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Bladder Cancer Breakthroughs 2025: New Treatments & Bladder-Sparing Advances

Bladder Cancer Breakthroughs 2025

New Treatments & Bladder-Sparing Advances

Bladder cancer care is evolving rapidly, with new treatments offering the potential for longer survival and better quality of life—including the possibility of preserving the bladder.

In this expert-led discussion, MD Anderson’s Dr. Ashish Kamat breaks down the latest in research, emerging therapies, and what patients and care partners need to know now to make informed treatment decisions.

Bladder Cancer Breakthroughs 2025: New Treatments & Bladder-Sparing Advances
Hosted by The Patient Story Team | 56m 1s
Bladder cancer care is evolving rapidly, with new treatments offering the potential for longer survival and better quality of life—including the possibility of preserving the bladder. In this expert-led discussion, MD Anderson’s Dr. Ashish Kamat breaks down the latest in research, emerging therapies, and what patients and care partners need to know now to make informed treatment decisions.
World Bladder Cancer Patient Coalition (WBCPC)

We would like to thank our promotional parter, The World Bladder Cancer Patient Coalition (WBCPC), which brings together bladder cancer patient organisations from around the globe to improve the lives of people affected by bladder cancer. They are committed to raising awareness, providing trusted patient information, and ensuring the patient voice is heard in research, policy, and care.

Johnson and Johnson J&J logo

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


Edited by: Katrina Villareal


Introduction

Stephanie Chuang: My name is Stephanie Chuang. I’m a cancer survivor, patient advocate, and founder of The Patient Story. The mission came from my experience of trying to deal with a diagnosis and navigating through all of the questions and not knowing.

Here at The Patient Story, we try to humanize this information for you and part of that is to provide access to topic-specific cancer experts, such as Dr. Ashish Kamat from MD Anderson, so that you can learn more and empower yourself or your loved one in your care. We’ve had more than 100 million views of our in-depth story videos that mostly feature patients, sometimes caregivers, care partners, and doctors. Our goal is to help promote self-advocacy and connection.

We want to thank our sponsor, Johnson & Johnson, for its support of our independent educational program. This allows us to do more content like this for free. The Patient Story retains full editorial control. While we hope this is helpful, this is not a substitute for medical advice. Please consult with your healthcare team when making treatment decisions.

Stephanie Chuang
Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances
Dr. Ashish Kamat

We’re talking about bladder cancer treatments in 2025 and beyond. This follows big meetings, including the 2025 American Urological Association (AUA) annual meeting, where top researchers gather to learn and discuss the very latest. Our focus is on what’s new and promising, all through the lens of what patients and care partners need and want to know about to stay informed and empowered.

Leading this important conversation is Dr. Ashish Kamat, an endowed professor of urologic oncology at MD Anderson Cancer Center in Texas. He leads many patient advocacy groups and efforts, including the World Bladder Cancer Coalition. He’s a global leader in bladder cancer research, clinical trials, and bladder-sparing strategies. He’s been in the field for over 20 years and has published a few hundred publications. He’s the president of the International Bladder Cancer Group (IBCG) and the International Bladder Cancer Network (IBCN).

Dr. Kamat, I already told you, I’ve got to pause after that. You’ve got so many things and accolades, but what I want to say is thank you for joining us.

What Inspires Dr. Kamat to Work with Bladder Cancer Patients?

Stephanie: I’ve seen your name in so many patient-facing efforts and discussions and I’d love to ask you. What drives you to go beyond the clinic, to try and get as much information and awareness to as many patients and care partners as possible, even those who are not in your direct care?

Dr. Ashish Kamat: First, thank you so much for having me. As you said, it’s very important to reach out to patients, not just because that is what we do, but if we don’t do that and we don’t get patients and their carers to be educated, involved, and understand the disease process, then we can’t give them the best chance of a cure. It’s not just surgery, medication, or radiation, but it’s a true partnership. In some ways, it’s a selfish motive to get patients more educated because it helps me give them the best results, which in turn helps both of us.

Stephanie: I love that. In the spirit of this conversation, I read one of your quotes, which was, “Nothing is more rewarding than hearing a patient say, ‘We made the decision together,’” and I loved reading that. Thank you so much for all that you do.

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

Categories of Bladder Cancer Patients

Stephanie: Let’s start this conversation by addressing some of the basics of bladder cancer for those who are newer to the diagnosis. Of course, this conversation is not individualized, so we’re not able to address every single potential situation on diagnosis. But in broad strokes, how do you categorize patients in determining what treatment options you might recommend? Would that be muscle invasive or not, high- or low-grade, and staging? What goes into your ultimate recommendations when you’re talking to patients?

Dr. Kamat: The first thing I always want a patient to understand is what disease state they have. From that perspective, I always try to have the patient think of their bladder as a balloon and the muscle layer as the rubber of the balloon. Just like a balloon, when the bladder’s empty, it’s collapsed and crumpled. When it fills up with urine, it gets larger and thinner.

It’s important for the patient to understand that just because it’s not muscle invasive, if it’s high-grade, it can still be a threat to life.

Dr. Ashish Kamat

With that analogy, think of the muscle layer being the rubber of the balloon — the two layers on the inside and the muscle layer on the outside. When these tumors start, they start on the inner surface of the bladder, but they set their roots down towards the muscle of the bladder. That muscle of the bladder getting involved — or the rubber of the balloon, so to speak — is the key determining step as to whether it’s safe to save the bladder or not. That’s the first thing that I like patients to understand.

Do you have muscle invasive disease, where our focus shifts to whether we can save the bladder and, if not, do we need to do radical surgery? Do we need chemotherapy? Do we need to do trimodal therapy with radiation? Or is the tumor not even in the muscle yet? In that case, we’ll aim to save the bladder, but then what do we need to do?

Once I go through that broad categorization, then I help the patient understand: is it a low-grade disease or a high-grade disease? When the tumor is noninvasive, you can have a low-grade disease, which again is still cancer, but for most practical purposes, you can almost treat them like warts. They’re nuisance factors and require intervention, but they’re not going to threaten our patients’ lives.

On the other hand, you have high-grade tumors, which may be small — smaller than just a point of a pencil — but they can kill the patient. It’s important for the patient to understand that just because it’s not muscle invasive, if it’s high-grade, it can still be a threat to life. That’s the majority of patients that we see.

Of course, there is a small percentage of patients who present with novel metastatic disease, where the cancer’s already spread outside the bladder to other parts of the body. When that happens, I try to help the patient focus our discussion. If the tumor’s left the bladder, we focus on how we have to treat the rest of the body first and then bring our attention to the bladder to see if, at some point, we still need to address what happened in the bladder to begin with.

How Common are the Different Types of Bladder Cancer?

Stephanie: How many patients typically land in these categories?

Dr. Kamat: The most common presentation for a patient is non-muscle invasive disease. Usually, about 70 to 75% of patients will present with noninvasive disease. Roughly 20 to 25% patients will present with muscle invasive disease, where it’s already in the muscle of the bladder. Fortunately, only about 5% of patients present with metastatic disease because that’s where a cure is hard.

If you see blood in the urine, don’t ignore it. Let someone know.

Dr. Ashish Kamat

Unfortunately, it is gender-differentiated. Women tend to have a higher risk or percentage of presenting with more advanced stages of disease. Partly because when the most common presenting symptom of bladder cancer is blood in the urine, you can imagine many women, especially young women, get told, “It’s not anything to worry about. It’s probably that time of the month. It’s probably a contaminated sample.” It’s important for primary care physicians and females to know that if you see blood in the urine, don’t ignore it. Let someone know.

Stephanie: I appreciate that. We’ve certainly done lots of these stories and that’s something we hear commonly. Especially as a woman, it’s easy to dismiss or attribute it to something else. Always, if you don’t feel well, if something’s not right, or if something’s concerning, you’re saying to advocate for yourself. Find someone who’s going to address that. Is that right?

Dr. Kamat: Absolutely. The best advocate a patient can have is themselves and their family, and, of course, us as partners, but they have to find the right advocate. Before they find someone to advocate for them, I want patients to empower themselves to say, “I’m not willing to take this response that you’re giving me, saying it’s nothing to worry about. I hope it’s nothing to worry about, but tell me why it’s nothing to worry about.”

Getting Patients and Care Partners Involved in Treatment Decisions

Stephanie: I also read that non-muscle invasive bladder cancer, which, as you said, most people are diagnosed with, behaves more like a chronic condition that requires ongoing care, but it does require that because of high recurrence rates. Can you talk more about how that informs your approach with patients?

Dr. Kamat: Stephanie, that’s where it’s important to get the patient and their family involved early to set expectations a little bit. But also, I like to ask patients, “Tell me what’s important to you.” Non-muscle invasive bladder cancer is a chronic condition and we want to make it a chronic condition. We don’t want to make it such that a patient is diagnosed and then they die from their cancer. If you do the right thing and we treat the patients correctly, we are saving their bladder, but then the bladder is at risk of the tumor recurring.

In some ways, I allude to this with patients to make it easy to understand. Think of your backyard. You have a couple of weeds. You see them and you want to treat them, but then you still have the backyard in place, right? And unless you remove the entire sod, you’re going to have weeds pop up.

Some patients will say, “You know what? I can’t keep coming to the doctor’s office every three to six months. I live too far away. I had to have my grandson or granddaughter take time off to bring me there. Can you give me one-and-done treatment?” In that situation, sometimes even for a noninvasive disease, we will do a radical cystectomy, which is to remove the entire bladder. Yes, that is a drastic step, but for particular patients — unfortunately, a small number of patients — that is something that they want because it’s one and done.

I don’t encourage that, but since you asked, it’s important for me to know from a patient their desire for their treatment paradigm. If a patient tells me that they want a one-shot treatment, then we have to take a drastic step. But for most patients, it involves regular checkups, regular treatments, evaluation of the bladder, cystoscopy, cytology, imaging, etc.

How Important are Biomarkers in Making Treatment Decisions?

Stephanie: For a lot of people, their decision-making is largely based on efficacy, like how well this will treat the disease, but also the impact on quality of life, which is something we talk about across all kinds of cancers. Is there anything else upfront that you want to make sure that patients and their families understand? Are there other factors, for instance, that might inform a different way of treating them? We hear a lot about biomarkers in the space of solid tumors, in particular.

Dr. Kamat: Biomarkers is a field where we and most of us in this oncology space are very interested in. They help us understand the biology and differentiation of bladder cancer treatments, paradigms, and development, etc. But in some ways, we’re fortunate in the sense that the best treatment for non-muscle invasive bladder cancer is biomarker-agnostic. It’s an immune therapy called intravesical BCG, which works so well that we haven’t needed to use biomarkers to change or inform the treatment paradigm.

Don’t spend your own money doing all of this. It’s not going to help you or us upfront.

Dr. Ashish Kamat

Sometimes I see patients walk in with sheets of paper where they’ve paid out of pocket to get all this testing done. It’s not helpful, other than as a research or educational tool. If a patient wants to understand, “Is my cancer being driven by FGFR3, PD-1, or something else?” That’s great for education, but it doesn’t help us in today’s day and age with the upfront treatment.

Now, if the tumor doesn’t respond to first-line therapy, then we will want to do biomarker analyses because there are FGFR-directed therapies and specific Rb-directed therapies. But for that, we want to look at the tumor that develops after the treatment hasn’t worked. Looking at the first tumor itself is not cost-effective for the patient. From a research perspective, we do biomarker analyses all the time. This is more for patients. Don’t spend your own money doing all of this. It’s not going to help you or us upfront.

Stephanie: Thank you. That’s important because we hear things in the world of science and major news publications, and it’s hard to understand what applies to our specific situation and cancer.

Treatment for Low-Grade vs. High-Grade Bladder Cancer

Stephanie: Before we dive into more of the latest and promising therapies and options, what typically is the treatment decision-making path or the options given based on these larger categories of patients? If you’re talking about the non-muscle invasive bladder cancer and then high-grade versus low-grade, here’s how we usually do this for low-grade and here’s what we normally recommend for high-grade. Could you provide a more basic picture of what that landscape is?

Dr. Kamat: So let’s assume a patient is sitting in front of me and he or she has low-grade, non-muscle invasive bladder cancer. The first thing is to explain to the patient that that’s great news. If you’re going to have any kind of bladder cancer, this is the one to have. Yes, it is cancer, but it’s extremely treatable and even though it might recur at some point in your life, the recurrence is not a problem

For the treatment of low-grade, non-muscle invasive bladder cancer, the treatment is removing the tumor, which is usually done with the transurethral resection (TURBT). We look in the bladder with a scope. Currently, we use electricity to remove the tumor. Some places use lasers, but there’s no real benefit to one over the other. Then we give a single shot of chemotherapy into the bladder. That’s what the majority of patients need and what the majority of patients respond to.

Now, some patients have a recurrence of the tumor and as long as the tumor stays low-grade, that patient then transitions into intermediate-risk. It’s not high-risk. The only reason we call it intermediate-risk is because we want people, physicians especially, to understand that it’s gone from low-risk to intermediate-risk, so we might need something more. What is that something more? Intravesical therapy, either in the form of chemotherapy maintenance — so once a week for six weeks and then monthly chemotherapy maintenance — or intravesical BCG.

Now there’s a shortage of BCG across the globe. In today’s day and age, we don’t tend to recommend BCG for patients with low-grade disease, not because it doesn’t work well, but because there’s not enough BCG and it is something we need to reserve for our high-risk patients. For the low-grade, intermediate-risk patient category, the treatment is still intravesical chemotherapy.

Now there are paradigms for patients who are too sick to go to the operating room or who’ve had a recent myocardial infarction (MI) or heart attack and they’re on blood thinners, an antiplatelet drug like clopidogrel (Plavix), or aspirin, and we want to avoid a procedure. We can ablate these tumors with chemotherapy upfront. There are newly-approved agents, like the recently FDA-approved MitoGel (now known as Jelmyto), which is mitomycin in a gel format, where you can ablate the tumor. But that’s, in some ways, a select group of patients who are trying to avoid resection of the tumor or we are trying to buy some time before we can take them to the operating room.

Now, moving from the low-grade patient with low-risk or intermediate-risk category, the next category is the high-risk patient. Any patient with high-grade tumors is considered high-risk, which includes carcinoma in situ (CIS) or T1 disease. There are a lot of factors that come into play with regard to treatment recommendations.

Patients who have high-risk tumors can be further categorized according to their actual risk. If they have certain parameters that make them extremely high-risk — and I’m talking about risk of progression and metastatic disease — I might recommend to a patient, saying, “Your tumor is non-muscle invasive, but it’s getting there. It’s getting to become muscle invasive, so you might still want to consider radical treatment upfront.” Fortunately, that’s a small percentage of patients. For the majority of patients, we can still recommend treatments that allow us to spare their bladders.

The gold standard for many years — for the last 40-plus years and it’s not been dethroned yet — is intravesical immunotherapy with BCG. BCG (Bacillus Calmette-Guérin) is developed from the tuberculosis vaccine. It’s been used for other cancers in the past, like melanoma and leukemia, but it was toxic because you had to give it in the blood. With bladder cancer, we can put it in the bladder.

Early data suggested that it was fairly toxic to patients, which is because people didn’t understand how to use it. If it’s used appropriately with appropriate pre-medication or interval spacing, etc., 90% of patients can finish the whole three-year prescribed course. If you use adequate BCG, the recurrence rates are in the teens and the progression rates are in single digits. An efficacy rate of 90% when it comes to preventing progression of disease of high-grade bladder cancer allows 90% of patients to spare their bladder.

Again, nothing’s 100%. If it doesn’t work or patients can’t tolerate it, we have to use other treatments and that’s where you’ve seen this explosion of drugs coming up recently. There’s gene therapy with nadofaragene firadenovec-vncg (Adstiladrin). There’s cretostimogene grenadenorepvec. There’s an intravesical pretzel device. There is nogapendekin alfa inbakicept (Anktiva), which is the bioshield that Dr. Soon-Shiong has been talking about all over the world recently. All of those come in after BCG has not worked for a particular patient.

Stephanie: Thank you. I know it’s a lot to talk through. We will be talking about all this, but, of course, the explosion, so that people understand what they can consider and weigh might be good for them personally.

The Role of Biomarkers in Muscle Invasive Bladder Cancer

Stephanie: Biomarkers haven’t been a thing yet in bladder cancer. That’s largely a good thing, in that most people don’t require that. The standard of care has worked well. But as you have mentioned, there are meetings and gatherings where people are trying to figure out more about how they may play a role in bladder cancer, is that right?

Dr. Kamat: Absolutely, Stephanie. We were talking about noninvasive disease. If we move into the muscle invasive space, there, the biomarkers are showing more promise and slightly more utility. They’re still not used in the clinic. They still don’t inform us of how we counsel a patient, but they help us inform the patient about their prognosis. For patients who have muscle invasive disease, the discussion becomes, “How can we get you the best chance of long-term cure?” And that usually involves some form of bladder removal.

There is trimodal therapy, which, in selected patients, can offer the option of sparing the bladder and providing long-term control, but that’s the minority of patients. The majority of patients do require radical cystectomy, unfortunately, to remove the bladder. And then to give them the best chance of long-term cure, there is neoadjuvant therapy and with the new paradigm, sandwich therapy that comes into play.

Neoadjuvant therapy essentially means getting treatment before the surgery. Traditionally, it involves cisplatin-based chemotherapy, which can be fairly toxic. Roughly 40% of patients can’t even get cisplatin because of cardiac disease, renal dysfunction, age, neuropathy, or something else, so other drugs have been studied and are being studied to see how they can help us give patients who are not as cisplatin candidates some treatment.

In more recent times, the cisplatin combination has been combined with immunotherapy, immune checkpoint inhibitors, and the NIAGARA protocol, which is the most recent development in the space. This protocol essentially suggests that combining combination chemotherapy with a checkpoint inhibitor before surgery and then continuing the checkpoint inhibitor after surgery can offer the patients the best long-term chance of cure in the muscle invasive space.

This is where the biomarkers have come in handy. There are biomarkers that people have developed, trying to help us understand which patients may respond so well to systemic therapy that we don’t have to take the bladder out. Again, this is being studied. It’s not something that I can say a patient should go to their physician and say, “I have this biomarker. I don’t want my bladder out.” No, it’s not ready for primetime, but we’re looking at those. There are DNA repair genes. There are other agents and other markers we’re looking at.

