The Importance of Cancer Screening in Communities of Color | Dr. Colin Ottey
Dr. Colin Ottey, an internal medicine physician and the Executive Medical Director at Advance Community Health in Raleigh, NC, has a passion for providing care to underserved communities and addressing health disparities.
He discusses the barriers that often prevent people from seeking medical care and offers suggestions on how to improve access to healthcare. He underscores the importance of preventative care, especially crucial for the Black and African American community and people of color. He shares why building trust between healthcare providers and patients of color is vital and how by working together, patients and healthcare professionals can break barriers, improve access, and achieve better health outcomes.
This interview is part of our series Continuing the Dream – honoring Black and African American contributions to healthcare through storytelling and community gatherings
Thank you to AbbVie, Genmab, and Karyopharm for supporting our patient education programming. The Patient Story retains full editorial control over all content
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m an internal medicine physician. I’m the Executive Medical Director of Advance Community Health in Raleigh, North Carolina, which has been around for over 50 years. Advance provides primary care services to individuals in Wake County and Franklin County.
I grew up in Jamaica. I attended college at Brooklyn College and medical school at the University of Illinois at Chicago. I have a special interest in primary care, providing care to the underserved, and working to help reduce health disparities.
What drew me to medicine was the desire to care for people. Growing up, I always liked that doctors were able to prescribe medications that made me feel better afterward. I felt like I would be like those who cared for me as a young child.
As a physician at Advance, I have a great opportunity to serve people, especially those who are underserved or dealing with health disparities, and to influence the care that we can provide as an organization.
Sometimes they feel like they’re better off not knowing if something is wrong with them.
Why People Don’t Want to See a Doctor
Fear is one of the biggest reasons people don’t want to go to a doctor. Sometimes, people don’t want to know they have a medical condition. The lack of knowledge, assumption of what the condition may be, or the outcome of that condition creates a level of fear. Sometimes they feel that they’re better off not knowing if something is wrong with them.
We also have to deal with some social determinants as well. People may not be able to get time off from work to go to the doctor. They have to arrange child care if they have children to take care of. Lack of insurance or financial resources could be a barrier as well. If they live in a rural community, they may have limited specialty services and primary care services as well. If they don’t have transportation, they might not be able to access health care in a center like Raleigh. That’s why we have to make health care more flexible so people can access these services.
One patient who was in his 40s at the time and had a family history of prostate cancer… It turned out that he had prostate cancer, even though he had a normal PSA. Had he not done the digital rectal exam, which a lot of men are afraid to undergo, we would not have discovered his cancer at the time.
Importance of Getting Access to Preventative Care
African Americans or people of color need to get screened because it can help reduce health disparities. Early detection and screening can help people get care much earlier during a disease process than waiting until they start experiencing symptoms, at which time, these conditions could be in terminal stages where very little can be done to treat their conditions.
It’s important to get screening so that we can reduce morbidity and mortality as it relates to those specific conditions. With numerous screening tools available, individuals can access them through their primary care physicians or providers.
I had one patient who was in his 40s at the time and had a family history of prostate cancer, so we always talked about that. He had a normal PSA because we were monitoring. It turned out that he had prostate cancer, even though he had a normal PSA.
The result of one of the exams that I did was concerning to me, so I referred him to a urologist. Had he not done the digital rectal exam, which a lot of men are afraid to undergo, we would not have discovered his cancer at the time. It’s important for men to not be afraid of the digital rectal exam to get screened for prostate cancer. They can always do a PSA test, but the combination is very helpful in terms of screening for prostate cancer. There are a lot of treatments for prostate cancer that could also help reduce morbidity in African-American men.
Providers need to be able to develop relationships with their patients… We have to do is to treat patients the same way we would like to be treated if we were a patient.
How Healthcare Providers Can Build Trust with Patients of Color to Address Health Disparities
We need more healthcare providers of color. People can relate to each other and that will help to build trust. Providers need to be able to develop relationships with their patients. That’s where cultural competency comes into play because sometimes, even though you might identify with the person’s ethnicity if you’re able to develop an understanding of their culture and who they are as a person, you can develop trust with that patient.
Sometimes, patients feel as if providers are delaying care or preventing them from getting certain types of care that they need. What they don’t understand is that we have barriers that we’re dealing with, such as issues with insurance companies that can approve or deny services.
What we have to do is to treat patients the same way we would like to be treated if we were a patient. We have to give patients the level of respect that they need, regardless of their age. See the person as a human being and not as a disease process.
Miss Brown doesn’t just have diabetes. The patient is a diabetic, but she’s a person. She’s a mother and probably a grandmother. She’s probably someone who has been working for X number of years. She could be a person who’s in charge of a department at her job. She’s as important as we are as physicians. We should try to give them that level of respect and allow patients to share their concerns. We should always have room for that in our visits.
Patients should not be afraid to communicate with their providers when they want to ask questions.
How Patients Can Establish Relationships with Their Healthcare Providers
Patients should not be afraid to communicate with their providers when they want to ask questions. They should know their main condition. They should know if there’s something that can be done to treat their medical conditions. They should speak to their providers and say, “I’m X years old now. What things do you think I need as far as my health screening?” They should open that dialogue with their provider and not be afraid to talk to them.
With technology now, we can do a telehealth visit, if they’re uncomfortable with a direct, face-to-face visit with their provider. Telemedicine can help break down some of those barriers. That could be a gateway to get people into the office with a provider directly.
Special thanks again to AbbVie, Genmab, and Karyopharm for supporting our patient education programming. The Patient Story retains full editorial control over all content
An internal medicine physician discusses healthcare access, preventative care, patient trust, and how both doctors and patients can improve relationships for better outcomes.
Hospice, Hope, and Hard Truths: Michael’s Stage 4 Neuroendocrine Carcinoma of the Esophagus Story
In December 2023, Michael began experiencing mild difficulty swallowing. Initially, he needed extra water while eating, but as the problem worsened, he sought medical attention. His primary care doctor suspected an infection and prescribed medication, but when symptoms persisted, he was referred for an endoscopy. The procedure revealed tumors covering his esophagus, and after extensive testing, he was diagnosed in February 2024 with stage 4 neuroendocrine carcinoma of the esophagus.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Despite Michael’s initial shock and denial, he quickly sought treatment. As his symptoms worsened, making it difficult to swallow, he experienced severe dehydration, which ultimately led to his hospitalization at City of Hope. There, doctors conducted multiple scans, including MRIs, CTs, X-rays, and ultrasounds. These scans confirmed that while the cancer had spread, it was not extensive. Consequently, they placed him on chemotherapy and immunotherapy, with plans for radiation. However, due to his difficulty lying flat without choking on his saliva, radiation was not an option.
Partway through treatment, Michael began coughing up blood. The situation escalated, and after a bronchoscopy, doctors discovered a massive fistula between his esophagus and airway. The severity of the fistula led doctors to predict he had only days to weeks left to live. This moment marked a shift in his outlook, and doctors admitted him to hospice care in March 2024.
Although given a grim prognosis, Michael has surpassed expectations, living over a year past his initial two-week estimate. During this time, he has reflected on his experiences and learned to set boundaries, especially in managing visits from well-meaning family and friends. He has also witnessed the incredible dedication of his wife, whom he deeply appreciates for her caregiving efforts.
Throughout his illness, Michael has prioritized self-advocacy, recognizing the importance of seeking second opinions and questioning medical decisions when necessary. His wife played a crucial role in reaching out to specialists across the country to confirm the initial diagnosis. He continues to consider undergoing further scans to understand the progression of his condition, although he remains uncertain about the potential emotional toll of receiving updated results.
Michael’s advice to others facing similar situations is to focus on their mental well-being, mend relationships where possible, and ensure their personal affairs are in order. He emphasizes that while doctors provide estimates, they cannot predict an individual’s exact trajectory, as he himself has defied expectations despite his stage 4 neuroendocrine carcinoma of the esophagus diagnosis. Ultimately, Michael’s experience highlights the unpredictability of life with a terminal illness and the importance of both self-advocacy and emotional preparedness.
Name: Michael B.
Age at Diagnosis:
31
Diagnosis:
Neuroendocrine Carcinoma of the Esophagus
Staging:
Stage 4
Symptom:
Progressive difficulty swallowing
Treatments:
Chemotherapy
Immunotherapy
Surgery: feeding tube placement
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.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Your MPN, Your Journey: How New Discoveries Will Impact Personalized Care
Whether you’re newly diagnosed or managing ongoing care, learn how the latest findings impact your myeloproliferative neoplasms (MPN) treatment options and quality of life.
Dr. John Mascarenhas of The Tisch Cancer Institute at Mount Sinai and patient advocate Andrew Schorr share the latest breakthroughs in MPN care. Explore personalized treatments, cutting-edge therapies, and groundbreaking research that are changing how MPNs are treated. Learn how new discoveries can improve your treatment options, help manage side effects, and enhance your quality of life.
Your MPN, Your Journey: How New Discoveries Will Impact Personalized Care
Hosted by The Patient Story Team
Dr. John Mascarenhas (Mount Sinai) and patient advocate Andrew Schorr share the latest breakthroughs in MPN care. Explore personalized treatments, cutting-edge therapies, and groundbreaking research that’s changing how MPNs are treated. Learn how new discoveries can improve your treatment options, help manage side effects, and enhance your quality of life.
Hear about cutting-edge research and new therapies presented at the 2024 American Society of Hematology meeting. Learn how individualized treatments can improve your outcomes and quality of life. Get practical strategies for handling common side effects of MPN treatments. Discover innovative therapies, including JAK inhibitors and combination treatments. Find out how to stay informed and participate in promising clinical trials. Learn the key questions to ask your healthcare team to ensure you’re receiving the best, most current care.
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.
Thank you to Sobi and Incyte 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.
Tiffany Drummond: As a clinical researcher and patient advocate, I am excited to talk about some very exciting developments in MPN treatment, including important breakthroughs and promising new combination therapies. Many of these advancements were highlighted at the 2024 American Society of Hematology meeting, better known as ASH, where leading doctors and researchers from around the world gather to share the latest findings.
Our goal is to provide patients and care partners with valuable information to help in their healthcare journey. We want to empower you to have informed conversations with your medical team so you can better understand your treatment options and how to balance effective care with maintaining your quality of life.
We want to thank our sponsors, Sobi and Incyte, for their support, which helps us host more of these programs for free to our audience. 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 programs reach the audience who needs it. While we hope you find this program helpful, please keep in mind that the information provided is not a substitute for medical advice.
Let’s kick off another engaging conversation with amazing patient advocate Andrew Schorr and leading hematologist-oncologist Dr. John Mascarenhas.
Andrew Schorr: Welcome to this program about the latest in MPNs. I’m with a friend and leading scientist-physician Dr. John Mascarenhas at The Tisch Cancer Institute at Mount Sinai in New York. John, you have many titles. You’re a noted hematologist and subspecialist in MPNs. Thanks for joining us.
Dr. John Mascarenhas: Andy, thanks for inviting me. I always enjoy connecting with you.
There has been a lot of interest as we understand the disease biology even greater than we did in 2005 when the JAK mutation was first discovered.
Dr. John Mascarenhas
Is There Encouraging Progress for Myelofibrosis Patients?
Andrew: It’s very personal for me. I’ve been living with primary myelofibrosis since 2011 and it’s somewhat progressed. I’ve been on two JAK inhibitors and maybe I’ll switch to a third. Will I have combination therapy with a JAK inhibitor and something else? We all wonder about that.
Some of us are concerned. Should we have a transplant or can medical therapies take the place of a transplant? If you have polycythemia vera or essential thrombocythemia, you ask if you’re going to progress to myelofibrosis and at what rate. How is our situation different from the next person?
John, you were a speaker at the 2024 ASH meeting in San Diego, and you were involved in lots of studies. I want to talk about what’s significant for patients. We have the current therapies and a lot of drugs that many of us have never heard of that are in development. You’re involved in a lot of the development. Which way is the wind blowing? Are you encouraged for us? We saw progress in other blood cancers. Is it now starting to blossom in MPNs, specifically for myelofibrosis?
Dr. Mascarenhas: The short answer is yes, I am encouraged. That’s a fundamental defect that I have, continuing to be optimistic no matter what we’re looking at. That optimism has been maintained over almost 20 years that we continue to move in the right direction, but unfortunately, often not fast enough for our patients.
