Sharing Her Brain Cancer Care Partner Story Helps Blair Feel Less Alone
Blair’s story is one of love, resilience, and the strength that being a brain cancer care partner requires. She shares how her family’s world changed forever in November 2024, when her husband Kyle was diagnosed with a grade 4 astrocytoma, a form of brain cancer.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
It all started subtly on Halloween, Kyle’s favorite holiday. He woke up feeling unusually groggy and with a strange sensation of pressure in his head, but he chalked it up to dehydration and lack of sleep. However, things took a more ominous turn when he found that he wasn’t able to read his emails at work and experienced disorienting lapses in his short-term memory.
Kyle quickly went to the ER, where doctors discovered a golf ball-sized tumor in his temporal lobe. He underwent surgery the very next day, right on his 38th birthday. The procedure went well, but he was diagnosed with a grade 4 astrocytoma, and also found that he had an IDH mutation.
The diagnosis hit hard, not just because Kyle’s condition was terminal, but also due to how it forced their family dynamics to change. These were uncharted waters for them. All of a sudden, Blair had to balance the roles of wife, mother, and brain cancer care partner. Their youngest child is on the autism spectrum, making the situation even more delicate. Blair worked to maintain a semblance of normalcy at home while coming to terms with her grief and fear.
Blair describes the strain of watching her once energetic, sports-loving, problem-solving husband struggle with simple tasks like reading a menu or dealing with text messages. Her experience isn’t just about physical caregiving; it’s also about having to deal with the emotional and mental shifts that come with brain tumors and their treatments.
Kyle began proton radiation and chemotherapy the day after Christmas. The treatments were grueling: 40 straight days of chemo combined with radiation, and then cycles of oral chemotherapy. Side effects like fatigue, nausea, and brain fog became part of daily reality. But Kyle’s spirit remained strong, thanks to Blair’s unwavering advocacy and care.
Blair can’t say enough about how important community is to her family. She advises other brain cancer care partners, as well as cancer care partners in general, to seek out and join support groups where they can connect with people who understand the unique challenges of this role. It’s been therapeutic for Blair to share their story, because doing so breaks the isolation that can come with such diagnoses like these.
Watch Blair’s video and learn more about:
The Halloween surprise that changed everything for their family.
How Kyle’s deceptively simple headache led to an astrocytoma diagnosis.
Blair’s heartfelt advice for brain cancer care partners.
Managing family life while caring for a loved one who has brain cancer.
The emotional and physical challenges of being a brain partner care partner.
Name:
Kyle D.
Age at Diagnosis:
38
Diagnosis:
Brain Cancer (Astrocytoma)
Grade:
Grade 4
Mutation:
IDH
Symptoms:
Malaise
Pressure headaches
Inability to focus and think straight
Extremely high blood pressure
Fatigue
Short-term memory issues
Treatments:
Surgery: brain tumor resection
Radiation therapy: proton therapy
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.
Directing My Life with Polycythemia Vera: Filmmaker Todd Strauss-Schulson’s 17-Year Story
Polycythemia vera (PV) changed everything for film director Todd Strauss-Schulson when he received his diagnosis at just 28 years old. This rare blood cancer, affecting fewer than 200,000 Americans, didn’t stop Todd from building a successful directing career or living life to the fullest. His 17 years of experience with polycythemia vera offers hope, practical insights, and inspiration for anyone navigating life with this myeloproliferative neoplasm. Todd’s experience is an example of how managing symptoms with regular phlebotomies and building a strong relationship with your care team means a PV diagnosis doesn’t have to define your future.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Todd’s health awareness started early, shaped by witnessing his father’s health challenges. A routine physical in L.A. flagged abnormally high blood counts, setting Todd on a path filled with uncertainty. A bone marrow biopsy confirmed PV and the presence of a JAK2 mutation or Janus kinase 2 mutation (a gene mutation found in about 95% of PV patients that provides instructions for creating a protein that promotes the growth and division of cells). These terms were initially foreign, but soon became part of his reality.
Navigating polycythemia vera wasn’t easy. Todd faced anxiety, fear, and countless questions. But a pivotal encounter with his doctor, Dr. John Mascarenhas at The Tisch Cancer Center at Mount Sinai in New York, transformed his outlook. Dr. Mascarenhas didn’t just provide medical care; he offered reassurance: “I got you.” This phrase became a comforting anchor and set the scene for the establishment of a strong doctor-patient relationship.
Living with PV for 17 years, Todd manages his condition with regular phlebotomies or blood extractions, aspirin, a health-conscious lifestyle, and working closely with his care team to track his symptoms. Yet, it’s not just about treatments. Todd openly discusses the invisible anxiety that lingers, how something as simple as a bruise can trigger worry, and how humor-filled texts with his doctor ease his mind.
What stands out is Todd’s proactive approach. He doesn’t let PV define him. He embraces life passionately, advocates for himself, and shares his story to inspire others.
Read the story and watch Todd’s video to uncover more about his experience, including:
His unexpected diagnosis at 28 that changed everything. Find out how he copes.
What living with polycythemia vera really looks like — Todd shares it all.
From anxiety to advocacy: his emotional PV transformation.
How Todd leverages his creativity and experience to manage his rare blood condition.
How he transforms life’s challenges with PV into empowering lessons.
Name:
Todd S.
Age at Diagnosis:
28
Diagnosis:
Polycythemia Vera
Symptoms:
None: discovered during a routine physical that uncovered extremely high blood counts
Treatments:
Phlebotomy
Aspirin
Thank you to 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 for treatment decisions.
Hi, I’m Todd. I’m a film director and writer, and I live between New York and Los Angeles. I was diagnosed with a rare blood cancer, polycythemia vera (PV), in 2008, when I was 28 years old.
The specter of health, doctors, and medicine hung over my life in invisible ways. My father was sick when I was growing up. He had hepatitis C, and he had had two liver transplants, one when I was 13 and one when I was in my late 20s.
I probably didn’t realize it back then, but I was always very concerned about my health. I believed in hospitals and doctors because I saw them save my dad’s life when I was young. I would get physicals, and I liked going to the doctor.
How I Found Out I Had Polycythemia Vera (PV)
I got myself a routine physical in L.A. when I was 26 or 27. My blood counts came back insanely high. I didn’t know what that meant.
I was alone here in L.A. My family was back east. They told me to see a specialist.
I went to a hematologist. She performed a bone marrow biopsy. She tapped into the base of my spine, into my hip.
I gritted my teeth while they went in there and sucked the marrow out of the bone. It hurt so bad, and it felt like they sucked the soul out of my body. The whole thing was just chaotic and scary, and I didn’t know what to make of it.
The diagnosis came back. I had PV and a JAK2 mutation, too. I didn’t know what any of that meant, but I knew who to consult.
I had this relationship with the hospital that saved my dad’s life. As a matter of fact, my whole family had a relationship with this angel of a coordinator in the transplant department.
Her name was Claudette. I emailed her and said, “This weird thing is happening to me. Which doctor can I trust in your hospital?” She said, “We have the best,” and introduced me to Dr. John Mascarenhas.
The diagnosis came back. I had PV and a JAK2 mutation, too. I didn’t know what any of that meant, but I knew who to consult.
Putting My PV Diagnosis in Perspective
My diagnosis made me anxious and nervous. But Dr. Mascarenhas made me feel confident and contained. He made me feel like there was a team behind me. He literally said, “I got you, I got you.” That made me feel cared for.
I think the idea of having a slow-moving blood disease that may or may not progress is more about living with uncertainty and the anxiety it produces. My diagnosis was like a bomb that goes off under the ocean and touches off all of these ripples.
Throughout the 17 years of my life after my PV diagnosis, I felt anxiety and uncertainty and experienced highs and lows that were mostly beneath the surface. But for the first few years, I was almost able to pretend I didn’t have PV. I just had to do my treatments: phlebotomies or blood draws, and aspirin.
Later on, more significant things took place that revealed themselves slowly, as opposed to an acute, huge reaction. But Dr. Mascarenhas saying those things really helped me at the outset.
He said, “PV is a blood cancer, but don’t freak out about that word. It’s a myeloproliferative [neoplasm] — it’s characterized by excess production of blood cells.”