The biggest buzz is around circulating tumor DNA (ctDNA) because data and evidence have come out that suggest that in patients who have detectable levels of circulating tumor DNA, it puts them in a category for prognosis that is not as good. And if they don’t have circulating tumor DNA, then it gives them a better prognosis. Again, this is a research field.

But it’s been studied in the sense that if a patient has elevated ctDNA, do we need to escalate their treatment? If they don’t have circulating tumor DNA, can we de-escalate that treatment? In other words, less toxicity but the same efficacy. A trade-off, of course, is that we need to offer patients shared decision-making because, like I said, it’s currently not standard of care. It still is a research question.

Everything is crucial because bladder cancer is not one of those diseases that you get second chances with, so you want to get the best treatment right up front. The whole team effort is very important.

Dr. Ashish Kamat

Your Bladder Cancer Team: Who’s Involved?

Stephanie: Before we dive even deeper into the details of what’s the latest, typically — and I know it depends on whether someone’s getting care at an MD Anderson versus a community provider or a different practice — what is the makeup of the bladder cancer care team and does that impact what you recommend to people?

Dr. Kamat: For all the time I’ve been doing this and in many parts of the world when I travel and help set up their cancer programs, one of the things I’ve been a champion of is to emphasize that bladder cancer is a multidisciplinary cancer. In order to give our patients the best chance of a cure, it has to be such that everything is considered. Yes, I’m a urologic oncologist on the surgical side, but bladder cancer is not a surgical disease, a medical disease, or a radiation disease. We have to look at the patient holistically.

That’s why whenever we’re guiding patients as to where to get their care, I can’t have everybody flying to Houston to be treated here at MD Anderson, but I tell them, “Wherever you seek your care, make sure that the care team over there is not just one person. That it involves not just the surgeon, but also the medical oncologist, the radiation oncologist, the nursing team, and the support staff.” Everything is crucial because bladder cancer is not one of those diseases that you get second chances with, so you want to get the best treatment right up front. The whole team effort is very important.

Concerns from Patients About Their Bladder Cancer Treatment

Stephanie: I’m sure a lot of people have traveled to see you, given your expertise. Are there common situations you’re hearing from them? Like, “Hey, I saw such and such. They’re not bladder cancer specialist and they wanted to immediately go to this step.” Or maybe things that you’re seeing at different levels that might make it harder for patients to understand what’s good for them?

Dr. Kamat: Yeah, and that’s why organizations like The Patient Story are very important because I see that very often. Patients will come in and say, “This is what I was told. I have no choice. I have to do this.”

First off, every patient has a choice, so when I hear that, it makes me not very happy because patients always have a choice. Our role is to guide them to make what I think is the best choice for them, but it’s very patient-specific. Like I said earlier, what may be right for one patient, like surgery, may not be right for someone else and it might be purely based on their beliefs or their support structure.

Patients always have a choice. Our role is to guide them to make what I think is the best choice for them, but it’s very patient-specific.

Dr. Ashish Kamat

But the other thing that often gets us is that if a patient goes to see someone who doesn’t do bladder cancer all the time, it’s not their fault. It’s not the physician’s fault. The physician is trying to do the best they can, but if they’re treating 10 other cancers or 10 other problems, I can’t expect them to be at the forefront of the latest in that arena. So they’re now offering the patient what is the best treatment in their honest opinion, which might not be the latest cutting-edge.

I always recommend that patients get a second opinion. Even if they come to see me and they want a second opinion from somewhere else, go get it from somewhere else. It’s good for patients to hear, from at least two separate people, if that treatment truly is the best treatment for them and then make the decision.

Now, of course, when patients have to get treated — like with chemotherapy, for example — I often tell them, “You don’t have to be stuck in Houston for the entire duration. Go back home. Your physicians are extremely qualified.” Everybody can give chemotherapy. As long as they’re willing to follow our protocol or our recommendations, get the chemo where it’s easier for the patient.

When it comes to surgery, it’s slightly different because surgery for bladder cancer is extremely specialized; it’s not something that most people can do unless they’re highly trained and it’s not something that I recommend patients go to someone who does it once in a while. It’s very important to go to someone who does it all the time, has a team to support them, not just the surgeon, but the nursing staff, the ICU staff, the anesthesia, the stoma nurses, etc.

Surgery for bladder cancer is extremely specialized; it’s not something that most people can do unless they’re highly trained and it’s not something that I recommend patients go to someone who does it once in a while.

Dr. Ashish Kamat

Ironically, in many ways, people forget that that’s just as important when it comes to radiation therapy. Even in radiation therapy, it’s not the machine that’s necessarily important. There might be multiple places in the country that have a good machine, but it’s the radiation technologist and the radiation oncologist that’s planning the treatment paradigm who can make a difference between radiation that helps save the patient’s bladder versus radiation that causes so many side effects that the patient then loses their bladder and their rectum. That is very important.

How to Find the Right Provider

Stephanie: Where can people go to figure that out? MD Anderson is world-class and people know about it. But in terms of figuring out if someone is the right surgeon or the right institution with people who can do radiation therapy with the precision that we need, how would people go about finding that?

Dr. Kamat: There’s a lot of junk online, but there are some good resources. Your institution, of course. The Bladder Cancer Advocacy Network (BCAN) is a very good, reliable place where patients can go because it’s all for patients and by patients. I recommend that patients make that their first stop. On a global scale, the World Bladder Cancer Patient Coalition has good resources.

It’s the radiation technologist and the radiation oncologist that’s planning the treatment paradigm who can make a difference.

Dr. Ashish Kamat

But I always tell patients to ask their family doctor and local physicians. “Who do you trust here? Who would a patient’s family doctor send their own family to?” Because that’s important as well. Not everybody who does bladder cancer makes it onto these resource sites. Just because I haven’t trained someone or haven’t heard of them, but they’re in Boise, Idaho, doesn’t mean they’re not doing excellent work. The local community of physicians often knows who is good. Conversely, often they know who may have published 5,000 papers, but is horrible. It’s not just academia. It is taking care of a patient that’s important.

Stephanie: I appreciate a lot of what you said. I also want to go back to what you said earlier, which is that it’s not that the practicing physicians aren’t smart; it’s that they are generalists. There’s no way, with all the advancements happening at the pace they’re happening at, that they could keep up with all of the things that are happening in the research. Thank you for that.

Exciting New Cancer Treatments on the Horizon

Stephanie: Let’s dive in more. You already talked about some of the explosion of options that have come up recently. You talked about gene therapy, pretzel devices, and BioShield coming in after BCG hadn’t worked. Can we go through some of the ones that you’re most excited by? And again, in the spirit of what patient group would be most interested in each of these options?

Dr. Kamat: The biggest explosion of data has been in two separate spaces. The first one is for the patient who has high-risk bladder cancer, has tried BCG and it hasn’t worked, and is now faced with a conundrum as to what to do next. The standard treatment for many years was to remove the bladder because there were no real drugs approved and there was nothing available. Unfortunately, when drugs were approved, they had a 4 to 5% success rate at two years. No patient wants to hear, “I’m going to try something with a 4 or 5% success rate.”

Because of that, different organizations came together and the FDA partnered with a lot of us and developed this paradigm of BCG-unresponsive disease. As many patients might know, there was an explosion of drugs studied in that space and currently has the most activity. If a patient has tried BCG and still has recurrent high-grade disease in the bladder, what are the options? That’s where the drugs have been approved, that’s where drugs are being studied, and that’s where some of the agents that I talked about come into play.

The first drug that was approved in that space is pembrolizumab (Keytruda), which is a systemic immuno-oncology (IO) therapy and the results were very exciting at that time, but there were some toxicities. Not many patients today will get single-agent pembrolizumab (Keytruda) for BCG-unresponsive disease, but there are studies using pembrolizumab (Keytruda) with other agents that I think will offer patients the opportunity to get that systemic therapy backbone plus something else.

The next agent that was approved in that space was intravesical gene therapy, nadofaragene firadenovec-vncg (Adstiladrin). Now this is a gene therapy that allows the patient’s bladder to, in some ways, become a bioreactor because it transfects the bladder cells with an adenovirus that then helps with the production of local interferon-alfa 2b (IFNα2b).

That has the advantage in the sense that it’s given in the bladder once every three months, so the patient doesn’t have to come to the clinic every week or every other week. It’s once every three months. The efficacy number, roughly at about 12 months, is that 25% of patients will have a positive result and be in disease remission. And that’s great, right? Because we can tell the patients, “It’s approved for BCG-unresponsive CIS. Let’s try it. If it doesn’t work, we’ll know and we can switch to something else. But if it works, it’s great because it’s once every three months and you might have at least a 25% chance of saving your bladder just with this treatment.”

The third drug that was approved in this arena is the IL-15 superagonist, which I’ve seen a lot of buzz about. It’s been called the “BioShield” by some people because there is some evidence that IL-15 might have efficacy across different cancers, but that’s a different topic. For bladder cancer, it’s given in combination with BCG and helps boost the patient’s bladder’s immune response to BCG itself.

That has excellent results in the sense that more than 50% of patients have a response in a year. The downside of that is that it has to be given in combination with BCG. Again, kudos to the company because they have gotten the FDA to agree to allow non-US BCG to be brought into the country and used in combination with this agent, especially in places where there is no BCG.

Those are the approved drugs. The same space now has multiple different drugs that are being studied. One is cretostimogene grenadenorepvec, which is another gene therapy that focuses on the retinoblastoma (Rb) pathway. It’s an oncolytic virus. It has excellent results. It’s not approved yet, but many of us expect that it will be approved.

Then there’s the intravesical pretzel device, which is where chemotherapy — in this case, gemcitabine (Inlexzo) — is put in a little silicone device that looks like a tiny pretzel. The company doesn’t like us calling it the pretzel, but it’s what helps patients understand. It’s put in the bladder and releases the drug at a slow rate. It’s great for patients because you put the device in once and then the patient just has to come in after three weeks or 12 weeks, depending on what stage they’re at, and have the device removed, but it’s constantly releasing gemcitabine (Inlexzo). Again, it’s not approved, but the data is looking promising. Everything that was presented at AUA, American Society of Clinical Oncology (ASCO), and elsewhere looks like this is something that’s going to be beneficial to our patients.

Then there are other agents. There is non-viral gene therapy, such as enGene, which allows patients to get gene therapy without using a virus. Some patients are afraid of the whole viral paradigm when it comes to gene therapy. Some hospitals in smaller communities can’t get certification to use gene therapy that’s viral-based. We don’t know yet, but if it’s approved, it’ll allow patients in smaller centers and smaller communities to get this drug.

Beyond this, I could go on for two hours, but there are so many more drugs being looked at, like laser therapy, etc., in this space. If you’re going to have bladder cancer, this is a great time because there are potentially many options that are going to be available.

Stephanie: I know that we could spend much more time going through every single amazing potential development and promising research happening, but let’s dive into some of the ones that you already talked about and then I have follow-up questions about how you would offer what therapy at what time. In any space, there are questions about whether you use a lot upfront first and try to hit hard in certain diagnoses or not.

First, you talked about gene therapy. Can you say the name of the therapy and share a little bit more about how close we might be? I know you don’t have a crystal ball, but how close are we to seeing this in a clinic? You can’t tell if the FDA is going to approve something, but if it’s promising and it does get approved, in six months, could it be something off of clinical trial, approved, and available?

Dr. Kamat: To clarify, the gene therapy nadofaragene firadenovec-vncg (Adstiladrin) is already approved. That’s interferon-alfa therapy. It’s already approved and patients are using it, and we can actually offer it to patients.

The other gene therapy is cretostimogene and that’s the gene therapy with CG Oncology. That’s not approved yet. We think that they will go in front of the FDA within 12 months, and hopefully, it’ll be approved and used for patients at that time. The results look great, but it’s not approved, so we can’t recommend it at this point.

There’s not one clear drug that’s better for every patient. It’s a personalized decision.

Dr. Ashish Kamat

Current Clinical Trials

Stephanie: We will also talk about clinical trials before the conversation is over and how you explain them to your patients. The term itself is not very friendly, I think. “Clinical trial” is pretty daunting for people, so we’ll humanize it.

There’s already gene therapy approved, like you mentioned, but cretostimogene is still in research. When you’re thinking about gene therapy for patients, let’s say that someone is able to go on to a clinical trial if it was recruiting or let’s say that it was already approved, why is this one better for certain patients than the one that’s already approved?

Dr. Kamat: There’s no one particular drug that’s better for a patient. In fact, when it comes to sequencing the right drug with the right patient, this is a very complex problem. The international bladder cancer group that I lead convened a think tank and spent months thinking about this. We had a hundred faculty members from all over the world go to Houston, sit in one room, and hash this out to try to figure out how to best sequence these drugs for the patients.

The short answer is that there’s not one clear drug that’s better for every patient. It’s a personalized decision. Some patients might benefit from treatment that’s given once every three months and, in which case, it’s obviously the nadofaragene firadenovec-vncg (Adstiladrin).

If the CG Oncology’s cretostimogene is approved and it’s available, that’s every week for six weeks and then there’s maintenance that goes with it. But the efficacy numbers there are higher than with the published data with nadofaragene firadenovec-vncg (Adstiladrin), so a patient might say, “I want to try this. I don’t mind coming every so often. I don’t mind the side effects of it. I would like this drug.” That becomes a discussion with the patient.

It’s not just these two gene therapies. Other treatment options are available as well. For example, the IL-15 NAI (nogapendekin alfa inbakicept), patients might like the fact that it’s given in combination with BCG and say, “BCG worked for me. It just stopped working after some time. I would rather get that treatment.”

Then some patients might say, “I don’t want any of this intravesical therapy. I want to get the device that you can put in my bladder because I like the fact that you can put it in, I don’t have to come back for X number of weeks, it’s constantly releasing the chemotherapy in my bladder, and I’m having good results with it.”

I don’t mean to dodge your question, but the real answer is there’s not one treatment that’s the best treatment for everybody.

Stephanie: I appreciate that and I probably should have said it differently. That’s exactly what I think the question is. We’re getting to a space of personalized treatment, not just in terms of the disease, but what a patient prioritizes for his or her life. Again, I appreciate that that’s how you approach your patients and how you bring this to light and at the forefront of these discussions, because it is different. People are optimizing for different things in their lives.

I know you said that they don’t like the pretzel name, but can you talk about the device and whether it’s in clinical trials? We’ll also be putting up the clinical trial names for people in case they are interested in asking their doctors. Do you have the clinical trial name for the gene therapy from CG Oncology?

Dr. Kamat: That’s the BOND-003 study. The pretzel is TAR-200 and TAR-210, and that’s Johnson & Johnson’s MoonRISe and SunRISe paradigms, and there are five SunRISe studies. Full disclosure: I’m part of advising pretty much every company in the bladder cancer space, so I help advise all these companies as well. The SunRISe paradigm is SunRISe-1, SunRISe-2, SunRISe-3, SunRISe-4, and SunRISe-5, and then MoonRISe, which is using TAR-210.

We don’t know what the company is going to call this when it actually gets approved in the clinic. There are a lot of names being thrown around and I can’t reveal that anyway, but we don’t know what the final name is going to be. That’s all in the noninvasive space.

I also want to enlighten the patients on the muscle invasive disease and the metastatic disease. In the metastatic space, this is not brand new, but using enfortumab vedotin with pembrolizumab (EV+P) clearly has changed the treatment paradigm. About eight to 10 months ago, we would tell patients with metastatic disease that the median survival is 14 months, which means half the men and women will not live 14 months.

Once EV+P was studied and presented by Dr. Tom Powles at ASCO, he got a standing ovation, as many of you know, because it changed the paradigm for patients. Now we can tell patients who have metastatic disease that the median survival has jumped from 14 months to 30 months, so half the men and women will live 30 months and that’s great.

In the metastatic space, a lot of second-line and third-line therapies are being studied. That’s where you have FGFR-directed therapies, platinum-based combination therapies (cisplatin or carboplatin), and other antibody-drug conjugates (ADCs) that have been developed for patients with biomarkers, etc There’s still a lot of work that needs to be done. It’s not as though EV+P is a full stop. We still need to get patients to live longer than a median survival of 30 months.

Traditionally, what’s happened is if you don’t take the patient’s bladder out, these tumors recur and when they do, they recur with a vengeance

Dr. Ashish Kamat

In the muscle invasive space, where patients have muscle invasive bladder cancer, but they’re trying to save their bladder, a lot of research is being done on whether we can avoid a radical cystectomy. The treatment paradigm there is to give neoadjuvant therapy, whether it’s platinum-based with gemcitabine-cisplatin plus X, and then get the patient to where there is no tumor left in the bladder.

Traditionally, what’s happened is if you don’t take the patient’s bladder out, these tumors recur and when they do, they recur with a vengeance and get worse and then you’ve missed that window of opportunity. Now, with the improved tools that we have where we can use good cystoscopy bladder MRI, using circulating tumor DNA, there is data emerging — and it’s still being studied in a clinical paradigm though — that we might be able to select a subgroup of patients where it might be safe for them to get systemic therapy and not necessarily have the bladder removed. But that, again, to caution people, is a clinical trial paradigm.

One of the trials being done in that space is the MODERN study. Dr. Matt Galsky is the principal investigator for that. It’s great because that gets patients to see, “I’ve achieved this particular endpoint. Now, on a clinical trial, can I continue on and not have my bladder removed?” That’s the clinical trial part of it.

But in the actual clinic, we are looking to improve results for patients who want to have their bladder taken out. That’s where the NIAGARA protocol, which is using gemcitabine and cisplatin, which used to be used alone as a combination, but now you can combine this with durvalumab (Imfinzi), which is an IO (immuno-oncology). They give this to patients upfront, they undergo radical cystectomy, and you continue the durvalumab (Imfinzi) after the surgery.

This has improved their survival and it’s the first time that the overall survival has shown an improvement in patients who are undergoing radical cystectomy. For many years, we’ve used neoadjuvant therapy and the benefit to patients is about 5%. Nothing has improved upon that. People have tried. They’ve used different types of chemotherapy regimens, dose-dense MVAC (ddMVAC or methotrexate, vinblastine, doxorubicin, and cisplatin), spacing out chemotherapy, etc. This is the first time that this combination therapy has been shown in a randomized phase 3 study to improve overall survival for these patients. Clearly, it changes the treatment paradigm.

