
Dr. Jonas Paludo
Getting a Second Opinion
Peter: Many in the medical community and even the IWMF itself encourage patients to get a second opinion in certain circumstances. Dr. Paludo, as a healthcare provider, what are your thoughts on patients getting second opinions?
Dr. Paludo: Waldenström’s is a rare disease and like any rare disease, a second opinion should always be considered. Diagnostic parameters, treatment options, follow-up testing, and surveillance are not as well-established in rare diseases as they are in more common diseases or more common forms of cancer, like breast cancer or colon cancer, for example. That’s where a second opinion can help.
In addition, the familiarity of physicians with the disease or the current evidence and data of the disease can be quite variable. It’s part of reality. We can’t keep up with all the information generated daily for all diseases. Getting a second opinion from someone who has more experience or more interest in that specific type of rare disease is very important and adds a lot to the treatment and management.
I always encourage second opinions. To be honest, with most patients I see with Waldenström’s, I’m the one giving the second opinion. But for the patients who we see that are local, I encourage asking for another opinion elsewhere to have different points of view. I don’t think a second opinion would ever hurt a patient. It can only add information and help with the treatment and plan.
Peter: That’s a good point and hopefully they’re not trying to juggle three different opinions. In Lisa’s case, it was the one that she felt more comfortable with, which is appropriate.
Dr. Paludo: That’s a potential downside, but the benefits of a second opinion outweigh that downside.
Lisa: Waldenström’s is so different in terms of it being a cancer because you want to time treatment perfectly and take into account your quality of life. With a lot of other cancers, there’s a rush to treat and there are very specific treatment regimens. With Waldenström’s, you’re playing a very long game of chess.
You want your partner to be someone who you trust and who understands your quality of life and your age as you’re moving along the course of treatment. You’re going to want someone who understands you well enough, to keep pace, and who has a similar philosophy and approach to treatment. With Waldenström’s in particular compared to other cancers or other diseases, it’s important when selecting an oncologist that there’s a good fit.
Different cancer centers can appeal to different types of people. Mayo Clinic and Dr. Paludo were the perfect fit for me.
Dr. Jonas Paludo
Knowing Your Options
Peter: How did you know where to go for a second opinion? You mentioned Dr. Gertz’s presentation, but how did you figure out what your options were?
Lisa: The resources from the IWMF immediately pointing to Dr. Gertz and understanding Mayo Clinic’s philosophy led me there and looking into physicians there. I found Dr. Paludo in relation to Waldenström’s and other aspects of Waldenström’s that were of particular interest to me. I immediately sought him out for a second opinion.
I seem to resonate more with the philosophy of Mayo Clinic. They seem to have an approach that is slower to overreact. Their approach feels more strength-based rather than fear-based and I respond to that. When I need to embark on an intimidating treatment like chemotherapy, I want my partner to be able to reassure me that I’m strong enough, that I’ve prepared enough, and that it is the right time.
I understand that people have different motivations for starting treatment and some people can be more motivated by fear-based approaches. I don’t respond well to that. I respond better to a strength-based approach and the reassurance that all my questions are answered and that there’s enough time spent understanding the procedure or what’s happening with the progress of the disease. I find direct information very reassuring.
I have had oncologists who took a different approach where they feel nervous about my condition and then I start to feel very nervous and anxious. I know that it’s best to time treatments correctly and wait a little bit longer. It’s a fine line. Different cancer centers can appeal to different types of people. Mayo Clinic and Dr. Paludo were the perfect fit for me.
Finding a WM Specialist
Peter: Dr. Paludo, you mentioned that some patients come to you initially while others come for second opinions. If you’re telling a patient to get a second opinion, where do you direct them to? And for the patients who come to you initially, how did they find out about you in the first place?
Dr. Paludo: I also rely a lot on the IWMF resources to help patients decide on where to go next. There are so many factors, like insurance coverage and cost of travel, that are so particular to each patient, so I try not to be very specific. I point them to resources that they can look at to see which one makes more sense based on insurance, cost, travel, timing, family members, where they are, and things like that.
As with most rare diseases, you find more experience in bigger centers because they tend to see more patients with their rare diseases. It doesn’t necessarily mean that’s the only place you can find experience and expertise. It’s just the more common place where you can find expertise for rare diseases. The IWMF helps with pinpointing areas with more expertise or experience with Waldenström’s than other sites.
Peter: Because of my involvement with the IWMF, I’m well aware of the services they provide. On their website, they have a list of top doctors to go to for a second opinion regardless of what part of the world you’re in. The IWMF also has online discussion groups and Facebook groups where you can ask other patients who they go to. Granted, that’s word of mouth from one patient to another, but you can form an idea of who are the more noted doctors and who you could see if you want a second opinion.
The biggest challenge that I see is often related to indications to start treatment… sometimes it’s better if we don’t jump into treatment and instead sit tight and watch very closely.
Dr. Jonas Paludo
Building Bonds Ep. 2: How to Find and Partner with a Doctor for Better Waldenström Care
Hosted by The Patient Story
Finding a match is important in your Waldenström care. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Join host and patient advocate Pete DeNardis, Dr. Jonas Paludo from Mayo Clinic, and patient advocate Lisa Ramirez as she discusses how her decisions led to being treated by Dr. Paludo and forming a trusted patient-doctor relationship.
Peter: Dr. Paludo, what do you see that some healthcare professionals don’t get right about a WM patient?
Dr. Paludo: Waldenström is such a unique disease that the biggest challenge that I see is often related to indications to start treatment. Because of the uniqueness of this disease with overlapping features with other indolent lymphomas, sometimes I see more of a generalization of what we do for similar diseases applied to Waldenström’s. I understand where they’re coming from, but it doesn’t always fit with our best practices for Waldenström’s.
They haven’t seen a lot of cases and sometimes it can be difficult for a provider to sit tight on a patient who has a very high IgM level and hold off on doing something. It’s often easier to do something, but sometimes it’s better if we don’t jump into treatment and instead sit tight and watch very closely when patients are asymptomatic or not having significant symptoms.
Peter: I hesitate to say this, but back when I was first diagnosed, there was something called the 10,000 IgM Club. There were a handful of patients who felt that they were okay and feel fine. Their IgM level is 10,000, but their symptoms are fine. In hindsight, that may have not been, but every patient is different. You’re exactly right. It depends on a patient’s symptoms and how they’re feeling along with the blood values. It’s critical to go to a specialist if you can.
I’m Newly Diagnosed. What Now?
Peter: Let’s turn to the important role of the doctor-patient relationship in managing your disease course, both short- and long-term, especially about WM. It’s considered incurable, but with the more novel agents that have come around in the last 5 or 10 years, it’s much more treatable.
Lisa, you mentioned your path to getting a second opinion. What advice would you give to a newly-diagnosed patient who’s looking for care and what do you think is most important?
Lisa: What we’re talking about here is building rapport. You have to be able to trust your oncologist 100%. There are some scary moments and you question yourself. You want to have the reassurance of an oncologist who has expertise in this area, understands you, and has a sense of how uniquely your disease is manifesting.
Every WM patient is a little bit different, so find a physician who you can trust and sees you. Sometimes that’s not something tangible. It’s what occurs during a conversation and a sense that you feel shared insights or philosophies. During my visits with Dr. Paludo, he would ask, “And what else?” I loved that he always left room for all of my questions and he was always very direct with me.
You want to have the reassurance of an oncologist who has expertise in this area, understands you, and has a sense of how uniquely your disease is manifesting.
Lisa Ramirez
Do your research. Understand what it is that you want in terms of your quality of life and what’s important to you.For example, I was going to start treatment under the care of a different oncologist, which would have put at risk my ability to dance ballet on my toes because there was a higher risk of peripheral neuropathy with that particular treatment. At my age, I thought the first treatment I should do perhaps shouldn’t be that one. I was able to have that conversation with Dr. Paludo and talk about things that are important to me.
Oncologists see a lot of different patients and their priority is to save your life and get you treated, which is understandable, but it’s a little bit different with WM. My quality of life includes being able to dance on my toes, so losing feeling in my toes was a big deal. It would have negatively impacted my quality of life had I started with that particular treatment if I had the unfortunate side effect of being unable to feel my toes.
Find an oncologist who understands who you are as an individual, what your quality of life is based upon, what’s important to you, who you feel comfortable sticking with throughout your life, and who will map out a course of treatment that’s going to work for you. One time, Dr. Paludo said, “You’re probably going to have to do all the treatments. We just have to figure out what works for you when.” Everyone’s different, so that’s important.
Deciding to Stay Local or Travel for Your Care
Peter: You have a good rapport with Dr. Paludo. Do you still see a local oncologist in Texas?
Lisa: No, I see Dr. Paludo exclusively. I was already scheduled for treatment somewhere else, but I got cold feet at the last second. The first step in treatment is so critical. It impacts the next move and the next move and the next move. Even though those moves are spaced out—hopefully many years apart—it still sends off a ripple effect.
You want to feel very comfortable with your provider and the institution you’re receiving care from is critical. I had to advocate for myself and say, “I know it doesn’t make sense to seek treatment in a different state and to get my primary care from an oncologist so far away, but we’re going to Minnesota.”
How Often Do You See WM Patients?
Peter: Dr. Paludo, Mayo Clinic is a world-renowned medical institution, but, hopefully, many people with Waldenström’s also understand that it’s world-renowned for Waldenström’s macroglobulinemia. Out of curiosity, can you say how many patients you maybe see a day or in a week that have Waldenström’s?
Dr. Paludo: It’s variable these days, but I estimate about two to three patients a week with Waldenström’s and sometimes as many as five patients a day. We looked at this a few years back and to give some context, if you were to consider all practicing doctors in the US and all newly-diagnosed Waldenström’s patients in a year, each doctor will see a new case of Waldenström’s once every eight years. This gives you a sense of how rare diseases are very, very difficult to come across.
I want the patient to feel empowered that they can ask any question, no matter what it is, and bring up any concerns or fears that are important to them.
Dr. Jonas Paludo
Approaches to Personalized Care
Peter: You and Lisa have a very good doctor-patient relationship. In your experience, does each patient approach you differently? Do you have a different approach depending on what kind of interaction you have or what works best for that patient?
Dr. Paludo: My approach is different for each patient. The things that we always try to discuss and focus on are the main concerns that each patient brings to the visit, which can be different. If someone was recently diagnosed with Waldenström’s versus someone who’s reviewing, studying, researching, and now we’re talking about treatment, there would be some differences in how I approach each patient.
Managing Your Life with WM
Peter: Given that Waldenström’s is becoming more of a manageable disease, what is your guidance to patients when they first come to you as far as dealing with having a disease like ours? You have periods of requiring active treatment and periods of watching and waiting for the next shoe to drop, in a sense.
Dr. Paludo: It depends on the situation, but I’m always trying to discuss the key concepts related to Waldenström’s. We talk about follow-ups and treatment indications. I like to address that because they’re important for the patient, especially if they’re not coming to Mayo for their care.
At the end of the day, we always try to establish trust and an open space. I want the patient to feel empowered that they can ask any question, no matter what it is, and bring up any concerns or fears that are important to them. It’s difficult to do everything in one visit, although we do try, but sometimes we need several visits to discuss all of these.
Peter: That’s very commendable. That should be the model for all clinicians. Unfortunately, a lot of them are pressed for time or dealing with a large patient load, so they don’t make the extra effort, and you should be applauded for doing that.
WM Treatment Options
Peter: Lisa, you had some choices to make concerning treatment. Were you aware of the treatment options before you spoke to Dr. Paludo?
Lisa: Yes. The second oncologist I saw was supposed to be my first treatment opinion. When I started talking to her about the treatments, she said, “Gosh, you sure do know a lot about this. What do you think?” I didn’t get the first opinion that I was hoping for because I had done so much research that the oncologist felt that maybe I had a better sense of what treatment I should start with, which ultimately led me to a second opinion with Dr. Paludo.
I have done a lot of research, which I enjoy doing. It’s not a situation you want to be in, but I work in public health and public health strategy, so I enjoy strategy and research. I wanted to find out as much as I could about the treatment options. From the scientific papers, it’s not always clear. Actual patient experiences are something that’s missed in very scientific journal articles, which can only be shared through patient-to-patient experiences.
With Waldenström’s, that can be additionally challenging because we are each so unique. It’s a full-body disease that manifests differently. The symptoms are different from person to person. There are also fewer females with the disease and fewer people my age, so it can become more difficult to know exactly what to expect even though you do a lot of research.
What reduced my anxiety was talking to Dr. Paludo about being vulnerable about parts of the treatment that I thought were most concerning.
Lisa Ramirez
The Emotional Impact of a WM Diagnosis
Peter: You did a lot of research, but how were you dealing with it emotionally? How did it affect you when you were first diagnosed and how did you deal with the enormity of it?
Lisa: When I was first diagnosed, I was shocked. I knew I couldn’t have the conversation with my daughter that day, so she had a sleepover that night.
After that, I felt somewhat calm about it, even though I do have a history of anxiety disorder. I knew going into treatment that my outcomes would be better if my anxiety was reduced. Stress plays a huge role in your physical health in general, but especially as you undergo something as stressful as chemotherapy where you have a lot on the line.
I made sure to take care of my mental health through exercise and seeing a therapist weekly. What reduced my anxiety was talking to Dr. Paludo about being vulnerable about parts of the treatment that I thought were most concerning. I was able to talk in-depth about how I was concerned about a recurrence of my anxiety and eating disorders in the course of treatment.
Dr. Paludo was able to reassure me that, at any point in time, if I was having concerning symptoms, we could talk about it, but most of all, we could always stop treatment and take a different course of action. That option was never presented to me before by any of the oncologists I had seen. Having that way out and knowing that I had that autonomy was so reassuring and helped me get through a lot of rough times throughout treatment.
I had a pretty good treatment experience. It wasn’t always easy, but it was a lot easier knowing that I had the support of my oncologist to pivot, redirect, and find a different course of treatment that worked better for me. My quality of life was most important to both of us.
Peter: Thatfocus on quality of life is critical. Every patient’s different, both physically and mentally, and it’s important to treat both aspects of how a patient approaches their disease.
Important Takeaways from Initial Consultation
Peter: Dr. Paludo, when you see a patient, what do you want patients and care partners to take away from that initial visit with you? What do you want them to understand?
Dr. Paludo: One of my priorities is to have patients understand that treatment for Waldenström’s is not a sprint but a marathon. It’s a long-term process that involves long-term planning, and we have to consider all short- and long-term strategies for treatment.
I usually say that when you’re getting treatment, you’re not in a long-term commitment. You can always stop and find a different option. I also like to discuss, usually in broad terms, that what we have today for treatment options has an overall similar efficacy. They are different in potential side effects, logistics, duration, and frequency. That often allows patients to focus on the implications of the treatment on their quality of life and their goals.