What I’ve seen is the evolution of the JAK inhibitor era, which you alluded to. We have four JAK inhibitors that are approved that allow us to tailor and personalize the therapy to patients based on their profile and blood counts, and even provide serial sequencing of JAK inhibitors. But that isn’t enough.
There has been a lot of interest as we understand the disease biology even greater than we did in 2005 when the JAK mutation was first discovered. We now recognize that there’s a greater degree of complexity and heterogeneity among patients. There are a lot of different pathways that appear to be very important and relevant to the physiology and pathophysiology of this disease.
There is a real interest in targeting the grandfather/grandmother cell in which the disease originated. We are looking for vulnerabilities in those pathways in that cell population that would allow us to ultimately delete that cell to provide deeper responses and even curative approaches. Outside of transplantation, the therapies we have don’t cure patients. They address issues that are not unimportant, like spleen size and cytopenia or low blood counts, and improve how patients do and ultimately prolong survival. But we’re looking to leverage these findings from the lab to find therapies that change the disease course and improve outcomes like survival and progression-free survival.
Many agents are leading us in that direction. These agents turn on the p53 pathway, like navtemadlin, an oral drug that binds a protein called MDM2 and relieves repression on p53, allowing for the natural cell processes to be induced, which is cell death of the malignant cell. It’s a fascinating concept. Navtemadlin is at the forefront of doing that. We showed data in the relapsed/refractory setting of using that as a single agent. We’re now going to move it up to combinations.
Drugs like that are telling. They’re hitting pathways that can induce malignant cells at their core to die, to synergize, and be practical with it. We want to create therapies and approaches that capitalize off the benefits we have, like JAK inhibitors, which can be well-tolerated but can provide deeper responses than what we’ve seen thus far. Navtemadlin is a great example of that.
What Have We Learned from MPN Gene Mutations?
Andrew: We’re going to go through a laundry list as we dig into different drugs, but I want to go over what you said. You’re trying to go back to the very basics of cancer, what went haywire in a patient who ends up with a bone marrow problem that leads to one of the MPNs. Can you shut it down at the earliest stage by understanding it?
Over the last few years, your scientific community has identified different oncogenes (cancer genes) that have been responsible for that. You talked about the heterogeneity or the differences. Some of us have CALR, some have JAK2, and some have MPL. Is that understanding helping?
Dr. Mascarenhas: I do think it helps because we recognize that it’s not a monolithic disease. The driver mutations and the different amounts of those mutations that are understood to be present in the bone marrow cells as well as the sequence in which the mutations arose all tell a picture. They paint a picture of complexity at the molecular and cellular level that explains why there’s heterogeneity at the clinical level — why some patients have very high white counts and some patients have very low platelet counts; why some patients have very big spleens and some patients have a lot more anemia and transfusion dependence. It can all be explained relative to the biology, these mutations, and the effects of these mutations.
Once we’ve realized that, the next step is how to take all of that complex data and distill that to help us understand how best to target those cells based on that genomic complexity. That’s where things like artificial intelligence and machine learning will help us move the field forward as it’s doing with other sciences. We’re moving in this direction of a deeper understanding of the biology from the molecular standpoint that informs us with prognostication, which is important, but most importantly, therapeutic implications.
There is substantial data that would suggest that certain mutations likely influence outcomes and responses to treatment. Most patients will have had next-generation sequencing. You look at these gene panels and see if mutations exist in any given individual and what they mean. We know that some of these mutations can have influenced prognosis and outcome. Some of these mutations and the presence of more than one mutation could even predict a lesser response to drugs like ruxolitinib, a less robust spleen, a shorter duration of response, and a quicker time to failure of drugs. Knowing that upfront may be strategic in understanding how better to approach diseases rather than give the same drug to everybody.
The same drug for everyone is not going to be the right answer. At the forefront, drugs that target CALR, for example, are exciting. We’re taking out a subset of patients with myelofibrosis and ET with the mutant CALR protein expressed on the surface of the cell and saying these patients may be best served by a drug that specifically targets that protein on the surface. That wouldn’t make sense for a JAK2-mutated patient. A JAK2-mutated patient may be best served with a small molecule inhibitor that specifically and selectively targets the JAK2 mutation, which is under investigation. You’re seeing these mutations inform the clinical development of very selective and specific drugs.
Andrew: I almost think of next-generation sequencing like a modern art painting with red and blue splattered. Hopefully, with some consultation with an MPN specialist, you can find out how current therapies or investigational ones apply to your specific situation.
The genes that are driving our illness may evolve, so what the story is today may not be the same story in a year, two, or three.
Andrew Schorr
How Do Doctors Choose the Right JAK Inhibitor for the Patient?
Andrew: You also mentioned how the genes that are driving our illness may evolve, so what the story is today may not be the same story in a year, two, or three. I’ve been living with myelofibrosis since 2011. It has been pretty stable and has been driven by JAK2 V617F. You mentioned the four current approved JAK inhibitors. They have nuances and it would seem like the choice of which one or sequencing, as you said, may vary by patient based on their situation. How do you know where to start?
Dr. Mascarenhas: We are blessed that we have choices today because it wasn’t always the case. We have opportunities to select drugs that may be best suited for different subsets of patients. For example, patients with low platelets or those who have cytopenic profiles may be best served by drugs that are easily delivered and have rationale in that patient population, namely pacritinib over ruxolitinib, in which we know platelets often limit the ability to dose up on ruxolitinib. Fedratinib, even more recently, had some data providing some more security there. We know that platelets could be a determinant of which one of the JAK inhibitors you’re going to select.
Most patients will start with ruxolitinib. It’s the oldest, most familiar, and probably still one of the best drugs that I’ve ever seen in this field
Dr. John Mascarenhas
Anemia is another one that’s gotten a lot of attention. It can be a major issue for patients at presentation and can worsen over time. Ruxolitinib is a great drug, but it can worsen anemia for some patients, so it may not be the best therapy in that setting. However, drugs like momelotinib or even pacritinib that inhibit ACVR1, a different protein, can improve anemia in some patients.
We use patient profiles to help us understand which drugs to choose from, but for the most part, most patients will start with ruxolitinib. It’s the oldest, most familiar, and probably still one of the best drugs that I’ve ever seen in this field in terms of achieving its goals. But again, not every patient fits the bill, so you can tweak that as needed.
Is Combination Therapy the Next Step in Building on JAK Inhibitors?
Andrew: A lot of studies talk about building on ruxolitinib and I’m sure there’s discussion about building on the other JAK inhibitors as well. Is a one-two punch necessarily better? Is that where you’re headed?
Dr. Mascarenhas: It’s definitely what we’re interested in asking. We have JAK inhibitors that are disposable and beneficial, but they’re not sufficient. We have other drugs that have demonstrated clinical activity and are rational and validated in preclinical models, which are systems that help us understand whether it makes sense to take it into a patient. These are drugs like pelabresib, imetelstat, navtemadlin, and selinexor, but each drug has a rationale and is active even as a single agent in these diseases.
The question being asked now is: is it better to combine the two drugs? If you look throughout oncology, most of oncology is treated with combinations of therapy. It’s very rare to find an oncologic disease, whether it’s of the blood or of the solid malignancy, where we use one agent and then if it fails, we go to a single subsequent agent. Usually, combinations of therapy are more potent together.
If you put agent X — whether it’s selinexor, navtemadlin, pelabresib, or imetelstat — together with ruxolitinib, which tends to be the first drug you pick, you tend to see better efficacy and, in some cases, even better safety profile when the two are combined.
Dr. John Mascarenhas
A term we often use is synergize. If you take either drug alone in a lab and expose them to malignant cells, the combination of the two drugs works better than one plus one — it’s almost one plus one plus one. You get better effects in terms of killing or limiting malignant cells. We hope to replicate in humans what we see in the lab or in mice that are engineered to have these diseases.
The data in the field has taken us towards the route of combining novel agents that have shown activity in the relapsed/refractory setting with a single agent as combination therapy upfront. Most of the data would point that if you put agent X — whether it’s selinexor, navtemadlin, pelabresib, or imetelstat — together with ruxolitinib, which tends to be the first drug you pick, you tend to see better efficacy and, in some cases, even better safety profile when the two are combined. The natural question is: if we take two active agents, can we get deeper responses? What does deeper response mean?
At the most superficial, it could mean more spleen reduction — that’s a regulatory endpoint — and deeper symptom improvements, but we’re looking at other biomarkers to understand if we’re hitting the target that we want. Are we getting deeper reductions in the driver mutation amounts of the variant allele frequency (VAF)? Are we reducing those numbers to suggest that we’re reducing the burden of disease in the bone marrow? Since we can’t measure it with a CT scan, are we reducing the disease in the bone marrow from other viewpoints like fibrosis? Is the amount of circulating abnormal cells reduced, something called the CD34+ cell number? Are we also reducing cytokines or inflammatory markers to a deeper extent?
We look at all of these biological aspects and hallmarks of the disease. Are we getting even more profound effects on these biomarkers, suggesting that we’re modulating the disease more effectively? At the end of the day, MPN patients want to live better and longer, but we look for markers early in trials to understand if we’re getting there.
Andrew: These are very powerful medicines. Will the quality of life be diminished if you add this other big gun? We want to live longer, for sure, but we want to live well. Could you talk about the power of the combinations but the worry about additional side effects?
Dr. Mascarenhas: I’ll give you a prime example where one plus one can equal three from an efficacy standpoint but might still equal one from a safety standpoint. A great example is the MANIFEST-2 study. We took JAK inhibitor-naive patients with myelofibrosis and randomized them to the standard of care, which would be ruxolitinib, plus a placebo and ruxolitinib plus the study drug pelabresib, which is an oral BET inhibitor, a very rational drug that modeling has shown us should synergize very nicely with ruxolitinib. It’s a double-blinded study, so the patients and investigators don’t know what the person is getting; only a computer knows.
The answer is it did. Efficacy-wise, if you look at 24 weeks, there were very profound reductions in spleen size and very profound reductions in symptoms. If you look at the biomarkers — the bone marrow fibrosis, the inflammatory cytokines, and the JAK2 mutation — the reductions were far more significant. Everything aligned with the superiority of the combination.
But most intriguingly, if you looked at the safety profile, there were fewer grade 3 and 4 treatment-emergent side effects with the combination than with the single agent. I’ve never seen that before where two active agents combined got almost double the clinical activity and less toxicity. I hope it’s reassuring for patients that double the action doesn’t mean double the trouble. You can combine some of these drugs, get good activity, and not make patients feel worse but even make patients feel better and have less toxicity.
We have to acknowledge that we add toxicity sometimes when we add combinations. Sometimes that toxicity is in the form of gastrointestinal (GI) toxicity or lower blood counts. Sometimes it’s a trade-off. Are we getting deeper responses that could lead to better outcomes where we could be getting more cytopenia and more need for monitoring, or even transfusions? Is that reasonable for a given individual? Could we be adding some nausea and diarrhea by doing that?
What’s key to this conversation is: are we adding these toxicities continuously or periodically when some of these (MPN treatments) are dosed? For example, navtemadlin is a very active drug. When we looked at the data, it was very clear that you could get some GI toxicity. It was mostly low-grade and easy to manage, but it’s there. The drug is dosed for seven days in a row out of 28 days. The toxicity was mostly relegated to days two and nine.
This is an esoteric or personal question: for any given individual, if that deeper response could lead to better outcomes, is that period where you may have GI toxicity worth it? From a human perspective, I’m not sure. From a clinical investigation, we’re interested in trying to understand: are we providing full good at a price or is it going to be good and no price? Nothing comes for free, but these are important questions.
We rely on the patient community to tell us. We don’t simply ask patients how they’re feeling. There’s also a much-validated tool that we use called Patient Global Impression of Change (PGIC), which is simple. It asks: if you put everything together, all the toxicities that might ensue and benefits that you’re noticing or being told by the physician that you’re getting, do you feel like you are the same, a little better, a lot better, a hell of a lot better, or a little worse? The PGIC is a very valuable tool because patients will tell you if the whole thing is worth it or not. It’s key to making sure that globally, they believe that they feel that what they’re doing and what they’re going through is a net benefit at the end of the day.
Transplant vs. Medication: Where Do We Stand?