Again, in the interest of time, I’m not going to go into too much detail, but there’s so much in between that is being developed and has been developed. I encourage patients who are faced with the conundrum of having muscle invasive disease to ask their physicians. “I know that this is standard of care for me, but if it doesn’t work, what else do you have available?” Because there’s a lot of stuff that’s available.

Stephanie: Thank you. I’m glad you explained it all in a very concise way, given the time crunch. I do want to go back to some of these because when people are hearing about it, it’s great that they have the information, but there are lots of questions about efficacy and impact on quality of life. You’ve talked a lot about bladder sparing, which is a huge part of what we’ve heard in terms of questions from patients as well, since there is such a high degree of impact on them.

There doesn’t appear to be any major difference between the side effect profiles of one over the other.

Dr. Ashish Kamat

Are New Bladder Cancer Treatments Decreasing Side Effects?

Stephanie: Going back to non-muscle invasive, with gene therapy, you have different considerations. One of them is once every three months and the other is once every week for six weeks. What about side effect profiles? Are you seeing something much better in the one that’s in clinical trial now, for instance, for the quality of life for people?

Dr. Kamat: Again, it’s not as though the side effect profile is majorly different or better or worse in some ways. Patients who will get side effects, you’ll see that upfront. Most patients will have some localized side effects in the bladder, but they’re very manageable and very tolerable, especially since we can give patients antispasmodics, etc. But there doesn’t appear to be any major difference between the side effect profiles of one over the other.

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

Understanding TAR-200 (“Pretzel” Device)

Stephanie: The pretzel device is novel and people will have questions about how this works. Do people go to the doctor or to the hospital and then it’s put in for them and it automatically releases the treatment? How often are you going back in? Is that indefinite or is there a particular amount of time that you’re supposed to have that pretzel device in?

Dr. Kamat: The way the clinical trials are designed is essentially the TAR-200 device, which we colloquially call the pretzel, is put in the bladder with a device that is like a catheter, so it’s not a major surgical procedure. It’s done under local anesthesia. You put it in the bladder and the patient keeps that in place.

Most patients will initially feel like there’s a little bit of a foreign body in there, but patients are, in some ways, used to it because they’ve had prior treatment and it’s something that you can easily treat with an antispasmodic. After a while, patients sometimes forget that they have this in there.

The TAR-200 device, which we colloquially call the pretzel, is put in the bladder with a device that is like a catheter, so it’s not a major surgical procedure. It’s done under local anesthesia.

Dr. Ashish Kamat

Now, in the early stages of treatment, the device has to be changed more often. They come in every three weeks and get the device changed. In the maintenance phase, it has to be changed roughly every three months, so they can leave it in there for that long.

It doesn’t bother most people. Sometimes we have to remind patients that they have a stent in place. We don’t want them to forget that they have it and never come back. Hopefully, that’s a good problem to have, but we don’t want them forgetting that they have it in there.

Like I said earlier, that’s where the discussion on personalized treatment with the patient comes in. Some patients are more than happy to come into the office every so often, while some don’t and prefer to come in once every three months. We’ll have different things to offer to patients, but if we look at the efficacy numbers, it looks like one of these newer agents that are not approved might end up with the best efficacy numbers. We don’t know that for sure yet.

Stephanie: We’re still waiting for that actual data.

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

Understanding Treatment with EV + Pembrolizumab (EV+P)

Stephanie: Lastly, as we’re wrapping this, the EV+P, which you’re talking about, the ASCO and the standing ovation, can you put into perspective what this means for patients who typically were looking at pretty rough numbers before?

Dr. Kamat: Traditional first-line chemotherapy for patients was cisplatin-based chemotherapy. Many patients could not get cisplatin because of the various comorbidities that our older patients tend to have, especially those with bladder cancer, with prior smoking history, cardiac disease, etc., and they had to get non-cisplatin-based therapy. There was a lot of push to study IO therapies, like pembrolizumab (Keytruda), atezolizumab (Tecentriq), etc. Then the antibody-drug conjugate, which is enfortumab vedotin (Padcev), targets nectin-4.

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

Long and short, this combination was studied in the patient population and compared head-to-head with standard chemotherapy, and clearly improved survival over standard chemotherapy. Now, it’s become the de facto first-line therapy for patients with metastatic disease.

But a caveat. It’s not available everywhere in the world. It’s expensive. There are many places in the world where patients still don’t have access to EV+P, or if they have access, it is something that can break the bank. Again, that’s a practical problem that we all face: resource allocation. Who gets the treatment? Who can get the treatment? Who can afford to get the treatment? But as long as the patient has access to it and it’s available and affordable, EV+P has become the de facto standard of care.

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

Humanizing Clinical Trials

Stephanie: We’ve talked about clinical trials. Without going into the details of these specific trials, they’re something that a lot of people are not familiar with. What tends to be the way that you have found most effective in describing what a clinical trial is and why patients whom you bring this as an option to might want to consider it? How do you humanize the concept of a clinical trial to them?

Dr. Kamat: That’s a very important question. Patients need to understand that a clinical trial does not mean that they are being treated like guinea pigs. That’s the furthest from the truth. There are some patients who, unfortunately, don’t have any options because they haven’t responded to anything; at that point, it’s a matter of life or death. It’s either a clinical trial or nothing. But for most patients, that’s not the situation.

For patients in front of me who have different options available, but there’s a clinical trial in the space, what I tell them oftentimes is, “This particular agent that’s being studied in the clinical trial is something that we believe in. We know from early data in the preclinical space that it has good mechanistic reasons to maybe be better than the standard of care at some point. We don’t know that yet. We have to study it.”

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

The advantage of taking part in the clinical trial for every patient is that they are at the forefront of the research, but they also get better care. If a patient is on a clinical trial, by definition, they are being followed very closely. There’s usually a nurse that’s assigned to them. Everybody’s looking at the pathology very carefully because the company doesn’t want any mistakes. We, as investigators, want to make sure patients are getting the best care across the board, but especially on a clinical trial because there’s that much scrutiny.

Patients need to understand that a clinical trial does not mean that they are being treated like guinea pigs. That’s the furthest from the truth.

Dr. Ashish Kamat

In some ways, the patients are most catered to in a clinical trial. There’s very little room for error. The pathology is often double-checked at a central pathology. Everything’s done on a well-defined protocol and schedule, and it’s made patient-friendly. I often tell patients, “If you take part in the clinical trial, you will be getting the highest standard of care of any patient that’s getting treated for a particular disease. And you’ll not only be helping yourself, but hopefully you’ll be helping inform the field and help other patients as well.”

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

But we have to be practical. We always tell patients, “Clinical trials are a commitment. It’s not as though you can skip appointments. It’s not as though you can not take part in every part of it. If it’s too much of a social or financial burden, let us know upfront because there’s no obligation.”

I never want patients to feel that if they say no to a clinical trial that I’m recommending, I’m going to take it personally. No, not at all. It’s not a personal thing. It’s me trying to get them to take part in something that I think will help them. But if they can’t participate, they’re not going to hurt my feelings at all and they still will get treated.

Bladder Cancer Breakthroughs 2025 - New Treatments and Bladder-Sparing Advances

Conclusion

Stephanie: Dr. Kamat, thank you for spending time today with us and for everything you do for patients and care partners in this space. We appreciate it.

Dr. Kamat: It was my pleasure. Thank you so much.

Stephanie: I hope this conversation with Dr. Kamat helped you. Please feel free to share this discussion with others in your community.

Once again, we want to thank our sponsor, Johnson & Johnson, for supporting this independent patient education program. We retain full editorial control. While we hope that this was helpful and that you walk away with questions to ask your healthcare team, this is not a substitute for medical advice.

Visit ThePatientStory.com if you want an entire library of other patient stories. I’m so glad you could join us and I hope to see you again soon. Take good care.


World Bladder Cancer Patient Coalition (WBCPC)

We would like to thank our promotional parter, The World Bladder Cancer Patient Coalition (WBCPC), which brings together bladder cancer patient organisations from around the globe to improve the lives of people affected by bladder cancer. They are committed to raising awareness, providing trusted patient information, and ensuring the patient voice is heard in research, policy, and care.

Johnson and Johnson J&J logo

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


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Michael V., Bladder Cancer (Non-Invasive High-Grade Papillary Urothelial Carcinoma), Stage 1



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Symptom: A significant amount of blood in the urine

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Categories
Myeloproliferative neoplasms (MPNs) Patient Events

Take Charge of Your MPN: Tracking Symptoms & Advocating for Better Care

Take Charge of Your MPN

Tracking Symptoms & Advocating for Better Care


Living with an MPN (myeloproliferative neoplasm) brings challenges that aren’t always visible—but tracking your symptoms can make a powerful difference.

Take Charge of Your MPN: Tracking Symptoms & Advocating for Better Care
Hosted by The Patient Story Team | 44m 55s
Living with an MPN (myeloproliferative neoplasm) brings challenges that aren’t always visible and tracking your symptoms can make a powerful difference. In this free patient-led discussion, MPN advocates Ruth, Nick, and Demetria open up about what it means to live proactively with ET, PV, or MF.

Incyte
Karyopharm Therapeutics

Thank you to Incyte and Karyopharm Therapeutics for supporting our patient education program. The Patient Story retains full editorial control over all content.


Edited by: Katrina Villareal


Introduction

Ruth Fein: This conversation is focused on living with myeloproliferative neoplasms, or MPNs, and how tracking symptoms can empower you to advocate for the care that you need or the care of a loved one.

My story spans over 30 years. I was initially diagnosed with essential thrombocythemia (ET), which transformed into polycythemia vera (PV), and then eventually became myelofibrosis (MF), which is what I have now. I’ve had several symptoms and I’ve been on a few different drug therapies along the way. I’ve had life-threatening clots and life-threatening bleeds, which, of course, conflict with each other.

Now, I’m on a clinical trial and doing great. They call me the poster child for this clinical trial and it’s been five and a half years. I’m always proud and happy to speak to other people living with MPNs, particularly since I didn’t know anyone else living with an MPN for the first 20 years that I had this disease.

Ruth Fein and husband Danny

This discussion is brought to you by The Patient Story, where our mission is to humanize cancer. We’ve had more than 100 million views of our in-depth story videos that mostly feature patients, sometimes caregivers, care partners, and, of course, physicians, clinicians, and other care professionals. Our goal is to help promote self-advocacy and connection.

We want to thank our sponsors, Incyte and Karyopharm, for their support of our independent educational program. This allows us to create more content like this for free. The Patient Story retains full editorial control. While we hope this is helpful, this is not a substitute for medical advice. Please still consult your healthcare team when making treatment decisions.

Nick N. family

Meet Our Panel

Ruth: I’m joined by two other amazing people who also advocate for those living with MPNs.

Nick Napolitano: Hi, Ruth. My name is Nick. I’m a polycythemia vera patient. I was diagnosed in 2016, so I’m approaching the 10-year mark, which is a big deal. Like you, Ruth, I’ve experienced a range of symptoms throughout my journey — everything from itching to bone pain. I have experienced different treatment options and am currently on a drug, doing very well.

I’m a husband to my beautiful wife, Kara. I have two boys, Jake and Nick. They keep me very active.

Demetria J: I’m a wife, a mother, a mother, a business owner, and a coach and mentor. I’ve been a business owner for nearly 20 years. I initially started in the beauty industry and owned a nail salon. Then in 2021, I pivoted to salon suites and an event space. And then life happened.

I received a diagnosis of ET in 2018. I went through a series of different doctors and ended up at Emory in Atlanta, where the oncologist put me on a new medication that had just come out of clinical trials and was showing positive results. He believed that, at that point, I would benefit better from that.

Eventually, my levels began to level out. My platelet counts went down tremendously, so I thought we were in the clear. Then in 2023, I found out it had progressed to myelofibrosis. I was experiencing different symptoms, such as fatigue and stomach pain. I went to the emergency room, was given some pints of blood, and a diagnosis of myelofibrosis after having a bone marrow biopsy.

Ruth: Thank you both for being here. Let’s dive in.

Demetria J. myelofibrosis

What Were the First Symptoms of Your MPN?

Ruth: We’re talking about understanding symptoms and what to track. One of the main challenges with MPNs is that the symptoms are often subtle and can easily be mistaken for normal aging or other conditions, like menopause. Nick, what symptoms did you notice first? You alluded to a few, but what was the first symptom that prompted you to start tracking?

Nick: The itching, for sure. Like you mentioned, a lot of symptoms can be dismissed, like headaches and fatigue, but the itching stood out. It wasn’t something I experienced before, so that raised the red flag and made me start tracking and monitoring the details around when it would happen.

Demetria: Probably the fatigue. I have a high pain tolerance level and the fatigue that I experienced would probably get to most people, but it wasn’t getting to me. My adrenaline was running, being a mom, a wife, and a business owner. I had a very demanding life, so I was going and going, and not paying attention to my body as much as I probably should have been.

It wasn’t until the day before I went to urgent care. I was having bad stomach pain, which I now know was because of my enlarged spleen. My doctor informed me that when your bone marrow is not making enough white blood cells that the spleen will kick in and try to do the job of the bone marrow and that’s not its job. In the process, your spleen gets enlarged because it’s doing something that it is not designed to do.

That day, I also had some shortness of breath, which was very unusual for me because I usually don’t get out of breath. My body was sending me signs and I ignored them until it gave me a dire warning. “We can’t go anymore. Something needs attention.”

I want to know every little detail about what I’m feeling and then I use that as part of my conversation with my doctor.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Tracking Your MPN Symptoms

Ruth: What kinds of things do each of you track now to manage your MPN and how has that been helpful?

Nick: I track everything, but that’s me personally. I want to know every little detail about what I’m feeling and then use that in conversation with my doctor. I let my doctor tell me whether I’m crazy or not with respect to the symptoms I’m feeling. But I think it’s important to track everything.

So much of our disease is a journey over time. Things pop up and go away. I think you need to track everything and have the details around it. Make sure you’re communicating with your doctor because you never know what part of the journey or what symptoms you’re experiencing at any given time actually matter until you look at everything.

Demetria: I didn’t track symptoms until towards the end, maybe that last week before I received my myelofibrosis diagnosis. Each day, I was saying, “Wait a minute. I am really, really tired.” I would go to the grocery store, come back home, lie down, and would need to sleep for like an hour and a half.

The other thing I dismissed was a little bit of dizziness because I had just had a sinus infection, so they were thinking it was vertigo from the sinus infection. I thought everything was isolated and not related to one diagnosis. I thought they were all individual symptoms of something else.

The last week before receiving my diagnosis, I was noticing a little bit of progression. The fatigue was feeling a little bit more intense each day until that last day when I had severe stomach pain.

Ruth: How do you track symptoms? Is it through an electronic app or do you use a notebook?

Nick: It’s a combination of an app and a spreadsheet. I would say the most basic and useful tool for me is the notes app on my phone. I open it up almost daily and log stuff there. Then I use that as the basis for my conversations with my doctor. Everything is there between visits, so I can go over questions and things I notice.

It’s the fear of missing something that may play a role in changing the course of my disease or progression.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

What Motivates You to Track Your Symptoms?

Ruth: Nick, what’s helped you be consistent with your tracking? What’s made it easier and what helps you remember to keep it up?

Nick: It’s fear, to be honest with you. It’s the fear of missing something that may play a role in changing the course of my disease or progression. I’m very fearful of not tracking something, going to a doctor’s appointment, and being asked, “Have you experienced this before?” And then having to say, “I don’t know. I haven’t been tracking it.” Then, realizing that it’s too late. Quite literally, it’s fear.

Ruth: That’s real.

Noticing Your Symptom Patterns

Ruth: Let’s talk about symptom patterns. Do you ever notice your symptoms come and go, get worse at certain times, or come in waves?

Demetria: I don’t know that I necessarily noticed any patterns. It was an everyday thing. I was starting to notice that the fatigue was increasing every day. I don’t necessarily know the time of day, whether it was in the morning or the evening. I just knew that when I woke up, I was fatigued. When I went to bed, I was fatigued. Throughout the day, I was fatigued.

It’s unpredictable… You don’t know what’s going to happen from one day to the next when it comes to symptoms.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Ruth: What about you, Nick? I assume that’s why you started tracking, because our symptoms do come and go. Do you ever notice that they get worse at certain times of the day or on certain days? What have you found in your tracking?

Nick: Yeah, I think that’s probably the most important part of tracking. I’ll give an example with itching. Itching was dormant for a while and then it popped up over the last couple of years. It’s not just random — it happens at certain times of the day. It pops up in the morning and at night, and then it goes away in between. When I take a shower, whether hot or cold, it pops up. When I roughhouse with my kids, the rubbing of my skin activates it. I used to have a lot of bone pain, but that’s gone.

One of the challenging parts of the disease is that sometimes it’s unpredictable. Things come and go. You don’t know what’s going to happen from one day to the next when it comes to symptoms.

Now I feel better prepared because I understand how important it is to pay attention to everything concerning your body.

Demetria J.,
Myelofibrosis Patient & MPN Patient Advocate

Tracking Symptoms to Better Inform Your Care Team

Ruth: I think that uncertainty is palpable. A lot of us experience anxiety and stress related to that. Does tracking ease some of that anxiety because it helps make sense of things, or is it the opposite? Do you see those ups and downs and worry more because of it?

Nick: That’s a great question. It helps me because I feel like I’m educated and prepared when I go to my meetings. I call them meetings with my doctor and I treat it very much like a work meeting. I want to have all the information I possibly can when walking into that meeting. I feel a little more prepared. Having the knowledge of the ups and downs, and maybe the reasons why, is very, very important for me.

Demetria: Yeah, absolutely. One of the things my transplant surgeon pushed for was for me to be very observant of my body, like skin changes, because not only in terms of cancer coming back, but also graft versus host disease with having the transplant. Sometimes your body can reject the transplant. They were huge proponents of me making sure that I am paying attention to everything — not just how I’m feeling, but any changes in my skin, my eyes, my throat, my ears, or my range of motion.