Once we remove the efficacy piece from the discussion, we can talk more about side effects and logistics. We can focus on how the treatment can help patients achieve what they want at the end of the day, which is improved quality of life, and accomplish what’s important to them. Those are things that I always like patients to take away from those initial discussions about treatment options before even we decide on which treatment to go next.
Lifestyle Changes in the Face of a WM Diagnosis
Peter: Lisa, you wanted to make sure you had a good quality of life. After you were diagnosed and started treatment, did you do anything different? Did you make lifestyle changes to help you emotionally and physically?
Lisa: Absolutely. Dr. Gertz said that frailty is the enemy, so I immediately got a personal trainer and hit the gym. People train for marathons. This is the rest of my life. I don’t want chemotherapy to knock me down. I need to be as fit as possible.
I also participated in an educational session on nutrition through The Leukemia & Lymphoma Society and met with a nutritionist. I changed my diet to reflect some of the recommendations based on those talks. I’m eating more of a plant-based diet and building up my strength as I approached treatment knowing that treatment was inevitable.
I saw a therapist weekly, which ultimately helped. During chemotherapy, I didn’t miss any work. I remained very active. I was still able to dance. I wasn’t allowed to skateboard anymore, but I was still exercising as much as I could to fight the fatigue and it paid off. That makes a big difference in terms of how one feels during the course of treatment and your ability to be resilient and make good progress in treatment.
Peter: I agree completely. It’s important to move. A lot of patients say that their treatment has debilitated them, but I tell them to try to move a couple of feet and take a couple of steps a day and build on it. It does make a difference.
Maximizing Your Quality of Life
Peter: Dr. Paludo, do you have any follow-up advice for Waldenström’s patients on how to deal with quality of life issues? Can they continue to live like they did before they had WM?
Dr. Paludo: Absolutely. It’s always difficult to cope with a new diagnosis of any cancer, including Waldenström’s. Every patient is a little different on how they try to cope. I try to understand what’s important for each patient and focus on what we can do to control what we can.
With Lisa, dancing was very important. We couldn’t control when treatment was needed, but we could control that she could continue to dance. It would be a form of exercise that helps her cope and keep some form of normalcy. Life can be disrupted with diagnosis and treatment, so trying to keep as much of a normal life as possible after diagnosis or when you’re going into treatment is very important. As you go through the watch and wait period with Waldenström’s before treatment or in between treatments, it’s very possible to live life like before as much as possible.
I’m not a mental health expert, so I also look for help. I refer my patients to cancer therapists and psychologists. The team we have at Mayo Clinic helps. I play within my limitations and always look for help from others who know more than I do about topics that are very important for every patient.
Patient Advocacy
Peter: Lisa, you’ve advocated for yourself right from the start. What would your advice be to newly-diagnosed patients or even those who are even in remission?
Lisa: For newly-diagnosed patients, get connected with IWMF. I was so impressed with the resources available for such a rare disease. It’s honestly very impressive how well IWMF is organized.
If you’re a young person or under 50, it can be more challenging because it’s almost a different disease. When you have young kids at home, there are a lot of different things to consider. Getting connected with the IWMF support group for young people was helpful. Find support with people in your community.
Watch lectures and read all the resources available sooner rather than later. You have some time to figure everything out. If you’re newly diagnosed and you don’t have symptoms that require immediate treatment, you have time to research.
It’s necessary, I would say also, to look at the different cancer institutes that have different philosophies. When you’re listening to lectures from different experts, find who resonates with you and what makes sense to you. Who do you seem to align with in terms of what feels right for you and what you value?
Take time to consider all that’s important to you so that you can locate the physician and your team that you’re hopefully going to be with for the rest of your life, working on achieving a good quality of life while living with this disease. Take in all the information, talk to your support network, and connect.
At first, I thought that having Dr. Paludo as my primary oncologist was not possible, but you may be surprised at what is possible so have hope and advocate for yourself.
It’s great to have an external brain to help process the information and to reflect back to you.
Lisa Ramirez
The Role of Care Partners
Peter: You approach each appointment with knowledge beforehand, you do your research, and you advocate for yourself. Do you go to your appointments on your own or do you take a care partner with you? You read that someone should always have someone else with them because they can mishear something. How do you manage that?
Lisa: I have a great partner and support. You’re absolutely right. Sometimes it can be overwhelming. When I would go to appointments with a different provider, I’d walk out sweating and notice I was so nervous during the appointment. Having someone there can be helpful. When I went to treatment, my partner would go with me. One time, my sister went with me.
Sometimes, you get disappointing news. I oddly got disappointed that I couldn’t do chemo a couple of times and I got upset and emotional, so to have someone to provide emotional support is helpful. It’s much better to not have to do it alone.
But if you are alone, there are people who are there to support you. At Mayo Clinic, there’s a whole team. Everybody there is supportive, so you can do it alone. It’s great to have an external brain to help process the information and to reflect back to you. Maybe you didn’t even notice that you weren’t feeling comfortable with a certain provider. It’s helpful to have someone to bounce off, so it’s important to have someone with you.
Peter: Dr. Paludo, what’s your advice in that regard? Do most patients come with someone to the appointment? And do you suggest it to patients if they don’t?
Dr. Paludo: Most patients come to their appointments with someone else. That’s very helpful and very important, if possible, of course. It’s difficult to take people away from their normal day-to-day lives, but it helps to have someone else also listening. We usually don’t remember everything that is discussed. Each person may remember different parts of the discussion. It helps, so I encourage that if possible.
Living with WM
Peter: Lisa, you’ve been living with Waldenström’s for a few years now. How do you not let Waldenström’s consume your everyday life? What’s your approach to living with it?
Lisa: In the beginning, it was difficult to not let it consume my life. For me, planning out a theoretical course of treatment to last my whole life was helpful. What helped was having that plan in place and also having a plan when I didn’t have symptoms or symptoms that I thought were bothersome to me.
Having those things mapped out in advance allows me to trust the plan and not have to think about it in my daily life. Once those decisions are made for the future, I can always change my mind at any point, but to have that mapped out for myself allows me to forget that I have Waldenström’s and live my life. It might take a minute to get there.
At first, it’s consuming. You’re consumed with the research. Don’t overreact. Take your time. Talk with your oncologist about a plan, put a plan in place, and then put it aside and live your life. Ultimately, treatment is all about having a good quality of life and living your life normally. You want to be able to do that and not add any additional stress to yourself. Putting a plan in place, putting it aside, and referring back to it when you need to is important.
Talk with your oncologist about a plan, put a plan in place, and then put it aside and live your life. Ultimately, treatment is all about having a good quality of life and living your life normally.
Lisa Ramirez
Waldenström: The Patient-Physician Relationship
Peter: Right from the start, you had a good relationship with Dr. Paludo. How has that evolved over the past few years? Is it different now than it was initially?
Lisa: Dr. Paludo has been very consistent. Initially, I met with him before I even met with who I thought was going to be my primary oncologist. I walked away from that conversation saying, “Gosh, I met the right oncologist for me. Too bad. I can’t possibly get treatment in Minnesota.”
It felt like a good fit from the beginning and we’ve built upon that trust. I instantly felt comfortable and felt trust. He engaged with me in a way that was strength-based and not over reactive. He’s very steady. Our relationship hasn’t changed much other than we’ve been through this treatment together and there’s a deepening of trust.
I’ve talked about my next treatment episode with my partner and when I have to do the weekly treatment, we’re going to live in Minnesota for six months. There’s no question about that. I know Dr. Paludo’s there for me and he’s my oncologist until the end, so I feel very comfortable with that.
Key Takeaways
Peter: Dr. Paludo, do you have any key takeaways for patients or healthcare providers in building and sustaining a strong relationship through the cancer journey?
Dr. Paludo: Advocate for yourself. Go after what you think is important for you. Lisa and I are on the same page. For the healthcare providers, what’s very important is to actively listen to each patient’s priorities. Listen and not just hear. Pay attention and focus on what’s important for each patient, like their main concerns and fears.
As providers, we have to be frank and honest with the limitations of what we know and what we don’t know about Waldenström’s. There are a lot of things that we know now that we didn’t know before, but there are a lot of questions that we can’t answer yet. Being honest with our limitations, paying attention, and focusing on what is important to the patient help build that trust, which is important in a relationship. We’re all going together through good and not-so-good moments in this long journey of Waldenström’s.
Being honest with our limitations, paying attention, and focusing on what is important to the patient help build that trust, which is important in a relationship.
Dr. Jonas Paludo
Peter: It’s good to see you’re both in agreement. You’re both following the proper path and I applaud both of you, especially for taking the time to share your experience with healthcare providers and patients.
Lisa mentioned that she first did a good bit of research through the IWMF website. I did that myself 20 years ago. I was a youngster back then and the services and support they provided meant so much to me that I started volunteering for the organization and I’ve been with them since then.
Waldenström’s is a rare disease, so you don’t encounter many people who have it, so finding an online community was of great benefit. Sharing stories with them, joining support groups, taking part in discussions, viewing webinars, and going to their annual educational forum are key components of becoming a more knowledgeable patient.
Before we had the technology, I would have my own chart that I would give to my doctor and say, “Here are my trends.” He would laugh at me, but he would look at it. We had a great relationship and that’s important to have. Be educated about your disease, know your options, what your preferred lifestyle, and what you want in quality of life, and pick a doctor who fits well.
Lisa: My therapist thinks Dr. Paludo is great.She’s convinced he took some classes in psychotherapy. She’s got great admiration for him. I’m also trained as a therapist and I would say Dr. Paludo has those skills, but please don’t leave the work you’re doing to be a therapist, although you’d be a great one.
Mayo Clinic is huge and yet after every visit, I would think, “How is it possible that each person on my care team was able to spend that much time with me?” I’ve never encountered that anywhere else. How is it that nurses remember me? People remember me. We had little inside jokes. Those things matter so much.
Our healthcare environment is changing. There’s limited time with patients. We’re speaking to healthcare institutions and I don’t know how providers get reimbursed and what expectations are in general.
Physicians want to have these kinds of relationships with their patients and perhaps there’s a larger pressure that prevents them from doing so. I hope that we can get back to that. Institutions like Mayo Clinic and physicians like Dr. Paludo give me the hope that it’s possible to have those kinds of relationships with patients in the current healthcare environment somehow.
Dr. Paludo: I don’t think I can say it better. It’s important to keep in mind what the priority is, which is the patient and what matters to that patient. Always keeping that in mind is the goal at the end of the day.
Conclusion
Peter: I enjoyed this discussion. It’s always good to meet with a fellow WMer and a noted, world-renowned Waldenström’s clinician and researcher. I’m very grateful for both of you for sharing your time. I hope others find this information very useful and beneficial as much as I did. Thank you both and thanks to The Patient Story.
Tiffany: Thank you, Pete, Lisa, and Dr. Paludo for an engaging discussion. It is so crucial to be empowered so that you and your caregivers can make informed decisions about your care.
Amber’s Stage 4B High-Grade Serous Ovarian Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Amber’s symptoms began subtly with bowel irregularities, night sweats, missed periods, unintended weight loss, fatigue, and pain, but she initially rationalized these as related to stress or her active lifestyle. With her mother battling stage 3 colorectal cancer at the time, she feared a similar diagnosis but delayed seeking medical help. By the fall of the same year, her symptoms had worsened significantly, including blood in her stool and severe discomfort, prompting her husband to schedule medical appointments.
After a colonoscopy revealed a mass, a subsequent emergency surgery determined Amber had stage 4 ovarian cancer, with the tumor spreading to both ovaries and her colon. This led to initial chemotherapy and the placement of an ileostomy bag. She later transferred care to a specialized center, where treatment included more chemotherapy to shrink the tumor before undergoing a radical hysterectomy and removal of other affected tissues. Genetic testing revealed she was BRCA1 positive, which shaped her treatment plan and ultimately led to the decision for a preventive double mastectomy two years after achieving remission.
Despite multiple allergic reactions to treatments and procedures, she persevered, completing six rounds of chemotherapy, a surgical recovery phase, and several years on a targeted PARP inhibitor. Though she mourned the loss of her fertility, she and her husband pursued fostering and adopted their daughter, who brought new purpose and joy to their lives. Now in remission, Amber reflects on the challenges of cancer, the trauma it caused, and the blessings that emerged through her resilience and determination.
Name: Amber C.
Diagnosis:
High-Grade Serous Ovarian Cancer
Staging:
Stage 4B
Symptoms:
Bowel irregularities (urgency, alternating constipation, and diarrhea)
Night sweats
Unintended weight loss
Irregular periods
Fatigue
Pain while sitting or going to the bathroom
Blood in stool
Treatments:
Surgeries: Debulking surgery, radical hysterectomy, oophorectomy, ileostomy placement, preventive double mastectomy with breast reconstruction
Chemotherapy
Targeted therapy: PARP inhibitor
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
In 2014, Jim was diagnosed with myelofibrosis after an X-ray for kidney stones revealed an enlarged spleen. Follow-up tests showed elevated white blood cell counts, leading to a bone marrow biopsy and confirmation of the disease. Initially asymptomatic, he monitored his condition through regular blood work.
Four years later, in 2018, he began experiencing severe fatigue and breathlessness. These symptoms led to a diagnosis of myelodysplastic syndrome (MDS), a serious condition that could progress to leukemia. His prognosis was grim without a stem cell transplant, giving him potentially only months to live. Despite his age of 70, a medical committee deemed him a suitable candidate for the transplant due to his overall health. He underwent chemotherapy and numerous blood transfusions to prepare for the procedure.
A matching stem cell donor was found in Germany, and the transplant occurred in October 2018. The process involved intensive chemotherapy and total body radiation, followed by a stem cell transplant. Post-transplant recovery was challenging, with prolonged hospitalization, physical weakness, and isolation to protect his immature immune system. However, he avoided severe complications such as graft-versus-host disease, experiencing only a manageable rash.
This experience reshaped his outlook on life. Gratitude became a central theme, as he embraced moments with family, trips to the beach, and future travel plans, including a visit to meet his donor. He credits his recovery to the unwavering support of his wife, who served as his full-time caregiver, and his confidence in his medical team.
Looking ahead, he hopes for advancements in treatments to eliminate the need for stem cell transplants and alleviate complications. He encourages others facing similar challenges to maintain faith in themselves, their medical teams, and support systems.
Name: Jim C.
Age at Diagnosis:
70
Diagnoses:
Myelodysplastic syndrome (2018)
Myelofibrosis (2014)
Symptoms:
Enlarged spleen
Fatigue
Shortness of breath upon exertion
Treatments:
Chemotherapy
Blood transfusions
Allogeneic stem cell transplant
Thank you to Sobi, Karyohpharm, GSK, and Novartis for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
My myelofibrosis was discovered accidentally. I didn’t experience symptoms.
Introduction
I’m a retired lawyer. I was a prosecuting attorney for 10 years and then a corporate litigator for about 20 years. Nearing the mid-2010s, we moved west of downtown St. Louis. We live with our daughter and her three children, so they help us and we help them. We have horses, donkeys, and chickens. Most of the time, I’m the pool boy, the stable boy, the groundskeeper, and the handyman, but most importantly, I’m grandpa.