Andrew: You’ve mentioned a number of these drugs that are investigational on top of the four approved JAK inhibitors. I’m 74, so I don’t plan to do a transplant, but some patients are younger and it’s been recommended they have a transplant. As you say, it can be curative. It’s a big gun. I lived in Seattle for a long time where they developed it originally and I knew about the morbidity and mortality, and that continues for some people. Where are we now with transplant versus all these other treatments?
My hope and my goal in my lifetime and my career would be that we ultimately develop therapies that make transplants unnecessary.
Dr. John Mascarenhas
Dr. Mascarenhas: Fortunately or unfortunately, transplant remains the only modality that we have for a cure and, as you’ve pointed out, it’s not for everybody. If you’re advanced in age or have too many comorbidities, a transplant may be more dangerous and detrimental than it ever will be helpful. I’m an advocate for transplant, but it’s for a select group of patients. Patients who go into transplant are moving into an aggressive type of therapy, but it has to meet the aggressive nature of the disease. You would never take someone who has a low-risk version of the disease right into transplant because you could cause more harm earlier on than good.
It’s a complicated discussion that involves understanding where the patient is from a disease perspective, the nature of their disease, their goals, understandings, and expectations, and making sure they have a donor and support system to do a transplant. I encourage that conversation. It’s important, but it’s not going to be for everyone.
My hope and my goal in my lifetime and my career would be that we ultimately develop therapies that make transplants unnecessary. At its core, transplant is taking immune cells and using them to ultimately get rid of the grandfather or grandmother cell, which is what we call the stem cell that started the disease process, and that’s an immune-mediated elimination of the cell. If we can figure out how best to do that with medicinal therapies that may not be as intense, then we could get to a point where transplant may become historic.
At Mount Sinai, that’s what a lot of our translational research has been based on, and Ron Hoffman and others have taught me this. It’s a stem cell-directed approach to shut down or eliminate that pool of cells that allows the disease to persist. Even after you wipe out cells with a transplant, those cells can come back. Using science and collaborating with patients, targeting stem cells with rational therapies is the only way we’re going to do that.
If it weren’t for patients who show up at tertiary care centers like ours, meet physicians like me, and sign consent forms to allow us to take their blood, bank it, and use it to understand the biology, then we wouldn’t be able to move the field forward. It’s the science that we derive from our patient’s cells and their generosity, and allowing us access to their data that help us understand how to make the next generation of therapies that will target that stem cell.
Andrew: I’m a big believer in that. I go to a tertiary center as well. I’m willing to give the blood and I’d recommend that to people.
Will PV or ET Progress to Myelofibrosis? What Can Be Done?
Andrew: We have people who may not have myelofibrosis. They may have polycythemia vera or essential thrombocythemia. As they learn, they know that there can be a progression from one to another. They’re not on a JAK inhibitor, but they might be someday. What do we know about slowing progression or even knowing who will progress?
Dr. Mascarenhas: We know that the disease is chronic and progressive. Progression is not just a fear of the patient; it’s a reality that we as physicians try to risk stratify. When we meet patients, we try to understand if there are risk variables that may help us predict what that timeline might be to make treatment decisions.
We believe the rate of progression and the reason patients progress is due to clonal evolution. Blood cells acquire more mutations and alterations that allow that cell population to behave differently and change the clinical picture. We use variables, like age, anemia, white blood cell count elevation, presence of circulating blasts, low platelet count, and high molecular mutations or chromosomal abnormalities, and enter them into prognostic scoring systems, which can be found online.
Many patients will find one of these prognostic scoring systems, plug their information in, and get a sense of where they fall in prognosis. But I will caution patients: if you ever do that or speak to a physician, you must understand statistics. Please don’t make the mistake of assuming that the median survival you see is what your lifespan is. It doesn’t work that way. It’s a framework to understand where in the spectrum of patients you fall and help us make treatment decisions about the most appropriate therapy.
Our approach will evolve over time to a more refined, risk-adapted approach where we use mutations to guide us not just in the selection of therapies but the timing of when to use those therapies. From seeing enough patients, I understand that progression is a real concern for ET, PV, and myelofibrosis patients.
Progression to Acute Myeloid Leukemia (AML)
Dr. Mascarenhas: The ultimate concern about progression is the potential to evolve into acute myeloid leukemia (AML). Sometimes you might hear it called the blast phase. That’s an aggressive form of leukemia that is problematic and is a fear factor for patients and physicians treating patients with MPNs.
To see if that’s a concern, we look at mutations like p53, a type of mutation, or the presence of circulating blasts or blasts, which are immature cells in the bone marrow. That information can help us get a sense of what the risk may be of a patient transforming into an acute myeloid leukemia.
MPN-related AML is molecularly distinct from de novo AML… Unfortunately, it’s often more resistant or refractory to the traditional types of therapies that we give in that setting.
Dr. John Mascarenhas
Are We Making Progress with Secondary AML in MPN Patients?
Andrew: There’s a percentage of MF patients who traditionally would progress to AML. There’s been progress in what you’d call primary AML and there have been a number of drugs developed, but secondary AML that would come out of myelofibrosis, I understand, has been more difficult. Where are we with that now?
Dr. Mascarenhas: You’re right. For what we call de novo AML, we have a plethora of different agents. They’re still not enough, but we have agents that can be quite effective in trying to control that type of AML and induce a response. Those agents typically are not as effective and don’t have a very significant impact on the disease process in secondary AML or AML that arises out of an antecedent myeloproliferative neoplasm, whether that’s ET, PV, or myelofibrosis.
MPN-related AML is molecularly distinct from de novo AML. It looks different from a mutation profile and behaves differently. Unfortunately, it’s often more resistant or refractory to the traditional types of therapies that we give in that setting. There’s no benefit to an AML patient who had an MPN previously by giving them induction chemotherapy unless that’s followed by a transplant. Every study tells us that doesn’t improve patient outcomes, so we know that’s not effective.
We rely on drugs like hypomethylating agents, like decitabine, decitabine+cedazuridine, or azacitidine. These epigenetic therapies try to induce maturation of these immature cells, which is what leukemia is, or immature cells that don’t know grow up. We try to induce that maturation process so that they die a more natural death. It’s less intense, but it’s more effective with this type of AML.
There are a lot of other therapies under clinical investigation. Some of them are molecularly directed therapies. We’ve run trials with IDH inhibitors, oral drugs that specifically go after mutations that can be present in AML that arose out of an MPN, which can be quite effective. Understanding the molecular profile of that AML could inform treatment decisions. The reality is that’s an AML that’s problematic. Our real goal is to stop the process from evolving to AML because we know that treating that is complicated.
Role of Interferon for the Treatment of MPNs
Andrew: We’ve had interferon for a long time. Where does that fall in?
Dr. Mascarenhas: Interferon, which is a biologic that has been around a long time, is an interesting compound. There is a lot of data in the lab and in patients who’ve been treated on trials, particularly polycythemia vera and essential thrombocythemia, that this drug can be anti-cloning. You can see changes in blood count numbers with ET and PV, and reductions in mutation levels that are driving mutations like the JAK2 mutation. Groups have shown that a reduction in those levels correlates with better event-free survival (EFS). Events are clotting, bleeding, progression, and death in ET and PV. We see the value in that setting. Interferon’s increasing in its utility and use throughout the world.
Myelofibrosis is a little bit different. There’s probably some value there, particularly in treatment-naive early forms of the disease or prefibrotic forms. Interferon is under active clinical investigation in a global study, which is taking patients with lower-risk diseases that don’t have so much complexity and fibrosis in their bone marrow and have seen so many different types of therapies. Interferon works best early on in the disease course. Once the disease gets too complicated and too advanced, it may not be that effective.
New Drugs Being Studied in MPN Treatments Clinical Trials
Andrew: We mentioned the ASH conference. There are the European Hematology Association (EHA) meetings and other meetings that you attend as well. You mentioned selinexor and navtemadlin. There’s nuvisertib, elritercept, and DISC-071, an anti-hemojuvelin antibody. Help us understand this constellation of what’s going on.
Dr. Mascarenhas: You’ll notice certain themes. For the uninitiated, these names are somewhat frustrating because they don’t resonate. If one were to think about themes, they make sense.
What we’re trying to do in translating the understanding of the biology from the laboratory to the clinic is targeting signaling pathways. These pathways are inappropriately activated in malignant cells that continue to tell them to proliferate, secrete inflammation, and do things that they’re not supposed to do.
We have very intricate, complex, and overlapping signaling pathways in many malignancies, including myelofibrosis. Multiple signaling pathways are inappropriately activated or hyperactivated. For example, JAK inhibitors inhibit the JAK-STAT signaling pathway and you’ll notice those drugs end with “nib.” Those are small molecule inhibitors that inhibit enzymes in those signaling pathways.
Nuvisertib is a small molecule inhibitor which is a selective PIM-1 kinase inhibitor. It inhibits an enzyme in a signaling pathway that is very relevant to the biology of the disease. It has nice data so far that shows a reduction in symptoms, particularly spleen size and cytokines, as a single agent in patients who’ve already been on a JAK inhibitor.
Other drugs may try to turn on mechanisms that have been turned off, like navtemadlin and selinexor. These drugs are focused on different pathways but with one unifying theme, which is the p53 pathway. It’s the master regulator of cell fate. In a normal situation, your cells would get cues to commit suicide if they were infected or corrupted in some way and that is governed by the p53 pathway, an intrinsic pathway that limits the cell’s life. The problem is malignant cells have co-opted that system and turned it off. They turn it off in different ways. Navtemadlin and selinexor, through having different mechanisms, act on trying to turn that pathway on and encourage that cell to die.
You’ll see drugs that get into the cell that affect pathways, drugs that get into the cell that try to turn on pathways, and drugs that try to use the immune system in different ways to go after the abnormal cell.
Dr. John Mascarenhas
Then you might see a drug like a calreticulin antibody, which inevitably will get a name. You’ll notice early on that it’s just letters and numbers and as the development goes on, it becomes funny names that don’t make any sense and then ultimately, when it gets to the commercial space, it will be a catchy name that could be marketed. The mutant CALR antibody drug by Incyte is a perfect example of what will be a “mab,” a monoclonal antibody, which is targeted at the CALR mutant protein expressed aberrantly on the surface of the cell and is a marker for those abnormal cells. What better way to attack an abnormal cell than to have a selective marker? It’s like a handshake. It’s not even a drug; it’s a peptide. It’s a protein that binds that and by doing that, internalizes that protein complex, and that leads to the death of that cell selectively.
Approaches like that will be very fascinating. Those are immune-based approaches. They have BiTEs (bispecific T-cell engagers) that multiple companies are developing, which introduce T cells in a myelofibrosis patient to the abnormal cell by having two ends of that antibody — one that goes after the CALR, for example, and the other one that goes after CD3 on a T cell — and introduces the two cells together so that that T cell does what it should have done in the first place: recognize and create a response to that abnormal cell.
You’ll see drugs that get into the cell that affect pathways, drugs that get into the cell that try to turn on pathways, and drugs that try to use the immune system in different ways to go after the abnormal cell. These are the general themes.
Considering a Clinical Trial
Andrew: Some drugs are being studied at different levels. What would you say about considering enrolling a patient in a trial once there’s a clear picture of their case? Is there one of these that could line up with that? Take us through the thinking and discussion between a doctor and a patient about considering being in a trial.
Dr. Mascarenhas: I have to acknowledge that being on a trial is scary. I hear this all the time: guinea pig. You feel as though you may be experimented on. I always try to caution patients from that mentality because if you have a disease like myelofibrosis that is frightening to have in itself and can limit the quality of life and maybe even the time that you have, then it warrants consideration to do better than the MPN treatment standard of care. The standard of care, which is JAK inhibitors, has benefits for sure, but it’s incomplete for many patients.
The consideration for trials hinges on the patient’s goals and desires. Clinical trials may not be reasonable for every patient. Geography influences clinical trials. If you live in a rural area, the distance to a center offering a clinical trial may preclude you from participating. We know other factors may also get in the way of joining clinical trials, like language barriers, cultural barriers, and financial barriers.
I would encourage any patient who sees a specialist and goes to a tertiary care center to at least seek a consultation. This will help them understand what someone who does this full-time thinks about their disease, to clarify or classify their disease, and what clinical trial options exist.
Trials should make sense. You have to ask questions so that you understand what you’re getting involved in.