“PV is something you die with, not from. You’re young, and most people get PV when they’re older. So, you’re talking about 20 years of quality of life, but you’re 27 years old, so you’ve got a lot of life to live.”
“We’ll manage this and stay on top of this together. You’re going to get phlebotomies every six weeks, and you’re going to take baby aspirin.”
Managing My Disease — and Anxiety — for 17 Years
I’ve gotten used to those treatments for polycythemia vera. I do phlebotomies every few weeks and continue to take aspirin.
That being said, I carry around an invisible anxiety. Whenever I feel uncomfortable or fatigued, or if I get, say, a bad bruise on my leg, my anxiety spikes. I’d think, “Oh my God, is it progressing?”
But Dr. Mascarenhas helps me deal with that anxiety, too. I would text him, “Something’s happening!” and he would reply funnily, “Shut up. You’re fine, you know.” Something that would immediately diffuse the panic, anxiety, or fear.
I’d say, “Hey, John, I have a big bruise on my leg.” He’d reply, “Yeah, it’s because you’re taking baby aspirin and it’s no big deal.”
If I say, “Hey, John, I’m pretty tired,” he’d go, “Describe your life to me,” and I’d do so. He’d respond with, “Yeah, that would make anyone tired.” And I go, “Could it be the PV?” He’d go, “Yeah, could be.”
So, there’s nothing acute. I think you just learn to live with it.
I certainly do try to take care of myself. I don’t smoke, I go to the gym, and I try to eat decently. I try not to get overweight. I try to drink enough water. My health is at the forefront of my mind.
I’ve basically been stable these 17 years. The numbers may be elevated, but they’ve stayed exactly the same all this time. There’s wear and tear as this disease goes on unmitigated, but at least it’s not getting worse. So thank God for that. I’ve basically been doing what I’ve always done.
Dr. Mascarenhas is the tip of the spear with research and stuff. Every so often, we’ll try a new intervention to see if it’s useful.
I’ve basically been stable these 17 years. The numbers may be elevated, but they’ve stayed exactly the same all this time.
My Father’s Diagnosis Helped Me Navigate My Own
Aside from my polycythemia vera treatments, I’ve also been able to leverage what I’ve learned from my dad’s and family’s experiences to help with my own. Watching them from shore, so to speak, enabled me to navigate this system.
I’ve watched my father and family get by. I’ve seen my mother be a sort of squeaky wheel, with her not-taking-no-for-an-answer attitude. She taught me not to be overwhelmed by doctors and leap into action.
I learned to go, “Alright, something’s going on — so I need to resolve this as fast as possible. Everyone out of my way. I’m not going to wait around. I’m calling everyone I know. I’ll find the best doctor. I’ll double-check all of this. I’ll get in there and befriend all the doctors and nurses.”
It’s the opposite of being overwhelmed by scary information that you’d rather not know. I’m not like that. I’d like to know everything and take it on, so I don’t have to think about it anymore.
Tracking My Symptoms and Integrating PV Into My Life
I don’t particularly track my polycythemia vera symptoms, but I’m quite aware of when something’s wrong, and I go, “John, what’s this?”
I don’t write my symptoms down. But I do have a list or litany of things my team helps me keep abreast of. Night sweats, nausea, headaches, fatigue, and so on. I usually say “No” to most, and sometimes “Yes” to others.
I am not PV. I have it. It’s part of me. It’s not the whole me. Finding that balance is really important.
The more you talk about something or say something, it’s as if you’re casting a spell. I don’t want to talk about PV all the time, as if it’s my whole identity now. I’d rather integrate it into my life by finding that balance between keeping it part of me and making it my entire identity.
I think both of those things are too extreme. Integrating it, I think, is a useful way to navigate your world.
I don’t want to talk about PV all the time… I’d rather integrate it into my life by finding that balance between keeping it part of me and making it my entire identity.
Building a Relationship With My Care Team
Being a great doctor is a lot like being a director in terms of how they coordinate and communicate.
As a director, I have to shape-shift all the time. Every actor needs to be spoken to differently. Some like to rehearse a lot while others like to improvise. Some actors like to be really serious while others like to joke. Some like a lot of attention while others want to be left alone, and they don’t tell you that. You have to intuit it.
So if you’re on a shoot day and you have eight actors and each has a different way of working, one of the big parts of your job is to be able to bounce around and know how to deal with them all, while you’re doing a thousand other things.
It’s difficult. The best doctors work like directors, working seamlessly with people. It’s not a one-size-fits-all thing, and I guess if you feel like your doctor’s not doing that, you could say something.
The hardest part of the job is that many patients are a handful. They’re in terrible moods. They’re angry. They’re grouchy. Of course, they’re in pain. They’re really scared.
You can’t expect consistency and elegance when someone is in fear and pain. But as a patient, if you meet a new doctor, you’re trying to get diagnosed, but you’re also trying to forge a relationship. So you can also show up in a way that makes them want to work with you.
When I met Dr. Mascarenhas for the first time, I wanted to be his and the nurses’ favorite patient. I wanted them to be relieved when I’m on the schedule. That’s partly my nature; I joke around, and I try to keep it light and funny.
But it’s also because being easy to deal with helps foster a stronger relationship with someone than if you show up yelling and acting as if you know what to do. It goes both ways, even though the doctor’s got all the power in that situation. But a patient can also do a lot.
I’m Living My Life
One of the great things that Dr. Mascarenhas said to me when we first met was, “Managing polycythemia vera is all about quality of life, but it’s your life, so get out there and live it. Don’t sit around and panic all the time.”
I feel very viscerally about that. Seeing my father progress through his illness might have had something to do with it — as well as having my own issues.
I feel very strongly that you only get a certain amount of time here. And even if your health is compromised, you’ve still got that finite amount of time.
We can see it as straddling the line between the healthy and the sick. Every six weeks, I go to an infusion center that’s full of people getting treatments. Then I come back into this other world where health isn’t a concern and everyone’s focusing on making money and having families instead.
It makes you live with more gusto. You never know when things could worsen. I could learn that my PV is progressing, that it’s getting worse, that I need a bone marrow transplant, or something like that.
And so, for as long as I’ve got this body and this energy, I want to throw myself into the world, because it’s so clear that things won’t last forever.
Weirdly, I feel this is the blessing of having a disease like this. It makes it obvious that your life is not forever — which can be all too easy to ignore when you’re healthy, and then you can just take things for granted.
I had to learn to manage my anxiety in my mind and body. The gym, meditation, therapy, acupuncture, and attending long silent retreats are all helpful. Those are a whole scaffolding of things that help manage fear.
I feel very strongly that you only get a certain amount of time here. And even if your health is compromised, you’ve still got that finite amount of time.
Why I Share My Story
Dr. Mascarenhas asked me if I would want to speak at this blood cancer gala in New York. “It’s kind of a big deal,” he said. “Bradley Cooper was going to speak, but he had to back out. Would you want to do it?”
I accepted the invitation. I wrote a funny speech that was as honest and vulnerable as I could muster. I don’t think I realized how profound it was going to be until after I had delivered it. It felt a little lonely, though; no one was with me as I did it.
Having polycythemia vera was never something that I kept a secret. I thought that having it as a shameful secret actually felt like a whole other kind of cancer. Just some other thing that you’re burying down that’s only going to start to curdle.
I made videos that were kind of an extension of that speech. They were unique opportunities to process all of this stuff through my art form. I thought it would be great to gather a crew and be on camera, and tell my story.
The premise of the videos was that Dr. Mascarenhas and my care team are fighting for my quality of life. And so the videos would involve Dr. Mascarenhas going on a date with me, basically, for a crazy day in New York, and actually see the life he’s saving. He wouldn’t know what I had planned for that day — a trapeze class, or diving, or driving a convertible, or taking a tango lesson. I see him at his job when I consult him — and this would allow him to experience my life firsthand.
Dr. Mascarenhas was quite eager to do it. Getting to have that time with him was pretty important for our relationship, and was certainly unique. Of course, a lot of patients wouldn’t be able to do anything like that with their doctors, but our banter is really quite evident in the video.
I’m hoping the video can serve as a model for other patients and doctors, too.
My Advice for Those with PV or Another MPN
Everyone’s MPN is different. You have to get a great team of doctors together to help you somehow, because you can’t do it alone. It also makes you feel so much more at ease when you feel like someone’s got you.