I was diagnosed with myelofibrosis in 2014 and myelodysplastic syndrome in 2018.
Pre-diagnosis
Initial Symptoms
My myelofibrosis was discovered accidentally. I didn’t experience symptoms. I had kidney stones, so I would get an X-ray every year. In late 2013 when the X-ray results came back, I also had a slightly enlarged spleen, which I didn’t think was important.
Luckily, my wife’s a nurse and our doctors thought it was important. They started doing some follow-up and more blood work. My white count was too high, which was suggestive of a problem.
I had no symptoms, no discomfort, and no treatment. We kept track of it by doing blood work fairly often.
Getting a Blood Cancer Diagnosis
My family doctor recommended that I see an oncologist, who my wife and I knew well. He ordered a bone marrow biopsy. I still remember the day he came in and said, “We’ve got a diagnosis. You have blood cancer.” He indicated that it was not his area of expertise, so he recommended either Saint Louis University or Washington University. Since WashU’s where I’d gone to law school, I figured their medical school was probably good too, so I chose Washington U.
I met a doctor there who is a leader in that area of cancer. He told me about myelofibrosis, where you had 7 to 10 years on average before you run into trouble, and at that point, it might morph into leukemia or something. I had no symptoms, no discomfort, and no treatment. We kept track of it by doing blood work fairly often.
In the spring of 2018, I began to get very short of breath at the slightest exertion. I was 70 years old at the time and I thought that maybe it was my age, but it was worse than that. Fatigue set in, so we did more tests.
We had a conversation with the doctor and he said, “Jim, this is serious. You have myelodysplastic syndrome. With your situation, you might go six months, a year, or a little longer if you’re lucky unless we can find a donor and get a transplant.”
We walked down the hall to the transplant doctor to begin the process. When we first talked, she used the word cure, that stem cell transplant is a possible cure. It was encouraging. She also said, “When I saw your picture, I knew that you were a good candidate for this,” so that gave me comfort and hope.
Because I was 70, a special committee had to meet to determine my eligibility. I was otherwise a healthy person, so her acknowledging that and saying I was going to be okay for the transplant made me feel good.
I was very confident in the medical treatment that I was getting and the support I had from my wife and my family.
Reaction to the Diagnosis
I don’t remember panicking or getting too distressed. When the doctor from Washington said 7 to 10 years, I thought, well, I’m already 70. When you tell a 70-year-old that he’s got 7 to 10 years, he’s probably going to say that’s not too bad and so that didn’t upset me too much.
What it did do is that instead of my wife and I talking about doing something someday, we scheduled it for the following month or year. We started to travel a lot and did a variety of other things that kept getting pushed back. You say that you’ll do something someday and so we did.
When the doctor came in and gave me three months, that was a little more unsettling. The worst moment was being told you’ve potentially got a few months to live. It was a combination of being an optimistic person and a person of faith. I was very confident in the medical treatment that I was getting and the support I had from my wife and my family.
The other possibility is I’m oblivious to it. What am I going to do? I can shout and throw things; that’s not going to help. I don’t ever remember feeling down.
Shortly before I went into the hospital, I said I’ve got to get to the beach again. Living in St. Louis, there are no beaches nearby, so we took a quick trip down to Destin. It was still warm enough where you could walk along the beach and that was relaxing.
There was one time when I thought this might be the last time I was going to be at the beach. I guess it’s part of my faith. I thought if I was going to die six months from now, after that, I probably wouldn’t miss the beach. I hope where I’ll be is a lot better than the beach anyway, so that’s not an issue.
They found a donor and it was a perfect match… My donor is from Germany.
Getting a Stem Cell Transplant
For the myelofibrosis, we watched and waited. Once the myelodysplastic came in, we immediately started a pretty serious regimen of chemotherapy and blood transfusions. In June 2018, I had a week of chemo every day, probably one or two transfusions during that week, a couple of weeks off, and then repeat. I don’t know how much chemo I had, but I counted 15 or 16 blood transfusions during that time. Thankfully, I did not react poorly to the chemo. I don’t remember being sick at all. I usually felt better after getting blood.
In late September, I was told that they found a donor and it was a perfect match. Before the scheduled transplant, I went to the hospital and received heavier chemo for about a week and then I had total body radiation, which I referred to as being microwaved. You sit on a table, clutch your knees, they measure your body, you stay in one position for about 10 minutes, you turn around, and do it again. That was the only time I felt sick after.
I was weak. It’s do-or-die at this point. They scheduled the transplant for the evening of October 11, which was cool because that’s my oldest granddaughter’s birthday and I’ll get my new birthday on the same day. My donor is from Germany. We discovered later that the courier missed the train, so it was delayed. The transplant finally happened a little after midnight on the next day, October 12.
The doctor came in and it was in a small bag, smaller than a typical blood bag. I already had a port in my chest. I suspect the doctor was there in case I had an immediate bad reaction for some reason, which I did not. It’s pretty anticlimactic. You wait for the stem cells to drain out of that bag. After a while, I went to sleep and that was it.
I don’t know how I would’ve felt if this hit me at 29… I’ve had a good life already. If something happens, it’s unfortunate, but at 70, it’s not terrible.
Post-Transplant
I was in the hospital for a month. My wife was with me 24/7. Thank goodness she’s also a nurse, so that helped. Fairly soon, I started taking antibiotics, antifungals, and antivirals. I didn’t have graft versus host disease, except for a rash that we treated and went away.
I was very weak. When I came home, I very slowly got my strength back. I had physical therapy and occupational therapy. I stayed away from other people for a good bit because I had a very immature immune system. I’m still taking various medications.
Renewed Appreciation for Life
I didn’t and don’t wake up every morning saying thank you to God for another day; my wife does. Other times, it will hit me, like when I’m watching my grandson do something, being able to go to a baseball game, or going back to the beach, I would think, “I almost missed this,” and that makes me feel good.
I don’t know how I would’ve felt if this hit me at 29. One of the first times that I felt sorry for myself was when I was getting chemo and a kid next to me learned that he had leukemia a week before. He was around 20 and you know how different and how difficult that must be. I’ve had a good life already. If something happens, it’s unfortunate, but at 70, it’s not terrible.
If you’ve got a caregiver who’s impatient or gets tired easily, that can be a problem. It requires dedication and love. Having a caregiver makes a difference.
I have a renewed appreciation for life. It comes at the weirdest times, but almost every day, something comes to mind and I say to myself, “Oh, I almost missed this.”
We’re planning a vacation for the summer. We already planned a trip to Scotland with our church group. I’ve been in contact with my donor, who was 24 at the time. He recently turned 30 and said that we would have to find each other if I were ever in Europe. We decided to spend a few extra days to go to Germany to meet him and his girlfriend.
The Importance of Having a Care Partner
I hit the jackpot with my caregiver. My wife’s an RN and a retired hospital administrator, so she knew who to call if there was an issue and who to talk to, and was not shy about doing it. There weren’t that many issues, but she also literally stayed in the hospital room with me 24/7, except for one time, but my sister substituted for her.
At home, I couldn’t do much for myself. If you’ve got a caregiver who’s impatient or gets tired easily, that can be a problem. It requires dedication and love. Having a caregiver makes a difference. I don’t know how you could do it without someone, even if they can’t stay 24/7. It’s hard to describe how important it is.
Connect and look for help. Don’t give up.
The Future of the MPN Landscape
It would be great if there could be some treatment that would be as good as a transplant but didn’t require a transplant. White Caucasians have a pretty good chance of finding a good match. If you’re Black or Latin American, there aren’t that many donors. I don’t know if it’s a lack of education or effort to spread the word or how important it is. If there could be something other than a transplant that would work, that would be great.
A lot of work still needs to be done on graft versus host disease. One of the doctors in the team had 2 or 3 transplants himself and had terrible graft versus host disease. A gentleman down the hall from us had terrible mouth sores that made it almost impossible for him to eat or drink. Now, I think that eventually cleared up, but it’s still a difficult time to have to go through. Work needs to be done and an alternative to transplants would be great.
Words of Advice
Have faith. Have faith in yourself, in God, and in your medical team. If you don’t have faith in your medical team, find another one. It’s easy for me to say being in St. Louis because we have a variety of excellent medical facilities around, but there’s help out there.
Finding organizations that will help you find the help you need would be worth looking into. If you’re not happy with your doctor, find another one. Luckily, that’s not been my experience at all. It’s important to connect and look for help. Don’t give up.
Special thanks again to Sobi, Karyohpharm, GSK, and Novartis for their support of our independent patient education content. The Patient Story retains full editorial control.
Shayla was diagnosed with metastatic colorectal cancer at 33 years old after years of experiencing unexplained digestive issues. Initially, symptoms like stomach sensitivity, exhaustion, and food intolerances were attributed to a sensitive stomach. Over time, she sought medical attention, including multiple gastroenterologist consultations but received inconclusive diagnoses. She was diagnosed with celiac disease, but despite cutting out gluten, she continued to feel unwell.
After more months of fatigue, Shayla noticed blood in her stool, which persisted for several weeks. When her husband insisted she seek medical help, a colonoscopy revealed polyps. While initially told that they weren’t cancerous, a biopsy later confirmed that one was malignant. Further tests revealed lesions in her liver and lungs, prompting additional biopsies. The lesions in her lungs were clear, but the cancer had metastasized to her liver, resulting in a stage 4 colorectal cancer diagnosis.
Her treatment plan included four rounds of chemotherapy, followed by a hepatectomy or liver resection to remove 25% of her liver. After the surgery, Shayla began her chemotherapy again, with plans for more rounds to finish her treatment. Although she initially struggled with side effects, such as hot flashes, nausea, and fatigue, her doctors adjusted her treatment plan to help her manage better. However, cold sensitivity, neuropathy, and physical weakness persisted.
Despite these challenges, Shayla remained focused on her healing and recovery, even as the emotional toll of her diagnosis began to weigh on her mental health. She shared that the isolation during recovery and the struggle with seeing her children react to her illness was particularly difficult.
Shayla advocates for others to take their symptoms seriously, stressing the rising rates of colorectal cancer in younger adults. She encourages others to seek second opinions and advocate for themselves if they’re not satisfied with their medical care. Through her experience, she has seen the importance of a strong support network and the need for proactive health care, urging others to catch cancer early to increase treatment success.
Name: Shayla L.
Age at Diagnosis:
33
Diagnosis:
Colorectal Cancer
Staging:
Stage 4
Symptoms:
Stomach sensitivity
Food intolerances
Exhaustion
Blood in stool
Treatments:
Chemotherapy
Surgery: hepatectomy (liver resection)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Jim began experiencing alarming symptoms one day when his head and neck swelled up suddenly due to backed-up blood flow, causing his face to turn purplish and his neck veins to bulge. After the swelling subsided, he was rushed to the ER at the University of Pennsylvania, where initial tests revealed a severe narrowing in his superior vena cava.
Doctors were baffled by his condition. Over four days of hospitalization, various specialists attempted to diagnose the cause of the obstruction, but no clear answer emerged. Even though lymphoma was mentioned early on, it was dismissed because lymphoma typically doesn’t present in veins. The situation grew more critical as the narrowing worsened, leading to a second hospitalization, but still, no one could identify the cause.
As hope dwindled, a heart and lung transplant surgeon proposed an innovative surgery: removing the entire superior vena cava and replacing it with a graft made from pig intestine. Jim underwent the surgery, which was more complicated than expected due to the extent of the tumor. The pathology report later revealed that the obstruction was caused by diffuse large B-cell lymphoma.
Following the surgery, Jim faced additional challenges as his surgical site began to narrow again due to natural healing and scarring. The doctors debated whether to insert a stent to keep the vein open, but Jim opted to endure the discomfort, trusting that his body would heal over time and develop new collateral veins. After weeks of uncertainty, he started chemotherapy to address the lymphoma.
Name: Jim Z.
Age at Diagnosis:
41
Diagnosis:
Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms:
Sudden and severe head and neck swelling
Purplish facial discoloration
Bulging neck veins
Treatments:
Surgery: resection and reconstruction of the superior vena cava
Chemotherapy
Thank you to Genmab for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Suddenly, my head and neck began to swell up… if this was going to continue at the rate it was going, I wasn’t going to be around for much longer.
Introduction
My wife Vanna and I are parents to two terrific boys, Nikitas and Victor. We live in the suburbs of Philadelphia, where I also teach. I’m a high school English teacher and a writer. I also paint and coach Little League.
How the Symptoms Started
I was getting ready to go to a Phillies game when, suddenly, my head and neck began to swell up with backed-up blood flow. It was so alarming. I looked in the mirror and saw my head puffing up like a balloon filling up with water.
I called out to my wife, who came rushing and immediately saw me. My father is a doctor, so I called him. It was pointless to call 911 because if this was going to continue at the rate it was going, I wasn’t going to be around for much longer.
My wife and I stared at myself in the mirror while my father very amazingly and gently told me to breathe. This went on for two or three minutes. You can imagine the swelling and purplish appearance of my face and neck with neck veins bulging
As dramatically as it started, it stopped. My blood flow reached equilibrium and I began to feel normal. I even joked that we were going to go off to the Phillies game after that. My father said no and that I was going to the emergency room.
She pointed to the narrowing and said, ‘We don’t know what this is, but it could be fatal.’
Going to the Emergency Room
When I went to the ER, I appeared normal, but when I described what happened to me, I could tell from their reaction that something serious was going on. In a matter of hours, I had blood draws and X-rays taken. I waited in a room very patiently and watched the entire Phillies game on the TV.
Around midnight, I went to the front desk and asked the attending doctor if she was as surprised as I was that we still hadn’t heard any results. She looked at me with tender eyes and said she would see me in a minute.
She came into my room, sat next to me, held a pretty fuzzy X-ray image up, and pointed to what looked like an hourglass. She pointed to the narrowing and said, “We don’t know what this is, but it could be fatal.” Those were the first words that I heard from a doctor about whatever was going on inside of me.
As shocking as that sounds, it wasn’t entirely surprising because of what had happened to me. The force of the earlier incident of whatever seemed to be obstructing my blood flow was stunning. I understood that it was game on.
A couple of hours later, I was getting an MRI. I had never gotten an MRI before and it’s not something anyone feels comfortable doing. As claustrophobic as I am, it didn’t even occur to me because it was my first time and I didn’t know any better, so I just lay there in that tube. I was in survival mode and if this is what’s necessary to get to the bottom of things, I can do this. I went back to my father’s advice to breathe and tried to stay calm.
The irony is that every department had somebody come to see me to speculate on what might be ailing me—every department except oncology.
What the Doctors Could See From the Scans
There was some blockage or obstruction in my superior vena cava, the main vein that descends to the heart and the last and most crucial vessel that brings blood back to the heart. In retrospect, that would explain why all of a sudden, I had backed up blood in my head and neck. At some point, the blood managed to get through the superior vena cava, so my blood flow returned to normal.