Now I feel better prepared because I understand how important it is to pay attention to everything concerning your body and to make sure that I am letting my care team know, so that we can be ahead of it to be more proactive instead of reactive. Sometimes those subtle things that we don’t pay attention to could absolutely be the start of something. If you catch it early enough, you can stay ahead of it.

Don’t think, ‘Oh, this is probably not related to this.’ Express everything that’s going on in your body.

Demetria J.,
Myelofibrosis Patient & MPN Patient Advocate

How Tracking Symptoms Can Inform MPN Treatment Options

Ruth Fein: Now we’re tracking our symptoms and thinking about when it’s important to share with our care teams. Has that directly led to any action or changes in your treatment? I’d love to hear any examples. We’re not talking about specific drugs, but has it led to a change in your treatment or your activities, Nick?

Nick: Yeah, for sure. I talked about the itching and brought that up with my doctor. We talked through the details of when it happens and when it doesn’t. He recommended a couple of different options and one in particular that has worked. I very much appreciated the dialogue and brainstorming. That’s one of the aspects I want from my doctor is brainstorming and idea generation. That’s been a life changer, to be honest with you.

Ruth: Tracking your symptoms and bringing that information to your health team can make a big difference. What tips do you have for talking openly, honestly, and clearly with your doctor and your entire care team about how you’re feeling? Do you have any specific tips? What helps you maintain an open conversation with your care team?

Demetria: One of the things, looking back, is I wish I hadn’t seen my symptoms as isolated incidents. I wish I had known to say to somebody, “I’m having these symptoms,” and list them all out, instead of thinking, “This may be related to the sinus infection. Maybe this is related to this.”

I wasn’t sharing with my oncologist or different people early on about other symptoms that seemed random. I didn’t mention those things when they could have been related to the progression of the disease. When working with your care team, it’s important to tell them everything that you’re feeling. Don’t think, “Oh, this is probably not related to this.” Express everything that’s going on in your body.

Ruth: Nick, do you have anything to add or something that specifically works for you to have an open and honest conversation with your practitioners?

Nick: I make sure that at the beginning of the appointment, we talk about how I’m feeling — mentally, physically, and symptom-wise. I try to talk about how I’m feeling in between visits. I’ve learned that doctors and caregivers want details. They’ll ask about what you’re experiencing and how you’re experiencing it. Coming prepared to the conversation right up front to talk about some of the details of what you’re feeling creates a nice dialogue with your doctor.

Ruth: It sounds like you have a perfect doctor because we’re always talking about how to have productive conversations with your doctor and care team. You’ve got it down and I’m sure our audience will learn something from that.

Nick: Ruth, I learned that over time. Believe me, I learned that over time. It’s not always perfect.

You can learn so much from other people’s experiences and gain real courage and support that way.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Ruth: Same here. And it’s not easy for everyone. You’re communicative, I’m communicative, but some people aren’t. We always encourage bringing a care partner, someone who can interact on their behalf or listen closely, especially if they might miss something the doctor says. For those who aren’t as outgoing or find it hard to share how they’re feeling, that care partner can step in and say, “Remember last week, when…” or add important details. All of that helps. Thanks for sharing that!

Nick: I totally agree. That’s exactly why programs like this are so important. Connecting with the patient community makes such a difference. You can learn so much from other people’s experiences and gain real courage and support that way.

How Has Tracking Symptoms Changed Your Treatment?

Ruth: As one more follow-up to that, has any of your tracking changed not just your treatment, but raised new concerns that you then brought to your doctor? Questions and answers that perhaps would not have come up before?

Nick: It was the tracking of phlebotomies when I was being treated solely with phlebotomies and the impact that was having on me physically. For a while, I was able to deal with them well, but over time, they affected my overall health and well-being. I wasn’t tolerating them as well as I had in the past, so we started talking about different options. Not only were they not making me feel well, but I was also getting them too often, which is usually a red flag with MPNs. That changed the conversation toward exploring different treatment options for my care.

Ruth: That speaks to how important it is, as a patient or patient advocate. Sometimes doctors ask us yes-or-no questions, like, “Are you doing well with your phlebotomies?” and it’s either yes or no. But if you expand on that and say, “Yes, I’m going, and yes, they’re helping my blood counts, but I’ve been experiencing this or that.” If a person living with MPN or their care partner doesn’t step in to add to that yes-or-no question, we don’t progress in our knowledge and, therefore, better care. Thanks for going there. It’s important for others living with MPNs to hear different experiences.

I’m a woman of faith, so I rely heavily on my belief in God. It has anchored me throughout my journey.

Demetria J.,
Myelofibrosis Patient & MPN Patient Advocate

Dealing with Fears About Your MPN Symptoms Returning

Ruth: Now, let’s talk about progression. It’s a topic nobody wants to face. Or maybe we all want to talk about it, but we don’t want to go there. We know MPNs can progress over time — for example, ET to PV, or for me, PV to MF, and MF can progress to acute myeloid leukemia (AML). That can bring up a lot of emotions, stress, and sleepless nights.

Sometimes we hear that sleeplessness is a side effect of living with an MPN, but I believe it’s not always a biological or molecular response from the disease itself. A lot of it is the stress. Personally, I don’t think about these things during the day, unless I’m doing a webinar like this. But when I close my eyes at night, that’s when everything starts swirling and it keeps me from sleeping.

It’s important to talk about the balance between facing reality, staying present, and being grounded in daily life. We don’t want anxiety or stress to take over, but it’s also important to acknowledge that it’s real. I believe it’s equally important for others to acknowledge that it’s real because sometimes we feel misunderstood. Demetria, are you worried about MPN symptoms coming back?

Demetria: I’m a woman of faith, so I rely heavily on my belief in God. It has anchored me throughout my journey. I don’t believe in crossing over into fear. It’s healthy to have concern and caution about things, but I try not to go too far into the future because that’s when anxiety sometimes can arise, because you’re thinking about the what-ifs. And sometimes the what-ifs never happen.

For me, I rely on my track record that God has always pulled me through. I believe that if something else were to arise, because I’m anchored in that belief that I’m taking care of spiritually, that it’s going to be okay. Sometimes we do have to go through journeys and valleys, but it’s how you respond to those valleys that makes the difference.

Ruth: Nick, what about you? How do you balance living in the moment and not worrying about progression? I also wonder: have you talked with your doctors about this? Because some doctors don’t always ask about mental health or make that connection, while others do.

Nick: I’ve been very open and public about some of the mental health struggles that I went through, especially early on. It was a very shocking and confusing diagnosis. I kept everything inside. I didn’t communicate at all with my wife or my family, and it was deteriorating my mental health.

What helped me was communicating. I communicated a little bit better with my wife. I did that through a documentary that I did, which was life-changing, to be quite honest with you. It wasn’t necessarily about the documentary, but it was about getting involved in the cause. It made me feel like I was doing something to help. You quickly realize that it’s not about you. There’s a greater cause out there. There are other people that you can help by sharing your story and communicating, and that was the turning point for me.

Connect with other patients. It’s so life-changing to speak with someone who is going through something similar and may have a different perspective.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

I did seek professional help. I remember going to the emergency room a couple of times because of the anxiety pains that I had, which I thought then was a heart attack. At that point, everything was all bottled up inside. Again, that was another pivot point to seek professional help.

Both of those things were life-changing. I talk about this all the time: don’t be afraid to communicate. You have to communicate because it is a release point. Get help and also connect with other patients. It’s so life-changing to speak with someone who is going through something similar and may have a different perspective. It is valuable.

Ruth: All of that is thanks to the internet. Obviously, when I was diagnosed 30 years ago, the internet was in its infancy. I didn’t have resources like The Patient Story, which are invaluable for those of us living with any chronic disease, particularly chronic cancer and an MPN.

Primarily my husband and then my mother… With both of them on my team, things that I didn’t say, didn’t know to say, or forgot to say, they would jump right in to say those things for me.

Demetria J.,
Myelofibrosis Patient & MPN Patient Advocate

How Care Partners Can Help You Track Symptoms

Ruth: Let’s move on to the role of care partners in symptom tracking. Do either of you have someone helping you track symptoms or notice changes that you might miss?

Demetria: Primarily my husband and then my mother. My mother has a background in the medical field. Sometimes she would accompany me on my visits and would ask questions that I may not have known to ask because of her background.

When I had my bone marrow transplant, I had to have a caregiver with me. My mother and my husband alternated because I had to go to another city to have the bone marrow transplant, which was two hours away from where we lived. My daughter at the time was 10, so he had to navigate caring for her as well as caring for me.

They were some of my biggest supporters. I remember one doctor visit. I was starting to itch a little bit. I hadn’t said anything to my oncologist about it and he said, “You need to tell him about the itching.” The doctor asks, “What about the itching?” I said, “Yeah, I’m having a little bit of itching.” With both of them on my team, things that I didn’t say, didn’t know to say, or forgot to say, they would jump right in to say those things for me.

Kara, my wife, is my caregiver and I don’t know where I’d be without her… She’ll ask me questions to make sure that I’m being honest about what I’m going to talk to the doctor about.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Ruth: I know a lot of times people will go to their doctor and say, “No, I’ve been fine.” “Are you fatigued?” “No.” “Have you been tired?” “No.” Then the care partner says, “Well, we’ve had to rest a lot when we’ve gone on our two-mile walks every morning or when going up the stairs.” People in our lives play a role that I think is important. Have there been times when your caregiver noticed something you hadn’t picked up on at all yet?

Nick: Kara, my wife, is my caregiver and I don’t know where I’d be without her. We do a lot of communicating now. I’ve mentioned that I treat the doctor appointments like business meetings, so I will prep with her by going over my notes and what I’m feeling. She’ll ask me questions to make sure that I’m being honest about what I’m going to talk to the doctor about. Then we’ll do a debrief about what the doctor said, what the numbers looked like, and everything in between.

I give her a lot of credit for this. I was having trouble with my vision. I’ve had blurry vision before, but all of a sudden, I was having issues seeing. Everything was coming up blurry and she says, “You’ve been on a certain drug for a while. Do you think that has any effect? Why don’t you bring it up to your doctor?” Lo and behold, it does. There is an impact taking certain drugs with your vision. She’s fantastic. She’s a lot smarter than I am, so I rely on her a lot.

His presence and being willing to sacrifice to go through the journey with me were enough for me.

Demetria J.,
Myelofibrosis Patient & MPN Patient Advocate

Ruth: Demetria, how does your care partner support you emotionally, particularly when you’re dealing with anxiety?

Demetria: Surprisingly, my husband and I have had these kinds of conversations, and he said that the way that I was so calm and remained calm through all of this helped him to stay calm. People look at the husband as the protector, as the one to shoulder the emotional burden to keep the household calm. But he shared that he watched me and how calm I was, which helped him. He felt as if there was nothing he could do to help me in terms of getting through this. We had to work through the process.

There is an emotional and mental component to someone simply being there. It makes you feel confident. It feels like you are seen. He sees me. He sees that I’m going through this. I feel secure because he’s here. He’s not leaving me by myself to go through this journey. Even though he may not have offered any specific emotional or mental help in the traditional sense, his presence and being willing to sacrifice to go through the journey with me were enough for me.

I heard from an MPN doctor that if we ask every person living with MPN if they were willing to participate in a study, 90-something percent would probably say yes.

Ruth Fein Revell,
Myelofibrosis Patient & MPN Patient Advocate

Participating in Clinical Trials

Ruth: We’re moving on to clinical trials and looking ahead, which is important because some of the best drugs for MPNs are still in clinical trials. I like to say that clinical trials are no longer a last resort and I’m a perfect example of that. I’ve been in one for five and a half years, and I’m doing extraordinarily well on that trial.

There are challenges, however. I have to go back and forth 3.5 hours each way to the major academic center where I’m being seen, but I’m having a life-changing result, and to me, that’s worth it. By the same token, not everyone has access to clinical trials, which is difficult, and we acknowledge that.

Has your doctor ever brought up the idea of clinical trials as part of your treatment plan? I heard from an MPN doctor that if we ask every person living with MPN if they were willing to participate in a study, 90-something percent would probably say yes. The only obstacle is that they’re not asked. What about you, Demetria? Have you ever been offered a clinical trial?

Demetria: I haven’t ever been asked. But I have been told about them, especially when I was at Emory, because they do participate in a lot of clinical trials. The conversation was, “If this medication does not work well for you, then we could look at putting you in a clinical trial.”

He heard of a diet study that Dr. Angela Fleischman was doing to take a look at the Mediterranean diet and the impact that it has on MPNs. He thought that would be of interest to me.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Ruth: What about you, Nick? Is that something you’ve been asked about?

Nick: I will answer this a little bit differently. When I first got diagnosed, I focused on my diet. I tried to take out a lot of the inflammatory foods I was eating and made that a focus of my overall care. My doctor knew that at the time because I talked about that openly with him.

He heard of a diet study that Dr. Angela Fleischman was doing to take a look at the Mediterranean diet and the impact that it has on MPNs. He thought that would be of interest to me, so I participated in it and it was nothing short of fantastic. It validated some of the things that I was doing were correct, but also exposed some of the things that I wasn’t doing, and some of the nutrients and proteins that I wasn’t getting based on my diet, and iron. We don’t need too much iron as MPN patients, obviously, but we need a base level of iron.

It was great and it was educational for me. It’s important for people to know that those kinds of studies are out there, outside of the drug clinical trials that we typically see.

Ruth: Thanks for mentioning that. Dr. Fleischman’s studies are interesting. We can learn a lot, not just from the Mediterranean diet, but from the Mediterranean diet’s influence, if you will — picking and choosing what works for us, but understanding inflammation’s effect on MPNs.

Have an open dialogue throughout your care with your doctor. I never want to feel complacent with where I’m at in my care.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Considering Clinical Trials in the Future

Ruth: If you were asked, whether it’s today or when things change, what would your care team be able to do to make you feel comfortable exploring a clinical trial?

Nick: For me, it starts before talking about the clinical trial. I feel like you need to have an open dialogue throughout your care with your doctor. I never want to feel complacent with where I’m at in my care, so I’m constantly challenging my doctor. What’s out there? What can we be doing differently, if anything? What’s on the horizon? What if this happens, what do we do? Those are the type of questions that I ask my doctor, maybe every other appointment, and brainstorm.

If you’re having those discussions, it makes that conversation about clinical trials a little bit easier and more comfortable because you’ve already talked about it. Starting with having a regular cadence of talking about the what-ifs and what we could do if things change will help with the conversation about clinical trials and ultimately participating in them.

Ruth: Totally agree. Sometimes we have that conversation long enough that the clinical trial becomes an approved drug, and we don’t have to have that conversation anymore.

If there were newer things out there or that are coming, I want to be in the know and figure out how I can benefit.

Demetria J.,
Myelofibrosis Patient & MPN Patient Advocate

Doing Your Own Research on Clinical Trials

Ruth: Have either of you ever come across a clinical trial in your own research that seemed interesting, but you didn’t know how to move forward or how to talk to your doctors about it?

Nick: I would say I think that’s where the communication part comes in with the patient community. Also, with organizations like The Patient Story, they can get you resources and someone to talk to to further vet that out, and then ultimately maybe find an MPN expert to talk through that in a little bit more detail.

Demetria: Initially, when I was diagnosed with ET, I was very young. I was about 34 when I was diagnosed. I did some research on the medication that she put me on and said to her, “My husband and I may still want to have children, and this medication is not going to fare well if that is the case.”

I researched some new medications and clinical trials that were out. There was one particular doctor whom I mentioned to her that I saw was making headway and introducing new concepts and treatment plans. I asked her, “Is there a way that you can see if these things would work for me?” I didn’t feel like she was willing to do anything other than what she suggested, so that’s how I ended up at Emory.

This is my life. I have to be an advocate for my life. I have a husband and a daughter. I want to live. And if there were newer things out there or that are coming, I want to be in the know and figure out how I can benefit from the newer things that could be better than what she was offering.

All options are on the table. I want to live as long as I possibly can and I will do whatever is necessary to make that happen.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Ruth: If things change, Nick, are you open to participating in a drug clinical trial, if at some point that becomes the right choice for you?

Nick: Of course. The way I look at my disease and the care is that all options are on the table. I want to live as long as I possibly can and I will do whatever is necessary to make that happen.

Ruth: Thank you for sharing that. I will just add that science is advancing at unprecedented speeds. Thirty years ago, things were so different. Twenty years ago, ten years ago, even five years ago, for that matter. Within the last two or three years, our options have expanded exponentially. The longer we’re well enough to live a good quality of life while we wait for new and better treatments to come along, those decades add up, and that’s a good thing.

Do not think that any symptom is too insignificant. Track everything and let your doctor tell you whether you have to worry about a particular symptom or not.

Nick Napolitano,
Polycythemia Vera Patient & MPN Patient Advocate

Final Words of Advice

Ruth: To move on to final reflections, what advice would you give to someone who was just diagnosed with an MPN about tracking symptoms specifically? Is there anything you’ve learned over time about how to talk to your doctors so they hear what’s going on and see that you’re a knowledgeable patient?

Nick: I would say track it all. Do not think that any symptom is too insignificant. Track everything and let your doctor tell you whether you have to worry about a particular symptom or not.

Be prepared for your doctor’s appointments. Do the research. Communicate how you’re feeling. Be open-minded with treatment options. Be open-minded in getting the care that you need, whether it’s an MPN expert or a mental health expert, if you’re struggling with that. But be open-minded, please.

Demetria: I would say to pay attention. Life is fast. I call this the microwave generation. We do everything fast. We want everything fast. And sometimes when you’re moving as fast as I was, you don’t get a chance to pay attention to what’s going on inside of you. Sometimes when you’re driving on the highway, you’re going so fast that you can’t see anything. But if you’re on the back roads, you have to slow down. You can’t go fast, but you’re able to see the scenery. When you slow down, you can pay attention to see what’s going on.

Sometimes, we need to slow down to pay attention and be intentional about looking at ourselves, looking at our bodies, and evaluating how we feel. How long have I been feeling this way? Don’t discount it as a fluke or an isolated incident. Take it seriously. Take it to your doctors and find out what’s going on so you can live.

Sometimes, we need to slow down to pay attention and be intentional about looking at ourselves, looking at our bodies, and evaluating how we feel.