I think being aware of your body is important, but having a disease makes you pretty aware of your body already.
When you learn that you have a disease like polycythemia vera or another MPN, you can buckle under the strain and complain, “Why me?”, pull away from the world, and become a hermit. Of course, I sometimes do that, and wish I didn’t have to deal with this and that I could just be carefree.
But, you see, PV can be viewed as a gift. You can use it as a way to be as present in your life as possible. Because you can be hyper-aware of how fragile your life really is.
And so that would be my advice: to see PV or another MPN as a gift — and to figure out that there’s a gift within every experience, even terrible ones.
It’s your job to figure out precisely what that gift is. What’s that experience giving you? What’s it teaching you? How can you make something good from it?
Not to be a Pollyanna about it. To be honest, it’s not all roses. It doesn’t feel good to get phlebotomies all the time, to have to go to the doctor frequently, or to be unable to go on vacation for longer than a few weeks at a time because of my phlebotomy regimen.
It’s a pain and it’s lonely. But it sets you apart and makes you unique. It gives you a unique access point to life.
That would be my advice: to see polycythemia vera or another MPN as a gift — and to figure out that there’s a gift within every experience, even terrible ones… Not to be a Pollyanna about it. To be honest, it’s not all roses.
Special thanks again to Incyte for supporting our patient education program. The Patient Story retains full editorial control over all content.
From Athlete to Advocate: Bryon’s Experience with Multiple Myeloma
Bryon found out he had multiple myeloma in 2018 at the age of 54. He was active, health-conscious, and had no family history of cancer. However, he started experiencing suspicious symptoms: elevated protein levels during routine check-ups and a lingering finger fracture from basketball.
Bryon’s primary care physician pieced these issues together and referred him to specialists. Ultimately, an oncologist confirmed that he had multiple myeloma. Initially confused about the nature of multiple myeloma, Bryon soon started taking proactive steps. He sought out second opinions, researched treatment options, and, most importantly, advocated for himself and asked his doctors questions.
Bryon’s treatment plan involved six months of chemotherapy, followed by a high-dose chemo regimen and, finally, an autologous bone marrow transplant. Luckily, his genetic makeup made the standard treatment particularly effective. He initially refused to consider clinical trials, but his experience later convinced him that they could be worth joining. He now encourages others to consider participating in such trials.
Physical activity played a major role in helping Bryon recover from multiple myeloma. He made it a point to remain as active as he could, which eased tough side effects like “chemo brain” and helped him stay mentally strong and emotionally resilient. His insurance and business ventures provided financial stability, allowing him to focus on his health and reduce the stress he felt.
After his multiple myeloma treatment regimen ended, Bryon’s life took on new meaning. He now works with The Leukemia & Lymphoma Society, where he focuses on community outreach and supports patients and families affected by multiple myeloma. Through his work, he emphasizes the importance of getting diagnosed early, understanding one’s body, and pushing for answers when something feels wrong.
Through his story, Bryon wants to stress that multiple myeloma is often characterized by vague symptoms — making awareness and early diagnosis vital. He wants to encourage people to stay informed, have regular check-ups, and never underestimate the power of self-advocacy.
Read Bryon’s story and watch his video for more:
What an unhealed finger injury revealed about his health
The role of self-advocacy in Bryon’s multiple myeloma diagnosis
How staying active helped him cope with chemotherapy
Bryon’s surprising and inspiring reaction to his cancer diagnosis
Lessons from Bryon’s experience with multiple myeloma
Name:
Bryon D.
Age at Diagnosis:
54
Diagnosis:
Multiple Myeloma
Symptoms:
Elevated protein levels in urine and blood
Finger bone fracture that refused to heal
Treatments:
Chemotherapy
Autologous bone marrow transplant
Thank you to The Leukemia & Lymphoma Society for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
I know, you can’t just turn on a dime. But it’s so important to do what you need to do, and change what you need to change, as quickly and early as you can. It can extend your life.
About Me
My name is Bryon. I’m a multiple myeloma survivor. I was diagnosed in 2018 at the age of 54. I’m the only person I know in my family who’s had cancer.
I was an athlete in my youth, and I continue to try to live and stay healthy. I’ve been married for 33 years. My wife and I have three kids.
When we discovered that I had cancer, it was life-changing, to say the least. So, like many other patients, we have our own story. And my journey led me to the role I have now. I’m the national community outreach manager for the Myeloma Initiative at The Leukemia & Lymphoma Society.
How I Found Out I Had Multiple Myeloma
I have good major medical insurance. My primary care physician would diligently check me out. And my multiple myeloma story started when he found suspiciously elevated protein levels in my urine and blood. Over the succeeding months, he began to suspect that this elevation might not be related to my lifestyle.
One day, I was out playing basketball with some 20- and 30-year-old guys. I tried to catch a ball, and I bent my finger back. Now, I’ve had this kind of injury many times before, but this particular one just refused to heal, which was ominous.
I had a doctor check it out, and they found a fracture. I went back to my PCP and told him what happened. He put two and two together and said, “This is an unusual scenario. Let’s check this out alongside your elevated protein levels.”
I found out that I was experiencing kidney dysfunction. My PCP referred me to a specialist. I ended up going to a nephrologist, a hematologist, and, finally, an oncologist.
The oncologist recommended that I undergo an immediate biopsy. I had it done after the day we met.
Two days later, the results came back. The diagnosis was multiple myeloma.
… when things were straightened out, I hunkered down. I said, “Okay, we’re going to figure out how we can beat this.”
My Reaction to My Diagnosis
When I heard the doctor say, “You have multiple myeloma,” I got confused initially. I actually thought I had melanoma. It turns out that I’m not alone in this and that the two are often confused.
But when things were straightened out, I hunkered down. I said, “Okay, we’re going to figure out how we can beat this.”
I was preparing for the worst-case scenario after the battery of tests I’d gone through. But didn’t sink in until I started getting chemotherapy. This is life-threatening, and I may not have much control over it.
Multiple myeloma isn’t a type of cancer where you can focus and pinpoint one particular area or organ. It doesn’t manifest as a solid tumor. It’s in the blood, and it runs throughout your entire system.
My Multiple Myeloma Treatment Plan
My oncologist suggested that I consider a clinical trial. I thought about it and declined. I wanted to understand the standard treatment for multiple myeloma for a patient like me.
I ended up doing chemotherapy for six months; a higher-dose regimen of chemotherapy to flush out any remaining traces of myeloma; and then an autologous bone marrow transplant, which means that my own body was the source of the T-cells that were reintroduced.
I was fortunate to have been able to undergo the autologous transplant. The doctors were able to harvest enough T-cells to make my treatment possible. Not everyone who needs stem cells can get the cells they need from their bodies. Most people have to look for a donor.
Later on, I also learned that something about my genetic makeup made the standard treatment favorable for me. I can’t give you the scientific or medical term for it, but there it is. So the choice of standard treatment turned out to be optimal for me.
I did learn more about clinical trials after that — of course, I did start working in this role. Patients should always check with their doctors to see if clinical trials are a possibility for them and to learn more about what these trials can do for them. And if they need to get a second opinion, they should do so too.
My Story Continues Below
Program Highlight: Multiple Myeloma: Creating Diverse Treatment Options through Clinical Trials
I spoke with Dr. Ajai Chari of the University of California San Francisco (UCSF) about the latest breakthroughs in multiple myeloma treatment, including CAR-T cell therapy, bispecifics, and why clinical trials are critical for expanding options for all patients. Here’s an overview of our discussion.
Dr. Ajai Chari: This is my passion, the personalization of therapy. There are no two patients alike. And you can read about a clinical trial, you can go to a patient support group, you can talk to a friend, but that doesn’t mean that’s the right treatment for you.
Dr. Chari: We’ve had hospice conversations with some people. “Let’s try this study.” And those patients are now in their deepest and durable remissions in their entire myeloma journey, despite having had all those drugs. And I think that’s a clear example. If you’ve run out of options, then you should be looking for new strategies, right?”
Dr. Chari: Myeloma is not one of the most common cancers, which are usually breast, colon, prostate, and lung. I bring that up because if you’re a patient that’s diagnosed in the community, chances are your oncologist is very experienced with those cancers, but maybe not as much with myeloma. And studies show that outcomes for patients who are affiliated in some way with an academic center do better.