I was admitted to the hospital for four days. The cardiovascular surgeon was appointed as the head of my team. A young attending doctor was trying to round up the best people. At one point, he told me, “You’re the talk of the hospital. Everybody wants to be the guy who figures out what’s going on in your chest, but we don’t know.”
The irony is that every department had somebody come to see me to speculate on what might be ailing me—every department except oncology. Early on, the theory was cancer or lymphoma, but it does not present this way. It’s rarely in the chest and never in veins and this was clearly in a vein. Six months later, my oncologist told me, “We do find lymphoma in veins occasionally, although rarely and only in an autopsy,” so this was not in anybody’s working diagnosis and it was disqualified almost from the get-go.
The one guy who might be able to do something would be the interventional radiologist to do a biopsy, but he was determined to avoid doing that because he would have to put a needle into my superior vena cava. Not only was there some obstruction in there, but it appeared to be in the wall of the vein. He explained how he would have to pierce a needle through the wall of the vein and somehow extract a piece of whatever was in there. He said, “I’m not doing it. It would be catastrophic and I don’t want to kill you.”
We saw a narrowing so severe that it was hard to imagine how any blood was getting through to my heart.
After four days, a cardiac surgeon proposed to open up my chest completely to get to the vein, but we were still left with a catch-22. The interventional radiologist said, “Even if I had your superior vena cava in the palm of my hand and my best needle in my other, I would not dare try to get a piece out of the wall of your vein to do a biopsy.” We were stuck. I wasn’t having dramatic inflamed symptoms but I was still uncomfortable.
On day four, a cardiovascular surgeon came in and said, “It may be some idiopathic thing that we can’t explain. There are medical mysteries. We’re going to send you home without a diagnosis. If you have another flare-up, if you continue to have worsening symptoms, we’ll have you come back in a month and we’ll do more imaging.”
I left and I was not confident because you feel the sensations in your own body. I was hopeful, but my gut said something was happening inside of me.
Symptoms Returned After Leaving the Hospital
Over the next few days, it got worse. It was backing up. Again, with the benefit of hindsight, what was happening was the tumor was growing and the narrowing was becoming more severe. The blood flow to my heart was decreasing by the day.
I packed my bag. My parents happened to be at our townhouse that afternoon. I showed up in the doorway and said we had to go back. We went back to the hospital and I was readmitted.
The cardiovascular surgeon and the interventional radiologist decided that I was going to get a venogram, where they put the dye into the bloodstream to get a more vivid image. We saw a narrowing so severe that it was hard to imagine how any blood was getting through to my heart.
It was supposed to be 15 mm at its maximum and it was narrowed down to about 3 mm — that’s how much blood flow was going to my heart.
Three or four doctors were looking at the gigantic triptych of images that showed my superior vena cava and the narrowing that came nearly closed and then opened again. They shook their heads and said, “We don’t know what this is.” The cardiovascular surgeon came in and somberly said, “I’m sorry. We’ve tried to do everything and there’s nothing left that we can do.” We all knew what that meant.
My father, who’s a doctor and is always inquisitive and never at a loss for hope, was quiet. That gives you some indication of all the conversations, research, and investigations that had gone on for the last 10 days had come to this moment and we accepted it.
I hugged my wife. My parents went over to the window and I went over and hugged them. Very strangely, I was more equipped to handle the news than anybody. I had been living with that first thought on the night I went to the ER and was told this could be fatal. We didn’t know what this was, so I had been preparing for this possibility.
When I hugged my dad, he said, “I’m sorry, son,” and I said, “I’m sorry, dad,” and the next thing that he said was, “Tomorrow, more research.” That was a profoundly hopeful, illogical moment, but it shows you the balance of this man of science who, even after all of that, was still determined that there might be something, but he was also my dad, going through this with me and all of us.
Not Giving Up Hope
A couple of hours passed and there was a new young attending doctor on call that day. I said to her in passing, “I would love to sit with the head of radiology and be able to look at all the images from the first day to the most recent venogram.” A lot of imaging had been done and I was trying to understand the anatomy of the superior vena cava and the brachiocephalic veins that go up into the jugular veins. I learned all this anatomy and I wanted to understand it better.
I was looking at these spectacular 3D images. It was supposed to be 15 mm at its maximum and it was narrowed down to about 3 mm — that’s how much blood flow was going to my heart.
The doctors looked at each other and shook their heads. The interventional radiologist was convinced more than ever that he wasn’t going to stick a needle in there. They both said, “It’s got to come out since we can’t get to it.” But nobody knew what the surgical strategy would be.
‘I’ve got an idea. I propose that I open you up and take out your entire superior vena cava and replace it with a graft.’
Six hours or so later, a man I had never seen before walked in. He’s a heart and lung transplant surgeon at UPenn. He said, “I know you don’t need a heart or lung transplant, but I’ve got an idea. I propose that I open you up and take out your entire superior vena cava and replace it with a graft that I’m going to craft out of this material that I’ve been using to patch hearts and lungs. I’ll make a vein for you and attach it at both ends. I think I can do it.”
My wife and I were alone with him, stunned and giddy, happy and amazed, and slightly skeptical. My wife Vanna ran to the hallway, grabbed my parents, brought them back in, and said, “Repeat what you just said.”
We listened to him describe the surgery that he had planned. He had been using an organic material made out of pig intestine. He’d been using it to patch hearts and lungs, but he thought he could make a cylinder out of it and make a vein that would replace my superior vena cava. He said he would do this. I said, “So there’s still hope?” And he said, “There’s always hope.”
Surgery Day
I went into surgery feeling good and confident. I woke up on the other side and it worked. When the surgeon came to visit, he said, “It ended up being a little more complicated than we were anticipating. It wasn’t just a tube after all.” He described it as black muck that he’d never seen anything like before. It went up into the brachiocephalic vein. He took more of that material and had to make a Y shape, did the surgery, and attached my superior vena cava to the brachiocephalic vein, which is even narrower. A brilliant surgery to say the least.
They sent the whole thing off to pathology to find out what it was all along. Five days later, while I was still in the hospital recovering, a young man from hematology came to see me and said, “You’ve got diffuse large B-cell lymphoma.” Everybody’s mind was blown because it defied all expectations.
We would give the graft a month to heal and then start chemo. Fortunately, I was able to get the chemo through a vein in my arm.
Doctors Couldn’t Believe It Was Cancer
My oncologist, one of the great lymphoma doctors, said he had never seen anything like it. In a month, I started chemotherapy and that’s when I met my oncologist.
That was the first time I ever heard about cancer or lymphoma. But I had a graft in my chest that needed three months to heal. That was the plan.
My surgeon said, “I don’t know what chemotherapy is going to do to Jim’s graft made out of pig intestine and we’re certainly not going to stick a port in his chest into his superior vena cava. Hopefully, the chemo will go well into a vein in his arm.”
On the other hand, my oncologist, said, “We’re not waiting three months for this graft to heal. We called the company that makes the graft and asked how chemotherapy interacts with the material. They had no idea.
The doctors compromised and agreed that we would give the graft a month to heal and then start chemo. Fortunately, I was able to get the chemo through a vein in my arm and we went from there.
Despite everybody’s certainty that lymphoma doesn’t present that way, a lymphoma tumor was growing inside the wall of the vein of my superior vena cava.
The obstruction that was originally in my superior vena cava was a lymphoma tumor. Despite everybody’s certainty that lymphoma doesn’t present that way, a lymphoma tumor was growing inside the wall of the vein of my superior vena cava.
I tolerated some great discomfort but in time, I trusted that the body would do its magic and heal itself, and other tributaries would form as these guys described to me. Presumably, that’s what happened because I’ve had scans since and I still have this dramatic narrowing. Even though you can’t see in any of these images that other collateral veins have formed, everybody thinks that the only scientific explanation is that’s what happened.
I am sure I am one of the very rare cases where the cancer and the chemotherapy were always secondary to the healing of the surgery.
Cancer Responded Well to Chemotherapy
While it was an aggressive cancer lymphoma, it responded well to chemotherapy. These were all very promising signs and that gave me optimism. As long as I could withstand the symptoms, my body tolerated the chemotherapy, and the healing could continue, we’d get to the other side of this and hopefully, the chemo cocktail would do its work.
I maybe had six rounds of chemo every three weeks. I had one reasonably tolerable week and one week of debilitating nausea. But all the while, I was also recovering from surgery.
By the sixth round, I was in remission. There was no lymphoma showing up on the PET scans.
When we got to the fourth round or so, I got tested and it appeared that there was no growth. Eventually, by the sixth round, I was in remission. There was no lymphoma showing up on the PET scans.
At the time, I couldn’t wait to get back to normal. There was only one marking period left in the year. I teach English and writing to seniors and wanted to be in this atmosphere of dynamic conversation, kids, and vitality.
When I came back at the beginning of April, my colleagues were thinking, “Are you crazy? Take the year off at this point and see you in September.” But I couldn’t have been happier to be back. My hair was growing back. I was still bald, but it felt great to be back.
How I Survived
As a patient, I was the unluckiest guy on the planet because nobody could detect what I had. I reached a low point where doctors told me there was nothing else that could be done. Then the surgeon said the magic words: there’s always hope.
I take that with me into everything that I do. Even after all seems lost, you don’t know what you don’t know. You’ve got to stay awake for every moment of your life because if you’re full of anxiety and despair, you might not see an opportunity that could point you down a positive path to good health.
I was fortunate to grow up with a doctor as a father and live in a city with institutions, like the University of Pennsylvania. I had faith in the doctors and the institution, and I don’t take any of that for granted. It’s easy for me to tell others to have faith and hope because I was born with that.
Keep the faith. Stay hopeful. Be your best self-advocate.
What came from my experience as the son of a doctor was confidence in having conversations with my doctors, the expectation that they were listening to me, and that they wanted to hear my story because that’s the kind of doctor my dad was.
My dad was a family doctor and he made sure to make eye contact to hear the patient’s story and to be there emotionally not just clinically. Again, it’s easy for me to say to a patient who might be going through these things who didn’t have the good fortune that I had with all these other lucky things that I had going for me.
Words of Advice
Keep the faith. Stay hopeful. Be your best self-advocate because you never know and the doctors don’t always know either. They need to hear your story.
Special thanks again to Genmab for its support of our independent patient education content. The Patient Story retains full editorial control.
Willow’s Rare Grade 1, Stage 2.5 Pelvic Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Willow was diagnosed with a rare stage 3 pelvic cancer that was a combination of endometrial and cervical cancer. Initially, she had persistent flu-like symptoms, fatigue, a scratchy throat, and chills. Despite requesting cancer tests from her gynecologist, her concerns were dismissed as symptoms of aging. Eventually, more alarming symptoms like post-orgasm pain, heavy bleeding, and severe cramping led her to fabricate symptoms to expedite care because she couldn’t find answers. Multiple tests yielded no results until a naturopathic gynecologist ordered advanced imaging, which revealed a hidden tumor masked by scar tissue from her cesarean section nine years prior.
The diagnosis confirmed she was on the brink of stage 3 pelvic cancer. Willow underwent a radical hysterectomy, followed by six weeks of radiation and chemotherapy. Despite the rigorous treatments, she felt fortunate to have the tumor removed first, which alleviated her symptoms. Recovery, however, was daunting due to the internal nature of the surgery and the emotional toll of transitioning from intensive care to self-reliance. Post-treatment, Willow suffered from angioedema and the abrupt onset of menopause, leading to brain fog, brittle bones, and balance issues, causing several falls and broken bones.
Despite these challenges, Willow adopted hormone replacement therapy (HRT), which significantly improved her quality of life. She emphasized the importance of conventional cancer treatments, advocating against relying solely on holistic methods. During her treatment, Willow reached out to her community and received crucial support.
Her identity transformed post-cancer; she embraced a fearless, purpose-driven life. Willow’s candid discussion about intimacy post-surgery highlighted that recovery and fulfilling sex life are possible with proper care, including pelvic floor therapy. She encouraged others to pursue their passions without waiting for life-threatening circumstances, emphasizing that cancer is not a death sentence but a call to fully engage with life.
Name: Willow B.
Diagnosis:
Pelvic Cancer (Endometrial-Cervical Hybrid)
Staging:
Grade 1, Stage 2.5
Symptoms:
Persistent fever-like chills
Scratchy throat
Fatigue
Post-orgasm pain
Heavy bleeding
Severe cramping
Treatments:
Surgery: radical hysterectomy
Radiation
Chemotherapy
Hormone replacement therapy (HRT)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Heavy periods, abnormal bleeding, large blood clots, severe cramping, severe abdominal pain, pain radiating down the left leg, loss of mobility in the left leg, loss of appetite, fatigue
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies
Demystifying Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies
Hosted by The Patient Story
Take part in an engaging and informative webinar featuring Dr. Peter Martin, a leading lymphoma expert, to discuss the latest advancements in follicular lymphoma treatment. We will discuss precision medicine and emerging therapies, while addressing how to manage side effects and improve quality of life. This session is designed to empower patients with practical knowledge and support as they navigate their diagnosis.
Dr. Peter Martin, a leading lymphoma expert at Weill Cornell Medicine, Laurie Adami, a follicular lymphoma patient and advocate, and Tiffany Drummond, cancer advocate and clinical researcher, discuss the latest advancements in follicular lymphoma treatment. This conversation talks about precision medicine and emerging therapies, addressing how to manage side effects and improve quality of life, and is designed to empower patients with practical knowledge and support as they navigate their diagnosis.
Understand current and emerging options, including targeted therapies and bispecific antibodies, and how they address treatment challenges. Gain actionable strategies to manage side effects and improve quality of life. Explore how precision medicine tailors treatment plans to individual needs, including chemo-free options. Get answers to common and critical questions about follicular lymphoma. Be part of a conversation that brings the patient experience front and center to inspire hope and informed decision-making.
Thank you to The Leukemia & Lymphoma Society for their partnership. The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a care partner began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding resources, support, and shared experiences, and now I am committed to helping others avoid similar difficulties, no matter the condition.
At The Patient Story, we create programs to help you figure out what comes next. Think of us as your go-to guide for navigating not only the cancer journey but your overall health journey. From diagnosis to treatment, we have you covered with real-life patient stories and educational programs with subject matter experts and inspirational patient advocates and guests. I genuinely am your personal cheerleader, here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.
The Patient Story retains full editorial control over all content as always. We also thank all of our promotional partners for their support. It is because of you our programming reaches the audience who needs it. I hope you’ll find this program helpful, but please keep in mind that the information provided is not a substitute for medical advice.
I had access to great cancer centers. I went to four different big cancer centers and that’s where I was able to join clinical trials.
Tiffany: I have the pleasure of interviewing Dr. Peter Martin and it so happens that we have much more in common than you might think. I will also be speaking with a follicular lymphoma patient, Laurie Adami. It’s so important to get a patient’s perspective and I’m sure her experience will resonate with you and your loved ones. Let’s learn about Laurie’s journey before deep diving into the latest treatment options.