Dr. John Mascarenhas
I’ve been around long enough to know ruxolitinib as INCB18424 before it was Jakafi. The drug was used in the clinic and we prayed that it was going to make a big difference and it did. It wasn’t enough of a difference, but it made a big difference. I remember those brave patients who were the first patients to get on that study. They set the tone for the whole field and the development of other therapies because of what they put themselves into. Those patients needed the therapy, but what they did allowed us to prescribe the drug to a lot of patients. It has a profound impact way beyond that individual.
The reality is patients go on a clinical trial for themselves and that is what it should be, but you end up helping the greater good at the same time. You have to feel comfortable with joining a clinical trial. You have to read the consent form. You have to ask questions. What does it involve? What are the potential toxicities? What would be the consequences of participating in a trial?
I feel very comfortable saying that in 2025, any trial I’m aware of that’s offered to patients is an informed trial. These are not trials where we’re taking a random agent off a shelf, throwing it over there, and hoping that it works. These are drugs and agents that are vetted, have a rationale, and go through many layers of pre-testing before they go into humans. You have to trust your physician because if your physician is working with you, then the trial that’s offered to you would hopefully make sense. Trials should make sense. You have to ask questions so that you understand what you’re getting involved in.
Getting the Test Drug vs. a Placebo
Andrew: You mentioned that people ask if they’re going to be a guinea pig. They also ask if they’re going to get the “good stuff.” In other words, they want to know if they’re getting a sugar pill or a placebo. Could you talk about that concerning these trials for drugs that are investigational now?
Dr. Mascarenhas: If you’re in a phase 3 study that’s randomized, a computer randomizes you to arm A or arm B. Arm A may be the active clinical trial agent and arm B could be a placebo, but that has to be disclosed in a consent form. That’s essential. You can ask the physician, “Do I get the study drug or is it going to be randomized? Is it going to be a placebo?”
But a placebo is not always bad. For example, in the MANIFEST-2 study or what’s currently enrolling in the SENTRY study with selinexor, you get randomized as a JAK inhibitor-naive patient with myelofibrosis to either Jakafi plus a placebo, so you’re still getting active therapy, versus Jakafi plus selinexor.
It would be unethical to give nothing to someone who needs treatment.
Dr. John Mascarenhas
The idea is: can we build upon the success of the standard of care? That becomes important. It would be unethical to give nothing to someone who needs treatment. It’s not unethical and it’s practical to give someone who needs treatment the standard of care plus a sugar pill, which is blinded, versus the standard of care plus the study drug to ask which treatment regimen is better.
You can ask your physician, but you’ll notice that most trials will allow crossover and that becomes important. If you get the placebo, which only the computer knows, at some interval, most trials will allow you to cross over to the active compound. It becomes a question of: do I get the active combination upfront or is it delayed? That’s a nuance that I want to stress. If you’re participating in a phase 1 or phase 2 study, you’re going to get the drug. Those are not placebo-controlled studies. You should always be getting the drug in those settings.
What If I Have Other Chronic Conditions?
Andrew: Some of us have other conditions, like diabetes, high blood pressure, or a heart condition — for me, it’s chronic lymphocytic leukemia, which is fortunately pretty well-controlled— but we’re often excluded from trials depending on the condition. We understand the worry of the investigators. Is our data clean? Can you extrapolate from that? Can you talk about exclusion criteria and compassionate use?
Dr. Mascarenhas: The reality is there are biases in the way we do trials. We avoid patients who may be inappropriate and these are real patients who might be in need, but the trial may not be appropriate. These can be patients who have very significant kidney or heart dysfunction or a competing malignancy. Interestingly, CLL, which is more frequently seen in patients with MPNs, has different stages. Sometimes a study will allow patients who have a very indolent type of CLL to go on the study. But often, trials will be very particular, especially registration studies where they’re going for approval.
The last thing a study needs is to have confounding data where they’re unclear whether they’re making something unrelated to the myelofibrosis worse or that condition is making the assessment of the drug harder to appreciate. There is a tendency to exclude patients who have extremes of comorbidities so not all comorbidities. If you have grade 1 heart failure, that’s often allowed in a study because that’s a reality of life.
There is a very strict inclusion and exclusion criteria, what we call eligibility criteria, which determine the ability to put someone on a study. Most of those are there for safety reasons to avoid causing additional problems with a drug because it’s not intended for that reason. Another reason why they’re there is if you have a very messy, patient population with lots of diversity and heterogeneity in organ function, etc., it can be very difficult to assess whether the treatment we’re giving is safe or effective. To some extent, out of necessity, we create some homogeneity out of the heterogeneity.
Compassionate use… requires a lot of regulatory oversight, approval, and effort, which is not provided by a company or anyone.
Dr. John Mascarenhas
Andrew: How about compassionate use? If somebody would otherwise be excluded, could their doctor make a plea for a late-stage patient?
Dr. Mascarenhas: Compassionate use is often not that compassionate. It’s trying to get access to a drug under an investigational new drug (IND) and creating a protocol for one individual. What is not always appreciated is while that sounds great, many steps go into that and it requires a lot of regulatory oversight, approval, and effort, which is not provided by a company or anyone. It’s the physician and whatever team members he can assemble to try to do that.
Although compassionate use is an opportunity to get a drug, it’s often an opportunity plagued by the realities of a very cumbersome bureaucratic system that doesn’t make it very easy and timely to get to that drug. Although it’s there and in some cases helpful, it’s not always practical or realistic for people to get compassionate use and sometimes the access to those drugs is restricted by the FDA and/or the sponsor.
But compassionate use can sometimes be an opportunity to get a drug that wouldn’t otherwise be eligible and that’s key. If there’s a trial that allows the patient to get access, they often will not provide compassionate use because it would be felt unethical to allow someone to get access to a drug while all other patients would have to go through the normal routine of the clinical trial. This has to fit very strict criteria and is not always achievable.
The Future of Treatments for MPN Patients
Andrew: We have ASH in the rearview mirror. You have other conferences during the year and you’re speaking at a number of them. You’re actively involved in research and seeing patients as well. I want to get where your head’s at as far as promise in the field, how you feel about it, and what people can do about it.
Dr. Mascarenhas: We are way further ahead than we were in 2005, 2010, and 2015. I’ve watched the field grow in terms of our understanding, the amount of attention and support that’s provided to this rather small area of hematology from the federal government in terms of NIH grants — in which we indulge in getting to try to help move the field forward independent of pharmaceutical interests — but as well as pharmaceutical interest and philanthropy. They all help grease this machinery of translational research and understanding. We have cadres of smart, well-intentioned PhDs, MDs, and MD-PhDs that are helping us understand the biology and that is directly translating into the clinic to help us fine-tune our treatment.
We’re trying to understand how to get access to and develop multiple therapies that could be used in different subsets of patients or different combinations.
Dr. John Mascarenhas
You look at ASH or EHA and see endless abstracts of agents that we didn’t even know about or targets that we didn’t even understand 10 years ago. I have to believe that’s going to translate ultimately to better therapies and multiple therapies. I don’t think it’s going to be one therapy fits all. We’re trying to understand how to get access to and develop multiple therapies that could be used in different subsets of patients or different combinations and that is something that I do feel optimistic about. I would say we’re moving forward in 2025 and beyond in rational combinations and allowing science to drive the advancements.
You’ve known me for a long time. I always feel positive. I walk to work and I’m enthusiastic every day I come in because I believe in the mission. We’re making strides. I see it in the patients that I treat, but I believe it for the future.
What Patients Can Do to Alleviate Symptom Burden
Andrew: For a patient who has significant anemia, declining platelet counts, an enlarged spleen, or whatever symptom they’re experiencing, what can they do that could make a difference in the short term?
Dr. Mascarenhas: If you’re having symptom burden, particularly if it’s interfering with your quality of life and activities of daily living, you should see a physician who specializes in hematology and, ideally, someone who has expertise in this area.
The longer one delays starting therapy, the less likely that therapy will be effective and that the effects of that therapy will be durable.
Dr. John Mascarenhas
A JAK inhibitor is the front-line therapy to try to address those aspects. It doesn’t preclude one from looking at clinical trials that might even be combinations upfront of a JAK inhibitor plus an active agent to see if one can get even better, deeper, and earlier responses. But at the very least, a JAK inhibitor to try to address symptoms because you don’t get extra points for suffering through symptoms. It’s harder to rescue if one delays treatment. The data is very clear about that. The longer one delays starting therapy, the less likely that therapy will be effective and that the effects of that therapy will be durable.
Andrew: You may live at a distance from one of the major centers where there is an MPN specialist, but there are MPN specialists. You refer to cadres of researchers and physicians who are working in this area and it makes sense to have a consultation with somebody like Dr. Mascarenhas at Mount Sinai or my doctor, Dr. Jamieson at UC San Diego. Fortunately, many others are studying this and working on it and understand these nuances, so you get personalized care for where you are now and where you may be headed.
Final Takeaways on MPN Treatments
Andrew: This has been a helpful discussion. Is there anything you wanted to add, John, that we didn’t cover?
Dr. Mascarenhas: We covered all the major points and I conveyed my continued optimism. One boon that we have is it’s a very collaborative field. When you look at the abstracts, trials, and studies, you will see all the names that are listed, which reflects our collaborative nature. These are rare diseases. You can’t work in a silo. We’re all friends and colleagues. We all have a unified mission. We’re focused on that as an international team and that’s why I remain enthusiastic that we’re going to make the progress.
Andrew: Thank you for your collaboration and people. I’m seeing a lot of younger physicians and scientists interested in this area, so that gives us a great deal of hope. Dr. Mascarenhas, thank you for your devotion to us. We appreciate your time. We’re all bonded in this together. Remember: knowledge can be the best medicine of all.
Conclusion
Tiffany: That discussion [ on MPN treatments ] was the definition of news you can use. Thank you, Dr. Mascarenhas and our patient advocate and moderator Andrew, for taking the time out of your busy schedules to keep The Patient Story community informed. If you are a patient, caregiver, partner, or advocate, consider being a voice leader in your community or with us at The Patient Story.
To be empowered is to be inspired. We want you to make informed decisions about your care and that includes being educated about the latest treatment options. Thank you again to our sponsors, Sobi and Incyte, for their support of our independent patient program and to all of our promotional partners. Until next time, I’m Tiffany Drummond, signing off and, on behalf of The Patient Story, thank you for watching.
Your MPN, Your Journey: How New Discoveries Will Impact Personalized Care
Hosted by The Patient Story Team
Dr. John Mascarenhas (Mount Sinai) and patient advocate Andrew Schorr share the latest breakthroughs in MPN care. Explore personalized treatments, cutting-edge therapies, and groundbreaking research that’s changing how MPNs are treated. Learn how new discoveries can improve your treatment options, help manage side effects, and enhance your quality of life.
Small Changes, Big Impact: Easing Myeloma Treatment Side Effects
Multiple myeloma advocate Valarie Traynham is joined by Donna Catamero, Associate Director of Myeloma Research at the Icahn School of Medicine at Mount Sinai and a nurse practitioner specializing in the treatment of multiple myeloma patients, and Abbey Reiser, a dietitian/nutritionist and board-certified specialist in oncology nutrition from the Ruttenberg Treatment Center The Tisch Cancer Institute, to share practical strategies for handling side effects, optimizing nutrition, and improving quality of life.
Small Changes – BIG IMPACT: Easing Multiple Myeloma Treatment Side Effects
Hosted by The Patient Story
Hear from multiple myeloma advocate Valarie Traynham and leading experts from Mount Sinai as they share practical strategies for handling side effects, optimizing nutrition, and improving quality of life.
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey began as a caregiver 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’m committed to helping others, 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’ve got you covered with real-life patient stories and educational programming with subject matter experts. I’m your personal cheerleader 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 thank our sponsor, Johnson & Johnson, for its support, which helps us to host more of these programs for free to our audience. The Patient Story retains full editorial control over all content. We also thank all of our promotional partners for their support. Because of them, our programming reaches the audience who needs it. I hope that you find this program helpful, but please keep in mind that while the information provided is encouraging, engaging, and insightful, it is not a substitute for medical advice.
Donna Catamero ANP-BC, OCN, CCRC
Abbey Reiser MS, RDN, CDN, CSO
Valarie Traynham Patient Advocate
We are joined by two experts from The Tisch Cancer Institute at Mount Sinai in New York. First up is Donna Catamero, Associate Director of Myeloma Research at the Icahn School of Medicine at Mount Sinai and a nurse practitioner specializing in the treatment of multiple myeloma patients. We also have Abbey Reiser, who has a unique role as part of the multidisciplinary team at the cancer institute’s Ruttenberg Treatment Center. She is a dedicated dietitian/nutritionist and is also board-certified as a specialist in oncology nutrition. Valarie Traynham, a multiple myeloma survivor and thriver and an inspiration to many, will moderate this conversation. Your journey is one of inspiration. I’m excited about this engaging discussion.