Demetria J.,
Myelofibrosis Patient & MPN Patient Advocate

Conclusion

Ruth: Thank you so much, Nick and Demetria, for sharing so openly. Your stories are powerful reminders of how even small steps, like tracking symptoms and writing them down, can have a big impact and make a real difference in managing your health.

We’d like to also thank our audience. If you’re living with MPN or caring for someone who is, we hope that this discussion has left you feeling more informed, supported, and empowered, and a little less invisible and misunderstood.

We want to thank our sponsors, Incyte and Karyopharm, for their support of our independent educational program. This allows us to be able to do more content like this one and at no cost to you. The Patient Story always retains full editorial control. While we hope that this is helpful, this is not a substitute for medical advice. Please still consult your own healthcare teams when making your healthcare decisions.

We want to hear from you. Please share your feedback on this discussion and also what you want us to cover next. Thanks so much from The Patient Story.


Incyte
Karyopharm Therapeutics

Thank you to Incyte and Karyopharm Therapeutics for supporting our patient education program. The Patient Story retains full editorial control over all content.


Myeloproliferative Neoplasm Patient Stories

Jesse and Karina H. myelofibrosis care partner

How to Support Someone with Cancer: Karina & Jesse's Myelofibrosis Story



“I underwent a lot of sadness, hardship, and difficulty, and all that entails. But I pressed forward in hope for sure. There was a lot of hope that just kept me going all those years.”
Demetria J. myelofibrosis

Demetria J., Essential Thrombocythemia (ET) progressing to Myelofibrosis



Symptoms: Extreme fatigue, stomach pain (later identified as due to an enlarged spleen), dizziness, shortness of breath
Treatments: Spleen-shrinking medication, regular blood transfusions, bone marrow transplant
Neal H. prefibrotic myelofibrosis

Neal H., Prefibrotic Myelofibrosis



Symptoms: Night sweats, severe itching, abdominal pain, bone pain

Treatment: Tumor necrosis factor blocker, chemotherapy, targeted therapy, testosterone replacement therapy

Andrea S. feature profile

Andrea S., essential thrombocythemia (ET) progressing to Myelofibrosis



Symptoms: Fatigue, anemia
Treatments: Targeted therapy (JAK inhibitor), blood transfusions, allogeneic stem cell transplant
Load More
Demetria J. myelofibrosis

Demetria J., Essential Thrombocythemia (ET) progressing to Myelofibrosis



Symptoms: Extreme fatigue, stomach pain (later identified as due to an enlarged spleen), dizziness, shortness of breath
Treatments: Spleen-shrinking medication, regular blood transfusions, bone marrow transplant
Ruth R., Myeloproliferative Neoplasm (MPN)Symptoms: Anemia, bleeding Treatments: Chemotherapy, clinical trial
Neal H. prefibrotic myelofibrosis

Neal H., Prefibrotic Myelofibrosis



Symptoms: Night sweats, severe itching, abdominal pain, bone pain

Treatment: Tumor necrosis factor blocker, chemotherapy, targeted therapy, testosterone replacement therapy


Essential Thrombocythemia Treatments (2022)



Dr. Mesa shares the latest on essential thrombocythemia treatment updates to watch out for in 2022.
Load More
Taja S. polycythemia vera

Taja S., Polycythemia Vera



Symptoms: Chronic fatigue, fainting, stroke-like episodes, elevated hemoglobin, hematocrit, and platelet count
Treatments: Emergency surgery for ruptured cyst & bowel obstruction, chemotherapy, radiation, bone marrow transplant
Jeremy S. polycythemia vera

Jeremy S., Polycythemia Vera



Jeremy Smith and Dr. Angela Fleischman share empowering insights on living well with polycythemia vera, from symptoms to treatment and patient advocacy.
Todd S. polycythemia vera

Todd S., Polycythemia Vera



Symptoms: None, discovered during a routine physical that uncovered extremely high blood counts

Treatments: Phlebotomy, aspirin

Nick N. feature profile

Nick N., Polycythemia Vera



Symptoms: None, caught at routine physical
Treatments: Phlebotomy, Besremi
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Myeloproliferative Neoplasm Resources

Your MPN, Your Journey - How New Discoveries Will Impact Personalized Care

Your MPN, Your Journey: How New Discoveries Will Impact Personalized Care



Dr. John Mascarenhas of The Tisch Cancer Institute at Mount Sinai and patient advocate Andrew Schorr share the latest breakthroughs in MPN care.

Srdan Verstovsek, MD, PhD



Role: Director, Clinical Research Center for MPNs at MD Anderson; Section Chief, MPNs; Prof., Dept. of Leukemia
Focus: Myeloproliferative neoplasms (MPN)
Institution: MD Anderson
Dr. Serge Verstovsek and Dr. Naveen Pemmaraju

Myelofibrosis Highlights from ASH 2022



Dr. Serge Verstovsek and Dr. Naveen Pemmaraju discuss cutting-edge treatments and therapies, and combination therapy as a focus in treating myelofibrosis.

The Latest in Myelofibrosis Treatments - Clinical Trials

Clinical Trials and You: How to Navigate Treatment?



Patient advocate Ruth Fein Revell, experts Dr. Angela Fleischman and Dr. Ruben Mesa, together with clinical trial nurse Melissa Melendez delve into the cutting-edge realm of myelofibrosis clinical trials.
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Categories
Bone marrow transplant MPN Patient Stories Polycythemia Vera Treatments

From Confusing Symptoms to Motherhood and Advocacy: Taja’s Polycythemia Vera Story

From Confusing Symptoms to Motherhood and Advocacy: Taja’s Polycythemia Vera Story

Living with polycythemia vera, a rare myeloproliferative neoplasm, changed Taja’s path entirely. She was diagnosed in 2015 after fainting spells and abnormal lab results. For months, doctors dismissed her concerns, telling her she was too young for cancer. By tracking her own labs and bringing them to a clinical director, she finally received the correct diagnosis.

Interviewed by: Ruth Fein Revell
Edited by: Katrina Villareal

At the same time, Taja was caring for her grandmother with pancreatic cancer. Experiencing illness both as a patient and a caregiver shaped her belief that gratitude reveals hidden beauty, even during pain and uncertainty.

Taja S. polycythemia vera

When told she could not safely become pregnant, Taja and her husband sought specialists and pursued IVF (in vitro fertilization) during the COVID pandemic. Their efforts succeeded and they welcomed their daughter, Miracle. Afterward, her disease accelerated and she underwent a bone marrow transplant with her father as the donor.

Though the transplant caused ongoing side effects, Taja chooses to use her voice through Miracle Circle Hands, an advocacy group that supports people with invisible illnesses. Her hope is to show that even in hardship, life can still offer light and connection.

Key Story Takeaways
  • Self-advocacy can be life-saving when symptoms are overlooked or dismissed.
  • Gratitude became Taja’s core practice, helping her find meaning through illness.
  • IVF gave her and her husband the chance to welcome their daughter, Miracle, despite doubts from doctors.
  • The bone marrow transplant brought difficult side effects but also a path forward.
  • Taja transformed her experience into advocacy, creating support networks for others with invisible illnesses.

  • Name: Taja S.
  • Age at Diagnosis:
    • 23
  • Diagnosis:
    • Polycythemia Vera (PV)
  • Symptoms:
    • Chronic fatigue
    • Fainting
    • Stroke-like episodes
    • Elevated hemoglobin, hematocrit, and platelet count
  • Treatments:
    • Emergency surgery for ruptured cyst & bowel obstruction
    • Chemotherapy
    • Radiation
    • Bone marrow transplant
Taja S. polycythemia vera

PharmaEssentia

Thank you to PharmaEssentia for supporting our independent 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.



How My Loved Ones Would Describe Me

My name is Taja. I was diagnosed with a myeloproliferative neoplasm (MPN) called polycythemia vera in 2015, which eventually required a bone marrow transplant. I am happy to share my story.

Friends and family describe me as compassionate, caring, and someone with a giving heart. I am very concerned about others, often less about myself. I’m definitely a people person focused on changing the world or its outcome.

Taja S. polycythemia vera
Jeremy S. polycythemia vera

When I First Knew Something Was Wrong

During my junior year of college, while working full-time and going to school full-time, I began feeling off. After multiple visits to emergency room doctors, primary care doctors, and a GI specialist (gastroenterologist), the only doctor truly alarmed by my lab work was my GI doctor, who flagged my elevated red blood cells, hemoglobin, hematocrit, and platelet count. Despite these warning signs, my primary care doctor dismissed my concerns and put me on antibiotics, claiming it was probably an infection due to my age.

The Moment Everything Changed

After blacking out behind the wheel, which resulted in a car accident, I took it upon myself to research my chart and labs, and track my numbers as they kept rising. Ultimately, I presented these findings to the clinical director at work, which led to further testing. A week later, on February 14, 2015, I was diagnosed with polycythemia vera.

Taja S. polycythemia vera

The more grateful your heart, the more beauty you see. I use that every day.

Taja S. polycythemia vera

How I Balanced Caring for Myself and Others

Around the time of my diagnosis, my grandmother was also diagnosed with pancreatic cancer. Caring for her and not understanding her prognosis made me realize how different it is to care for loved ones during illness. I overextended myself to support her, especially when family support felt lacking.

I Was Told I Was Too Young to Have Cancer

Being young, I was frequently dismissed by medical professionals, even when experiencing severe symptoms, such as passing out at home and potential signs of a stroke. In the hospital, instead of seeking answers, they suspected drug use. This lack of understanding extended to my family, who were also uneducated about my condition.

Taja S. polycythemia vera

Doctors do not have the last say. Only God does.

Taja S. polycythemia vera

I Decided to Move Forward with IVF

I was told pregnancy was not an option. Both my OB and hematologist were unfamiliar with the disease because of limited research available. Despite discouragement, my husband and I sought specialists and ultimately went through IVF during the COVID pandemic. Against the odds, we succeeded on the first try.

My Pregnancy Was Difficult

During my pregnancy, my condition went dormant and my lab numbers normalized. However, I faced a crisis at six weeks postpartum with a ruptured cyst and bowel obstruction, requiring emergency surgery. Thankfully, my daughter Miracle and I came through safely.

Where I Find Support

My husband has been my advocate and support, stepping in where family and friends could not. His unwavering devotion has carried me through the bone marrow transplant and ongoing struggles.

Why I Decided to Move Forward with a Transplant

After Miracle’s birth, my disease spiraled. My platelets remained critically high despite aggressive treatments. Transplant was the only option. Facing the difficulty of finding a donor as a woman of color, my father became my half-match (haploidentical) donor.

Taja S. polycythemia vera

You really shouldn’t be here. The things you’ve been up against…it’s pretty phenomenal.

Taja S. polycythemia vera

How the Transplant Has Impacted My Life

The transplant threw my body into menopause. I now struggle with graft versus host disease (GvHD), chronic pain from avascular necrosis (or osteonecrosis), and lingering effects from COVID. Emotional and mental health challenges have been profound.

How I’m Helping Others

I had to go on full disability and have not returned to work. Creating organizations and advocacy is my way to fulfill my purpose and help others feel seen and heard. Drawing on my experiences, I started Miracle Circle Hands to advocate for those with invisible diseases and seniors. The organization connects resources and builds supportive networks.

Taja S. polycythemia vera

I am forever grateful that I was able to have the transplant. I am here to speak to you, but it’s definitely stressful.

Taja S. polycythemia vera

My Message of Hope

I hope to wake up each day and to pour back into people. “The more grateful your heart, the more beauty you see.” There is light at the end of the tunnel. Even with hills and valleys, life’s mountaintops are there to be reached.


Taja S. polycythemia vera
Thank you for sharing your story, Taja!

Inspired by Taja's story?

Share your story, too!


PharmaEssentia

Thank you to PharmaEssentia for supporting our independent 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.


More Polycythemia Vera Stories

Taja S. polycythemia vera

Taja S., Polycythemia Vera



Symptoms: Chronic fatigue, fainting, stroke-like episodes, elevated hemoglobin, hematocrit, and platelet count
Treatments: Emergency surgery for ruptured cyst & bowel obstruction, chemotherapy, radiation, bone marrow transplant
Jeremy S. polycythemia vera

Jeremy S., Polycythemia Vera



Jeremy Smith and Dr. Angela Fleischman share empowering insights on living well with polycythemia vera, from symptoms to treatment and patient advocacy.
Todd S. polycythemia vera

Todd S., Polycythemia Vera



Symptoms: None, discovered during a routine physical that uncovered extremely high blood counts

Treatments: Phlebotomy, aspirin

Nick N. feature profile

Nick N., Polycythemia Vera



Symptoms: None, caught at routine physical
Treatments: Phlebotomy, Besremi
Load More

Categories
Chemotherapy Neuroendocrine Tumor Neuroendocrine Tumors Pancreaticoduodenectomy (Whipple procedure) Partial hepatectomy Patient Stories Rare Surgery Treatments

How Tabbie Faces Stage 4 Neuroendocrine Pancreatic Cancer at 25

How Tabbie Faces Stage 4 Neuroendocrine Pancreatic Cancer at 25

When Tabbie first heard the words “It’s cancer,” she was just 25 years old, full of energy, and living her life in the Bay Area while working at a hospital. She didn’t think she had symptoms. After all, who wouldn’t feel tired after working long night shifts and driving an hour and a half home? But after a sudden, sharp abdominal pain that grew worse by the day, she decided to seek medical care, a decision that changed everything.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

At urgent care, the pain was so severe that even a gentle touch was unbearable. After multiple scans, doctors discovered tumors in Tabbie’s pancreas and liver. Soon, the diagnosis became clear: stage 4 neuroendocrine pancreatic cancer. Hearing that news was devastating, especially since a close friend had recently died of cancer. Tabbie’s first thought was, “I’m going to die,” but she quickly realized that she didn’t want this diagnosis to define her.

Tabbie V. neuroendocrine pancreatic cancer

What makes Tabbie’s story especially powerful is the way she leaned into humor and positivity, even in the darkest moments. She cracked jokes with her nurses, tried on wigs for fun before chemo, and kept her spirit alive by staying connected with friends and support groups.

Still, the weight of decisions was heavy, especially when her medical team talked about freezing her eggs. At 25, Tabbie never thought she’d be injecting herself with hormones to preserve her fertility, but she chose to embrace the process and hold onto hope for the future.

Preparing for her first chemotherapy treatments was overwhelming. Tabbie started with oral chemo, hoping for a gentler option, but when it didn’t work, she moved to IV chemo and eventually underwent a Whipple procedure, also known as pancreaticoduodenectomy, along with a liver resection. (Editor’s Note: A pancreaticoduodenectomy, commonly known as the Whipple procedure, is a complex surgery to remove cancerous tumors from the pancreas. It involves removing the head of the pancreas, the duodenum, part of the bile duct, and the gallbladder.)

Surgery was frightening, but she found strength in the fact that her care team was made up of trusted colleagues from her own hospital. That trust, along with support from social workers, nurses, and online communities, became her anchor.

Even after surgery, Tabbie faced challenges like digestive issues, dietary restrictions, and the emotional impact of feeling “different” from others her age who were building families or careers. Despite all this, she continues to choose joy, reminding herself and others to love their bodies, ask for support, and not let negative thoughts take control. She openly shares her experience on social media and in support groups, offering advice to others preparing for Whipple surgery or chemotherapy.

Tabbie’s story highlights not just the medical side of neuroendocrine pancreatic cancer, but the deep mental health impact of survivorship. By speaking candidly about her fears, choices, and resilience, she empowers others to take control of their care, honor their feelings, and know they’re not alone.

Watch Tabbie’s interview or read the full transcript below to find out more about her story:

  • How Tabbie turned fear into laughter while preparing for chemo
  • The surprising age when she was told to freeze her eggs
  • Why she trusted her medical team like family
  • The hardest part of recovery after her Whipple procedure
  • How support groups and social media gave her strength on tough days

  • Name: Tabbie V.
  • Age at Diagnosis:
    • 25
  • Diagnosis:
    • Pancreatic Neuroendocrine Tumor (pNET)
  • Staging:
    • Stage 4
  • Symptoms:
    • Abdominal pain
    • Unusual organ “inflammation” feeling when walking
    • Fatigue
  • Treatments:
    • Chemotherapy: oral and IV
    • Surgeries: Whipple procedure (pancreaticoduodenectomy) and liver resection (partial hepatectomy)
Tabbie V. neuroendocrine pancreatic cancer
Tabbie V. neuroendocrine pancreatic cancer
Tabbie V. neuroendocrine pancreatic cancer
Tabbie V. neuroendocrine pancreatic cancer
Tabbie V. neuroendocrine pancreatic cancer
Tabbie V. neuroendocrine pancreatic cancer
Tabbie V. neuroendocrine pancreatic cancer

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

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



Hi, I’m Tabbie

I’m a very loving and fun person. You’ll never see me upset because I don’t have that mentality where I need to let people know that something’s bothering me. I’m usually cracking jokes.

About four years ago, I moved to the Bay Area in California and I’ve been working at a hospital ever since.

I didn’t think I had any symptoms

I didn’t have any symptoms, or at least I didn’t think I had any. I work swings, so I go into work at 3 p.m. and get out by 1:30 in the morning. At the time, I lived far from work, about an hour and a half away, so the drive was exhausting and I assumed that’s why I was tired.

But one Monday, I was on a caregiving job in LA for an older woman, which involved lifting her off the chair and putting her anywhere she wanted. She was petite, but I’m also petite. I’m only 4’11. The following day, I called in sick because I had abdominal pain. I didn’t know if I was sore or if it was actual pain, so I ignored it. It was something that I hadn’t experienced before, but I let it go until Wednesday.

I had to fly back to the Bay Area for work and my abdomen hurt a little more, but it was a weird pain because every step I took, I felt my organs were inflamed. When I arrived, I texted my boss and asked if it was okay if I went to urgent care once the following person came in and she told me to go immediately.

I decided to go to urgent care

I was physically at the hospital, but I didn’t want to go to the emergency room, so I went to urgent care. The pain was intense. When the doctor palpated my stomach, he couldn’t even touch me; that’s how painful it was. I thought the worst, like twisted or dead bowels.