Laurie Adami: I was diagnosed in 2006. My son was in kindergarten. There was one treatment I did right away. We thought I was in remission, so I merrily went back to work, which entailed traveling internationally. Three months later, my cancer was back on the first follow-up scan. That prompted 12 years of treatment. From 2006 to 2018, I was in continuous treatment and underwent seven different lines of therapy, including three clinical trials.
The first six treatments didn’t work, but thankfully, the seventh line of treatment did. I live in Los Angeles, so I had access to great cancer centers. I went to four different big cancer centers and that’s where I was able to join clinical trials.
Dr. Peter Martin, Hematologist-Oncologist
Tiffany: Dr. Peter Martin serves as the professor of medicine and chief of the lymphoma program at Weill Cornell Medicine. He is a hematologist-oncologist who specializes in caring for patients with lymphoma at NewYork-Presbyterian Hospital. His research focus, which is very dear to my heart, is on clinical investigation of new and promising therapies. Dr. Martin, how are you doing today?
Dr. Peter Martin: It’s great to see you again, Tiffany. I don’t know if everybody else knows this, but we worked together long ago.
Tiffany: You could say how long ago. It was about 15 years ago. I used to call him Peter, that’s how far we’ve come. I’m glad to see that we both have stayed the course, which is fighting cancer and finding a cure. I know that you made great strides, so thank you for being here.
[Follicular lymphoma] typically grows slowly over months, years, or decades, and that’s why we call it indolent, which means lazy.
Dr. Peter Martin
What is Follicular Lymphoma?
Tiffany: I’m a patient advocate for many types of cancer, but for those who aren’t as familiar, can you break down follicular lymphoma? We know that it’s considered an indolent lymphoma. Can you walk us through that characteristic? What makes follicular lymphoma distinct from more common types of non-Hodgkin lymphoma, such as DLBCL or diffuse large B-cell lymphoma?
Dr. Martin: Follicular lymphoma is pretty common from the lymphoma perspective but not common from a cancer perspective. In the United States, about 20,000 people every year will be diagnosed with follicular lymphoma. Depending on your perspective, there are up to 130 different kinds of lymphoma, which is hard to keep track of. Each subtype is a little bit different biologically in how they’re defined and how they behave clinically.
Follicular lymphoma is based on the way it looks under the microscope. They look like little follicles in the lymph node. It typically grows slowly over months, years, or decades, and that’s why we call it indolent, which means lazy. I like the word lazy because it’s a lymphoma that can’t be bothered to cause problems.
Once diagnosed, we’ll often talk about the goal of treatment, which is to help somebody live a life that’s as close to the life they would live without lymphoma. It hangs around for a long time and we keep managing it and kicking the can down the road.
How is Follicular Lymphoma Diagnosed?
Tiffany: If someone is living with follicular lymphoma for years or even decades, how is it diagnosed? Do they come in for some other type of symptom that usually makes them get referred to a specialist? How does that work for a patient who doesn’t even know that they have it?
Dr. Martin: It can vary a little bit. Ultimately, to diagnose follicular lymphoma, you have to look at it under the microscope. The word lymphoma means tumors of the lymph nodes, so most of the time when we meet somebody with follicular lymphoma, they’ll have an enlarged lymph node. Typically, it’s a painless, enlarged lymph node in the neck, armpit, or groin.
It might be picked up accidentally while getting tested for other reasons, which is pretty common because follicular lymphoma is often asymptomatic. Although it’s called lymphoma, sometimes it’s not in a lymph node. It might be present in the bone marrow or some other organ, like the gastrointestinal tract or the skin. Ultimately, though, somebody has to look at it under the microscope and that’s how we make the diagnosis.
All of my doctors dismissed me. I would specifically tell them, ‘I’m very worried I have lymphoma,’ and they would say, ‘Your bloodwork is all normal, so you don’t have cancer.’
Laurie Adami
Symptoms of Follicular Lymphoma
Tiffany: Laurie, did you experience any symptoms before your diagnosis or was it something you noticed but didn’t read into it enough to get it checked right away?
Laurie: When my son was three years old, I started to get frequent sinus infections and couldn’t get rid of them. I also developed a dry eye. I was a long-time contact lens wearer and suddenly, I couldn’t wear my right contact lens. I was very tired. I had a lymph node on my neck that was concerning me and I felt something in my abdomen.
All of my doctors dismissed me. I would specifically tell them, “I’m very worried I have lymphoma,” and they would say, “Your bloodwork is all normal, so you don’t have cancer.” I told my husband that they wouldn’t listen to me and he didn’t believe me, so I took him to my appointments and he couldn’t believe how I was dismissed. He was mortified. This went on for three years.
I wanted to believe these doctors. I wanted to believe that allergies were causing these sinus infections. I was also at the age where I could be starting to get perimenopausal symptoms, so my symptoms were attributed to my hormones. It was aggravating.
I kept feeling worse and worse. The exhaustion was incredible. One of the doctors I saw said, “Laurie, you’re president of a software company. You’re traveling internationally. You’re traveling a week a month. You’re running a household. You have a young boy. I’m exhausted just listening to what you do.”
Finally, someone I knew referred me to a diagnostician who took me seriously. I went in to see him and explained everything. I said, “People think this node is from allergies.” He said, “Did you get tested for allergies?” I said, “Yeah, and there was nothing.” He said, “Okay, that doesn’t make sense then.”
I explained the possibility of a hernia and he said, “It could be, but Laurie, we don’t guess. We have CT machines and I’m going to send you to a hernia specialist. We’re going to do imaging.” That week, they imaged me and it was scary because I was supposed to go in for a simple imaging. They expected to find a hernia and I wasn’t supposed to have contrast. Suddenly, this lady brought in the bottles of contrast because they had to get a better image. My heart began to sink as I was sitting there.
Two days later, on Good Friday of 2006, the doctor’s office called and said I needed to come in. My mother and brother were in town for the Easter weekend, but they didn’t tell me to bring anyone, so I went by myself and they told me I had either lymphoma or a mesenchymal tumor. The imaging also detected lesions on my lungs, so he said, “You may also have lung cancer.” That’s when I found out that I had some type of cancer.
I knew a little bit about lymphoma because when I had this node and I put in my symptoms online, lymphoma kept coming up. But 90% of lymphoma patients are diagnosed at stage 4 because most patients don’t have symptoms. I did, but I didn’t have anybody listening to me, so they dismissed my concerns.
As it turned out, it was good that they didn’t listen to me because the only treatment that existed at the time was a monoclonal antibody, multi-chemo, prednisone treatment. If I had it earlier, it wouldn’t have worked and I would have had nothing else.
I had autologous stem cell transplant as an option, but it was not a good option, especially if you relapse after the first line of chemo and monoclonal antibody treatment. In a way, it ended up being a blessing because, by the time they were pushing me to do the transplant, I managed to find a trial of a histone deacetylase (HDAC) inhibitor, which is what I did as my second line of therapy.
Dr. Martin: Oftentimes, somebody will say, “I’ve had this lump for five years and finally my friend told me that I should have it looked at.” That’s a testament to how it behaves. It hangs around for a long time, so people often get accustomed to it being there before they decide to bring it to somebody’s attention.
Traditional Treatments for Follicular Lymphoma
Tiffany: Before we get into the novel approaches, can you walk me through the traditional treatments for follicular lymphoma? What factors determine a more or less aggressive approach in your practice?
Dr. Martin: The job of a hematologist-oncologist is to learn as much as we can about the lymphoma and that’s changing all the time as we get more sophisticated. We recognize that this lymphoma isn’t happening in a petri dish in a lab somewhere; it’s happening in a real live person, so we have to learn as much as we can about that person. That includes not only their medical issues but also all of the things that are important to them. What are their values? What is their support network like? There are 8 billion of us on the planet and we’re all different, so there’s even more heterogeneity among people than there is amongst the 130 different lymphomas.
We bring all of that information together and come up with a plan that makes the most sense for that person. Treatments are constantly evolving and we have new treatments available today that we didn’t have in the past. In general, the goal of treatment is to try to give somebody the life that’s the closest to the life that they would have if they didn’t have lymphoma.
We have to learn as much as we can about that person. That includes not only their medical issues but also all of the things that are important to them.
Dr. Peter Martin
Approaches can vary. In some cases, you say, “Look, this is not causing you any problems. It’s not going to cause problems hopefully for a long time — on average, multiple years — and so we watch it and it sits there.” That can be a little bit counterintuitive. In the Western world, you want to catch and deal with cancers early. That’s certainly the case for breast cancer, lung cancer, or colon cancer, so the initial discussion around follicular lymphoma can be a little bit awkward sometimes. You say, “Oh, great. No problem. Let’s do nothing about it.” But it’s a proven strategy to help people live a good quality of life without dealing with any of the side effects of treatment.
On the other end of the extreme, we might propose using more aggressive therapies, including chemotherapy if we need to shrink something quickly and help them feel better. There are options in the middle where we use immunotherapies that may shrink the tumor, may help somebody to feel better, and may prolong the time between that and other kinds of therapies by months or years. There are vast options and more new treatments are being approved.
Bispecific Antibodies for Treatment of Relapsed/Refractory Follicular Lymphoma
Tiffany: Let’s talk about some of the data that came out of the 66th American Society of Hematology (ASH) annual meeting. Bispecific antibodies are changing the way that we look at and treat cancer, especially when it comes to immunotherapy. What benefit may they contribute to our relapsed/refractory follicular lymphoma patients?
Dr. Martin: Bispecific antibodies are a type of monoclonal antibodies. Antibodies are proteins that our immune system makes to fight against bacteria. A few decades ago, clever people figured out how to make antibodies that would fight not against infections but against cancer. That moved quickly from the lab to people and, for the past 25 years, has revolutionized the way many cancers are managed. It started with lymphoma. We’ve been leading the way for a long time.
Bispecific antibodies are a natural evolution of trying to come up with ways to make this kind of immunotherapy work better. They’re very cleverly engineered. They bind to tumor cells the same way an antibody would bind to a virus or bacteria, but in addition, they also bind to other parts of our immune system called T cells and they activate them. When those T cells are activated, they secrete chemicals called granzymes and perforins that poke holes in cancer cells and cause them to die. This is a clever way of using our immune system to kill cancer cells and it does it remarkably effectively.
The vast majority of people will have not only responses to this treatment, meaning the tumor shrinks, but in many, if not most, cases, the tumor will disappear on a CT scan. It might be completely gone — we’ll find out as the years go by — but it disappears on a CT scan in a lot of people.
Bispecific antibodies are attractive in that it’s a non-chemotherapy approach and it’s a proven form of immunotherapy. It’s an evolution of the kinds of immunotherapies that we’ve been using in the past and it’s more effective.
The other thing that’s nice about it is that it’s off the shelf, so you order it from a pharmacy. It doesn’t have to be engineered specifically for each patient the way something called chimeric antigen receptor T cells or CAR T-cells have to be.
I did a monthly infusion of a third line monoclonal antibody… but as soon as I stopped, it came back, so it was a race against time.
Laurie Adami
Experience with CAR T-cell Therapy
Tiffany: Laurie, I believe you’re familiar with CAR T-cell therapy. How was that experience and where are you currently in your cancer journey? Are you also familiar with bispecific antibodies? I would love to get your perspective on this immunotherapy versus CAR T-cell therapy.
Laurie: I heard about CAR T-cell therapy six years before I could get it. I heard about it in 2012 when I attended an LLS event where they showed Emily Whitehead’s film. I went to my college that week and asked about it because I didn’t know about CAR T-cell therapy. He said, “They’re not trying it for follicular lymphoma. They’re doing it for more aggressive tumors. We have to wait. You’re on a PI3 kinase inhibitor. We’re going to ride this horse.” That took me through 2016 when the cancer finally outsmarted that pill.
A new monoclonal antibody had been approved. It was a nine-month course, so I did a monthly infusion of a third-line monoclonal antibody, obinutuzumab. It immediately started shrinking my tumors again, but as soon as I stopped, it came back, so it was a race against time.
In 2018, my tumors were huge. While I was out hiking in April, my oncologist called and said, “We finally got the trial for follicular lymphoma. It’s going to open at UCLA. We’re going to have five patients enrolled in the first cohort and you will be patient number one.”
When you’re in a clinical trial, you have to review the paperwork to sign. It discloses all the side effects of patients in the phase 1 study. This was a phase 2 study, so it wasn’t completely bleeding edge. Then they have to do biopsies and imaging. They had to make sure I didn’t have anything in my brain. They weren’t allowing patients with central nervous system involvement to get CAR T-cell therapy because they didn’t know how it would work and what it would do. Now they know, so they do it for people with involvement in the central nervous system.
It was amazing because, within days, the tumors were shrinking.
Laurie Adami
I had a sinus infection again because my cancer was coming back. My oncologist said, “You can’t get CAR T-cell therapy with an active infection,” so I went to my ear, nose, and throat specialist. I explained, “I need to get this treatment, but I can’t do it with an active infection.” He called his scheduler and said, “Clear the schedule tomorrow. I have an urgent patient.” They operated on me the following day and it ended up being a major surgery with general anesthesia because there were so many blockages everywhere. He cleaned me out and got rid of the sinus infection so I was good to go.
About a month before you get your cells back, they do apheresis. They harvest your T cells. It’s a very easy process that takes half a day outpatient. The courier ships your bag to the CAR T company, which happens to be down the highway in LA. I remember the courier came to pick it up in the apheresis center and I said, “Do not let my cells fall out on the freeway. Please make sure the van door is tightly sealed.” He said, “Don’t worry. We’ll get it there, Laurie. No problem.”
CAR T-cell therapy is about an 18-day process. They shaved off a couple of days and shortened it even more, so the patient didn’t have to wait that long. They take your cells, put the target on them, and grow them in the lab. They harvested about a million cells from me and after they became CAR T cells, there were a billion cells that would get infused.
Before you get your CAR T cells, you go through lymphodepleting chemotherapy, which is chemo light compared to the 18 cycles that I had. It makes room in your bloodstream for you to get your CAR T cells back and gives them room to expand. After three days of lymphodepleting, you get the cells back on day zero, your CAR T birthday. It was amazing because, within days, the tumors were shrinking.
FDA-Approved Bispecific Antibodies for Follicular Lymphoma
Tiffany: Are bispecific antibodies available to patients outside of a clinical trial? Is there anything we can use now straight from a pharmacy without having to go to our investigational one?
Dr. Martin: Two bispecific antibodies are approved for follicular lymphoma: mosunetuzumab and epcoritamab. There probably will be a third one very soon called odronextamab. They’re all pretty similar in terms of how they work and the proteins they target on the surface of the B cells.
There are more coming that we will continue to see in lymphoma and across all cancers. They’re all administered in the clinic or the hospital, so these are not pills that you take at home the way a lot of cancer therapy has transitioned. They’re administered either through an intravenous injection or a subcutaneous injection.
Why are Bispecific Antibodies Administered in the Clinic or Hospital?