Valarie Traynham: I’m a myeloma and breast cancer thriver. I’ve been on the myeloma journey for about nine years and the breast cancer journey for about five years. I can understand the issues when it comes to treatment side effects, so I am so excited to be here and have this conversation with these two ladies.
Difference Between Relapsed and Refractory Multiple Myeloma
Valarie: Donna, can you explain the difference between relapsed and refractory disease? I get this question a lot and it can be confusing to some of the patients.
Donna Catamero: Most patients are both relapsed and refractory. Relapsed is when a patient has an initial response to therapy, so they’re either in complete remission, partial remission, or very good remission, and then their disease starts coming back, which means they’re relapsing from their response.
Refractory is when patients are on therapy and start to relapse, so that means they’re refractory to that therapy. Most myeloma patients are on continuous therapy, so when they start to relapse, they’re going to be a relapsed patient and then refractory to the current treatment thereon. Most patients past their first line of therapy are going to be relapsed/refractory.
Common Symptoms of Relapsed/Refractory Multiple Myeloma
Valarie: When we think of relapsed/refractory, what are some of the common symptoms? Is it just like when we are first diagnosed with myeloma? Is it some of those same symptoms or is it totally different when it comes to the relapsed/refractory setting?
Donna: Patients fall into two categories. Some patients have a biochemical relapse, which means only their numbers are going up. We monitor myeloma patients through their labs. We look at their protein levels and see an increase, but otherwise, the patient feels fine. On paper, we see that their cancer is coming back.
On the other hand, a patient can have a symptomatic relapse, so they’re either more anemic (A), have new bone disease (B), new renal (R) insufficiency or kidney disease, or elevated calcium (C) in their blood. These are the typical CRAB symptoms of myeloma, so they either have those or none at all and we’re seeing the cancer in their blood work.
Current Treatment Options for Relapsed/Refractory Multiple Myeloma
Valarie: What are some of the current treatment options for relapsed and refractory multiple myeloma?
Donna: The landscape of treating relapsed/refractory myeloma is so quickly evolving. We have so many new therapies. In the past five years, we’ve had so many approvals for multiple myeloma patients in the relapsed setting, so it’s a very exciting time.
We have more targeted approaches with proteasome inhibitors, like kyprolis and bortezomib, that we can use in the relapse setting. We have more novel mechanisms of action, so more targeted towards the immune system, like bispecific antibodies for patients who’ve had four prior lines of therapy and then CAR T-cell therapy, another immunotherapy, which is very exciting for patients. It was initially approved for patients who had four prior lines of therapy, but now we can use CAR T-cell therapy in patients after one prior line of therapy.
Valarie: That’s awesome. I always get excited when I think of the therapies that we have since I’ve been diagnosed and even the therapies in the pipeline. It’s given us so much hope as patients.
Easing Multiple Myeloma Treatment Side Effects
Valarie: Abbey, how can a well-balanced diet specifically benefit multiple myeloma patients undergoing treatment?
Abbey Reiser: Diet recommendations often change throughout treatment based on how patients feel and if they experience any side effects that affect their appetite and/or their ability to eat. For multiple myeloma patients who are feeling an eating well, the nutrition recommendations are the same for most other cancers, which is also consistent with the recommendations for the general population.
Plant foods, like fruits, vegetables, whole grains, beans, nuts, and seeds, contain a variety of cancer fighters, including vitamins, minerals, fiber, and phytochemicals. Phytochemicals are naturally occurring compounds in plants that have the potential to stimulate the immune system, reduce inflammation, and fight infection, making these foods especially beneficial for patients to consume while undergoing treatment.
Protein can also help to boost the immune system, promote healing, and build cells, tissues, and muscles. We encourage choosing a variety of lean, animal-based and plant-based proteins, including chicken, fish, turkey, tofu, beans, and nuts. The current plant-based eating model recommends filling two-thirds or more of your plate with plant-based foods and one-third or less of your plate with animal protein to create a well-balanced meal.
Valarie: Are there certain nutrients or dietary patterns that can help manage side effects like fatigue and anemia?
Abbey: Definitely. Patients who experience side effects from treatment may find it difficult to follow a plant-based diet to a tee. Fatigue is one of the most common symptoms among myeloma patients and one of the most common side effects of treatments. I typically recommend staying as active as you can, eating often, and adequately drinking plenty of fluids. Try planning ahead by asking for help with meal prep, trying meal delivery services, and keeping ready-to-eat snacks on hand, like nuts, granola bars, or pre-made protein shakes.
Anemia is commonly caused by the disease, treatments, or kidney dysfunction caused by multiple myeloma and cannot be improved by diet. However, nutritional deficiencies such as iron, B12, or folic acid can also be a cause, and this can be improved by supplementation either orally or by injection. It also couldn’t hurt for patients with these deficiencies to increase their intake of foods rich in these vitamins and minerals, such as turkey, sardines, lentils, and beans for iron, lentils, beans, and spinach for folate, and fish and dairy for B12.
Typically, I encourage patients to talk to their doctor about the cause of and plan of care for anemia before making any significant changes to the diet or starting a new supplement.
Eating the Rainbow
Valarie: As a patient, we’re often told to eat the rainbow. Is that something you recommend?
Abbey: Yes. If their appetite is good, they’re feeling well, and they can eat a variety of fruits and vegetables, I’m all for it because they’re going to get different nutrients from different colors. That’s definitely a recommendation that’s still staying strong to this day.
The Role of Hydration in Managing Kidney Function and Oral Health
Valarie: We often hear about the role of hydration. Can you discuss that role in managing side effects of multiple myeloma treatment, such as kidney function and even oral health?
Abbey: Staying hydrated during myeloma treatment is essential, especially because dehydration can worsen kidney function, which is a common concern due to the disease’s impact on the kidneys. Drinking sufficient fluids helps to flush out waste products and manage potential complications, like high calcium levels, which can occur with myeloma. Bispecific treatments, like talquetamab, can cause oral toxicities including dry mouth, mucositis, and taste changes, and good fluid intake plays an important role in managing these side effects.
I recommend aiming for at least 8 to 10 8-ounce glasses of low-sugar fluids per day. Plain water is the gold standard and the preferred beverage for hydration, but other beverages such as seltzer, decaf tea, coconut water, and lower-sugar electrolyte drinks can also promote adequate hydration. Caffeinated beverages, like coffee, tea, and colas, as well as alcohol may worsen side effects like dry mouth, so I recommend limiting those.
Foods and Drinks That Multiple Myeloma Patients Should Avoid
Valarie: Are there any specific dietary considerations or restrictions that myeloma patients should be aware of? You mentioned alcohol and caffeine, but are there certain foods or drinks that they should strictly avoid?
Abbey: A couple of limitations apply to every type of cancer. We recommend limiting red meat, such as beef and pork, to less than 18 ounces per week, and avoiding processed meats, like bacon and sausage, as much as possible.
I also recommend limiting processed foods that are high in fat, starches, or sugars, such as chips, cookies, candies, cakes, and sugary cereals. Patients should also limit sugar-sweetened beverages, like juice and soda, and avoid or limit alcohol. General guidelines recommend no more than two alcoholic beverages per day for men and one drink per day for women, but I typically defer questions regarding alcohol to the doctor.
Multiple myeloma and its treatments can weaken the immune system and increase the risk of infection, which can make patients more susceptible to foodborne illness, which we often call food poisoning. Therefore, it’s important to follow food safety guidelines while on treatment in an effort to reduce infection risk. General tips include washing your hands well, separating ready-to-eat food and raw meats, checking expiration dates, refrigerating leftovers immediately, and avoiding high-risk places, like salad bars and buffets, and high-risk foods, like raw and rare meats, runny eggs, unpasteurized dairy, sushi, and unwashed fruits and vegetables.
I also discourage the use of supplements, unless you have a deficiency or are told otherwise by your medical team. Supplements don’t offer the same benefits as eating whole foods. They’re typically not regulated by the FDA, and research tends to be limited in terms of how they may interact with treatment. For patients who are hoping to start taking a supplement, make sure to check with your doctor before doing so.
Avoiding Green Tea Supplements
Valarie: What advice can you provide about green tea? With some treatments, they say to avoid green tea on the day that you’re getting treatment and a few days after. Is there anything you can say about that?
Abbey: That’s usually discussed if they’re on bortezomib. Donna, you and I talked about this before. I believe it’s the green tea supplement that they need to avoid entirely.
Donna: It’s the high-dose green tea extract that’s available as a supplement, which is contraindicated when on a regimen containing bortezomib. I advise patients who love green tea to not consume it on treatment days. The beverage itself is fine for patients. It’s the supplement that can get patients into trouble.
Managing Weight Changes
Valarie: How can a nutritionist help patients manage weight changes? I experienced a lot of weight gain taking steroids. Some patients deal with weight loss, which can be a common side effect of treatment. What can we do from a nutrition standpoint?
Abbey: Treatment side effects, especially oral toxicities, often lead to decreased appetite and weight loss. If a patient is experiencing unintentional weight loss, I recommend having small, frequent meals every 2 to 3 hours and choosing high-calorie foods as tolerated. I will emphasize healthy fat sources, like nuts and nut butters, avocado, and olive oil, because fat contains more calories per gram than proteins and carbs. I also encourage them to make homemade smoothies and shakes, and to drink oral nutrition supplements because sometimes it is easier to drink your calories than eat them when your appetite is low.
Low-impact physical activity as tolerated can also help to increase appetite and maintain muscle mass. For patients who are struggling to eat and whose appetite has been consistently low, it could be worth asking the doctor if starting an appetite stimulant is appropriate.
On the other hand, I also see patients experience weight gain while in treatment. Oftentimes, this is in part due to steroids or fluid retention. To maintain a healthy weight, we recommend following a Mediterranean-style, plant-based diet, which emphasizes having lots of fruits and vegetables, lean proteins, whole grains, and legumes. We also emphasize watching calorie intake, monitoring portion sizes, and eating slowly and mindfully. It takes 20 minutes for your brain to get the message that your body is getting food before you stop feeling hungry. The slower and more mindfully you eat, the sooner you should realize that you’re full.
I also recommend being physically active as tolerated, specifically to engage in at least 150 minutes of moderate-intensity physical activity per week, which can equate to 30 minutes, five days per week. Moderate-intensity physical activity could be a brisk walk or biking.
Common Skin Conditions Multiple Myeloma Patients Experience
Valarie: I’ve dealt with severe dry skin and hyperpigmentation. What are some of the common skin conditions that multiple myeloma patients experience as a result of treatments?
Donna: A lot of multiple myeloma treatments are subcutaneous injections, which means they go right underneath the skin, so we often will see injection site reactions. Around the area where we administered the medication, it gets inflamed, red, and itchy.
Another side effect we see is dry skin. For patients who experience this and if I know a regimen will cause dry skin, I tell patients to use heavy barrier moisturizing creams at the initiation of therapy, especially during long winter months. Our skin dries out fairly quickly with the heat. You want to use heavy barrier creams to help retain the moisture and start at the initiation of therapy.
When we see on-target, off-tumor side effects with talquetamab, for example, the skin on the palms of the hands and the soles of the feet start to peel. These side effects can be self-limiting and we can manage them well. We use lotions, like ammonia lactate, on the area. We’ll do that twice a day and this typically will resolve in 2 to 3 weeks for patients.
We also see nails that get brittle and peel. Unfortunately, there isn’t something we can give patients to eliminate brittle, peeling nails, but we can suggest nail polish hardener lacquers to make the nails stronger so they’re less likely to break. We recommend cuticle oil around the cuticle bed. We look for signs and symptoms of infection because we don’t want to have any nail infections.
Another side effect that patients can experience is a whole-body rash or a localized rash. Depending on the size of the rash, we can manage it quite well with topical steroids or lotions. If a rash is more generalized, we’ll add a steroid taper. A course of steroids over several days will tamper down the whole-body rash, which will typically be resolved in several days.