He said, “You need to go to the emergency room.” I said, “Do you think it has to do with my bowels being twisted?” He said, “I don’t know, but you need to get a scan done.” The hospital was a five-minute drive, so I went back to where I worked, but to the emergency room. I felt weird because I was in my scrubs, sitting in the waiting room, so people were looking at me.

When they finally took me in, they did a series of scans and asked me questions. I didn’t have a fever, diarrhea, nor was I throwing up. They asked me if I was around livestock or if I had left the country. They were wondering what could possibly be causing my symptoms. They did an ultrasound and that’s when they saw that I had cysts. Then they asked if I had been around a sick dog. My dog has been throwing up for a day, but nothing horrible. They thought that’s what it was and that I had a tapeworm. They decided to do a scan and saw it in my pancreas and liver.

They didn’t tell me that they still thought it was a tapeworm as I got admitted into the hospital. I was speaking back and forth to a bunch of doctors and eventually, one of them came in and said, “It’s cancer.” I didn’t know what to think. It was like how you always wondered. Nonetheless, my mom and my boyfriend were there.

Thankfully, with the type of cancer that I have, I know a surgeon whom I work with and who specializes in Whipple procedures, pancreatic damage, and liver surgeries. I contacted one of the nurses whom I work with. She’s my charge nurse. She said, “This is the doctor you’re going to see.” It worked out for me in the end because I had a care team that knew me and I was able to pick out my team because I worked alongside them.

The moment everything changed

As soon as they diagnosed me and told me that I had cancer, I started crying. That’s a normal reaction for everyone. The first thing that popped into my head was, “I’m going to die.”

It’s still hard to talk about it. How do I explain it? A year before I got diagnosed, I had a friend who passed away from cancer, so that’s the first thing that popped into my head. Obviously, no one should think that way, but, unfortunately, that’s the reality of things. That’s the first thought, “I’m going to pass away.” As time went by, after I cried it out, I realized that I can’t let cancer determine who I am.

Another thing that popped into my head was the thought of losing my hair. Immediately, I got on Amazon for wigs. My boyfriend’s sister loves to wear wigs to style them, so one day, I came over to her house and she said, “This wig would look good on you.”

A whole bunch of negative thoughts popped into my head and I realized: what good is that going to do for me? I’m not that person. I’m not a sad person. I’m always the life of the party. I always like making people laugh in the most uncomfortable situations.

That’s what I did when I was in the hospital. I was waiting for a biopsy on my pancreas and they didn’t let me eat for close to 34 hours. I made a joke to the nurses, which I probably shouldn’t have in that moment. I said, “I guess hunger is going to kill me before the cancer does.” They all looked at me like, “Are you okay?” It’s just a joke. That’s how I cope.

The cancer had spread

I was still admitted to the hospital during all this. On the first night, I had CT scans, an MRI, and ultrasounds. I was in the hospital for three days. They wanted to do a biopsy on my liver, but based on the scans, they saw that the tumors were fluid-filled, so they decided not to mess with them. They went to the pancreas to look at the two tumors there.

I was waiting and wasn’t allowed anything by mouth for the whole day. Finally, they brought me down to get an EGD (esophagogastroduodenoscopy) done, where they put me to sleep, so they could put a tube down my throat and biopsy my pancreas. I got the results the following day. I don’t remember exactly what test they wanted to do, but I knew that the section where they wanted to do the test didn’t run on weekends. I said, “I work at the hospital. It’s not like I’m going anywhere. Can I just go home and be scheduled for whenever I need to do that?” They agreed and were able to discharge me.

I followed up the next week to do the test to confirm the type of cancer it was, which was neuroendocrine. But it was a series of waiting games because initially, they told me it was stage 1. Unfortunately, they could not test the liver due to the fluid-filled sacs. I remember getting that phone call and they said it was stage 4 because it metastasized to my liver. From what I remember, I had two large tumors on my pancreas and about 17 on my liver.

When I heard it was stage 4, it was a little more serious for me because they hadn’t given me any information while I was in the hospital. The most that I could do was cry because I was sick.

Immediately, I ran to Doctor Google. I searched “pancreatic cancer stage 4” and I read that pancreatic cancer is the deadliest and that people don’t find out about it or get symptoms from it until they’re at the end stage, so that scared me even more. Why am I on Google? Let me get off of this because it’s not doing me any good.

I cried more when I heard it was stage 4 than I did when I was in the hospital, mostly because I was by myself. I didn’t have a circle of doctors where I was trying to hold back my tears to be able to talk to them. But it was scary because it was just me and my best friend in the house, but she was sleeping because she had just gotten home from a shift, so I didn’t know what to do. I was going crazy. I needed to talk to someone about this and everyone’s at work. I ended up waiting until she woke up, walked into the room, and dropped the news on her.

At this time, I was doing my prerequisites to apply to the nursing program. I was also in the process of moving out of the Bay Area and into LA with my boyfriend. Everything had to be put on hold. Because my care team was in the Bay Area, I decided to stay at my job because I have my doctors right there and for insurance reasons. If I moved to LA, I didn’t know if I would find a good job that would provide good insurance. I had to put school on hold. I had to focus on myself.

There are a lot of things you don’t realize that people go through before they start chemotherapy. I was only 25 at the time. They told me about freezing my eggs. I was injecting myself three times a day. Sometimes I’d be too scared because I don’t like needles, so I would ask one of the nurses to inject me. I was constantly going back and forth between the Bay Area and LA until I started chemo. That’s when it got a little harder because I couldn’t travel as much. I felt like I was getting sicker.

Working in a hospital, I had direct contact with a great medical team

I was lucky enough not to run into any issues because I had resources. It all unfolded. I had a lot of people by my side helping me and making sure that I was on the right path. People around me in the hospital didn’t know that I had cancer. Everyone was in the dark but we made it work.

I had contact with my surgeon. He provided his cell phone number and told me that if I had any questions, I could text him. I had a social worker who gave me all the information, sent me everything through my health portal, and said, “If you have any questions, reach out to this person. If you want to know more information, here’s a link to information from different sites.”

My surgeon initially told me that the end goal would be to go through a Whipple procedure (pancreaticoduodenectomy), but he would like me to have chemotherapy first. He wanted to shrink the tumors as much as possible, so it’d be a lot easier to go in there.

But he did give me some treatment options. The first one was a clinical trial. I don’t remember if it was radiation, but he told me that one of the risks would be potentially having a different type of cancer, potentially a blood cancer, down the line. I said, “Why would I want to treat this cancer and then risk getting a different type of cancer in the future?” Then he gave me another option, which was oral chemotherapy, and see how that plays out. If that worked out, we would continue with that and if it didn’t, we would start IV infusions.

I never imagined I would have to worry about my fertility at 25 years old

When they told me that I should potentially freeze my eggs, I said, “Let’s do it.” I’m 25. I don’t have any kids. I would like to have the opportunity to have kids. I didn’t know what I was getting myself into. I didn’t know what the process was.

I had my first consultation and they explained it to me. They said I would be injecting myself. I would be coming in every other day to get a transvaginal ultrasound. They’re going to get bloodwork done every day to monitor, which was painful in itself. But the silver lining of that was when I would get my ultrasound done, the doctor would say I was very fertile. I always thought that I was infertile. I don’t know why that was in the back of my head, so hearing that made me feel a little better. I now know that I will be able to have kids in the future.

The treatment plan I chose

I chose to do oral chemo, which, when I researched, wasn’t as aggressive, so I thought I could manage it. I was on chemo for two weeks and then I had a break for a week before I started again.

Luckily enough, my boss worked with me so that I could do a hybrid schedule. I could work from home while I was on chemo and then when I was off, I could go to work. For the two weeks that I was on the oral chemo, I would work from home and then during the one-week break, I would go back to work. It was a constant back and forth, which I did for about three cycles.

After three cycles, we found that it wasn’t working. The tumors weren’t shrinking, so I got put on IV chemo for another four rounds. Again, that still wasn’t working, so that resulted in immediately going into the Whipple because they wanted to deal with the source before it got worse.

I was terrified. I’ve never had surgery. I’ve never broken a bone, sprained an ankle or wrist, nothing. I was never in the hospital until now. The idea of surgery terrified me because I didn’t know what to expect.

They told me that I would need an epidural and, obviously, the first thing you think of is a needle in your back. I didn’t want to do that, but I had no choice. I needed to choose life over whatever fear I had in my head.

He explained to me that with the Whipple, they would make an incision from the middle of my chest to my belly button. He said, “Essentially, it’s going to be like the size of your iPhone.” I thought it wasn’t so bad. I didn’t realize that on your abdomen, it’s pretty big.

He explained that they would take out my gallbladder completely, a portion of my stomach, my pancreas, and my small intestine, and group them together to make a new digestive system. Since I had tumors on my liver, he did a resection of the left side of my liver because that organ is able to regenerate after a good amount of time.

The procedure doesn’t sound fun. This is the worst surgery you can think of. He said, “It’s a very intense surgery that can take up to nine hours.” I’ve seen him do these surgeries so many times that I thought it should be a piece of cake for him. He cares about me. He trusts me and I trust him. I put myself a little more at ease.

I’ve had conversations with nurses who have also been in the operating room with him and they said he’s great and good at what he does. It put me more at ease knowing that I had my team of people who I knew cared about me and I trusted to take care of me.

I’m taking control of my treatment moving forward

After the surgery, they told me that they were going to monitor me every three months with a CT scan. Because the previous chemotherapy treatment didn’t work, there’s no point in putting me back on a treatment that is potentially not going to work.

They did want to put me on hormonal injections every month, but I opted out of that. I said, “Listen. I’m still healing from my surgery. I’m still going through the motions of finding my new normal. I also don’t want to be miserable and get an injection that you can’t prove will work. Why would I put myself through that? I want to heal on my own. I want to eat healthier rather than put myself through more pain and misery.”

I still have about 14 to 15 tumors in my liver, but I’ve been getting a scan every three months. Thankfully, the tumors have been shrinking on their own without any treatment. Essentially, he wanted to do another liver resection to try to do the right side of the liver. I asked if there’s a need to do surgery right now or if we can continue monitoring every three months and if they continue shrinking, if we could push the surgery as much as possible. He said it wasn’t a bad idea. I seem to be stable, so we’ll keep doing scans and blood work every three months, and go from there.

I’ve had to adjust my diet and workouts

Since my Whipple, there are a lot of things that I have to learn not to eat, like broccoli. I love broccoli, but I can’t eat it because, unfortunately, it makes me gassy and the gas hurts. I get bloated like a balloon quickly. I can’t eat a lot of dairy products. I used to drink milk, but I can’t do that anymore.

The other difficult part is when I wake up in the morning and I drink a cup of water, I have to run instantly to the bathroom. I have something called dumping syndrome, where anything I eat or drink, I go straight to the bathroom and it all comes out.

Since the surgery, I’ve lost 20 pounds and I haven’t gained it back. I haven’t lost more weight because everything I eat just comes out and it sucks. I like to go on vacations with my friends and I worry about going out to eat because I need to have a bathroom within two feet because I’m constantly going. It sucks. No one wants to live like that.

Aside from that, I haven’t had any moments in my life that changed drastically. I coped with the chemotherapy and didn’t let it take over me. I still functioned as normally as I could. I still lived my life. I still went back home to New York and saw my friends. I still went on trips. I went to Puerto Rico and Hawaii. I went swimming with the sharks. It was only the Whipple that made such a change in my life. But even then, I’m still very hard-headed and eat food that I’m not supposed to eat, then pay the price later, but only when I’m home. If I’m outside, I won’t do that. I’ve been eating a lot of fruits I stayed away from. Fast food doesn’t do any good and I feel disgusting after.

I feel like I haven’t had the normal lifestyle of a 25- to 27-year-old because people around me are getting married or having kids. Having to put my prerequisites on hold sucked because I was in the zone. I feel like I only had three prerequisites left until I could apply for the nursing program, but chemo got in the way. I could not stay awake long, so I unfortunately had to quit until my situation was resolved, especially going back and forth from the Bay Area to LA.

There are certain things that I can’t do. I see people doing Pilates. I have no core strength anymore and if I try, it’ll hurt me and I could possibly get a hernia. I can’t participate in that and it sucks. Yes, I can do a class for beginners, so it’s easier, but I would want to experience that. I have to be a lot more cautious than other people.

Where I find support

I love to go on TikTok. I love to do my own research. I found a support group on Facebook. While going through healing from the Whipple, that page helped a lot because if I had questions, I would pop it in there and a ton of people would give me their response, what they went through, and what worked for them. I was able to cope with that.

If I felt sad or in the dark, I’d pop a message on there because they can relate. Yes, I can run to my boyfriend and tell him I feel this, this, and this, but he wouldn’t understand. It felt a lot easier for me to speak to strangers, but they weren’t strangers to what I was going through, so that was very helpful.

Until this day, a lot of people, especially on TikTok, where I post about my experience, would message me and say, “Hey, I’m going to go through a Whipple. What do you suggest?” I’ll give them my suggestions. But I also refer them to the Facebook support group so that they can see what everyone’s going through and ask their questions.

What I want others to know

Be kind to your body. You have to love yourself. Understand and accept the fact that you’re sick and go from there. Everything is a mental game. If you constantly think the worst, you’re going to put yourself in that mental state and feel sicker because now you’re feeling depressed.

I forced myself to get up from bed every day. I forced myself to talk about it because it’s one thing to have those thoughts in your head and it’s another thing to talk about it out loud. It makes you feel better. When you let it out, you’re hearing what other people have to say. Positive feedback helps a lot.

I love the support group for Whipple Warriors. I gave an eighth-month post-Whipple update and people were saying, “Stories like yours inspire me. You’re doing great. I’m so happy to see that you’re doing amazing. Keep going. Keep fighting. You’re a warrior.” Those are better compliments than being told you’re pretty or you make it look so good because they’re coming from people who are also going through the same thing as you. I look up to older people. It’s like a warm hug and you get that warm feeling.


Tabbie V. neuroendocrine pancreatic cancer
Thank you for sharing your story, Tabbie!

Inspired by Tabbie's story?

Share your story, too!


Tabbie V. neuroendocrine pancreatic cancer

Tabbie V., Pancreatic Neuroendocrine Tumor (pNET)



Symptoms: Abdominal pain, unusual organ "inflammation" feeling when walking, fatigue
Treatments: Chemotherapy (oral and IV), surgeries (Whipple procedure or pancreaticoduodenectomy, liver resection or partial hepatectomy)
...
Hayley O. neuroendocrine pancreatic cancer

Hayley O., Pancreatic Neuroendocrine Tumor (pNET)



Symptoms: Severe right-sided pelvic pain, nausea, diarrhea
Treatment: Surgery (pancreaticoduodenectomy or Whipple procedure)
...
Drea E. stage 3 neuroendocrine tumor

Drea E., Gastric Neuroendocrine Tumor (gNET), Stage 3, Grade 1



Symptoms: Fainting spells, fatigue, dizziness, anemia, shortness of breath, absence of menstruation, unexplained weight loss, night sweats
Treatment: Surgery (total gastrectomy with a Roux-en-Y reconstruction)
...
Haley M. neuroendocrine pancreatic cancer

Haley M., Pancreatic Neuroendocrine Tumor (pNET)



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

Categories
Chemotherapy EGFR Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Tagrisso (osimertinib) Targeted Therapy Treatments Tyrosine kinase inhibitor (TKI)

Emily Breaks Stigmas and Builds Awareness Around Stage 4 EGFR+ Lung Cancer

Emily Breaks Stigmas and Builds Awareness Around Stage 4 EGFR+ Lung Cancer

Emily never imagined that a lingering cough would lead to a diagnosis of stage 4 EGFR+ lung cancer in September 2024. As someone who is active and outdoorsy, she initially chalked her symptoms up to Austin’s notorious allergy season. But when she struggled to breathe during a familiar hike and noticed her voice changing, she knew something was off. Even then, cancer wasn’t on her radar until scans confirmed the diagnosis.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

At first, Emily felt overwhelmed, thinking her life expectancy had suddenly been cut short. However, her oncologist reassured her that while stage 4 EGFR+ lung cancer is incurable, it’s treatable and treatments have come a long way. That perspective helped her move from despair to action. Emily chose both chemotherapy and targeted therapy, later adding radiation, and now she’s stable with minimal side effects. She enjoys being active again and even swims with her neighborhood team.

Emily N. stage 4 EGFR+ lung cancer

Throughout her experience, Emily has leaned heavily on her friends, family, and wider community. From organizing rides to appointments to surprising her with a fully cleaned and organized house, her circle showed up in ways she never expected. She emphasizes that asking for help is not a weakness; it’s a gift that allows others to love and support you.

Emily also became vocal about advocacy, especially within the Asian community, where awareness about stage 4 EGFR+ lung cancer is still limited. She shares her story and reminds others not to dismiss persistent coughs or shortness of breath. She hopes that by speaking up, more people will push for answers earlier and potentially catch cancer sooner.

Another pillar of her healing has been focusing on mental health. Emily admits that when treatment began, she was too overwhelmed to join support groups, but therapy later helped her process the uncertainty of living with advanced cancer. Practicing mindfulness and giving herself grace has been essential. She’s learning to appreciate everyday moments, like petting her dogs, spending time with her kids, and cherishing the present, without constantly worrying about the future.

Stage 4 EGFR+ lung cancer does not mean life is over. With evolving treatments and community support, it’s possible to live fully and meaningfully. Emily’s story reminds us that resilience often looks like honesty, vulnerability, and the courage to ask for help.

Hear directly from Emily in her video or keep scrolling to read the full interview:

  • How a “simple cough” turned into a diagnosis of stage 4 EGFR+ lung cancer
  • The powerful ways Emily’s friends and family rallied around her
  • Why Emily is raising awareness about lung cancer, specifically within the Asian community
  • How therapy, mindfulness, and giving herself grace helped Emily find peace
  • The hopeful perspective her oncologist shared that changed everything

  • Name: Emily N.
  • Age of Diagnosis:
    • 46
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • EGFR
  • Symptoms:
    • Chronic cough
    • Persistent post-nasal drip
    • Shortness of breath while doing simple activities
    • Changes in voice
    • Rib pain
  • Treatments:
    • Chemotherapy
    • Targeted therapy: tyrosine kinase inhibitor (TKI)
    • Radiation therapy
Emily N. stage 4 EGFR+ lung cancer
Emily N. stage 4 EGFR+ lung cancer
Emily N. stage 4 EGFR+ lung cancer
Emily N. stage 4 EGFR+ lung cancer
Emily N. stage 4 EGFR+ lung cancer
Emily N. stage 4 EGFR+ lung cancer
Emily N. stage 4 EGFR+ lung cancer

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

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



Hi, I’m Emily

I live in Austin, Texas, and I was diagnosed with stage 4 lung cancer with an EGFR mutation in September 2024.