Tiffany: Is there a reason for that? Is it because we want to watch for any side effects immediately or is it because of the toxicity and potency of the drug itself?
Dr. Martin: A little bit of both. These are big proteins. They have to be administered by needle because they have to bypass the gastrointestinal tract.
There are some side effects. The side effects that somebody might experience during the infusion are minimal. That said, somewhere in the range of hours to even a couple of days after the treatment, there can be cytokine release syndrome, which happens in up to a third of patients getting these antibodies.
Cytokine release syndrome sounds complicated, but… it’s very manageable.
Dr. Peter Martin
Cytokine release syndrome sounds complicated, but it’s what I described. T cells secrete these chemicals, the same chemicals you experience when you have an infection, including fever, feeling rundown, muscle aches, and what you feel when you have the flu. But in some cases, it can be a little bit more severe. Not very common, but it can happen. We’re often able to manage it with acetaminophen. Sometimes we have to use steroids, like dexamethasone, and rarely do we even have to use other medications.
Because of that, there’s very careful preparation at the facility level, the physician and nursing level, and the patient and caregiver level. It’s all about preparation, helping people to know what to recognize and what to do if something like that happens. It’s very manageable, but it’s a little bit more complicated than taking a pill.
Side Effects of Bispecific Antibodies
Tiffany: Patients are concerned about side effects in general and we know when it comes to cancer, a lot of these drugs are toxic, even though we’ve drastically reduced that over time. In your experience, how do bispecific antibodies differ from traditional chemotherapy and CAR T-cell therapy in terms of side effects? Are they more severe, less severe, or not as long? And does the impact on quality of life determine which avenue they want to take for their treatment?
Dr. Martin: It’s not such a straightforward question to answer because everybody’s different and everybody’s situation is different. Where better-tolerated treatments might be appropriate for one person, more aggressive treatments with more side effects might be appropriate for another person. In most cases, we have options among all of these and oftentimes, there are no wrong or right answers. We try to pick one, but in some cases, we’re driven to say this is the right answer. It’s the job of the whole team — the patient, the caregiver, the physician — to try to pick the right treatment.
Where better-tolerated treatments might be appropriate for one person, more aggressive treatments with more side effects might be appropriate for another.
Dr. Peter Martin
Bispecific antibodies are straightforward in that they can be administered in an outpatient setting or at least partly in an outpatient setting. They don’t cause a lot of the side effects of traditional chemotherapy, like hair loss and nausea, which aren’t major issues with a lot of chemotherapy that we use, but we’re understandably scared of them. Hair loss is a particularly interesting one in that it’s a signal to the rest of the world about something you’re undergoing privately. It tells them publicly that something’s going on, so I understand why that’s not attractive.
Personal Experience with Side Effects
Tiffany: It’s important to get a patient’s perspective regarding side effects. Laurie, can you give us an overview of your experience with side effects? Were there any that you found particularly taxing on you or that affected your quality of life? Were you able to manage your symptoms relatively well?
Laurie: It was a mixed bag. With the first chemo, I lost my hair and got mouth sores. With the second treatment, which was a targeted therapy, I was very, very fatigued. I also lost my hair. They told me that it wasn’t from the trial drug, but when I dug into it, I saw a very small percentage of patients lost their hair.
White counts typically would get depleted, which made me prone to getting infection… so I was a real early adapter of mask-wearing.
Laurie Adami
My fourth treatment was radioimmunotherapy and I had very, very low counts for a long time. My platelets dropped. I never had to get an infusion of platelets, but I had to go in every day to get it checked. I had to be very careful not to fall because I had no clotting ability with low platelets.
White counts typically would get depleted, which made me prone to infections, so I had to be careful. When I went back to work after my first chemo treatment in 2006 and had to start traveling again, I asked my oncologist, “Is it okay if I travel to New York, Boston, London, etc.?” She said, “Yes, but you have to wear a mask,” so I was a real early adapter of mask-wearing.
Precision Medicine as an Approach to Follicular Lymphoma
Tiffany: Something that was also talked about at ASH (American Society of Hematology annual meeting) in general is the idea of precision medicine and how it’s a relatively new approach to cancer treatment. Is precision medicine being used as an approach to follicular lymphoma? What are your thoughts on precision medicine?
Dr. Martin: It depends how much of a fan of science fiction you are. To some degree, we’ve always practiced precision medicine. What do I know about this lymphoma? What do I know about this person? What do I know about all of the different treatment options? How do I put it all together?
Over time, treatments are becoming more specific in some ways, so you can apply them under certain circumstances. Our ability to understand more about cancer changes with new technologies. We’ve always been trying to personalize medicine in the sense of sequencing the entire genome of a cancer cell and saying this is the right treatment for you according to lab testing, but we’re not there yet for follicular lymphoma.
Over time, treatments are becoming more specific in some ways, so you can apply them under certain circumstances.
Dr. Peter Martin
There’s one treatment, a pill called tazemetostat, which has modest activity but is generally well-tolerated. It’s an inhibitor of an enzyme called EZH2, which is mutated in about 20% of people with follicular lymphoma. It’s approved for the treatment of people with mutated EZH2 enzyme, but it’s also approved for people with wild-type unmutated EZH2 if they don’t have other treatment options. Realistically, it works reasonably well in both groups, so it’s a precision medicine approach, but you don’t necessarily have to have the mutation to use it. That’s the closest we have right now, but this is coming. It will continue to change and there are other examples where we’ll see more of that.
Long-Term Implications of Chemo-Free Treatments for Follicular Lymphoma
Tiffany: I know you can’t read the future, but what do you think the long-term implications may be for follicular lymphoma, specifically for chemo-free treatments? What I hear a lot is that I’m living with cancer, not that I have cancer. What do you see with that in terms of chemo-free treatments?
Dr. Martin: People with lymphoma want treatments that work and are well-tolerated. Whether you call them chemotherapy, immunotherapy, or something else, if it works and is well-tolerated, that’s already great. They also want options that conform to where they are in life.
Different treatments that work in different ways have the advantage of potentially allowing us to mitigate some of the short-term and long-term issues that can come up.
Dr. Peter Martin
Every year, we have more and more options available to us. We always try to pick the right treatment for that moment, thinking about the here and now. We also try to think about how what we do today impacts what the patient’s life is going to be like 10 to 20 years from now.
More than chemotherapy, these new treatments potentially have a lesser impact on the body in the longer-term setting. With multiple lines of chemotherapy back to back, people will get through them for decades without major issues but over time, it catches up. Different treatments that work differently have the advantage of potentially allowing us to mitigate some of the short-term and long-term issues that can come up. Having more options is always better.
Clinical Research and Follicular Lymphoma
Tiffany: Both of our backgrounds are heavy in research. I like to talk about clinical research anytime I do a program to get the point out there because oftentimes, people think that a clinical trial is one of their last resorts, they’re not at least getting a standard treatment, or they’re not getting treated at all for their cancer. I know that at Weill Cornell Medicine, you have a robust research program. What does your research program look like and how receptive are your patients to joining clinical trials?
Dr. Martin: I appreciate your disclosure that we both come from a research background, so people should take that into account knowing that we have those biases. The number one barrier to entrance into clinical trials is not patient refusal. It’s because they don’t know that there’s an opportunity. The real burden is having physicians let patients know that this is something that they could do, not patients saying that it’s something they don’t want to do. It’s us. We’re probably the bigger part of the problem.
There are different reasons why somebody might want to participate or not want to participate in clinical trials. They offer new opportunities to access new treatments that might be more effective or better tolerated. In some cases, that might be when other treatments have been exhausted, but in a lot of cases, it might be when a new opportunity has already been well-studied in another setting and you’re looking to apply it in a new setting. There are also some downsides to research, a little bit more of a hassle often.
Tiffany: I’m a proponent of decentralization. Patients can get labs locally without having to track things like that. I’m a little biased when it comes to clinical research, but I do think it has so many benefits, so I’m always promoting it.
Dr. Martin: It can’t be understated that historically, there have been a lot of questionable research practices that were not always in the interest of participants. The medical community on the whole has tried to grapple with this. We’ve got multiple committees, like hospital and patient advisory committees, which try to minimize that and make research as ethical as possible.
There are going to be some people who are distrustful, which is their prerogative. I’m never the person who’s going to twist somebody’s arm to participate in a study that they’re not comfortable with, but I’m also not going to shy away from proposing a study because I’m afraid that somebody is not going to go for it. That’s not respectful to their autonomy either. You propose every option that exists and talk about the pros and cons then people will decide what’s right for them.
Tiffany: Absolutely. I always say too that we don’t give patients enough credit. We always talk about patient education. They need to know that clinical trials are out there and they’ll be more than willing to make that informed decision themselves.
Fertility preservation is also a highly charged issue, but it’s like research: if you don’t talk about it, people don’t have the opportunity to consider it.
Dr. Peter Martin
Fertility Preservation and Follicular Lymphoma
Tiffany: Something that is less talked about in general when it comes to cancer is fertility preservation. An abstract I saw at ASH talked about fertility. For younger patients with follicular lymphoma, does that discussion come up? From what I saw from the abstract, a lot of patients don’t bring it up. They don’t want to discuss it. What has your experience been in terms of having a fertility discussion with your follicular lymphoma patients?
Dr. Martin: Fertility preservation is also a highly charged issue, but it’s like research: if you don’t talk about it, people don’t have the opportunity to consider it. It’s important from the physician’s perspective to ask people about where they are and what they’re thinking about, but it’s also something that patients should advocate for themselves if it’s something they’re thinking about.
In general, follicular lymphoma happens as we get older, but a significant number of people get follicular lymphomas while they are younger and some of those may be considering having children in the future. We’ll get away from the reasons why somebody might choose to have or not have children in the setting of cancer; that’s a whole other complicated discussion.
It needs to be discussed early so that we can think about all of the treatment implications now and longer term, and how we sequence things.
Dr. Peter Martin
Many big hospitals, including Weill Cornell Medicine and NewYork-Presbyterian, have fertility teams that help people consider all of their possible options and how to preserve fertility. Fortunately, even the chemotherapy regimens that we typically use in follicular lymphoma don’t have a major impact on fertility and a lot of the newer treatments have no impact on fertility. The caveat is that you don’t necessarily want to be treating the lymphoma when somebody’s pregnant, although that becomes necessary in many cases and, depending on the treatments used, it often turns out to not be a problem either. It needs to be discussed early so that we can think about all of the treatment implications now and longer term, and how we sequence things.
Tiffany: Thank you for saying that. That’s a conversation you want to have whether you are considering children or not. If you’re younger and considering children, advocate for yourself. If your physician doesn’t bring it up, don’t be afraid to bring it up.
Bridging the Gap Between Academic Research Centers and Community Hospitals
Tiffany: In my experience talking to patients, they don’t get their diagnosis until after they see their primary care physician or go to the emergency room for something different. Because you’re from a large research center, you have multidisciplinary teams, which many people don’t have. They could be going to their community clinic. Patients may not know to go to an academic research center because they haven’t been referred to a specialist. Do you work with any community clinicians or community hospitals? What are your thoughts on working with community doctors to bridge the gap?
Dr. Martin: Even in New York where we have multiple academic medical centers, the majority of people with cancer are managed outside of those academic medical centers, so that’s a reality that we have to acknowledge. I also work in Brooklyn a couple of days a month. People must have access to medical care in their community.
We have to bring better medical care to the communities that people live in rather than vice versa.
Dr. Peter Martin
It took me a few years to come to this conclusion, which is embarrassingly slow, but it’s probably not fair to expect people and their caregivers to travel a couple of hours to see somebody when they have access to medical care in their community. We have to bring better medical care to the communities that people live in rather than vice versa. There are a lot of excellent oncologists practicing in communities and that’s where the majority of people can and probably should receive their care.
One caveat I’ll say is that all of cancer is becoming increasingly complicated, so I don’t think that people should feel uncomfortable seeking a second opinion. I have friends who work in community medicine throughout the whole tristate area in New York and I work with them and help them to manage their patients. Telemedicine has made that easier as well.
This is where patient advocacy comes in. You have to advocate for yourself and speak up about it. If your physician is uncomfortable with that, that might be a sign that they’re thinking about more than your best interests. You’ll find that almost all academic oncologists will encourage second opinions. I certainly do that and help arrange them when I can.
It comes down to a balance. What do you get out of it, what do you have to give to get that benefit, and is it worth it?
Dr. Peter Martin
Key Takeaways from ASH
Tiffany: The ASH annual meeting is a big conference. Was there anything for you that stood out?
Dr. Martin: Bispecific antibodies are going to be a major part of treatment for follicular lymphoma. Exactly how they fit in, which line of therapy, and which combinations get used is interesting to think about. They’re not going anywhere for a while, so that’s pretty cool.
Another interesting study that came out was a late-breaking abstract looking at tafasitamab combined with lenalidomide and rituximab. This was a randomized controlled trial that showed that the addition of tafasitamab to lenalidomide and rituximab improved time to progression. Effectively, it doubled it compared to lenalidomide and rituximab, which is probably one of the more common second or third-line treatments for follicular lymphoma, so that’s a pretty significant benefit.
In some ways, it’s a no-brainer to say that’s something we should do. On the other hand, tafasitamab is a little bit of a hassle. People have to come into the clinic frequently for it, so it’ll be interesting to see where this plays out everywhere. I don’t necessarily know how I’m going to use that information. Again, it comes down to a balance. What do you get out of it, what do you have to give to get that benefit, and is it worth it? But it’s a strikingly positive trial.
Tiffany: I’m going to be following that trial as well.
Conclusion
Tiffany: Thank you so much for this engaging and insightful conversation. I always learn something on the other end of these educational programs.
Dr. Martin, thank you for taking the time to speak with us at The Patient Story. It was so good to catch up with an old colleague and know that we both have remained dedicated to improving cancer care and finding a cure. I’m optimistic about the future as long as we have physicians and researchers around like Dr. Martin.
Laurie, thank you for sharing your story. Lived experiences are very personal and I’m forever grateful to patients who are open and transparent because I believe that it helps the next person and the next patient.
It’s so important to be empowered so that you and your caregivers can make informed decisions about your care. That includes being educated about the latest treatment options for your cancer.
Demystifying Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies
Hosted by The Patient Story
Take part in an engaging and informative webinar featuring Dr. Peter Martin, a leading lymphoma expert, to discuss the latest advancements in follicular lymphoma treatment. We will discuss precision medicine and emerging therapies, while addressing how to manage side effects and improve quality of life. This session is designed to empower patients with practical knowledge and support as they navigate their diagnosis.
Thank you to The Leukemia & Lymphoma Society for their partnership. The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.
The Patient Exchange: Improving Clinical Trial Diversity
Edited by: Katrina Villareal
The Patient Exchange: Improving Diversity in Clinical Trials
Hosted by The Patient Story
Take part in a transformative conversation with five Black patients as they share their personal journeys navigating clinical trials. This program tackles cultural and social barriers head-on, offering insights on starting discussions with your doctor, understanding enrollment, and overcoming mistrust and misinformation. Learn why cancer clinical trials are not so much about placebos but about “getting tomorrow’s medicine today,” and gain the knowledge to make informed decisions for your health.