Dr. Chari: Fifty percent of that information in a first cancer visit goes in one ear and out the other because you’re dealing not only with the diagnosis of the cancer and the intellectual questions, but the emotional part. So I think it’s always good to have a friend or family member to listen in on all of your conversations, so that they can help catch some of the things you might have missed.
Dr. Chari: The number one thing patients are looking for is hope. I think they want to know that they’re going to be able to live as long as they want to live — and with a good quality of life.
For the rest of this interview, watch our program replay ON DEMAND.
Learn what’s changing, how it impacts treatment decisions, and what it all means for patients today.
Multiple Myeloma: Personalized Treatment Options through Clinical Trials
Hosted by The Patient Story Team
Explore how clinical trials are creating more personalized, effective treatment options for people with multiple myeloma in this expert-led discussion, Dr. Ajai Chari (UC San Francisco) and patient advocate Bryon Daily (The Leukemia & Lymphoma Society).
It really helped that I’ve remained physically active as I’ve gotten older.
We all know that as we age, it’s important to take care of our bodies. They heal a lot slower than they used to, and so we may not be able to do what we used to do when we were in our 20s and 30s.
It’s more than just a physical thing. Being active also helped with my mental and emotional state. Exercise helps our bodies secrete hormones and endorphins, those substances that give us a positive sense of being.
Exercise also helps counter some of the side effects of treatment. There’s a mental component to chemotherapy that’s called “chemo brain.” A heavy dose of chemo can definitely impact behavior. It can cause depression and can be debilitating overall. And exercise can help deal with that.
Secondly, in a financial sense, the stars were also lined up in my favor. I was a business owner — I owned an insurance agency and a web hosting business — which generated income without me getting too involved. Because of that, I didn’t have to worry so much about what I needed to do about income while I was undergoing treatment.
I also had good major medical insurance, too, as I mentioned earlier. And we had bought an athletic policy back in 2007, which handled a lot of the cancer debt.
Cancer can be expensive, and if you’re not prepared, it can lead to catastrophe. I’ve seen how it affects others who’ve had to leave work to care for ill family members, whose kids have had to leave school, who’ve had to get mortgages, and so on. It motivated me to find out what I can do to help solve that problem when I could be a productive citizen again.
Lastly, I also leaned on my faith quite a bit to help me get through my treatment.
I consider myself blessed. I got out there and did the work when I could do it again. It was a purpose-driven mission for me.
I consider myself blessed. I got out there and did the work when I could do it again. It was a purpose-driven mission for me.
How My Experience Has Changed Me
People I’ve spoken to who’ve also been diagnosed with a life-threatening malignancy and have been successfully treated for it, come out the other side a little bit different. If they took things for granted before, they don’t anymore. They come away with a higher sense of appreciation for things.
My multiple myeloma experience has made me more vulnerable, and I’ve been able to tell my story without feeling like I’m exposing myself. And it’s to help people get something out of it. My job is to inspire them, help amplify their passion, and elevate them, and also to consider that I reach people I don’t know I’m touching. When you get out on stage and tell your story, you don’t know who might be listening.
I watch other folks who are great at storytelling and try to learn from them. Some days, when I go out there, it’s hit or miss. I feel like I didn’t hit a target, and that I failed at getting across to my audience. But, hey, that’s par for the course, right?
It’s just like in sports. I recall this Michael Jordan quote where he talked about how many times he tried to make a game-winning shot and missed. But he still did become the best in basketball — because he kept trying and never gave up.
So I take inspiration from him. When you’re in this position and have a voice, you just get out there and don’t worry about not getting across. It’s about getting out there to people who need to hear what you have to say. You never know who’s listening to you. They may never get back to you and say, “Hey, I got a lot out of your talk.”
Sometimes they do, though. And when they do, that’s gratifying.
Health-wise, I’m good. I do get aches and pains, but nothing related to the myeloma. A lot of people come out with lesions on their bones. I was diagnosed early, so I didn’t experience any of those symptoms.
I’m 60 years old and I don’t look my age. That’s what people say, at least. I do feel great. I can still go out and run a few laps around a track. I can still lift weights. And, most importantly, mentally and emotionally, I’m intact. That’s the most important thing.
What Survivorship Means to Me
Survivorship is an interesting word and concept.
Some people have trouble with that term. They’d rather be called “thrivers.” And that’s their personal choice. For me, it’s about coming out on the other end better than I was before. Not just physically, but also mentally and emotionally.
I read some books while I was still going through my journey to help me make sense of what was happening, both to myself and others. It’s an existential experience that makes you question your existence and also makes you want to know what it’s all for.
I would encourage people to focus on their mental and emotional stability. First and foremost, because that’s what’s going to drive you to keep yourself physically healthy. There are ways to do so, even for patients who may not be able to do strenuous physical activity.
For example, I play games on the PlayStation 5 with my son. I was a huge gamer while I was going through multiple myeloma. Because the chemo disrupted my sleep patterns, when I would be struggling to sleep, I would sometimes just turn the PS5 on and start playing games like Spider-Man, The Last of Us, and open world games in general.
Of course, I love those kinds of games, but they were also good for me because they helped me maintain my hand-eye coordination.
If I didn’t exercise, it would have been a challenge to get back into shape when I was better. It might even have been hard to navigate my new bodily reality after my experience.
If I didn’t exercise, it would have been a challenge to get back into shape when I was better. It might even have been hard to navigate my new bodily reality after my experience.
What People Need to Know About Multiple Myeloma
Multiple myeloma is a stealthy disease. There’s no single symptom that you can pinpoint and identify as myeloma. The criteria help narrow the symptoms down, but that said, for instance, you can have bone pain or renal failure from any number of other diseases and conditions. It can be hit or miss.
But what we try to promote more than anything else is how important it is to be aware of one’s own body. Be more conscious of your state of health. Eat right. Stop drinking, stop smoking. I know, it’s easier said than done for most people. Some come from families of smokers or drinkers, or can’t access healthy food.
There are a lot of things that you can tell people that may not resonate with them, because they might just not be able to access the solutions you’re talking about. But you still have to continue to share what you know.
Talk to your physician or whoever you go to for medical care, maybe someone at a clinic if you don’t have a primary care physician. Be curious, ask questions. Self-advocate. Seek other opinions, be open to the possibility that the first answer you receive might not be the right one.
And get good insurance.
My Advice to Others
You have to be your best self-advocate, and you have to ask questions that may make you feel uncomfortable. It’s for your well-being.
Self-advocacy isn’t really a term that many people are familiar with, but it needs to be something that more people do.
You want to catch whatever it is as early as you can. Early diagnosis is key to recovery.
Don’t be satisfied with a non-answer or be dissuaded when you know you have to see a specialist. I know it’s difficult if and when an insurance company denies you treatment. But you really have to find a way to push through that.
I know, you can’t just turn on a dime. But it’s so important to do what you need to do, and change what you need to change, as quickly and early as you can. It can extend your life.
You want to catch whatever it is as early as you can. Early diagnosis is key to recovery.
Special thanks again to The Leukemia & Lymphoma Society for supporting our patient education program. The Patient Story retains full editorial control over all content.
Samantha’s EGFR+ Grade 3, Stage 2 Lung Cancer Story
When Samantha was diagnosed with stage 2 lung cancer in 2022, it changed her life dramatically. She says it feels like she’s living two separate lives — one before her diagnosis and the one she’s experiencing now.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Samantha’s stage 2 lung cancer story started after she recovered from COVID-19 in October 2022. She kept experiencing breathlessness, hoarseness, sinus infections, and fatigue. Doctors said it was long COVID, but she thought it might be something else. She spent the next few months seeing plenty of doctors and trying a barrage of cures such as inhalers, steroids, and antibiotics. But nothing worked. In May 2023, she had an X-ray that revealed a lesion on her right lung. She wasn’t familiar with medical terms and thought a lesion was just a minor injury.
When her follow-ups were delayed, Samantha took matters into her own hands and had a private CT scan. Thanks to this proactive step, doctors discovered a tumor. A quick series of referrals took her to a hospital in Cork, Ireland, for a biopsy. Complications during this biopsy revealed that the tumor was located dangerously close to a major artery. Eventually, she had surgery during which the top and middle lobes of her right lung were removed, as were surrounding lymph nodes and an afflicted airway.