I would say that I’m an ambivert, a little bit quirky, and pretty dorky. I love nature and animals. I try to love my plants, but they don’t always love me back. I love to read, swim, and trail run. I have a very large support network that I have been very blessed with.

When I first felt something was wrong

In the fall of 2023, I started developing a cough, which I didn’t think much of. I live in Austin. The allergies are insane. They’re tough, so I didn’t think much of it.

When the cough persisted into early 2024 again, I didn’t think much of it because now we’re into cedar season. There was always something on top of it. I’m pretty active and healthy, so I never considered that anything was wrong.

Around May 2024, I went to a doctor because I could feel that I had a persistent post-nasal drip, which he confirmed. I mentioned a cough, but he didn’t seem too concerned about it. He prescribed some nasal sprays and sent me on my way.

It was on August 31st when I realized that something was wrong. I went for a hike with my partner and it was hot. But as we were finishing the hike, which had a decent uphill grade, I couldn’t breathe. I was doubled over and couldn’t catch my breath. This is a hike I’ve done many times, so I was a little bit surprised, as was he. I chalked it up to the heat.

But by then, my voice had already started to change. I had no projection in my voice. It was scratchy. Sometimes it would get high-pitched; other times, it would get a little deeper. I didn’t think much of it because I thought it was because I was coughing a lot.

But when I realized I was having some difficulty breathing on a hike that I did all the time, it became my first red flag. Then I started noticing little things like getting winded going up stairs or doing a trail run and having trouble breathing. That’s when I freaked out and realized I needed to see a doctor about this.

The moment everything changed

When I went to a new primary care provider (PCP), I thought she was going to say I have asthma or bronchitis. Never in the realm of possibility did I think I was going to have lung cancer. But she took everything very seriously. She sent me to get a chest X-ray, referred me to an ENT, and ordered blood tests.

I got a chest X-ray that same week and then she called me on the day I was supposed to go with my best friends on a girls’ trip to celebrate a birthday. She said that there were concerns with my chest X-ray. There were nodules and she wanted me to get a CT scan when I returned. She mentioned the possibility of cancer, but she said it also could be nothing. So when my best friend walked in the door to pick me up to go to the airport, the first words out of my mouth were, “I might have cancer,” and we started freaking out. This is a great start to a girls’ trip.

When I got back, I got my CT scan done on a Friday and the physician assistant (PA) called me that Sunday, and it’s never good news when your PA calls on a weekend. I was out and almost didn’t pick up the call because I didn’t know who it was, but I’m glad I did.

She introduced herself and I asked, “Do I need to sit down?” She said yes. She explained that the nodules were cancerous. I had a bajillion questions and rightfully, she said, “I’m not an oncologist. I can’t talk about staging.” She did give me her personal cell phone number for support and then said, “I’m referring you out to Texas Oncology.”

At that time, I hadn’t told anybody other than my two best friends with whom I went on the girls’ trip. I called my sister on my way home, went straight to another best friend’s house, and banged on her door and said, “Let me in. I need you.” We held each other and sobbed. That was a rough day.

The cancer spread

That same best friend took me to my appointment and my oncologist explained that this was stage 4. It metastasized to other parts of my body. I found out later exactly where it all went. There were quite a few places.

One thing she indicated was that I had a spot on my eighth rib bone on my right side, which explained why, over the summer, I apparently had fractured it and had no idea. I thought it was an intercostal rib strain. I would have no reason to think I would have fractured a rib, but she explained why I was in so much pain there.

I went into the appointment saying, “How can I have lung cancer? I’m a nonsmoker. I’m 45 years old. I’m active. I’m healthy.” She explained that I perfectly fit the demographic of EGFR lung cancer. At that point, it was the end of September. I still hadn’t had any biopsies, so she had me admitted to the hospital. I was there for about five days for a bunch of tests. They did a lung biopsy, checked out my pancreas, and did another MRI. That week was a blur.

My oncologist is very well regarded within the community here. Every time I mention her name, other patients would say she’s the best. Other medical professionals I went to also say she’s the best. At one point, she explained that she was considering working at MD Anderson and decided not to. My other thought was to go to MD Anderson, but that would have been logistically very difficult. I completely trusted her judgment and my case seemed like an open-and-shut case.

How I educated myself about my diagnosis

I knew absolutely nothing because in my head, lung cancer was for smokers. When she mentioned that, of course, I started Googling everything I could about EGFR. It came down to the question: Why me? What could I have done differently? It just came down to bad luck. Had I known that a chronic cough was a symptom, I would have gone to the doctor immediately. That’s when I started speaking about this type of lung cancer because I got a sense that it wasn’t well-known, especially in the Asian community.

At the time, I didn’t join any support groups. I thought it would be too overwhelming because initially, it was all too much. A lot of the information, especially before my first appointment with my oncologist, was very grim. There was a two-week period when I had no idea what to do. I just knew I had stage 4 cancer.

At the time, my boys were 12 and 14. I wanted to be as open and honest with my kids as possible. I didn’t want to hide anything from them, so I was very real and honest. I said, “This is scary. I don’t know what’s going to happen. The worst thing that could happen is something bad happening to you guys. The second worst thing is me leaving you too soon.”

I was worried that I wouldn’t see my youngest son graduate from high school. They’re still babies. They’re not full-fledged adults. I wasn’t ready to leave them. I needed to process all the fears and worries by myself. I thought that if I joined a support group, I would spiral deeper.

For my kids, we had them go to Wonders & Worries in Austin. They went through a six-week program, which I think was helpful for them. Once I got through my hospital stay, process, and understood that this wasn’t necessarily a death sentence and it was treatable, my mindset changed. I didn’t need therapy at that time because I needed to survive. I needed to process everything. I’m in therapy now, but at that time, I was in my head too much to even talk about it over and over again.

It was absolutely sobering. My immediate reaction was I’m screwed. I’m dead in a few years. Of course, this was before my oncologist said anything. I thought, “This is it for me.” It’s probably the scariest news someone can get about their health, especially having no idea that you were sick to begin with.

The primary was my left lung. I had innumerable small nodules in my right lung. It had also spread to the rib, sacrum, and pancreas, and I also had a tiny spot on my brain.

I was given options for treatment

She mentioned targeted therapy and a particular drug that worked very well with this type of cancer. However, it’s a little bit slow-acting. She mentioned that if I wanted to be more aggressive, I could do chemotherapy. We discussed the pros and cons of both treatment options. I want to fight this as hard as I can, so I decided to take the aggressive approach and start chemotherapy, which was in November. She agreed with it. She let me drive that discussion and the decision. Afterward, she said, “That’s what I would have chosen for you as well.”

I started the targeted therapy drug and chemotherapy on the same day. I had four rounds of chemo between November 2024 and January 2025. After my PET scan in January, I received good news — she told me I wouldn’t need chemo anymore.

I went back to work and that same week, I received word that after discussing with a radiation oncologist, the two of them decided that it would be beneficial for me to also do a couple of rounds of radiation.

What life is like on targeted therapy

This particular drug that I’m on, I need to take at the same time every day. I take it between 10:00 and 10:30 every morning. I have been very lucky that I haven’t had a lot of side effects with the drug itself. I definitely felt them with chemo. The drug itself has been fine. I don’t feel much of a difference. I feel great right now. I wake up, hang out, take my drug, and go about my day. No major side effects.

The big side effect I had was joint pain. I felt it mostly in my fingers and knees, and occasionally on my hips. It varied from time to time, but mostly my knees and my fingers, which I also wondered about. Coupled with perimenopause, it was a double whammy. I talked to my oncologist about it and she recommended that I go on a supplement. Ever since then, I’ve felt great.

How I feel about being on treatment indefinitely

My oncologist said she would be open to clinical trials for me. It would just have to be the right one. We haven’t discussed it since then, which tells me she has not seen the right one come through. She would want something that has gone through a round or two before getting me in because she does not want me to be one of the first-round folks, which I appreciate.

Part of why I’m in therapy now is that the closer I got to feeling better, the more anxious I became. I’m stage 4 and I know that I’m on this drug until it stops working. Being stage 4, I expect it to come back. I’m in a very good place right now. I’m as healthy as I can be. But it will come back. It’s just a matter of time. Waiting for the other shoe to drop brought me so much anxiety.

I feel great right now. How long am I going to feel great before it creeps up again or before the drug stops working? Is it five years? Two years? 20 years? Having that loom over my head is what was so unnerving. I keep practicing mindfulness in that regard. I talk to my therapist about it and try to stay in the moment. I also tell myself every single day that tomorrow is not guaranteed for anybody, regardless of how healthy they are.

My life will never be the same again

My fitness level completely decreased, especially while going through chemotherapy and radiation. Fall is a great time in Austin to be outside, hiking, and enjoying the weather, and I couldn’t do any of that. I couldn’t trail run anymore. I was told not to hike. I was told to walk around my neighborhood, but walking on sidewalks is not as fun as walking on dirt for me, so that took a hit in terms of my physical and mental well-being.

Once the weather started getting warmer, I also found that I couldn’t be back in the pool immediately. Any sort of exercise was basically gone, other than a nice, leisurely walk, which, for someone who is a pseudo-athlete, is very difficult. Constantly going places, whether it’s the grocery store, felt like the COVID pandemic again, where I had to make sure that I did not get any illness whatsoever from anybody. Even my friends would say, “I’m not feeling well. I need to cancel plans with you.” It’s fine and I thank them, but not having the lung capacity to do basic happy things was tough.

I went through life imagining this beautiful future, growing old with my partner, and becoming a grandma, hopefully. I had to come to grips with the idea that I could get in a car crash the next day, but what I had planned for my future may not happen. I have come to accept that if I get to be 65 years old, I will be lucky. I will be lucky if I live long enough to become a grandmother because that’s all I want right now. I want to get promoted to grandma.

Before, it felt automatic that I’d be here until my kids grow old and then I’m going to help take care of their kids. I get to love my future grandchildren. I realize that may not happen for me, so I appreciate what I have now, as cheesy as it sounds, and enjoy the moment. I appreciate every single day for what it is.

I have been through other hardships recently, but being able to travel and see old friends is a blessing, even if the reason isn’t great. Being able to pet my dogs and waking up in bed are simple things that I’m still able to do. On the flip side, life is too short to put up with a bunch of crap. It’s also important to know when to say you’re not going to deal with certain things or not live in that space and let things go.

I was able to go back to work for a few months. I was laid off recently, so that’s one of the hardships I mentioned. But being on the drug has improved my life so much. I’m back in the pool. We even have a neighborhood swim team and that’s been fun. I look forward to our weekly swim practices and hanging out with the team.

When it’s not a thousand degrees here, I will go back to the trails and do some trail running. I have a sense of normalcy now and it feels different than taking the drug every day. My life feels like it was before I got diagnosed.

Those who were closest to me, my inner circles, were aware. After diagnosis, I told my immediate family, my best friends, and two other close friends, and that was it. Then it became a need-to-know basis. If I went to a party and someone asked why I was losing my voice, if it was someone I knew well enough, I would tell them.

My story slowly came out, but I didn’t go public with it until around March. I realized that I fit the demographic. Had I known that my cough was an indicator of cancer, I would have gone to the doctor immediately and said, “Tell me about lung cancer. I think I’m at risk of this. Please run all the tests.” I would have advocated for myself.

I figured there are plenty of other people like me, so that’s when I started talking about it at work. I posted about it to our Asian network and our women’s network. I posted about it on our neighborhood Facebook page. It was not just the Asian community specifically. My non-Asian friends might know somebody. I’m trying to get the word out there that this was a surprise.

The more I looked into it, the more I realized there are so many people like me who get diagnosed at a late stage because they had no idea. I slowly started putting myself out there. I joined that Facebook group to hopefully have that support system. Now, I feel better, but I’m also reaching out to as many places as possible. Over the course of a few months, I had 4 or 5 people say they had a cough or knew someone who had a cough, and someone else was diagnosed. If you have a cough, go and make that appointment.

I’m so grateful for my support system

If there’s one thing my friends know about me, it’s that I’m not shy about asking for help. My best friend Jenny created a Facebook group for me so we could keep friends and family updated in terms of my appointments, test results, etc. “I’ve got an appointment on this day. Who can take me?” “I’m coming back from chemo. Who wants to bring me food?” I’ve had no shortage of help in that regard. It was one of the greatest gifts I had during that time.

Before I started treatment, my sister took me on a vacation because I needed it. But while I was gone, one of my best friends got an army together to help clean my house. I had previously told her, “Oh, man. My parents are coming in with a one-way ticket. The one thing I’m not looking forward to is cleaning the guest room, organizing it, and organizing the garage.” I, like many people, use the guest room as a storage space. She jumped on it and said, “Oh, absolutely, I will do that for you.”

She did it while I was gone and not only that, she enlisted the help of so many other friends and they did the entire house. When I came back, I thought she was only doing the two spaces. A big group of friends, my partner, my ex-husband, and the kids all contributed to this huge gift, which she still claims is not that big of a deal. It’s a big deal to me.

What I want others to know

My oncologist told me at my first appointment that stage 4, especially with EGFR-positive lung cancer, is not an absolute death sentence. She told me repeatedly that it is incurable, but it is treatable. I do feel like I’m living proof of that. I did not expect to be in such a good place in such a short time. I thought I would still be struggling with this diagnosis, even with my treatments. I was diagnosed in September and here we are, less than a year later, and I’m basically in remission.

It’s a tough pill to swallow, but there’s hope. I was also told repeatedly that lung cancer research is always evolving. It’s a great time right now. We just need to make it to the next breakthrough. Even the drug that I’m on now didn’t exist years ago. Keep making it to the next one.

As cheesy as it sounds, try to stay positive because that mindset is everything. Could we lie in bed and cry, and feel sorry for ourselves? Absolutely. But that doesn’t help the body or the mind. Try to stay positive, enjoy the life we have now, and know that there’s still hope for a life post-diagnosis.

My life expectancy is much shorter. I thought I was only in my midlife at this point. I’m turning 47 soon. I envisioned life until I was 80-something. It undoubtedly will be cut short, but that’s okay because when I think about perspective, hopefully I can see my kids into adulthood, which not everybody can. I can enjoy the life that I have now as much as possible.

Asking for help is not a weakness. People want to do things on their own. They think they can manage or don’t want to bother family and friends. They don’t want to bother people by asking for help. What I’ve learned is your people, your tribe, want to help you. They want to be there for you in times of crisis. Why else would they be your friends? Don’t be afraid to ask for help and support.


Emily N. stage 4 EGFR+ lung cancer
Thank you for sharing your story, Emily!

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Categories
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How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer

How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer

When Jackson was diagnosed with stage 4 colon cancer with BRAF mutation at 27 years old, life flipped upside down in ways he never saw coming. A former college athlete, outdoorsman, Brazilian jiu-jitsu practitioner, and self-proclaimed extrovert, Jackson was the last person anyone expected to face a stage 4 cancer diagnosis. But looking back, the signs were there. He just didn’t realize how serious they were.

Interviewed by: Carly Knowlton
Edited by: Katrina Villareal

Jackson had been experiencing stomach issues and hemorrhoids for years, so even when he noticed thinning stool and blood, he brushed it off. That changed quickly when severe stomach pain and projectile vomiting landed him in the emergency room. Scans revealed a tumor in his colon and more than 40 tumors in his liver. Later, genetic testing confirmed that he had a rare BRAF mutation, present in only about 8% of colorectal cancer patients.

Jackson L. stage 4 colon cancer with BRAF mutation

Understandably, the news hit hard. Jackson recalls the mental toll in those first few weeks, including the panic attacks, the anxiety, and the numbness. But what changed everything was a spiritual experience after reading Matthew 6:34 with his wife during a moment of deep fear and uncertainty. He describes feeling what he could only call a divine embrace, a peace that replaced panic, and a clarity that gave him purpose.

That spiritual moment became a turning point. Jackson began embracing each day without obsessing over the future. His mental health improved, his faith deepened, and his perspective on life transformed. He’s started a weekly Bible study, watched close friends get baptized, and even launched The 3929 Foundation to raise awareness, fund research, and provide financial assistance for those impacted by cancer.

While stage 4 colon cancer with BRAF mutation is a daunting diagnosis, Jackson hasn’t let it define him. He continues to work full-time, train, fish, and golf. He’s even recovered from colostomy reversal surgery and is eyeing a return to jiu-jitsu. Although he’s undergone intensive chemotherapy and faces ongoing tumors, including recent ones found on his peritoneal wall, he remains hopeful. His oncologists are amazed at his positive response to treatment, with nearly 90% of liver tumors now undetectable.

Through it all, Jackson advocates for others to listen to their bodies, get multiple medical opinions, and not hesitate to push for testing. He credits his wife, family, and faith for keeping him grounded. He’s not just surviving. He’s living fully, with a mission to educate, uplift, and inspire.

Watch Jackson’s video or read the transcript of his interview to find out more about his story:

  • Why Jackson says being diagnosed with stage 4 colon cancer with BRAF mutation may have been the wake-up call he didn’t know he needed
  • The emotional moment at his kitchen table that reshaped his entire outlook on life
  • How his wife, family, and friends became his loudest advocates, and why that made all the difference
  • The surprising reason he’s grateful to be the one facing cancer, not someone he loves
  • What changed after Jackson focused on today instead of fearing tomorrow, including the Bible verse that grounded him

  • Name: Jackson L.
  • Age at Diagnosis:
    • 27
  • Diagnosis:
    • Colon Cancer
  • Staging:
    • Stage 4
  • Mutation:
    • BRAF
  • Symptoms:
    • Severe stomach pain
    • Fatigue
    • Lack of motivation
    • Anemia
    • Blood in stool
    • Thinning stool
  • Treatments:
    • Surgeries: emergency bowel obstruction surgery with temporary colostomy (to discuss the possibility of HIPEC in 2026)
    • Chemotherapy
    • Immunotherapy
Jackson L. stage 4 colon cancer with BRAF mutation
Jackson L. stage 4 colon cancer with BRAF mutation
Jackson L. stage 4 colon cancer with BRAF mutation
Jackson L. stage 4 colon cancer with BRAF mutation
Jackson L. stage 4 colon cancer with BRAF mutation
Jackson L. stage 4 colon cancer with BRAF mutation
Jackson L. stage 4 colon cancer with BRAF mutation

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

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



Hi, I’m Jackson

I’m from Kansas City. I got diagnosed on January 11, 2025, at the age of 27.