A rash can be itchy or a patient could feel itchy in general, so we can use antihistamines for several days to help with any itchiness. If the itchiness is drug-induced and depending on the severity of the skin reaction, I’m going to hold off on the medication until these symptoms resolve before resuming therapy. If the rash is severe enough, I would consider either a dose reduction or a look at how frequently treatment is administered.
Valarie: Do you often refer to a dermatologist or treat them within your cancer center?
Donna: Early on, when we look at these new treatment modalities, we weren’t typically seeing these side effects. We work very closely with our dermatology colleagues, but we can manage these side effects quite well. I will definitely refer to our colleagues in dermatology, but for the most part, we can manage these symptoms quite well within our own practice.
Bispecific Antibodies for Relapsed/Refractory Multiple Myeloma
Valarie: Bispecific antibodies are emerging as a promising treatment option for relapsed/refractory myeloma. Donna, can you explain how these antibodies work? Have you seen an increase in this approach with patients?
Donna: This is a new and very exciting treatment modality. We had several drug approvals within the past few years with this new class of drugs. It’s similar to daratumumab where it will bind to a receptor on the myeloma cell. One arm of the bispecific antibody will grab the myeloma cell and the other arm will grab the receptor of a T cell.
Our T cells are little soldiers of our immune system. T cells will do surveillance and get rid of anything that looks bad in our system, so that includes infections and cancer cells. What a bispecific antibody does is grab onto the myeloma cell, grab onto the T cell, and bring that T cell close to the myeloma cell so that the T cell can recognize the myeloma cell and kill it
In essence, it mimics the mechanism of action of CAR T-cell therapy, but the benefit of a bispecific antibody is it’s off the shelf, so there’s no downtime unlike waiting for manufacturing CAR T cells. If I need to start a patient tomorrow, we can initiate therapy quickly. We’re harvesting the patient’s immune system to attack the myeloma cells. This is an exciting new treatment approach.
Common Side Effects Associated with Newer, Targeted Therapies
Valarie: As a patient, I’m very excited to hear about bispecific antibodies. What are some of the common side effects associated with these newer targeted therapies?
Donna: We’re activating that immune system, so the immune system gets revved up and what happens is it releases cytokines. Cytokines are little immune substances that can cause havoc. It can affect everybody’s system. Typically, when a patient gets a bispecific antibody, they’ll have a fever. This can progress to low blood pressure or difficulty with breathing, but these are so well-managed now.
The patient will typically complain of a fever, almost like when we get our flu shots where we feel a little achy and get a low-grade fever. As a provider, I know this patient is probably having cytokine release syndrome (CRS). The immune system is getting revved up, so I will tap the brakes. We have treatments that will simmer down the immune system and within 24 to 48 hours, the patient’s symptoms will resolve and allow us to continue treatment.
We try to mitigate this side effect by giving premedication, so we’ll give acetaminophen, diphenhydramine, and some steroids, but the majority of patients are going to experience CRS. Typically, we manage this inpatient, but more and more institutions are learning to manage these side effects as outpatients. We monitor patients very closely by checking their vital signs and intervening at the first sign of a fever. If a patient has a drop in their blood pressure or difficulty with breathing, we intervene very quickly.
The majority of patients will have cytokine release syndrome and to a much, much lesser extent, we see neurotoxicity. If patients have cytokine release syndrome, typically we see neurotoxicity immediately after. A patient might present with some confusion and maybe a little disoriented. They can name the hospital and their name, but instead of saying that it’s winter, they’ll tell you it’s spring.
Also, we see patients with a change in their handwriting and this can be quite drastic. Before starting these therapies, we obtain a handwriting sample and monitor the handwriting sample throughout treatment. We’ll see a change from one 12-hour shift to the next where a patient will write a beautiful sentence and then a few hours later, will scribble across the paper. This patient is experiencing a neuro event. This can be scary, but this is reversible. We manage this very well. This is self-limiting, so it won’t reappear.
Care partners are very important when we give these types of treatment because if the patient is at home, they might not understand that they’re confused. It’s very important to have a care partner to monitor the patient to see if there’s any alteration in their mental status. We manage this quite well with steroids.
Specific Strategies for Managing Cytokine Release Syndrome and Neurological Side Effects
Valarie: Are there specific strategies for managing cytokine release syndrome and neurological side effects?
Donna: To mitigate some of these potential side effects, like cytokine release and neurotoxicity, we do two things. First, we’re going to do a step-up dosing approach. We’re going to give a small dose for that first dose, a slightly higher dose for that second dose, and then the full dose. We ease the patient into that medication.
The second thing we do is to have premedication on board to mitigate the severity. Most patients are going to have cytokine release syndrome, but it’s typically mild like a fever, which we can manage quite well. Neurotoxicity happens in a very low percentage. Less than 7% of patients will have this neurological event. Step-up dosing and medications can help, but that’s something we will manage when the symptoms arise.
Dietary Changes to Help Manage Loss of Taste
Valarie: Abbey, we talked about diets and how having healthy snacks can help manage the side effects. For patients experiencing loss of taste, how can they change their diet to help manage that particular side effect?
Abbey: Taste change is one of the most common side effects that I talk about and it’s definitely one of the most difficult to manage. There’s no one-size-fits-all approach, not one miracle food that everyone enjoys, and no medication that provides total relief. It’s tough for patients to find foods they enjoy, let alone tolerate.
Something I emphasize to everyone, regardless of their experience, is good oral hygiene. Patients are often prescribed a mouth rinse, but if this doesn’t help, I recommend trying a homemade rinse made with baking soda, salt, and water, or an over-the-counter, alcohol-free mouthwash. Brushing the tongue and teeth after meals and before bed is also important to keep the mouth clean. It also doesn’t hurt to try sugar-free gums or mints to see if that improves any unpleasant taste in the mouth.
When patients describe taste changes, I hear a wide range of statements, including everything tastes too bitter, too sweet, too metallic, has no taste, tastes like cardboard, or everything tastes bad. If food tastes too bitter or too sour, I recommend adding something sweet to food, like honey or fruit. Or, if food tastes too sweet, try adding an acid, such as vinegar, lemon, or other tart, tangy, or acidic flavors. If everything tastes metallic, I recommend using nonmetal utensils and cookware, such as plastic, glass, or ceramic. Try fresh or frozen foods over canned and serving meat cold or at room temperature.
For bispecific therapies, the most common statement is everything tastes bad or has no taste. For this, I emphasize the importance of experimenting with different flavors, textures, temperatures, herbs, spices, seasonings, and sauces because you never know what might work for you. I often hear that adding acids like lemon, lime, vinegar, and tomato can make foods more enjoyable. I’ll often recommend adding fresh lemon or lime juice during and after cooking, and adding citrus to water, such as lemon packets or sliced lemons and oranges, if plain water tastes unpleasant.
Taste is the combination of not only the taste but also the smell and touch of food. If you can’t get any pleasure from taste, don’t underestimate the power of texture and smell. Soft, moist foods like oatmeal, soups, and mashed potatoes are usually more tolerable since they’re easier to chew and swallow, which means they spend less time in your mouth.
Smoothies and oral nutrition supplements are my go-to recommendations because they’re quick and easy ways to get in calories. Protein and smoothies allow a patient to experiment. Fruit is one of those foods that are often tolerable, so I recommend blending different fruits into smoothies to see if that makes them easier to get down. Animal proteins tend to be tough for patients to tolerate, so I typically recommend choosing softer animal proteins, like egg salad or fish, or marinating and cooking meats in acidic dressings or sweet juices.
Many patients report that they maintain their sense of smell despite losing their taste. I’ve had a patient say that certain foods, like cucumbers, cantaloupe, and coffee smelled good, which helped them taste good too, so it’s definitely worth experimenting in this way.
An important point that patients should take away when it comes to taste changes is that everyone is different. A recommendation that works for one person may not work for the other, so it’s important to keep trying and retrying foods because you never know what may end up working for you. Even though everyone is different, if patients are experiencing these side effects, they should know that they’re common and they’re not alone.
Coping with the Emotional Challenges of Relapse
Valarie: Let’s talk about the emotional side, such as anxiety and depression. Donna, how can patients cope with these types of challenges?
Donna: In the relapsed/refractory setting, every relapse causes a lot of anxiety and fear. When starting a new treatment, there’s a lot of fear, which can then increase anxiety and can lead to depression. Having a good support network is important for patients. We’re very fortunate in my institution to have a wonderful social work team that can help patients. We have support groups. Support groups work for some patients but not for others, so have care partners on your team to help patients through these challenging times. Each relapse becomes challenging for patients. The good news is that we do have great therapies for patients to provide support for patients to get through their therapies.
Abbey: From a nutrition standpoint, a patient experiencing side effects from treatment that affect their ability to eat can significantly impact a patient’s quality of life. It can cause patients to feel isolated because it’s hard for anyone to fully understand what they’re going through. On top of that, they might feel pressure from family and friends to eat more even when they don’t feel well and I’ve seen that cause resentment. Eating is such a social and cultural activity, and many patients feel like they don’t have a place at the table to help cope with these challenges.
I encourage patients to ask for a referral to a dietitian. Our job is to provide tips and tricks to help patients eat despite these side effects. I also encourage them to try to continue living their lives as much as possible, to go out to eat, and to attend social events when they have the energy and when it is safe for them to do so. When people are experiencing side effects and they go out to eat, they feel embarrassed or afraid to advocate for themselves. I encourage them not to hesitate to ask for their food to be prepared a certain way if it makes it easier for them to eat. If they want to bring their own food when they go out, that’s completely okay. I’m sure their friends and family would prefer to see them enjoying their meal and feeling supported, rather than feeling embarrassed or ashamed.
Valarie: As a patient and as somebody who’s been on that side of it, you have to look out for yourself. If that means taking something to a restaurant to spend time with your loved ones and be able to enjoy a meal, then do it.
Support groups are not for everyone, but there’s also one-to-one support available. You can talk with a myeloma coach or a mentor angel in various programs. Know that you’re not alone as you’re dealing with these side effects. Others are going through them as well and you always have someone to support you.
Final Takeaways
Valarie: Thank you, Donna and Abbey, for taking the time to speak with me and The Patient Story audience. Do you have any final remarks?
Donna: We have some great therapies we can offer patients. The important thing is getting patients through that therapy. There are side effects, but we’re going to help manage those so that patients can have the best possible outcomes.
Abbey: I encourage patients who are experiencing any side effects to speak up, advocate for themselves, and let their teams know. The sooner their team is aware, the sooner they can provide supportive care or treatment to help manage those side effects. If the side effects they experience make it difficult to eat, don’t hesitate to ask for a referral to a dietitian if their team has not referred them to one already.
Valarie: Yes, I agree with you wholeheartedly. Speak up and don’t suffer in silence. There’s no need for that.
Conclusion
Tiffany: Thank you again, Donna, Abbey, and our patient moderator and advocate Valarie, for taking the time to discuss mitigating side effects, especially to Valarie for sharing her myeloma experience. I am grateful that she shared her story with us. It takes a village and I know that your story, Valarie, will resonate.
It is important to be empowered so that you and your caregivers can make informed decisions about your care. That includes being educated on the latest on the side effects, mitigating those side effects, and getting the support that you need.
Thanks again to our sponsor, Johnson & Johnson, for supporting our independent patient program and to all of our promotional partners. Until next time, I’m Tiffany Drummond, signing off and on behalf of The Patient Story, thank you for watching.
Small Changes – BIG IMPACT: Easing Multiple Myeloma Treatment Side Effects
Hosted by The Patient Story
Hear from multiple myeloma advocate Valarie Traynham and leading experts from Mount Sinai as they share practical strategies for handling side effects, optimizing nutrition, and improving quality of life.
Symptom: None; found through blood tests Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib
Newlyweds Navigate Cancer: Cody’s High-Grade Astrocytoma Story
Cody was diagnosed with high-grade astrocytoma in December 2021, two months after marrying Amanda. The couple met in college and looking back, they are grateful they married when they did, as their lives quickly took an unexpected turn.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Cody’s first noticeable symptom occurred while he was driving. His vision went completely black for about 15 seconds before returning. Then, a few weeks later, he began seeing a sickle-shaped blur in his eye that persisted for 30 minutes. Concerned, he sought medical attention. However, upon further evaluation, he and Amanda later realized that his earliest symptom had actually been unexplained contractions in his leg. Ultimately, they would come to learn that these contractions were focal seizures occurring over several years.