After this surgery, Samantha was diagnosed with grade 3, stage 2 lung cancer with an EGFR mutation. The diagnosis overwhelmed her — especially since she was a non-smoker. But she faced it squarely. Radiation and chemotherapy weren’t viable options for her, and so she joined a clinical trial focusing on a particular targeted therapy. She was both hopeful and honored to be the first post-operative patient in Ireland to try this treatment, which is typically reserved for stage 4 cases.
Samantha struggles with side effects from the treatment for her stage 2 lung cancer, including mouth ulcers, fatigue, brain fog, joint pain, and digestive issues. But she remains grateful, as she knows full well how fortunate she is to be able to access this treatment. Her medical team monitors her regularly and tracks her progress, including by conducting blood tests every few months and scans every six months.
Samantha admits that mentally, coping with the loss of her old self is tough. To process these emotions, she attends counseling sessions, where she finds solace in speaking openly and honestly about the emotional impact of her experience without burdening her loved ones.
Samantha’s experience has taught her the importance of early detection. She also urges others to trust their instincts and to insist on having thorough medical evaluations, even when it feels uncomfortable to do so. Her message is clear: you need to be your own health advocate.
Check out Samantha’s video to learn about:
How her intuition led to a life-saving lung cancer diagnosis.
Samantha’s powerful journey from COVID symptoms to stage 2 lung cancer.
Why she says mental health is key in her cancer experience.
The unexpected symptoms and signs that heralded stage 2 lung cancer.
Samantha’s message: Trust your instincts and advocate for your health.
Name:
Samantha V.
Age at Diagnosis:
47
Diagnosis:
Lung Cancer
Mutation:
EGFR
Staging:
Stage 2
Grade:
Grade 3
Symptoms:
Breathlessness
Hoarseness
Sinus infections
Fatigue
Pain in left side
Treatments:
Clinical trial: targeted therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Acute Myeloid Leukemia (AML): Biomarker Testing and a Clinical Trial Gave Joseph Hope
In the summer of 2023, Joseph noticed unusual fatigue and chest pains while coaching mountain biking and participating in a race. A quick ER visit and a CBC confirmed his diagnosis of acute myeloid leukemia (AML).
Despite the whirlwind of emotions, biomarker testing, which can include both testing of your own genes as well as the cancer’s genetic changes to personalize care, became a beacon, and it guided his treatment decisions. Joseph’s prior exposure to chemotherapy as a child raised concerns about treatment-related acute myeloid leukemia risks. Dr. Strickland, his dedicated physician, explained the significance of genetic markers, which helped tailor his treatment plan.
Joseph qualified for a clinical trial involving a new menin inhibitor, an advanced treatment for AML, alongside traditional chemotherapy, as part of what Dr. Strickland called “a tank and a sniper” approach. Joseph embraced the clinical trial, as he felt informed and supported rather than the subject of a medical experiment. Dr. Strickland and his team provided personalized and meticulous care, and the constant presence of Joseph’s wife, Heather, bolstered his confidence. He was also happy to undergo regular check-ins, bone marrow biopsies every three months, and adjustments to his medication dosage.
Today, Joseph is thriving again. He’s back to regular long-distance biking, coaches fellow cyclists, travels with his family, and actively engages his community. He urges others with acute myeloid leukemia to trust credible resources, engage with their care team, and find hope in the knowledge that a fulfilling life is possible.
Read Joseph’s story and watch his video:
Find out how cycling helped him detect his acute myeloid leukemia
Learn the pivotal role of biomarker testing in Joseph’s AML treatment
See why he felt truly empowered by his clinical trial
From diagnosis shock to biking 80 miles — trace Joseph’s path with AML
Delve into the support system that helped him thrive through his acute myeloid leukemia treatment
Thank you to Kura Oncology for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
I hope acute myeloid leukemia patients can see my story and derive hope from it.
About Me
Hi, my name is Joseph. I’m a doctor, a neurologist. I’m married to my wife, Heather; we have children and a few dogs. I’ve been an avid cyclist for years and especially enjoy mountain biking.
I was diagnosed with acute myeloid leukemia (AML) in the summer of 2023. This wasn’t my first experience with cancer. I had cancer as a child and had chemotherapy to treat it.
My Symptoms and Acute Myeloid Leukemia Diagnosis
My story started when I was coaching mountain biking, and I noticed that my legs were becoming fatigued very quickly. And when I joined a mountain bike race, I started having chest pains.
I went to the ER to have myself checked out. I had a CBC done. The results showed that I had AML.
I immediately got airlifted to the Sarah Cannon Institute in Nashville and started seeing Dr. Strickland, and everything took off from there.
It’s a wild ride to find out you have acute myeloid leukemia and to realize that you need to make a quick decision regarding treatment options so that you can start treatment rapidly. They aren’t something you can weigh and think about for weeks and months.
So, it was a whirlwind, if you will.
It’s a wild ride to find out you have acute myeloid leukemia and to realize that you need to make a quick decision regarding treatment options so that you can start treatment rapidly.
I Struggled With Anxiety
I went from someone healthy, active, and surrounded by people I love, to someone who was in this unfamiliar environment and who needed to be isolated from the world because I was going to be neutropenic in several days.
So it was a very anxious time. But I also found hope in my situation, as we discussed my treatment options.
So after three or four weeks, I was able to get a clearer picture of what the next three to six months of my life looked like. And it was then that I felt like I could settle in and realize the path that was in front of me.
Biomarker Testing and How It Narrowed Down Treatment Options
As I said, I had cancer in my youth and received chemotherapy for it. So there was a concern that my acute myeloid leukemia was related to this treatment. Treatment-related AML tends to carry higher risks.
When I arrived at Sarah Cannon, Dr. Strickland immediately explained that we’d be looking at genetic markers and what that might mean for my treatment. He talked about newer targeted therapies and potential plans depending on the results of the biomarker testing. Aside from that testing, I also underwent a bone marrow biopsy.
We started to get the results after a day or two of the biopsy. Because of my prior exposure to chemo, we opted to undergo a more aggressive initial chemotherapy regimen. And as the final testing came back, I found out that I was one of the lucky patients who might be a candidate for one of the new menin inhibitors that was being tested.
And, so, that was very exciting, this idea that I potentially could — stealing Dr. Strickland’s phrase — start out with a tank and a sniper right from the beginning, start out with both traditional chemo and one of these new menin inhibitors.
From that point onwards, the biomarker testing guided our decisions, such as the treatment course as a whole, whether to try new drugs, and, ultimately, the choice to pursue a stem cell transplant.
My Story Continues Below
AML Program Highlight: AML Biomarkers: How Testing Shapes Your Treatment Options
I sat down with The Patient Story’s patient advocate Steve Buechler and Dr. Strickland to discuss how AML biomarker testing shapes patients’ treatment options. Here are some of the key points of our discussion.
Steve Buechler: Dr. Strickland, what are biomarkers, and what are the different types? We hear about diagnostic, prognostic, predictive, monitoring — it sounds pretty complicated. Can you sort it out for us?
Dr. Stephen Strickland, MD: Historically, AML was diagnosed simply by looking at cells under a microscope. And we know now that those cells can look similar under the microscope, but the biology of AML is very heterogeneous. Looking at these biomarkers helps us understand the true diversity of the disease and helps us predict both prognosis and therapeutic options.
A lot of different biomarkers have been developed over the years. We now have a broader spectrum of testing that we do as standard of care at the time of diagnosis to guide our treatment decision-making.
Steve Buechler: For AML in particular, what biomarkers do you commonly test for?
Dr. Strickland: That’s a great question. There are different types of biomarkers, and what we’re really looking at is the biology of the leukemia cell. One major category we look at is cytogenetics — also called a karyotype — which is a chromosome analysis of the leukemia cells. These genetic changes can help us classify patients into favorable, intermediate, or high-risk categories. That classification can influence which therapies we consider, including whether to pursue a clinical trial from the beginning or look ahead to stem cell transplant if the patient achieves remission.
Historically, we’ve had cytogenetics for decades, but more recently, we’ve added molecular profiling using PCR-based tests, single-gene assays, and next-generation sequencing (NGS). These NGS panels can screen for anywhere from 35 to 200 mutations, giving us a vast amount of information.