Take part in a transformative conversation with six Black patients as they share their journeys navigating clinical trials. This program tackles cultural and social barriers head-on, offering insights on starting discussions with your doctor, understanding enrollment, and overcoming mistrust and misinformation. Learn why cancer clinical trials are not so much about placebos but about “getting tomorrow’s medicine today” and gain the knowledge to make informed decisions for your health.
Know how to bring up clinical trials with your doctor. Understand the screening and enrollment process. Listen to real patients discuss their clinical trial experiences. Help dispel the myth of placebos in cancer clinical trials. Overcome mistrust, lack of info, and other traditional cultural barriers.
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
This great conversation is a true discussion where we can talk about barriers in the African American and Black community and the hesitation that some of us often feel when we want to go on a clinical trial.
Tiffany Drummond
Introduction
Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a care partner began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding reliable information to support her care, so I am committed to helping others avoid similar difficulties.
At The Patient Story, we create programs to help you figure out what comes next. Think of us as your go-to guide for navigating not only the cancer journey but your overall health journey. From diagnosis to treatment, we have you covered with real-life patient stories and educational programs with subject matter experts and inspirational patient advocates and guests. I truly am your personal cheerleader here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.
Before we get to our speakers, we want to thank all of our promotional partners for their support, allowing our programs to reach the audience who needs them. I hope you’ll find this program helpful, but please keep in mind that the information provided is not a substitute for medical advice.
You may be wondering: what exactly is diversity in clinical research and why is this so important? Diversity in and of itself is vast in terms of what it means in specific settings. We’re going to focus on the experiences of Black patients. For instance, when we look at cancer and chronic conditions that increase the risk of developing cancer, Black people, who make up 14% of the US population, have a higher incidence and mortality rate.
Research is going to be paramount in understanding and eliminating this disparity, yet only 5 to 7% of Black patients are clinical trial participants. The panel you’re about to meet is representative of those who go on clinical trials. The conversation is going to be one that I hope resonates with everyone within and outside the Black and African-American community to help move research and development forward and be made accessible to all.
This great conversation is a true discussion where we can talk about barriers in the African American and Black community and the hesitation that some of us often feel when we want to go on a clinical trial. This conversation is going to resonate with us, especially in the Black and African American community because we don’t often talk about it, except when we’re thinking about the mistrust and other things that we’re going to get into throughout this conversation.
I had a bad taste in my mouth about clinical trials because my dad joined them and they didn’t work for him.
Gwen
I have with me current and former clinical trial participants, incredible panelists, and patient advocates. I also have with me Tony Williams, who is with The Patient Story as our head of diversity and inclusion and also a diffuse large B-cell lymphoma survivor. We also have Gwendolyn, a cervical cancer survivor, and Shyreece, a non-small cell lung cancer survivor. Because not all clinical trials are cancer-based, I have LaTisha, Latasha, and Cayla who were on clinical trials or at least screened for clinical trials for uterine fibroids, a chronic condition.
Clinical Trials Knowledge
Tiffany: If you’re familiar with The Patient Story, often we talk about the medical aspect of the patient story and experience, but what I want to talk about is getting to the point of clinical trials.
Cayla, how did you first learn about clinical trials? Was it through a healthcare provider or were you already well-versed in this space? What was that experience like for you?
Cayla: My mom was diagnosed with uterine fibroids and she learned from her gynecologist about a clinical trial that was going on. I didn’t even know I had fibroids. I was diagnosed at the trial and followed up with my healthcare provider, so it opened my eyes to my diagnosis.
Tiffany: Tony, what about you? Were you familiar with clinical trials before you started this journey?
When I was diagnosed in 2021 with stage 4 DLBCL, my front-line treatment was R-CHOP, which wasn’t as successful as we needed it to be so I relapsed. At the time, CAR T-cell therapy was being developed, but it wasn’t available for my type of cancer, so I waited about 4 or 5 months before CAR T-cell therapy became available for me. Participating in that clinical trial was a giving back and a next stage for me. My first and second line of treatments failed and that’s how I fell into it.
Tiffany: Shyreece, what about you? Were you always familiar with clinical trials or was this something that happened when you started your cancer journey?
Shyreece: I was ignorant about what cancer was and what clinical trials were. It wasn’t my world when I was first diagnosed in 2014, but I’m happy to be living now for over 10 years with active cancer.
I first heard about the clinical trial through a team of doctors when I was initially diagnosed. One oncologist said you need resources to have clinical trials in your local clinic. She didn’t have access to it. I needed to accept my diagnosis and the intravenous chemo that was given to me. I stayed one month with her and then decided to get a second opinion from the University of Michigan, where I had more options.
I moved to California and in 2022 at Stanford University, I had no idea that the mutations from the targeted therapy would no longer respond to any treatment, so they started popping up and growing. My doctor, whom I greatly respect and trust, said for two years that he looked out for a trial for me. They worked to get it to their hospital so that I could try it. I’m currently on it and I’m doing well. The tumors are disappearing. I’m excited to look at possibly another 10 years of living with a deadly cancer.
Tiffany: That is a perfect story to share because you went from not knowing what a clinical trial was to knowing medical terms and things that you didn’t know before, and that is inspirational at best. Gwen, did you know what a clinical trial was? How did this come into your purview?
Gwen: My father was diagnosed with lung cancer. I had a bad taste in my mouth about clinical trials because my dad joined them and they didn’t work for him.
Going into any treatment, you’re always going to have apprehension, but it’s the next step and you’ve come this far. Participating in a trial was a no-brainer for me.
Tony Williams
Clinical Trial Screening Process
Tiffany: Tony, can you share your experience about the screening process itself? Was it stressful for you? Did you feel supported?
Tony: My first two lines of treatments failed. Because I was at UNC Chapel Hill Medical Center, they offer a lot of different types of screenings and trials, so I was part of a university program that they were working on. UNC is a teaching hospital and because my oncologist was heading that up, it was easy for me to be screened. I didn’t have to go through anything. It was a matter of deciding if I wanted to participate. It was that easy.
You always have that anxiety because you never know. Whatever you’re participating in, you want to see the desired result at the end, which is to be made whole and healed. Going into any treatment, you’re always going to have apprehension, but it’s the next step and you’ve come this far. Participating in a trial was a no-brainer for me.
Tiffany: That brings up a point about where to go to access clinical trials. Oftentimes, it is going to be a large academic research center, but not everybody has access to that. There are local sites as well. We have to get that knowledge to the community about where these sites exist. Going to a larger research center like UNC, you will get comprehensive care.
LaTisha, when you were going through the screening process, did you have any hesitancy? More importantly, were there any barriers for you, like with transportation? Did you have to travel far? What was the experience like for you?
LaTisha: I’m in the hospitality industry, so it was hard to sync my schedule. I had to wait a little longer than anticipated to go to my first appointment to get the initial information on everything I needed to do, so that was pretty hard. It was around 15 miles away and I don’t drive, so those were barriers for me when I first started the screening process.
Tiffany: Thank you for being transparent. Those are barriers that exist and can prevent you from going on a clinical trial. Maybe you are eligible, but you can’t get there. With trials, you tend to have to go more often than you would for your standard care because it’s more comprehensive and they’re doing a lot of data collection. I know the medical community, especially the research community, is looking into how they can build in these added costs that affect participants’ ability to join the trial.
Receiving Treatment on a Clinical Trial
Tiffany: This conversation is specific to the Black and African American community participating in clinical trials, so hesitations and mistrust come into the intervention itself. For participants who received an investigational drug, starting with Shyreece, what can you tell me about the information you received when you were told about the clinical trial and what your treatment was going to be? Did you feel like you were a test subject or guinea pig when they were giving you the information?
Shyreece: ALKOVE-1 is a clinical trial studying NVL-655 for patients with advanced ALK-positive non-small cell lung cancer, which I’ve had for over 10 years. For someone to come and tell me after fighting that long that they’ve got something for me is incredible.
My doctor said, “I’ve been watching your cancer. I’ve been watching you and getting to know you, so I think that this is good for you.” The doctor-patient trust was already there because I trusted him along the journey through other things that he was doing. He said, “We’re going to counteract your cancer this way. We’re going to try this, slow it down, but the resistant mutations are always going to pop up, but I got something for you. We’re going to wait.”
He was trying to get his clinic ready to receive all of the resources needed to accommodate me in that trial as much as they could. I asked about transportation and all those barriers because I would have to go every week. It was an investigational drug, but I’m a power horse, so if there’s hope attached to it, then I’m going to try it. I’m not influenced by culture. I’m influenced by my trust in God and my doctor.
I can’t speak for everybody. If you don’t have that connection and trust with your doctor, I say find another one. I had no problem with going into the NVL-655 clinical trial because it was fully explained to me. I knew what the risks were. They sent the information to me by email and I had a month before I signed the consent form. I was very well informed and I knew that he was waiting on that trial for me. When the study coordinator gave me her cell phone number, I knew I was going to be in good hands.
It was an investigational drug, but I’m a power horse, so if there’s hope attached to it, then I’m going to try it.
Shyreece
Placebo-Controlled Clinical Trials
Tiffany: Here’s the question that’s going to need some unpacking, especially in the Black and African American community. When it comes to treatment, we don’t understand placebo, especially when it comes to cancer and chronic conditions. Before I get into that, to clarify, what are your thoughts on placebo-controlled clinical trials?
Gwen: After someone tells you that you have 15 months to live, you’re at the point where you accept whatever you can do to stay alive and to see your grandchildren grow up. You’re going to do whatever you have to do. I knew I had some more living to do. She said, “You have to trust the team. You have to trust God first and then you have to trust the medical team,” and I trusted MD Anderson.
I met my doctor at a retreat by a cervical cancer organization called Cervivor. She was a doctor at MD Anderson and I was going to another hospital at the time. I used to be a case manager, but I was having so many issues as a case manager that I needed a case manager.
At the retreat, I was crying to her. I said, “They don’t care about Black women. They don’t care about the women in my community.” She looked at me and said, “I care. Call me when you get back.” She has been true to her word. I reached out to her and said, “I need to know some things about clinical trials.” Her team reached out to me. It’s all about trust.
Tiffany: What often happens is when you go on a clinical trial, you get more comprehensive care. They want to know if the study drug or new combination is working for you. Maybe it doesn’t, but it may work for the next person. These experiences are what this program is about because when it comes to clinical trials, we don’t often get to see that experience. We only get to read about it or hear about the bad things that happen. Cayla, do you have any thoughts on placebo-controlled clinical trials?
Please note that the use of placebos in cancer clinical trials is very uncommon. In nearly every case, cancer clinical trials compare a new treatment or combination of therapies to the existing standard of care, rather than a placebo.
The Patient Story
Cayla: Automatically, you go in and say, “I’m going to try this and I’m going to be healed.” That’s the positive aspect, but not everyone is getting the medication. You don’t understand that a placebo has to be in effect. Try to do as much research as you can and reach out to the staff or someone you have a rapport with on the team. They can’t tell you if you’re getting a placebo because you might drop out. You should go in there knowing that you might receive the placebo and the next person next to you might receive the medication. Who knows? The person may receive the treatment and yet not have it work for them.
The Patient Exchange: Improving Diversity in Clinical Trials
Hosted by The Patient Story
Take part in a transformative conversation with five Black patients as they share their personal journeys navigating clinical trials. This program tackles cultural and social barriers head-on, offering insights on starting discussions with your doctor, understanding enrollment, and overcoming mistrust and misinformation. Learn why cancer clinical trials are not so much about placebos but about “getting tomorrow’s medicine today,” and gain the knowledge to make informed decisions for your health.
For anyone on a clinical trial, you will never not get anything. That is unethical. If you go on a clinical trial, you are at least going to get the standard of care for your condition.
Tiffany Drummond
It’s all about research and trying to understand as much as you can. There’s a lot of information out there and it discourages everyone from trying to be a part of the trials. People use verbiage that a lot of the people in the community don’t understand. Instead of explaining in-depth, the staff members look at us wondering why we don’t know. I’m a little 50-50 with the placebo. I’m proud of the trial, but I understand why the placebo is needed.
Tiffany: I’m glad you said that. This is what I always drive home. For anyone on a clinical trial, you will never not get anything. That is unethical. If you go on a clinical trial, you are at least going to get the standard of care for your condition. You’re never not going to get that.
What may happen is they give you the standard treatment in addition to whatever investigational drug they’re researching or a placebo. Oftentimes in our community, we think that they’re not giving us anything. This is the last resort, so we’re getting a placebo. This isn’t true.
You can ask. If you’re going into an office and they’re offering you a clinical trial, ask, “What’s the minimum I’m going to get? Am I going to get treated for my condition?” No matter what it is, whether it’s a headache or diabetes. “What is my alternative?” They should tell you in the consenting process what your alternatives are and the options that you’re going to be getting on the trial.
I didn’t want to have surgery. I wanted the bleeding to slow down or stop. That was what I was going to the trial for.
LaTisha
Measuring Expectations on a Clinical Trial
Tiffany: LaTisha, when you went on the clinical trial, what were your expectations? What were your thoughts on what you wanted to happen? Were you realistic about whether or not it will work?
LaTisha: I wanted to be more informed. I knew I had had fibroids for a long time. I was trying to figure out what my other options were. I didn’t want to do the surgery at all, so this would have been an option to not have surgery. However, they didn’t have the resources to see where my fibroids were, so she wasn’t able to see exactly where they were. I didn’t know they could be in multiple places. I didn’t want to have surgery. I wanted the bleeding to slow down or stop. That was what I was going to the trial for. I did not want to have the surgery at all.
Tiffany: Did you enroll or were you considered a screening failure?
LaTisha: I was enrolled. I had to do samples. They kept trying to do the ultrasound. They would tell me to come at different times of the month, but she could only do the vaginal ultrasound. She couldn’t send me for an MRI or anything that wasn’t part of the screening process. I probably went for about three months. When they couldn’t get the imaging that they needed to get, then that’s when I had to stop.
Tiffany: What about you, Latasha? Are you still on a clinical trial or are you done? Would you consider going on another one?
Latasha: I’m at the beginning of a clinical trial. When I started my endometriosis journey a couple of years ago, my fibroids were small. Then it got to a point where they started to bother me so much and I was hurting, so I had them removed.
I didn’t want to have surgery either, but when they say they need to remove something that’s not supposed to be there, I’m all for it. It gives me a better chance to regroup and allows the researchers to see how fast the tissue is growing or how much the lining of the uterus is accumulating each month. They’re able to start tracking what they couldn’t see before the fibroids started growing or the uterus started thickening. It’s hard to go by what everybody else says because they have some good points about the placebo.
Side Effects on Clinical Trials
Tiffany: Oftentimes, we’re afraid of the unknown and when I say we, I’m talking about the Black and African American community and with valid reasons. Tony, when you were on a clinical trial, did you experience any adverse effects? How did the side effects differ than when you were on standard therapy?