Their initial visit to the ophthalmologist revealed swollen optic nerves, suggesting pressure behind his eyes. As a result, his doctor referred him for an MRI. During an emergency room visit, doctors initially found nothing concerning. However, when the results came in, the scan unexpectedly revealed a large tumor, approximately the size of a softball. After further evaluation, the medical team determined that the tumor had likely been growing rapidly for a few years. Consequently, he underwent emergency surgery the next morning, during which they successfully removed at least 99% of the tumor.
Before the surgery, doctors were optimistic that the tumor was benign. However, the pathology results confirmed it was a high-grade astrocytoma, a rare and aggressive cancer. The news was shocking. With no cure available, the next step was treatment to prolong life.
They faced insurance complications since they had recently moved, leading them to explore other options. Through a friend’s suggestion, they looked into St. Jude Children’s Research Hospital, which accepts patients up to age 21 and provides lifelong care. With only three days to move, they relocated for Cody’s treatment at St. Jude.
Cody underwent 30 rounds of radiation over six weeks, taking an oral chemotherapy pill. The treatment caused extreme fatigue, nausea, and the sensation of his brain overheating. Following conventional treatment, they pursued a natural approach, focusing on an anti-cancer diet and lifestyle to help his body recover. Over time, their perspective on life shifted, strengthening their faith and bringing them peace about the future. Cody continues regular scans at St. Jude to monitor his condition. Despite the uncertainty, they purposefully embrace each day and believe they should maximize life regardless of circumstances.
Name: Cody L.
Age at Diagnosis:
21
Diagnosis:
Brain Cancer (High-Grade Astrocytoma)
Symptoms:
Vision loss (temporary blackouts)
Blurry sickle-shaped distortions
Leg contractions (focal seizures)
Treatments:
Surgery
Radiation
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.
Katie was diagnosed with stage 3B colon cancer after experiencing symptoms she initially attributed to long COVID and strep throat. Her first signs of illness included extreme fatigue, shortness of breath, and heartburn, but no gastrointestinal abnormalities or blood in her stool. Despite her active lifestyle, Katie could not perform daily activities without feeling exhausted. Blood tests revealed severe anemia, prompting further investigation.
After undergoing various tests, including an endoscopy and pelvic ultrasound, Katie finally had a colonoscopy, which uncovered a large tumor in her transverse colon. Her initial reaction was disbelief and fear, but her medical team assured her that the cancer had not metastasized, offering a sense of hope. Katie underwent laparoscopic surgery to remove a third of her colon. Post-surgery, she began chemotherapy, which included six cycles of infusion therapy paired with oral medications. She opted for a port for easier administration of treatments.
Throughout chemotherapy, Katie experienced side effects such as nausea, neuropathy, and cold sensitivity. Despite these challenges, she maintained her routine, including working and spending time with her family. Regular check-ups, including ctDNA tests, provided reassurance that she had no evidence of disease (NED) post-treatment.
Katie emphasizes the importance of emotional support, therapy, and connecting with others in similar situations. Therapy helped her confront fears and live in the moment. She advises against excessive online research, which only fuels her anxiety, and stresses the importance of leaning on friends, family, and even unconventional support networks. As she continues to heal physically and emotionally, Katie focuses on staying active and finding balance in life.
Name: Katie I.
Age at Diagnosis:
N/A
Diagnosis:
Colon Cancer
Staging:
Stage 3B
Symptoms:
Extreme fatigue
Shortness of breath
Heartburn
Treatments:
Surgery: Partial colectomy (laparoscopic colon resection; removed one-third of the colon)
Chemotherapy: infusion with oral medication
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.
A Second Chance at Life: Maggie’s Stage 4 PD-L1+ Triple-Negative Breast Cancer Story
When Maggie moved to the United States from the Netherlands to be with her wife, cancer was the last thing on her mind. But in 2022, she was diagnosed with stage 4 triple-negative breast cancer (TNBC). What followed was an unexpected, life-changing experience that reshaped how she saw both the disease and her own resilience.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Maggie’s story started as a bruising sensation in her left breast, which was something she initially attributed to exercise or a tight sports bra. Because she had no family history of breast cancer, she wrongly believed she was not at risk. When the lump grew, her concerns deepened, but as a visitor in the U.S., the cost of medical care made seeking immediate answers difficult. When she finally returned to the Netherlands, her doctor suspected a benign cyst, but ordered further testing just in case.
The truth came in stages. A mammogram, an X-ray of her lungs, and a biopsy revealed that while two tumors were benign, one was malignant. The cancer had spread to Maggie’s lymph nodes and lungs. The final diagnosis—stage 4 triple-negative breast cancer—was delivered bluntly, with an expectation that she might not live past two years. But she refused to accept that prognosis as final.
Returning to the U.S., Maggie navigated the complex healthcare system and secured treatment. A clinical trial offered an opportunity she hadn’t considered before. She had never heard of clinical trials in her home country, but in America, they became a lifeline. She was placed on a regimen including an antibody-drug conjugate with immunotherapy. Over time, the cancer receded, and today, she has no evidence of disease.
Throughout her treatment, Maggie learned the power of self-advocacy. Understanding the details of her clinical trial, asking questions, and staying informed about treatment options became crucial. She emphasizes that clinical trials can be a safe space for those with aggressive cancers like stage 4 triple-negative breast cancer because of the constant monitoring and access to cutting-edge treatments.
Beyond medicine, Maggie leaned into her mental resilience. She speaks passionately about shifting perspective—rethinking “Why me?” to “Why not me?” She believes in the importance of self-affirmation, reminding herself daily that she is strong, worthy, and still here. Cancer did not strip her of her identity or her future; instead, she found purpose in advocating for others and embracing life fully.
Maggie encourages others to prioritize physical and mental well-being. Walking, exercising, and staying active helped her through the exhaustion of treatment. She believes in supporting fellow patients by sharing knowledge and breaking down fears surrounding clinical trials and treatments. Maggie’s story is not just about survival—it’s about transformation. Cancer changed her life, but it did not define it. She continues to embrace every moment, proving that no one should be counted out too soon.
Name: Maggie C.
Age at Diagnosis:
44
Diagnosis:
Triple-Negative Breast Cancer
PD-L1+
Staging:
Stage 4
Symptoms:
Bruising sensation in the breast
Soft lump
Treatments:
Chemotherapy
Clinical trial: antibody-drug conjugate and immunotherapy
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.
Edie was diagnosed with stage 3B colorectal cancer at 52, after a positive Cologuard test and subsequent colonoscopy. Initially, she had experienced years of constipation but attributed it to various factors, like medication and scoliosis. When she turned 50, despite not having any risk factors or family history, her doctor recommended a Cologuard test, which came back positive. She initially dismissed it as a false alarm, but a follow-up colonoscopy revealed a mass, prompting further tests. Soon after, she was diagnosed with colorectal cancer, which required urgent treatment.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Edie’s treatment plan included chemotherapy and radiation, which began in April 2021. The chemotherapy was administered in eight rounds, spaced two weeks apart, to reduce cancer in her lymph nodes. She utilized a technique of icing her hands and feet during treatments to reduce the risk of neuropathy. Radiation therapy followed in September, involving daily sessions for six weeks. While Edie experienced some GI symptoms, the treatments were largely manageable.
Afterward, scans showed significant shrinkage of the tumor, leading to surgery in January 2022, which included a lower anterior resection and a temporary ileostomy. Unfortunately, the ileostomy was poorly formed, and Edie required a reversal seven weeks later. Following her surgery, Edie experienced a full recovery. The lymph nodes removed during surgery were negative for cancer and the tumor margins were clean. She continued with regular follow-up care, including scans and colonoscopies, all of which have returned clear since her treatment.
Edie emphasized the importance of screening and self-advocacy, as early detection can greatly improve treatment outcomes. She is also an advocate for colorectal cancer awareness, stressing the need for open conversations about the disease to reduce stigma. Throughout her treatment and recovery, Edie found solace in connecting with others who had cancer and building a supportive community for herself.
In terms of survivorship, Edie has adjusted to a new perspective on life, valuing the present moment and focusing on enjoying life rather than worrying about the future. She encourages others to give themselves grace and seek out support, especially from those who understand the emotional and physical challenges of cancer. Edie’s story highlights the importance of screening, early detection, and staying positive through difficult times.
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.
From Back Pain to Cancer: Michele’s Multiple Myeloma Story
Before her diagnosis, Michele experienced fatigue, anemia, and persistent lower back pain. She attributed these symptoms to aging, overexertion, and her active lifestyle as a dancer. However, during a dance rehearsal, she felt a sharp pain in her leg that led her to the emergency room. A CT scan and X-rays revealed lesions on her spine, prompting a referral to an oncologist.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Michele’s primary care doctor remained persistent and ran multiple tests. Despite the normal test results, follow-up scans showed lesions on her spine, ribs, and pelvic area. She was referred to a specialist who conducted PET scans, MRIs, and other exams. Afterward, in April 2020, Michele was diagnosed with multiple myeloma. Although the cancer had been detected early, she needed immediate surgery followed by treatment.
Despite the emotional toll, Michele remained physically active. The pandemic added another layer of difficulty as she navigated treatment. She later received a stem cell transplant, a pivotal moment in her recovery. She followed the medical team’s advice, consuming ice to prevent painful mouth sores. Witnessing the stem cells entering her body gave her hope for the future.
Following Michele’s transplant, she maintained regular doctor visits and became her own health advocate. She sought support from a diverse group of people worldwide who reassured her. She was in remission for four years before she relapsed in October 2024, which deeply affected her and her family.
Michele’s current treatment includes weekly infusions and injections. She initially had to undergo eight consecutive treatment cycles and now continues with biweekly infusions, eventually transitioning to monthly treatments for 25 months. The process has been physically and emotionally draining as she grapples with feelings of anger and frustration, particularly as her independence has been impacted.
One of the most difficult aspects of Michele’s experience was missing major life events, like her youngest child’s high school graduation in 2020. The mental and spiritual toll of her illness led her to lean on her faith and support systems. Michele emphasizes the importance of surrounding herself with positivity and cutting off negative influences. Her experience taught her to advocate for herself and others, especially within her community. She remains transparent about her experience and is determined to spread awareness.
Name: Michele J.
Diagnosis:
Multiple Myeloma
Symptoms:
Fatigue
Anemia
Persistent lower back pain
Sharp leg pain during movement
Treatments:
Surgery
Chemotherapy
Stem cell transplant
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
During one dance rehearsal, the pain became unbearable… it got more and more intense that I had to go to the emergency room.
How I Started to Know Something Was Wrong
I didn’t know it at the time because I thought they were normal symptoms of aging and overexertion. I was experiencing fatigue, but I thought I needed to sleep more or was working out too much, and always had anemia and had bone pain in my back. When I was working, I used to have a pad to support my back. It was always the bottom of my back that would hurt a lot.
During one dance rehearsal, the pain became unbearable. We had a move where my leg had to come out and when it did, I felt a sharp, intense pain like I sprained something. I kept thinking that maybe I spread my leg out too far or something. I would do stretches, but it got more and more intense that I had to go to the emergency room, where I got a CT scan and X-rays.
When the doctor came in, he told me, “We see lesions. You may have to see an oncologist.” I immediately called my husband but he was at work an hour away, so I said, “You have to stay on the phone with me. They’re telling me that I have lesions and I have to see an oncologist.” He asked, “What’s an oncologist?” I said, “It’s cancer.” Immediately, he stopped what he did and came home. My whole life changed.
He could not understand why everything else was saying that I’m fine, but the CT scan and X-rays were saying something different.
Going to the Doctor After the Emergency Room
My primary care doctor had access to my chart, so he already saw everything. I set up an appointment with him. I was still working out and going to dance practice because I wasn’t letting that go. It’s a part of me.
He did all kinds of tests. I was due for my first colonoscopy, so I got that done. I’m very active with getting my mammograms and the test results came out fine.
My husband and I said, “Okay, it’s not in my blood, so what was this man talking about with the CT scan and X-ray?” My doctor was very persistent. He didn’t give up. He told me and my husband, “I’m going to set up an appointment with a bone doctor who specializes in cancer.”
I repeated the CT scan and X-rays. When the report came back, he could not understand why everything else was saying that I was fine, but the CT scan and X-rays were saying something different. There were lesions on my spine, rib, and pelvic area. He decided to refer me to a doctor at the University Hospital in New Orleans.