Some mutations have become standard to test at diagnosis. For example:
FLT3: Patients with FLT3-ITD mutations tend to have higher-risk disease, although the development of FLT3 inhibitors has improved outcomes.
IDH1 and IDH2: These mutations have treatments now, historically used in the relapse/refractory setting, but data is emerging on using them in frontline therapy.
NPM1: Initially important as a prognostic factor, it’s now also being considered as a therapeutic target, especially with new menin inhibitors.
We’ve seen exciting recent developments, including the approval of revumenib—the first therapy for patients with KMT2A-rearranged relapsed/refractory AML. This is being studied in combination with other therapies even in the frontline setting.
At the ASH 2024 annual meeting, data was presented on menin inhibitors like bleximenib and ziftomenib. Both showed promising results when combined with intensive induction chemotherapy, including high complete remission (CR) rates and MRD-negative CRs—which means deep remissions we can verify through molecular testing.
Importantly, these drugs also showed strong activity in patients with NPM1 mutations and KMT2A rearrangements—two groups that have historically responded poorly to standard chemotherapy. So we’re hopeful that this marks a real breakthrough in treating these harder-to-treat cases.
Steve Buechler: Do any of these biomarkers or mutations tend to cluster in specific groups of people based on age, gender, or other social factors?
Dr. Strickland:There’s a variety of factors that we can see. NPM1 can occur sort of across the age spectrum, if you will. But the other aspect is what mutations or other abnormalities are co-occurring, and that has influence. So NPM1 by itself is thought to be a favorable risk feature. But there’s also data that suggests NPM1 when it co-occurs with, say, an IDH mutation or a DNMT3A mutation, that it’s the positive impact may take a hit based on the co-occurrence of these other mutations. And for instance, when NPM1 co-occurs with a FLT3 mutation, FLT3 by itself puts patients into a high-risk category, so to speak. But FTL3 plus NPM1 puts them in an intermediate risk, whereas NPM1 patients by themselves go into a favorable risk.
So I think it’s really not just any single mutation that’s driving it, but really looking at the bigger picture of the molecular profile and the diversity even within a single patient’s leukemia to try and see what the impact is and open the door for additional therapies. We do know that the KMT2A rearrangement historically has been associated with patients who have seen prior anthracyclines, so part of this therapy-related leukemia that we were talking about earlier, some patients who receive prior anthracyclines will have a KMT2A rearrangement and that confers a higher risk disease. And so the availability of these therapies for a traditionally high risk patient population is going to be very important.
Steve Buechler: That makes sense. When I was treated back in 2016, I was given the standard 7+3 chemotherapy, and they tested only for FLT3 — which I didn’t have — and NPM1, which I also didn’t have. They said that would’ve been good to have. So I had neither and ended up in the intermediate-risk category, especially with a normal karyotype. At the time, I didn’t understand any of this — it’s a lot to take in. But thank you for that explanation. How and when do you test for these biomarkers?
Dr. Strickland: At the time of diagnosis. It’s critical to test early because it helps us understand prognosis and also informs treatment choices. Even if we have to start treatment immediately, we want to get these samples before therapy begins. That way, we have the necessary data to decide whether a stem cell transplant might be needed in first remission or whether a patient might benefit from a targeted therapy. We also retest in some cases during remission to evaluate measurable residual disease (MRD)—meaning whether there’s still any detectable leukemia at a very sensitive level.
Steve Buechler: And is this typically done through a bone marrow biopsy?
Dr. Strickland: Yes, usually at diagnosis, it’s done through a bone marrow biopsy, using the aspirate—the liquid part of the marrow.
But some of the tests can also be done from peripheral blood, especially for monitoring over time. There’s some debate over sensitivity between marrow and blood samples, but doing follow-ups through blood can help reduce how often patients have to undergo marrow biopsies. Those are not the most pleasant thing to repeat frequently.
Steve Buechler: Despite its importance, early biomarker testing still isn’t standard everywhere. Why is that, and what are the barriers?
Dr. Strickland: It’s improving, especially over the last several years, and it’s now recommended in the NCCN guidelines. But access still varies depending on where a patient presents.
If a bone marrow biopsy is done at an outside hospital that doesn’t have access to the full panel of molecular testing, we often have to repeat the biopsy once they arrive at a center like ours.
It’s not ideal, but it’s necessary to make informed treatment decisions.
It really takes a team effort—oncologists, pathologists, hospitals—to advocate for this testing and ensure it becomes routine practice.
Steve Buechler: How do biomarkers play a role in clinical trials? Can they make you either eligible or ineligible for certain trials? How do those two things work together?
Dr. Strickland: Yeah, so, you know, it’s definitely been an evolution in the leukemia research space, the clinical trial space, and I’ll say oncology research in general space, and that, you know, as we mentioned earlier, we’re trying to take advantage of the biological characteristics of one patient’s tumor. And so there are a lot of studies that are being so-called biomarker-driven. And if a patient’s malignancy has a specific marker, then we’re trying to get them access to these targeted therapies or snipers, if you will, that we referenced earlier. And so I think that there are opportunities where, you know, sometimes these drugs may be more effective on a broader scale, but at least with the initial development, we’re also trying to enrich the population of patients who are truly gonna likely, hopefully, have a benefit from the medications. And so it’s just us trying to take advantage of the characteristics we now can better understand about one person’s leukemia. Characteristics that we didn’t know existed, say, you know, 30, 40 years ago, but now we have the technology to help us identify this and identify it relatively quickly, and that can be instrumental in guiding us to either commercially available therapies or for clinical trial participation, where there may not be something that’s already FDA approved to target that.
Steve Buechler: So how does knowing someone’s biomarkers impact their treatment choices? And that includes, do biomarkers give you some idea about potential side effects or potential effectiveness of treatments?
Dr. Strickland: The biomarkers can definitely help to guide the decisions on therapy. Not so much from a side effect profile, but more so from an efficacy perspective. You know, the way that I think about our traditional therapies are kind of like going to battle with a tank. Tanks can be very effective, but they’re not very specific. And so some of these newer therapies, these targeted therapies like FLT3 inhibitors, menin inhibitors, IDH inhibitors — all of these therapies are kind of like adding a sniper to the mix. And hopefully by going to battle with maybe both tanks and snipers, if you will, hopefully we can have a more effective outcome in the battle against this malignancy.
For the rest of this interview, watch our program replay ON DEMAND.
AML Biomarkers: How Testing Shapes Your Treatment Options
Hosted by The Patient Story Team
Learn how understanding what mutation you have, like NPM1, IDH, KMT2A, and FLT3 can shape treatment choices—and how patients can work with their doctors to explore every option, including clinical trials.
On day one, Dr. Strickland and I discussed the whirlwind of the acute myeloid leukemia diagnosis and how we could try to navigate and come to terms with it. I felt like I was in such shock that I would be happy to try anything. We also talked about clinical trials and some of the possibilities we could explore, even before we knew what my mutations were.
Unlike in a traditional cancer course where you see a surgeon and an oncologist and then choose your treatment a couple of weeks later, to me, there was such urgency that to hear that I had options, both in the traditional sense and a trial, gave me comfort. As did the fact that they were going to run in parallel and take place simultaneously.
Multiple staff members came up to me and explained the trial, and I thought they did a great job doing so. A representative from the pharmacy also came up and talked about potential side effects and impacts. Thanks to their input and to the fact that they were practically sitting beside me and explaining everything, I found it easy to navigate the forms.
In no way, shape, or form did I feel like I was being experimented on or anything of that sort.
I felt very comfortable with the trial, and I’ve grown to love it as I’ve participated in it.
How the Clinical Trial Impacted Me
In no way, shape, or form did I feel like I was being experimented on or anything of that sort. I felt very comfortable with the trial, and I’ve grown to love it as I’ve participated in it.
There are, of course, some impacts of the trial; a lot of checkboxes, if you will, including some impact on my quality of life later on. I’ve probably gotten to see Dr. Strickland’s staff a bit more often than the average AML patient who’s in remission.
I also loved the way they presented the trial to me at the outset. They said, “Here’s a medicine, we know it works — refractory patients have had good experiences with it. Our question regarding your trial is simply — if we give it to you at the very beginning, do you go into remission quicker?”