Tony: Anytime you’re diagnosed with cancer or any other disease, there’s a level of faith that you have to have and that will be activated during your journey. You’re going to believe in God, but you’re also going to believe in the medicine that God can work through.
Undergoing CAR T-cell therapy was terrible. I had a very aggressive chemotherapy regimen, but CAR T-cell therapy was worse because it was coming off a clinical trial and I was getting that as a second-line defense. The procedure that I had to go through was a lot of trauma to the body, with the extracting of my blood, taking it to a lab to get it re-engineered, and giving it back to me. I have received the worst chemotherapy that they have and that didn’t solve this, but I kept my faith knowing that at the end, I’m going to see this through.
One thing I never asked during my journey and until now was why. Why not me?
Tony Williams
When I did CAR T-cell therapy, that previous six-month period when I got chemo, they gave me that in three days. I felt like I was seeing death. Darkness came over me because it was so aggressive. My body was in shock. I recall the first day that happened, I was out of sorts. The second day, I passed the chapel and said, “I can’t do this,” but I knew I could and I did.
It was very hard, but one thing I never asked during my journey and until now was why. Why not me? Why can’t I be the one to help somebody get through this? I made it through the chemo on CAR T-cell therapy, but it was unknown. I was afraid, even though I didn’t admit it.
You have to exist in a reality that’s not there for you but where you’re going to exist because if you exist in the right now, you will not get through it. You have to exist in a realm that’s beyond where you are. It was very challenging and tough. Not knowing if it was going to work was even more excruciating because you knew what you had already been through.
I never felt like a guinea pig. I felt like it was necessary. The way that drugs come to the market now is not like it was back in the time of Tuskegee or Henrietta Lacks. They have to do what they can to bring the drug to the market. When you join a clinical trial, like Tiffany said, you are getting the best of what they have because they want that to succeed. You are a frontline participant of the best of what they have.
It was traumatizing. It was excruciating and painful. Parts of me wanted to doubt, but when you’ve come this far, what do you have to lose? God has already proven that He’s with you. When they give you a ticking clock and say you have one to three years left and you passed that, what do you have to lose except to continue to believe? That was my mentality.
Tiffany: As a caregiver to someone who did not go on a clinical trial but knew about clinical trials, I understand that some of these drugs are toxic, whether they come to the market or not. Gwendolyn, when you go through that on a clinical trial, does it make you doubt? Am I doing the right thing or is it like Tony said, like you know it’s going to be hard, but you’re going to push through? What was your experience?
If you want to send somebody to talk about clinical trials, send me. I’m alive today first because of God, but second because of the clinical trials.
Gwen
Gwen: So much of what Tony said is so true. Radiation and chemo kicked my butt. I had every side effect on the list. I knew I was a fighter, but I was leaning against the ropes and I wasn’t standing anymore. I want to live.
I tried everything. When you’re fighting stage 4, all of your family and friends have the remedy. Everybody called me saying, “Eat right. Don’t eat meat. Juice. Do nothing but herbs.” I was everybody’s guinea pig. In the Black community, everybody has a remedy, so I said let’s go. If you’re stage 4, you’re already getting a beating, so let’s try something new.
The crazy part about it is when I tried clinical trials, they put me on steroids too because mine was in my bones, so I gained weight and got stronger. I tell people all the time that I’m a walking billboard now. I’m alive because of a clinical trial. If you want to send somebody to talk about clinical trials, send me. I’m alive today first because of God, but second because of the clinical trials. I was dying from radiation and chemo. I had three strokes and two heart attacks. I’m on team clinical trial. You can’t tell me anything different.
Tiffany: Experiencing side effects when you go on these trials isn’t talked about a lot, not realizing that you can have these same side effects with drugs that are on the market as well. Shyreece, I want to hear your experience as well. When you were going through your treatment on the clinical trial, did you ever reach a point when you thought about whether this was the right thing to do or you should think about going off? What was that like for you?
Shyreece: Muscle myalgia was big for me in the initial stage of my diagnosis. It was so bad that I had cramping and abdominal pain. I even got C. diff at one stage of my journey. It was so bad that on Christmas day, I had to go into the hospital for two weeks to be treated.
I love mustard greens. Thanksgiving was coming up and I cooked some ahead. I ate a couple of bowls and it tore me up. I had to lay down, cramped. Sometimes you have to change some of the natural things that you’ve been doing every year. The side effects can come out of the blue. You don’t even know when they’re going to hit you. I nurtured myself until I felt better. That’s how I roll when it comes to side effects.
I’m at a place where I stay surrendered. If I’m going to do the trials and treatments, I have to stay surrendered and resilient. I’ve always believed in God. I’ve always believed in Jesus. But when I got diagnosed with cancer, I thought, “What did I do wrong? Oh, I need to forgive somebody.”
When I went to Stanford, they issued an NCCN Distress Thermometer, a survey that assesses your well-being from week to week by the time you come into your clinical appointment to see where your psychological state of mind is at. Fighting cancer is as much mental as it is physical. How did a cough turn into stage 4 lung cancer? When I cough now and clear my throat, I say, “Wait a minute.” I’ll cough and then tell myself, “Self, don’t you over cough. Self, cough just enough. Self, get you some water.” I have to talk to myself like that. It may sound crazy, but it works for me.
I also tell myself that I was created. I had to read the Word for myself. I love everybody in my faith community, but I had to get deeper into finding a purpose as to why I’m still here. I’m not going anywhere until I have done everything that my Creator has prepared for me to do.
With that being said, I take that power and mental state of mind, get to know my team, and pray. What should I be doing? Who should I be doing it with and where? I’m at Stanford. The people who I’m working with are those particular people. I am present. I am all in. If and when I do decide whatever treatment I’m going to do, I don’t attach any cultural baggage to it because I know it comes from a place of fear and I can’t live in fear. I have to trust today. I have to trust God today and the people of today. If I don’t trust who I’m around, it’s not going to work anyway.
Tiffany: Cayla, LaTisha, and Latasha, for your clinical trials, what did they tell you was your intervention?
Cayla: They had to confirm that I had fibroids to be on the trial. They asked a set of questions to see if I qualify. I got to a certain point and they told me there was nothing they could do. They needed more resources.
An MRI confirms how big the fibroids are and their location. Fibroids can enlarge the uterus and it can be on the uterus, behind the uterus, and in different locations, so they weren’t too sure. They knew I had them, the size, and how many, but they didn’t know where they were. They told me to count how many sanitary napkins I was going through. I kept a log of how often I had to change and how often I had to take anything for pain management. They wanted to make sure before they gave an intervention.
You had to see them more. They had to collect samples. My intervention was to make sure I controlled it. With any disease, diet is important. Are you exercising? Are you a smoker? Do you drink alcohol? These have an effect. I would say they contributed to the intervention as well. I didn’t take medication to assist me. I did the non-pharmacological method.
Tiffany: What this shows is that when we say intervention, people automatically think it’s a drug and that’s not true. They could be collecting data. Oftentimes, what we don’t understand collectively as a community is that the data that we’re looking at is not representative of the people who it affects the most. With conditions that disproportionately affect Black and African Americans in high incidence and mortality, we’re never going to find an answer about why it’s happening if we don’t get data from the people it’s happening to.
Go to where we are. Use layman’s terms, simple language in a nice brochure, and put them in common places
Shyreece
Bridging the Clinical Trials Gap
Tiffany: You all have been passionate in your answers and that spreads more message than someone reading something that they don’t understand. These are shared experiences. What can we do to bridge the gap to make clinical trials less fearful?
Shyreece: We’re the ones who can best spread the message. Go to where we are. Use layman’s terms, simple language in a nice brochure, and put them in common places, like supermarkets, churches, and predominantly underserved schools, where the demographic is mostly Black. Leave some literature with visual representation so they can be easily read. Include information about the screening. Don’t be afraid to speak a little faith language to get on the inside and let them know that you care.
Tiffany: I believe that our life experience is our expertise and sharing that is going to make the difference. I talk about clinical research to anyone. If they’re listening, I want to promote it. These are things that we want to understand because we’re always asking why. Why us? Why are we always getting this? No one can ever give us an answer. The only way we’re going to get that is to look at data.
I believe that we as African American people have a lack of awareness overall about our health.
Tony Williams
Tony: What I have found over my travels with The Patient Story and being the head of diversity is to stress overall health awareness. When you go to the places that Shyreece mentions — our churches and civic centers, where we gather — cancer is not the one single modality. There is always something attached to it, like high blood pressure, high cholesterol, or diabetes.
I believe that we as African American people have a lack of awareness overall about our health. Cancer manifests itself, but something else is manifesting. If we can get to the root that, we take care of ourselves overall and you will not see the manifestation of a lot of these things.
Everything is tied to what you put into your body. Limit exposure to garbage. Overall awareness and pushing that initiative is the first place to start. Cancer is one of many. We all have that in common, but that’s not the only thing. We’re being taken out by heart attacks and other health issues too. Cancer didn’t have a chance to pop up because the heart attack got you first.
Tiffany: Usually, you’re seeing your primary care for everything and that’s the person who’s going to give you the workup that’s going to say something’s not right. How can we be more self-aware and advocate for ourselves to say, “Doc, what else is out there?” We know there will be barriers, like transportation, childcare, and having to leave work, which is a deal breaker for many people because they don’t have the means to do that.
I had to put myself out there and start a fundraiser… If I’m doing this and willing to do this, how can I encourage someone who may not have the skill set?
Shyreece
Shyreece: When I realized that, I had to put myself out there and start a fundraiser. It’s so humbling and so vulnerable, but I wanted to do it and I had to go first. I couldn’t wait for the reimbursement from the sponsor, so I had to put a plan together and execute the plan.
There’s so much preparation involved. If I’m doing this and willing to do this, how can I encourage someone who may not have the skill set? Let’s talk about that and be very transparent. Everybody may not have the skill set and the resources. How do you encourage them? Where can we have a list of resources? Where are these places to get support? How do you handle rejection? I powered through it. Everybody doesn’t have that support system. How do we encourage those things first?
I tell my story because this is my community and where I grew up. Start where you are.
Gwen
Gwen: Cervivor trains us. Even though I have cervical cancer, that doesn’t mean that I’m trained to speak to the community. Before I can do that, I have to know the facts and when I’m speaking, I have to give them the truth. I can’t talk off the top of my head.
Before I even knew I had cancer, I started a cancer organization in memory of my father. I go around the low-income Black and Hispanic communities. I go with MD Anderson now because now we have a relationship. I tell them to leave their white coats at home and be in jeans and tennis shoes. We want them to have a comfortable conversation where they’ll open up to you.
When I go out there, I bring in resources because I can’t go in there and tell you to get screening and not have help for you. I can’t leave you out there by yourself. We have to have more of that going on. We have to get out there.
I tell my story because this is my community and where I grew up. Start where you are. Cervivor told me that my story matters. They gave me confidence, so I’m out there now telling my story and we can have that conversation. I partner with schools, business owners, and churches. We need to go to the important places in the community.
Shyreece: Amen. I wrote my book for that reason. I started in my church. Start where you are.
Conclusion
Tiffany: I want to thank every single one of you. You all have made an impact in this conversation. I’ve learned about things that I did not know, so thank you so much for being willing to share with me and The Patient Story. Your experiences are going to resonate with a lot of people.
If you’re in medical school, you’re seeing the same stats that we’re seeing. You’re reading it, but we’re living it. You can understand better and get a bigger picture about why it’s so important that we participate in these clinical trials that can literally save lives.
What an electric and energizing conversation for sure. It doesn’t take much for me to talk about clinical research. Sharing the room with Tony, Gwendolyn, Shyreece, LaTisha, Cayla, and Latasha was icing on the cake. It is important to be empowered so that you and your caregivers can make informed decisions about your care.
Thanks again to our promotional partners.
The Patient Exchange: Improving Diversity in Clinical Trials
Hosted by The Patient Story
Take part in a transformative conversation with five Black patients as they share their personal journeys navigating clinical trials. This program tackles cultural and social barriers head-on, offering insights on starting discussions with your doctor, understanding enrollment, and overcoming mistrust and misinformation. Learn why cancer clinical trials are not so much about placebos but about “getting tomorrow’s medicine today,” and gain the knowledge to make informed decisions for your health.
Background: Chris' wife Keasha passed away from stage 4 lung cancer one month after they married. He's been a passionate lung cancer advocate ever since. Focus: Leading with love, making connections to grow lung cancer community, NFL liaison
Background: Jeff was diagnosed with stage 4 lung cancer and given months to live, but his wife, Rhonda, fought for a specialist that led to biomarker testing and better treatment options Focus: Education of biomarker testing for driver mutations, patient and caregiver self-advocacy
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Lindy was diagnosed with stage 4 colon cancer when she was two months postpartum at age 34. During her pregnancy, Lindy experienced severe abdominal pain, changes in bowel movements, blood in her stool, and significant discomfort, all of which she initially attributed to pregnancy. Unbeknownst to her, these symptoms were indicative of colon cancer, which was eventually discovered during a routine full-body MRI for a previous benign brain tumor and spinal tumor.
Doctors identified malignant cancer had spread to her colon, lymph nodes, liver, and lungs. The shock of her diagnosis came at a time when Lindy was navigating the challenges of new motherhood. She took an active role in researching her diagnosis, and while the news was overwhelming, it helped her process the information before meeting with her oncologist.
Lindy’s treatment began swiftly with chemotherapy in January following her December diagnosis. Although surgery was not considered an immediate option due to the cancer’s spread, chemotherapy has been her primary treatment. She transitioned to maintenance chemotherapy, as her body responded well to the treatment with minimal side effects. While she still experiences some numbness from neuropathy, she considers herself fortunate for not facing more severe symptoms.
Throughout her experience, Lindy has been grateful for her medical team, who never dismissed her concerns despite her young age. While colon cancer is typically seen in older individuals, Lindy’s case is part of a growing trend of younger people being diagnosed with the disease. This has prompted her to encourage friends and family to undergo early screening.
Lindy is realistic about her prognosis, understanding that while her cancer is not curable, it is treatable, and she remains hopeful for potential advancements in treatment. She has made practical preparations for the future while focusing on enjoying life with her son and husband. Lindy’s strong support system has helped her navigate both motherhood and cancer.
Lindy emphasizes not spiraling into despair. Instead, she encourages others to seek out a supportive care team, possibly including palliative care to manage pain symptoms, and to focus on living in the moment. Lindy’s outlook remains positive, bolstered by the progress she’s made and the hope for future treatment developments. Despite the challenges, she is determined to live as fully as possible, enjoying time with her loved ones.
Name: Lindy A.
Age at Diagnosis:
34
Diagnosis:
Colon Cancer
Staging:
Stage 4
Symptoms:
Blood in stool
Changes in bowel movements
Pencil-thin stool
Severe abdominal pain
Loss of appetite
Rapid weight loss
Anemia
Fatigue
Treatments:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