My schedule was set for Thursday after Mardi Gras. I had PET scans, an MRI, and different exams, and on April 14, 2020, he called and said, “You have multiple myeloma. It’s good news, but it’s not so good news because to tell you the truth, we can’t even stage it because we caught it early. But you do need to have surgery.” On April 22, I had my surgery and then started treatment.
I had several meltdowns and anxiety attacks, and it had a lot to do with people being mindful and careful around me.
Getting a Stem Cell Transplant
When the time came for the stem cell transplant, I was at Tulane. On the day of the transplant, they gave me something to relax. I had to eat a lot of ice because they told me that sores could develop in my mouth and throat, and I wasn’t letting that happen because I was told it was extremely painful. I enjoyed popsicles and big cups of ice, and I was able to have them during the procedure and afterwards as well.
When the stem cells arrived, they told me it would take 15 minutes for them to go through, which was amazing. I was looking at the stem cells and they were moving. That was my life. I was getting my life back. This is going to be over and I’m going to be fine.
I healed and my hair eventually grew back. Mentally, I’m still feeling better. One of the key things they told me was because I kept physically active and took care of myself, I was able to withstand the process.
No one could come to see me. I had several meltdowns and anxiety attacks, and it had a lot to do with people being mindful and careful around me.
Make sure you have somebody who understands what this is and respects the fact that you are your own advocate.
My Life After the Stem Cell Transplant
I make sure to see my doctors and have my labs done to be monitored. To try to understand what was going on with me, I became my biggest advocate. I started looking for people who looked like me, but I found a whole realm of people of all races and religious beliefs in different countries who reached out to me and let me know it was going to be okay.
Cancer Relapses
My doctor is a myeloma specialist who’s very sharp and very on point with everything, so I’m in good hands. The key is to make sure you have somebody who understands what this is and respects the fact that you are your own advocate.
He said, “Your numbers are exceptional. Let’s do a bone marrow biopsy to confirm everything.” My fourth anniversary was October 16, 2024. My doctor told me that we’re going to have to do a PET scan. The results showed that I went from 0% to 25%. I had relapsed.
This time around, I wasn’t doing well. When I told my husband that I relapsed, he looked like he was defeated. He looked like how I felt.
I have a port in my chest where I get an infusion every week. I also get a shot in my stomach. It’s humbling and scary. I’m not taking it well. I cry every day and I’m angry.
I was doing eight cycles in a row of one of the treatments. Now I’m doing every other week of one of them. Once I’m done with this part, I’ll be going once a month for 25 months.
I’m going to be as transparent as I can be, especially for people who look like me because we have to create awareness.
Emotional Part of a Cancer Diagnosis
It gets in the way of things and slows you down, which is difficult when you’re highly independent and love to get up and go like me. It wasn’t something that I was expecting. In 2020, my youngest was graduating from high school and I couldn’t go. I had to watch videos taken by his older siblings. That messes with you mentally.
When you’re going through something like this, it alters your life physically. What does it do to you mentally and spiritually? You have to find a way. You have to have your faith, and have to have your trust in God or whoever you serve or believe in. Have your affirmations, read your Bible, and open up to talk to people, especially those who are going through the same thing.
I’m always not thinking of myself but of others, and that’s another thing that I’m working on, which is working on myself. When these situations happen, they reveal a lot about people. Don’t allow negative people in your space. I can’t have them around me. I can’t force people to accept me and be my friend. I’m being your friend and trying to look out for you, but when it happens to me and you’re not there, you have to get rid of people like that.
I have no regrets. Four years of being in remission is a blessing. It allowed me to see my grandson, so I’m looking forward to all the other years to come and stay positive. It’s hard. It’s hard on my family. I’m human. I feel hurt, anger, and disappointment. I can’t be afraid of exercising because it seems like whenever I do it, the myeloma comes back, but I can’t do that.
Words of Advice
If you’re not comfortable with your doctor, don’t settle. Move on and find someone else. I became somebody who was able to help somebody. Multiple myeloma messed with the wrong person because I’m going to run and tell everybody. I’m going to be as transparent as I can be, especially for people who look like me because we have to create awareness.
Special thanks again to Johnson & Johnson for supporting our independent patient education content. The Patient Story retains full editorial control.
Symptom: None; found through blood tests Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib
The Importance of Cancer Screening in the Black Community | Lemuel Eley
Lemuel shares a transformative health experience of when he suffered a life-threatening heart attack while working. He now literally preaches the importance of cancer and other health screenings. The incident began with symptoms like severe breathlessness and profuse sweating, which he initially dismissed. Upon seeking medical attention, he was diagnosed with 16 blood clots in his lungs, requiring immediate surgery. This wake-up call prompted significant changes in his lifestyle, including weight loss from 495 to 333 pounds, and a shift toward greater health consciousness.
Reflecting on his upbringing as an African-American male, he acknowledges cultural norms that downplayed the importance of regular medical care. His father’s heart attack at 55 reinforced the generational tendency to dismiss symptoms and avoid doctors. Now, he advocates for proactive health care, emphasizing the importance of regular screenings and prompt medical intervention. He also draws on his role as a preacher to bridge faith and science, stressing that while God provides healing, individuals must actively care for their health.
He challenges the misconception in religious communities that divine intervention alone suffices. Using biblical analogies, he underscores the necessity of human effort alongside faith and urges individuals to utilize medical resources as tools given by God. His story serves as a call to action, particularly for Black men, to prioritize their health, overcome cultural stigmas, and engage in preventive care to avoid unnecessary suffering.
Thank you to AbbVie, Genmab, and Karyopharm for supporting our patient education program. The Patient Story retains full editorial control over all content
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I told my sister that I couldn’t breathe and she told me to call 911… They found out I had 16 clots, so they rushed me to surgery.
Introduction
I’m from Henderson, North Carolina. I’m 44 years old and I have a daughter named Rachaelle.
I have a degree from Elizabeth City State University in criminal justice and psychology. I’m also a licensed preacher of The Church of Apostolic Revival in Durham, North Carolina.
I have many hobbies. My nickname’s Big Country. I have a lot of hobbies, like hunting and fishing. I like working with my hands. I like to do media. Professionally, I’m a truck driver. I have my dump trucks.
Getting a Heart Attack
In April 2021, I was driving my truck in Winston-Salem, North Carolina, and I pulled over into a company that does cement. I had to go upstairs to open up the tank and when I walked back downstairs, I noticed that I was breathing with much difficulty and sweating profusely. I didn’t pay any attention to it and thought I had a cold. I go around to the other side of the building and get loaded. I go upstairs to close the top of my tanker and as I’m going back down, I can’t take another step nor take another breath. I slid down the stairs on my backside to get downstairs.
I managed to get myself into the truck and drive home. I was sweating profusely and coughing by this point. I went to the doctor who gave me steroids to open up my lungs. I couldn’t lie down. I had to sit up in a chair. That morning, I told my sister that I couldn’t breathe and she told me to call 911. When they got there, they took care of me and brought me to the hospital to get a CT scan. They found out I had 16 clots, so they rushed me to surgery. They went up through my groin into my lungs and did the clot-busting treatment. I had to stay stable for 24 hours until the medicine worked.
My first thought was I wanted to know how bad it was. Was I going to live? How was my heart? It was a major life adjustment. I was 495 pounds and now I’m down to 333 pounds.
Our culture taught us that we didn’t need a doctor.
Recovering from the Heart Attack
My whole perspective on life changed. I’m conscious of my body now. If things happen, I get it checked. I’ve learned to hold people around me who love me because you never know. You could be here today and gone tomorrow. You have to take advantage of every God-given opportunity that you have with people because as the Bible says, life is like a vapor. Today we could be here, but tomorrow we could be gone, even in the next hour you could be gone.
It challenged me to look at life differently and to stop being selfish. If somebody asks me to do something, I do it. You never know if it might be that person’s last time. It changed my whole perspective of life. I’m more conscious about what I do, especially to my body.
View on Doctors and Health Care Growing Up
As an African-American male, we were always told that we were tough. We did what we were supposed to do. We work, work, work, and we’ll be okay, not knowing half the time that later on in life, an issue will arise and it’s going to be worse than it was.
My father wouldn’t go to the doctor. My mom made him go and the doctor told him certain things, but he never took heed. He had a heart attack at age 55, which caused issues with every other part of his life but he worked through it and now he’s good.
Our culture taught us that we didn’t need a doctor. You can take a little bit of this and a little bit of that. If you’re having some stomach issues, drink a little ginger ale or eat a little crackers. But that pain in your stomach could have been a heart attack, but you’ll never know. If you feel tightness in your chest or you feel like you can’t breathe, you have to go see a doctor and have it checked out. That’s what the doctors are here for.
We don’t take the time to talk about health care because we feel like God can do everything and sometimes, that’s the problem.
Role of Faith & Religious Beliefs in Health Care
There’s a thin line between faith and science. We’re taught that God has the power to heal, but here’s my take on this. God created the physicians to do what they’re supposed to do and when they can’t, that’s when faith steps in.
I have a great story of my friend Tony who had stage 4 cancer. He didn’t know it and was still living. He went to the doctor and found out he had it, but before he found out, he was living a good life. I found out that with cancer patients who I have known, have talked to, and have witnessed, most of them already had it before they even found out they had it.
I never had cancer and I pray I never have it. Some people think, “I have cancer. I’m going to die,’ but you don’t have to succumb to that. Look at Tony. He does everything he wants to do. He still cycles. You look at him as if nothing ever happened, but he does his part by going to the doctor, taking care of himself, eating right, doing all the things that he’s supposed to do, and what he can’t do, God does.
I’m a licensed preacher and I preach in churches, but we don’t take the time to talk about health care because we feel like God can do everything and sometimes, that’s the problem. With religion, we depend too much on God when God said I would do the part you can’t do.
I’m going to share this Bible story that I heard and it made sense. Lazarus was dead. Jesus didn’t say, “Get up out of that ground.” He told them, “Dig him up.” Jesus said, “Lazarus, come forth,” and he came out. Then he said, “Take the grave clothes off him.” They did that part. He did the part they couldn’t do. Going back to what I was saying, you do your part, God does his part. There’s a very thin line when it comes to health care and Christianity.
God put these doctors in place for a reason, so use them. We don’t talk about it because we always put the burden on God versus us taking care of ourselves. You can’t keep stuffing yourself with pork and fatback, and then when your arteries get clogged, you ask God to unclog something that you did. That’s not fair. Go out and run. Start losing weight. Do your part. We do a horrible job in church talking about health care because Jesus is going to do everything, but you still have to do something.
If you don’t get screened and something happened to you that you could have taken care of, you can’t blame anybody else but yourself because you had every chance.
Importance of Taking Care of One’s Health
God gave us the tools, the resources, and the revelation of the human body. We have all this research to help us. We have these schools of medicine and doctors.
Get your screening. If you feel something, go see a doctor. Your health is more important than anything in the world. If you don’t get screened and something happened to you that you could have taken care of, you can’t blame anybody else but yourself because you had every chance.
It’s like having tools. I cannot take a coloring book and color a page without the crayon. The crayon is the tool that goes along with the coloring book so you can color. Without the crayon, there is no coloring book—it’s just a book. The coloring book needs the crayon. You are the coloring book, but your doctor is the crayon. Let your doctor be the crayon and help you paint a good life.
Advice to Black Males
Go see your doctor. Go get your screenings. You never know what you might be going through. I’m 44 years old. Never in the world did I think I would have a heart attack in my early 40s. I’ve been a healthy and athletic guy. Let’s be honest. Health is wealth. For African-American men, we deal with prostate cancer and reproductive dysfunction because we’re not taking care of ourselves. We need our heart to work the other part and a lot of times, we don’t see that until the last minute. Have you been taking care of your body the whole time? Ask your doctor.
As part of the African-American community, a preacher, part of the Omega Psi Phi Fraternity, Inc., as part of the trucking industry, and being a young African-American man, go. Find out something that could save your life, so you don’t have to deal with it anymore. Get your prostate checked. Sometimes we feel violated, but if it turns into cancer, then you know how to deal with it. Just go.
Go see your doctor. Go get your screenings. You never know what you might be going through.
Special thanks again to AbbVie, Genmab, and Karyopharm for supporting our patient education program. The Patient Story retains full editorial control over all content
An internal medicine physician discusses healthcare access, preventative care, patient trust, and how both doctors and patients can improve relationships for better outcomes.