They knew that the medicine they were giving me was effective, and they were going to see just how effective it would be for me if they transitioned it up in my treatment. I found a lot of comfort in that.
I get to have a bone marrow biopsy every three months, which is probably not on everybody’s bucket list, but I feel that it’s a small price to pay.
As far as side effects go, I’ve been pleasantly surprised. I feel like I’ve had minimal side effects with this drug. We’ve tried increasing the dose of the drug during the trial, but I didn’t tolerate that very well, and so Dr. Strickland, his team, and the company that runs the trial brought the dose down to the level I had been tolerating. Aside from that, I can say that my experience with this trial has so far been phenomenal.
How My Care Partners Influenced My Decisions
I’m happy that my wife, family, and network have really supported me through my acute myeloid leukemia experience.
My wife, Heather, is an office manager for a medical group, and they got together and told her that she could stay with me and work remotely so she wouldn’t have to leave my side. That was phenomenal and really freed me up and helped me make the tough decisions.
In addition to that, since I’m a physician as well, I had access to other doctors I could call and ask about certain things I wanted more clarity on.
But I felt comfortable with Dr. Strickland. When he entered the room the very first time, he laid it all out and there was nothing left on the table. And as more information came back, I felt he would immediately update me about it and how it would affect my options.
So Heather and I feel that we had all the information we needed to make the best decisions for my care.
I’m happy that my wife, family, and network have really supported me through my acute myeloid leukemia experience.
What I Want AML Patients to Know About Testing and Treatment Options
The best advice I can give a patient who’s just been diagnosed with acute myeloid leukemia is to access great resources. In my neurology practice, patients look up their disease or condition on Google, and they come in with all this preconceived bad information. And that’s so very scary.
But there are great websites out there, as well as professionals who can offer good information. And when I was first starting and heading into this dark time with a lot of confusion, I promised my wife that we weren’t just going to head out on the internet and read up on a bunch of iffy resources.
We were instead going to trust Dr. Strickland and his team and protocols. We were going to focus on the resources he and his team would provide.
I feel like patients would be better served by starting there, versus the huge cloud of misinformation the global internet can be.
I Want Acute Myeloid Leukemia Patients to Have Hope
Where I’m at today is somewhere that I would have loved to have known I would end up during my first month of diagnosis.
I’ve gotten back to biking — I just rode 80 miles last week, and I’m going to do it again this week. I’m an active member of my church. I coach the local mountain bike team. I travel with my family and our dogs; we love going all around the nation and seeing the sights.
I wish I could have known that was possible right out of the gate. And if I had seen an AML survivor doing this well when I was about to have treatment, it would have given me a lot of hope.
I hope acute myeloid leukemia patients can see my story and derive hope from it.
Where I’m at today is somewhere that I would have loved to have known I would end up during my first month of diagnosis.
Special thanks again to Kura Oncology for supporting our patient education program. The Patient Story retains full editorial control over all content.
Active, Determined, Empowered: Paige’s Life with Stage 3 Colorectal Cancer
Paige was diagnosed with stage 3 colorectal cancer in January 2025. Her experience began in September 2024, when she noticed blood in her stool — a symptom she initially shrugged off, but took more seriously when it persisted. She consulted a couple of doctors, neither of whom were very concerned due to her youth and health status. But Paige continued to push and finally got a colonoscopy. The result? A cancer diagnosis that shocked her to the core.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Hearing the phrase “colorectal cancer” was terrifying. Paige had always seen herself as healthy: she enjoyed daily exercise, ate a balanced diet, and had no family history of cancer. The diagnosis was surreal, but her partner, family, and friends rallied around her. Her mom was by her side during the procedure and offered welcome comfort when the reality of her diagnosis hit. Paige was reeling and gladly leaned into her support system.
Paige met with her oncologist, and this welcome visit brought some clarity. They agreed on her stage 3 colorectal cancer treatment plan, which was straightforward: six rounds of chemotherapy, followed by surgery to remove part of her colon and rectum. Paige struggled with the side effects of chemo, including exhaustion, nausea, and feeling unlike herself. However, determined to reclaim her life, she powered through and continued working full-time as an engineer. She had an initial six chemo rounds, after which her doctors recommended two more to ensure the best possible outcome before surgery.
Paige’s upcoming surgery will involve the removal of parts of her colon and rectum. Her doctors have told her that she may need to have an ostomy bag, and she’s steeling herself for this possibility. But Paige is focusing on healing rather than the fear of lifestyle changes. She’s expecting her recovery to take about six weeks, with a hospital stay of 2-3 days post-surgery.
Throughout her stage 3 colorectal cancer experience, Paige has drawn strength from her active lifestyle. Inspired by a pro athlete who stayed active during cancer treatment, she’s continued to enjoy her favorite sports — mountain biking, rock climbing, and skiing — when she can. By doing so, she’s felt empowered and less defined by her diagnosis.
Paige’s advice? Never allow a diagnosis to dictate how you live. Stay engaged in activities you love. Keep your spirits high. Paige believes wholeheartedly that sticking to her lifestyle, despite the pain and discomfort she’s experiencing, is key to being resilient. She’s confident that overcoming stage 3 colorectal cancer will make future obstacles feel manageable.
Make sure to watch Paige’s video for more about:
How she stayed active during chemo, and why this is crucial
The symptom she almost ignored: Paige’s early warning sign
Facing cancer at age 24: her unexpected diagnosis
Why maintaining normalcy is Paige’s secret weapon
From diagnosis to determination: her heartfelt reflections
Name:
Paige S.
Age at Diagnosis:
24
Diagnosis:
Colorectal Cancer
Staging:
Stage 3
Symptom:
Blood in stool
Treatments:
Chemotherapy
Surgery (upcoming): proctocolectomy
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.
How Asking for Help Can Lead to Healing: Kim’s Stage 2 Ovarian Cancer Story
When Kim was diagnosed with stage 2 ovarian cancer (2B clear cell carcinoma) at 46, it opened up a new chapter in her life. Although it was full of medical challenges, it also offered her opportunities for personal growth.
Kim’s health concerns began in September 2020 with pain on her right side, which she chalked up to gas. She started to experience other symptoms over the next months, such as persistent coughing, incontinence, bloating, and night-time pain. These she attributed to asthma, potential menopause, and lifestyle habits.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
But things took an ominous turn in May 2021. Overwhelming pain forced Kim to return to the ER, where a doctor ordered a CA 125 blood test and scans. These uncovered a cantaloupe-sized tumor on her right ovary. The diagnosis was stage 2B ovarian cancer (clear cell carcinoma), an aggressive and rare form.
Kim’s treatment involved a radical hysterectomy, removal of 28 lymph nodes, and six intense rounds of chemotherapy. She experienced harsh side effects, including hair loss. But she took everything in stride, thanks to the strength she found in her faith, her wife Jennifer and her family, and her community.
Kim’s doctors found no evidence of disease in 2022. But Kim’s stage 2B ovarian cancer returned, manifesting as swollen lymph nodes. She underwent more treatments and struggled with the mental toll of recurrent cancer. Kim acknowledged the strain and leaned heavily on her faith and strong support network.
Kim stresses that it’s vital to accept help, as she’s found community support to be profoundly healing.
She urges others to be vigilant about their health, listen to their body, and advocate for thorough medical evaluations. She continues to meet the health challenges brought about by her stage 2B ovarian cancer head-on with hope and a deep appreciation for life’s small yet meaningful joys.
View Kim’s video and learn more about:
How her escalating symptoms led to a diagnosis that changed her life
The crucial role that community support played in Kim’s health journey
How she embraced hair loss with positivity and strength
The mental health challenges of living with stage 2B ovarian cancer
Kim’s advice regarding accepting help and finding hope
Name:
Kim C.
Age at Diagnosis:
46
Diagnosis:
Ovarian Cancer (Clear Cell Carcinoma)
Staging:
Stage 2B
Symptoms:
Coughing
Incontinence
Severe bloating
Nighttime pain
Hard lump on right side
Treatments:
Surgeries: radical hysterectomy, lymphadenectomy
Chemotherapy
Radiation therapy
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.
Stage 3 Esophageal Cancer and the Daily Habits That Bring Him Meaning
Dan was 53 when he was diagnosed with stage 3 esophageal cancer (esophageal adenocarcinoma). He led an active lifestyle, ate healthy, and went to the gym regularly. But in June 2022, during a family dinner, he started having chest pains and numbness in his left arm. Thinking it was a heart issue, he rushed to the ER, but the tests they did there were inconclusive.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Months passed. Dan kept on experiencing chest pain and struggled to swallow. Doctors thought he had heartburn and gastroesophageal reflux disease, and treated him with over-the-counter medications that didn’t help. His symptoms got worse, and by early 2023, Dan could no longer swallow solid food and survived on homemade protein shakes. Frustrated and alarmed, he pushed for an endoscopy, which revealed a 10-cm mass — half the length of his esophagus. The diagnosis: stage 3 esophageal cancer.
Dan’s treatment included five chemotherapy cycles, surgery to remove part of his stomach and esophagus as well as afflicted lymph nodes, and three more chemo sessions. Before surgery, he gained 12 pounds, since he felt that recovering from the procedure would be tough. After surgery, he was told, “We got all the cancer,” which was a profound relief.
Even though Dan’s stage 3 esophageal cancer surgery was successful, his life afterwards isn’t without challenges. He manages physical restrictions, eats smaller meals due to his changed digestive system, and copes with significant side effects like brain fog and memory lapses. But he remains physically active, journals for mental clarity and to ensure he doesn’t forget important things, and advocates for esophageal cancer awareness through support groups and fundraising efforts.
And most of all, Dan stays positive and feels blessed. He says, “Whatever I lost through this experience, I’ve gained in so many other areas of my life.”
Dan’s story highlights his faith and resilience and how it’s been shaped by his gratitude and sense of purpose. He encourages others to cherish every moment of their lives, get screened for cancer, advocate for themselves, and support cancer research. He urges others to understand that health setbacks don’t define us — just as his own did for him, they can inspire growth and lead to new beginnings, too.
Watch Dan’s video and discover:
How the chest pains he experienced led him to uncover stage 3 esophageal cancer.
What finally revealed Dan’s true health issue.
How he stayed strong through chemo, surgery, and life after cancer.
Why Dan advocates for esophageal cancer awareness and early screenings.
The small but significant daily habits that help Dan live fully after his cancer treatment.
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.
How Vigilant Screening (For a Different Disease) Found Alexis’s Stage 3 Lung Cancer
Alexis was only 29 when life threw her an unexpected twist, and she was diagnosed with stage 3 lung cancer (specifically, a stage 3A neuroendocrine tumor) in July 2022. Before her diagnosis, she experienced symptoms like shortness of breath and a strange need for deep yawns, which she attributed to anxiety. Looking back, she realized that these signs had been quietly lingering since her college days.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Alexis’s diagnosis came almost by accident. Concerned about a potential genetic heart condition her father had, she underwent a series of tests. An echocardiogram revealed an abnormality, leading to a CT scan that unveiled enlarged lymph nodes. Despite initial reassurances from her doctor, further tests at the University of California San Francisco (UCSF) confirmed the presence of a spot on her lung. A biopsy later confirmed the truth: it was stage 3A rare lung cancer, a neuroendocrine tumor — quite rare and not the usual kind found in the lungs.
Interestingly, since 2019, Alexis had known that she had a BRCA2 gene mutation and had stayed vigilant with screenings for breast and ovarian cancers. The shock, therefore, came from an unexpected corner: her lungs. Despite not having a history of smoking, she fit the profile of rising lung cancer cases among young women. Her assumption leaned towards non-small cell lung cancer, but reality painted a different picture.
Alexis experienced a rollercoaster of emotions when navigating her diagnosis. Initially relieved when told her tumor was a typical carcinoid, she soon faced the complexity of her condition. Her tumor was atypical, sitting on the edge between two classifications. This distinction influenced her treatment options. Surgery was the cornerstone, and despite hopes of lung-sparing measures, she ultimately lost her entire left lung.
Alexis’s recovery from stage 3A rare lung cancer was painful but illuminating. Her breathing improved post-surgery, highlighting symptoms she hadn’t realized were problematic. Facing chemotherapy decisions, she chose a pill regimen over IV treatments, managing side effects like nausea with the support of medication.
Her follow-up scans brought relief: clear results signifying no evidence of disease. But the shadow of uncertainty lingers. Alexis grapples with the fragility of life plans once taken for granted, such as marriage, children, and simple joys like walking and baking. Remarkably, she met her now-husband just five months before her diagnosis, and his unwavering support became a beacon during her darkest days.
Alexis’s story isn’t just about facing stage 3A rare lung cancer; it’s about confronting vulnerability, redefining what a fulfilling life looks like, and relishing the unexpected depths of support from friends and loved ones. Her experience challenges stereotypes about caregiving and emphasizes the importance of knowing oneself amidst life’s unpredictability.
Watch Alexis’s video and learn more about:
How a routine heart check led her to an unexpected lung cancer diagnosis
Alexis thought she just had anxiety — until she discovered it was stage 3A rare lung cancer
What losing a lung taught Alexis about life, love, and breathing easier
From hypochondria to rare cancer: her surprising health journey
How Alexis is rewriting her story after her rare lung cancer experience
Name:
Alexis C.
Age at Diagnosis:
29
Diagnosis:
Rare Lung Cancer (Atypical Lung Neuroendocrine Tumor)
Staging:
Stage 3A
Symptoms:
Intermittent shortness of breath
Treatments:
Surgery: lung resection
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.
Nevin Isn’t Letting Stage 4 Hodgkin Lymphoma Define Him
Nevin’s story is one of resilience, self-advocacy, and navigating life’s unexpected turns having been diagnosed with stage 4 Hodgkin lymphoma. His experience underscores the importance of trusting your instincts when it comes to your health.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
It all began with a relentless cough that didn’t improve even after Nevin quit smoking. Then came the intense itchiness, feeling like bugs crawling under his skin, and a persistent fatigue that made simple tasks overwhelming. Doctors thought he had asthma and eczema, but Nevin knew something was off. It wasn’t until he discovered a hard lump on his neck before his best friend’s wedding that everything changed. An urgent care doctor quickly connected the dots, leading to tests and a biopsy confirming stage 4 Hodgkin lymphoma.
Through all the hospital visits, treatments, and life adjustments, like having to leave his job in Los Angeles and move back home, Nevin remained grounded. He found strength in self-advocacy, pushing for answers when the initial diagnoses didn’t sit right. Mental health became a priority, as did surrounding himself with supportive people. Even on tough days, he focused on staying active and cherishing his good days.
Nevin emphasizes not letting cancer define who you are. The activities you love, the dreams you chase — they’re still part of you. Although his treatments brought significant side effects like nausea, dizziness, and even red-colored urine, Nevin’s mindset stayed strong. He capitalized on his good weeks, maintained strong connections with loved ones, and kept hope alive.
Nevin also confronted tough topics like financial concerns, survivorship, and fertility, grappling with the possibility of not being able to have biological children post-chemo. It was a reminder of life’s unpredictability, but also of the privilege of choice, even when options are limited.
Nevin’s stage 4 Hodgkin lymphoma story is a testament to the power of hope, self-advocacy, and community. It’s about facing life head-on, even when the cards you’re dealt aren’t ideal. His experiences resonate with anyone navigating serious health challenges, highlighting the universal need to listen to your body, speak up, and hold on to what makes you you.
Watch Nevin’s video to find out more about:
How a simple cough led to his life-changing stage 4 Hodgkin lymphoma experience.
Why trust in your gut can be your best medical advocate.
How cancer doesn’t have to affect one’s self-identity.
The emotional challenges of putting your dreams on pause for health.
Nevin’s candid reflections on fertility, mental health, and hope.
Name:
Nevin S.
Age at Diagnosis:
28
Diagnosis:
Hodgkin Lymphoma
Staging:
Stage 4
Symptoms:
Bad cough
Severe skin itch, especially on the legs
Extreme fatigue and dizziness
Night sweats
Lumps in the neck and armpit
Treatments:
Surgery: lymphadenectomy
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.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Symptoms: Severe fatigue, shortness of breath, night sweats, bloating and stomach distension after eating, abdominal pain, little to no appetite, high fever, lump in the pelvic area Treatment: Chemotherapy ...