I’m a big outdoors person, so I do a lot of hunting, fishing, and farm work at my farm. I love spending time with my wife. I’m also a purple belt and trained in Brazilian jiu-jitsu, so that’s something that I’m very passionate about as well. I love spending time with my family and our three animals.

My friends would describe me as very outgoing, talkative, and energetic. Hopefully, they’d say I’m selfless. I like to do things for other people.

When I first knew something was wrong

I ignored a lot of them as they came through. I’ve always had stomach issues for a very long time, all the way back to high school and through college. I was always told that it was acid reflux or GERD (gastroesophageal reflux disease), or that I’ve got IBS (irritable bowel syndrome) or something like that.

Over the course of 2024, I started to see my stool thinning and had blood in it, but I didn’t realize it at the time. I’ve always dealt with hemorrhoids for a long time, so I thought it was just that.

The crazy thing is that my sister is an oncology nurse, so I would talk to her about it, ask her, and send her pictures to know if that was okay. She didn’t think anything of it either because I was healthy, a college athlete, and ate right. We thought it was something with my stomach.

Then I started feeling very fatigued and lethargic throughout the year. I didn’t feel motivated to go to the gym when I used to go every single morning and train in jiu-jitsu at night. That started fading away a little bit.

I would say that would probably be the anemia, which I didn’t realize at the time. I was very pale and even when I would go to the lake every week with my parents and out in the sun, I still was not getting a tan or any color. When I had to go to the hospital, I was starting to get tired all the time and grumpy. I was starting to notice the blood in my stool and that’s when I started freaking out a little bit.

At about that time, within a week, I was in the hospital from extreme stomach pain and I was projectile vomiting. They told me I needed to get a scan and go to the ER, and that’s when they told me they saw what they thought was a tumor. I officially got diagnosed the day after that, when I got transferred to the University of Kansas Hospital.

We thought it was appendicitis or some infection. Never in a million years would I have thought it was stage 4 colon cancer. What was wild is that he walked out and said, “There’s a big tumor in your colon, and we found spots all over your liver.” When I officially got diagnosed at KU, they told me that I had stage 4 colon cancer. I had a complete bowel blockage, so I couldn’t go to the bathroom and had to get emergency surgery. They stopped counting after finding 40 tumors on my liver.

I wanted a second opinion

In March 2025, I got a second opinion at MD Anderson. I also have a rare mutation, the BRAF mutation, which is only in about 8% of colon cancer patients. I asked my oncologist and he said, “We’ll never be able to tell you how long you’ve had this or when you got it.” The interesting thing is, when I went to MD Anderson, I asked the oncologist there, and he and his team said that they would be shocked if I had it longer than a year.

They told me that in their opinion, they thought that it turned on and spread like wildfire within a year, which honestly would make sense to me because I started getting those symptoms, the fatigue and the actual blood in stool, within that year, so it would make sense to me that I’ve maybe only had it a year. But I thought that it couldn’t be out of the realm of possibility, with all the stomach issues I’ve had, that maybe I’ve had it for five to 10 years and then it slowly grew.

Education is probably one of the most important things. I feel like it’s one of my callings and the reason I’m going through this is to help bring awareness and raise awareness about the signs and symptoms of colon cancer. One of the most rewarding things that has happened is that since I got diagnosed was I probably have had over 50 people who I either know or who I have never met in my life from across the country reach out to me and told me that because of my story and everything that I’ve shared, they’ve gotten checked out and have gotten colonoscopies or gotten them scheduled or gotten tests.

There was a kid a few years younger than me who I knew from high school, and he messaged me and said, “I know you don’t know me too well. I was younger than you on the baseball team, but because of your story, I was able to get a colonoscopy set up. I’ve had stomach issues forever. Luckily, nothing came back from it.” I’ve had dozens and dozens of people tell me that and share that with me, which is literally the most important thing to me. That’s why I started this foundation, partially to help people with financial assistance who are going through cancer and everything, but the main reason is to help raise awareness and provide resources for people to get education about it because it’s not talked about enough.

Now it’s going to be the number one cause of death and cancer in people under 50 in men and women, behind breast cancer, and it’s never talked about. You see more younger people getting diagnosed with it and at a late stage, and nobody can tell us why. That’s the biggest thing for me. Part of our mission is to help get people connected with educational resources and actual care teams willing and able to help provide that.

When I got the news “you have cancer”

It still feels like it was yesterday. I was sitting in the emergency room with a screen in front of me and it was in the middle of one of the biggest snowstorms we’ve had in Kansas. My wife was at home. My parents’ house was not too far from the hospital I was at, so they drove to meet me there. When he told me, I sat there and didn’t know what to say or how to respond, to be honest. I sat with a blank stare on my face.

Then I called my wife and she started freaking out. She drove to the hospital and stayed the night before I got transferred. I felt super sick to my stomach. I didn’t know how to process it. My mom had breast cancer when I was very young. She’s 17 years clear, so she’s been doing great, but she felt just as sick, knowing that she has to watch me go through this now after she had to.

At that time, I was numb. Then, when I got the surgery and was recovering, I was trying to be optimistic and not be mad at the world. But then I started having a lot of panic attacks and anxiety attacks. Through my faith and the people I have, I’ve been able to overcome that. I’m probably too optimistic at this point, when I was told I got two years to live. A lot of people tell me they would have never guessed, with my energy levels and how I act and respond, that I was diagnosed with stage 4 colon cancer. But that’s a compliment because that’s how I want to live. I know people who are in the situation that are mad at the world and pessimistic and whatnot, and that’s not how I want to live.

My sister was working on the oncology floor of the University of Kansas Hospital. She worked there for three years. At the time, she was working at Mass General Hospital because her boyfriend and my future brother-in-law was a resident doctor at Mass General. Now they’re in New York City and both working at Mount Sinai. She’s working as a clinical research coordinator in oncology, and he’s a cardiology fellow. At the time, she was not, but a lot of her friends and connections were still there, and I’m very lucky because of that.

Her boyfriend had a friend who was working in the emergency room that day and was able to pull some strings and usher me back pretty quickly. By the time I got back, I had two doctors waiting for me, which never happens. They did some tests and were talking about doing scans. They immediately took me up to that cancer unit, and I was treated with the best care I could have ever asked for.

I’m still close with all those nurses up there. I keep in touch with them all the time. I just had my colostomy reversal surgery two weeks ago and I was getting wheeled up there to hang out with them and talk to them because I care about them deeply and they are amazing people. They are the best nurses in the world, in my opinion. They’re incredible.

I first went to urgent care and by the time I went, I was projectile vomiting and they said, “You need to go to the hospital,” so I had to drive myself while throwing up to the closest hospital and went to the emergency room. They did some blood tests and took me back for a CT scan. A couple of hours later, they told me they found what they believed were tumors but didn’t give me an official diagnosis.

I stayed overnight at that hospital. Their oncologist came down and told me that she believed that I had stage 4 colon cancer. At that point, there’s no other hospital. There’s only one option for me and that’s going to KU. They’re the best around here for that and one of the best in the country.

I had surgery right after I was diagnosed

My sister made calls and I had to discharge myself because they wouldn’t approve a transfer. My mom had to drive me over to KU and into the emergency room. I got admitted through there. That would have been on the 10th and the very next day, on the 11th, they officially diagnosed me. On Sunday, the 12th, that’s when they did surgery to remove the tumors and put in a temporary colostomy bag.

The plan moving forward

Recovery was not fun. On top of that, learning how to deal with a colostomy bag was a big challenge. Luckily, I have a brother who lives here and another brother who lives in Scottsdale, so he flew into town. My sister at Mass General, they gave her all the time off and said, “Go be with your brother,” so she flew in. She was like my second nurse. Her boyfriend was with me too. I was recovering for about a week and they said, “We typically don’t do this, but you need to start on chemotherapy as soon as possible.”

I started chemo three weeks post-op and finished my first round on my 28th birthday. I got discharged from the hospital a week after surgery. I believe a week or two after that was when I met my original oncologist. I’ve since switched to a new oncologist. I was thinking that they’ll say, “We’ve got a great chemo regimen. We’ll be able to get you past this. You’ll be good.” My oncologist looked me in the eye and told me that he doesn’t think I’ll live past two years. He straight up said, “You’d be lucky to live past two years with your mutation and how advanced your disease is.” Nope, I’m not accepting that.

I was with that oncologist for a little bit. I got a second opinion at MD Anderson. Unfortunately, they kind of told me the same thing. The only option for me was a BRAF-specific regimen and your only hope at living past three years. That hurt a little bit, as well as all the negativity around me. Everybody was telling me that I’ll be dead in two years and if I can live past that, I’ll be lucky.

But with this chemo regimen, doing a holistic approach of changing the way I eat, what I’m putting into my body, other supplements, and different types of alternative medicine, my oncologist estimated that about 90% of the disease on my liver is gone. With having more than 40 tumors originally, he’s mind-blown that I’ve had this good of a response to all the treatments and everything I’m doing so far.

Unfortunately, after the colostomy reversal, they found more tumors in my peritoneal wall. The response that I’ve been having to treatments and everything I’m doing has been very good so far. I continue to be optimistic about what I’m doing and think that eventually, I can get to no evidence of disease, against all odds that I’ve been given.

I changed my diet

When I talk to my colorectal surgeon and my new oncologist at KU, who’s incredible, I’ve asked multiple times, “Why are we getting this? Why are so many people getting colon cancer so advanced at such a young age?” He said, “We don’t know yet, but in my opinion and through a lot of research, it has to be environmentally-related to either the stuff that’s in our food supply,” like the chemicals that are getting sprayed, microplastics, all the additives and preservatives, or at least they think they could be a big factor into why so many young people are getting colon cancer, and it makes a lot of sense.

Ever since we’ve been kids, everything we’ve been eating has been pumped full of crap. They used to, at fast food restaurants, cook everything in beef tallow and now it’s all these different oils and other crap. The amount of stuff that is in our food is killing us and is being so harmful. My wife and I, as soon as I got home from the hospital, threw everything out of our pantry. We only order from Thrive Marketplace. We go to Sprouts and Whole Foods. We try to do everything organic. We started a garden at our house. Our neighbors have chickens and they give us their eggs. We try to do our best to know where our food is coming from and not get stuff that’s overly processed or has a bunch of stuff added to it. We’ve changed the way we eat for the most part. My wife falls off a little bit sometimes as she can’t help herself, but I’m very conscious now about what I put into my body.

I try to avoid a lot of gluten to reduce inflammation to fight against cancer. I take a lot of supplements, like B vitamin complex, vitamin C, vitamin E, milk thistle, turmeric, probiotics, and others. I’m trying to help my body fight this and I think a lot of it is contributing, outside of the chemotherapy and also helping me feel better from my chemo.

I urge everybody, whether you’re going through cancer or not, to change how you eat. Get all that crap out and fix it. That’s another goal of mine, too, which is to try to help people eat a lot better as well.

Getting multiple opinions is by far the best thing you can do. We’re still looking at options. We’ve got a friend who gets treated at Duke, and they do a lot of things with a HAI (hepatic artery infusion) pump for the liver. One of the best surgeons in the country is either at Mount Sinai or MSK who does HIPEC. In City of Hope and the Williams Cancer Institute in California, there are a bunch of places we look at to get opinions from because everybody has a different approach to how they do it, whether it’s traditional chemotherapy, repurposed medicine, alternative medicine, or whatever it is.

I’m open to anything to save my life and to get this out of my body. I’m not going to settle for what one person thinks. What’s great is that my new oncologist says, “I want you to get opinions from other places. If you need help getting those set up, let me know.” He’s not the type of person who says whatever he says goes. He wants me to get as many opinions as possible. If we can do it and they want to suggest something else, he says, “I’ll communicate with them and if we can do it here, I would love to. If not, get it done there.”

I’m glad I made the switch to him. He’s incredible. A lot of people don’t want to step on their doctor’s toes when in reality, it does not matter. It’s your health and your life. Do what you need to do. Do not settle for one person’s opinion. You have to see multiple people and get opinions from as many people as possible and find out different approaches as possible to see what may work and what may not. There are so many different treatment options outside of what your local or primary oncologist has or says.

My wife is the best advocate for that because sometimes I’m too scared because I don’t want to be mean or say something that I think is rude, my wife will say, “Why are you doing that? We should go look at that.” I tell her, “Thank you. I didn’t want to say it, so thank you.” She’s incredible at it. She’s not afraid to say what’s on her mind and to make sure that I’m getting the care I need.

I completed chemotherapy before my colostomy reversal. I was supposed to have another round, but one of the side effects of the regimen for my drug is a very bad skin rash on pretty much my entire body. It looks like I have painful acne, which it is. It has gotten so bad to the point where they couldn’t give me chemo because I had to see a dermatologist. Hopefully, I’ll get back on it, which will be my 16th round of chemo. For now, we keep doing it until it stops working. It depends on how long it can be effective for and then, eventually, we’ll look at other treatments. But so far, this chemo and everything I’ve been doing have been working out pretty well, so we’re not going to change course until it’s time.

With my chemo regimen, I was on a drug, oxaliplatin, Vectibix (panitumumab), and 5-FU, and then I take oral chemotherapy, so four different chemos. I take Braftovi (encorafenib) every single day, four pills of those. I am now off of oxaliplatin because it’s so toxic and has given me almost permanent neuropathy in my hands and feet, so I had to stop that after 10 rounds because it got so bad. Now I just do oral chemo every single day. Every 14 days, I go in for my immunotherapy infusion, which I get through my port, and then I get my 5-FU pump that I’ll have for 46 hours. I’ll usually go in every other Tuesday, get chemo, and then have my pump until Thursday, and then get unhooked on Thursday.

Every day, I take four pills in the morning for my oral chemo. Every 14 days, I was getting three hours’ worth of infusions. Now it’s just one and a 46-hour pump.

I take like 25 pills a day, which is wild. It looks like I have an 80-year-old man living with me with my weekly pills on the counter.

At first, I didn’t have time to think about it because I had so much going on with recovery and trying to figure out if we could find out about this disease and how to treat it, types of treatments, where to go, what to look for, etc.

How my diagnosis has impacted me mentally

After I got diagnosed, the first month or two were very rough on me mentally. But since then, I’ve been doing well, mentally and physically.

The chemo is not as harsh on me anymore now that I don’t take oxaliplatin, which is good. I go to work in the office every single day. My company has been great about giving me time off whenever I need it, but I’ve worked full-time through everything. I’ve been blessed with the company that I work for. They give me a lot of grace and a lot of opportunity to go to my appointments and chemotherapy, and to take days off if I’m not feeling well. Most times, I’m in the chemotherapy chair working, in meetings and stuff like that. I’ve never stopped working. I’ve been working the entire time, which has helped me a lot mentally to try to stay as normal as possible.

The colostomy bag reversal has helped me a lot in terms of my quality of life moving forward, which is great. Outside of neuropathy, I work out and I’m able to still hunt and do the things that I love to do. Without the bag now, I’m optimistic that I can get back to Brazilian jiu-jitsu training, which is one of my favorite things to do in life and helps me a lot mentally. It’s a big release for me. I’ve been able to golf through all of it. It hasn’t been too much of a difficult change besides what I’m allowed to eat or not eat. I don’t drink alcohol anymore, so that’s a big change. I feel a lot better not drinking, so that’s a good change for me.

The worst is sitting at home. The last two weeks, while recovering from surgery, I would ask my wife to go drive me around the neighborhood because I needed to get out of the house. I hate sitting at home and doing nothing for all hours of the day. She, on the other hand, can do that every single day. I can’t. I have to be up and talking to people, going and doing stuff. I still have staples in me, but I’ve been going to work, seeing people, and going to meetings. I try to live as normally as I can without any change as much as possible.

I had my colostomy bag removed

The bag reversal went well. Funny story, I was without pain meds after surgery for about 18 hours because they misplaced an epidural in me, so that wasn’t fun. But other than that, the recovery has been good so far. I’m up and moving around. I’m getting the staples out and I have a three-week follow-up, so it’s been great. I’m very blessed to be in this position to at least have this surgery.

All my cancer markers are still looking good, even with a break from chemo and having the surgery. I’m in a pretty good spot right now. I’m excited to get back on chemo and keep hacking away at the tumors. But as far as the reversal and everything, it’s gone very well so far.

They weren’t able to see the tumors and the peritoneal wall is very hard to see on scans. They could see something before, but we couldn’t tell if they were tumors or if it was scar tissue from my colostomy bag and the initial surgery. Unfortunately, when my doctor opened me up, he found four tumors right there, so he ended up taking four of them out, biopsying a couple, and then sending some off. He said those were definitely cancer. There could be more or there may not be. We don’t know how many are left in there.

The goal is to see on some PET scans coming up in September what we can try to find and the plan of attack is to continue what I’ve been doing as far as chemo and then look at HIPEC surgery potentially in 2026 to try to get all those out if we possibly can and continue to target the liver. My oncologist believed that with my scans from July that about 90% of my disease on my liver is either gone or dormant right now. My latest Signatera test came back as negative, so that’s good, meaning they’re stable and not active and spreading, so I’m very lucky for that.

The hardest part of my journey

The hardest moment was definitely the tail end of my hospital stay and then the first week at home, which is when it started hitting me that my life was changed forever. I was in a bad headspace and having very bad anxiety attacks and panic attacks. I was struggling.

I had a wild faith moment that changed everything for me following that, which is when everything changed for me and I was able to get rid of all of that anxiety, panic, and worry. Ever since then, I’ve been able to lean into that, my friendships, my family, and my wife. I was able to stay optimistic and faithful and keep moving forward and continue to focus on every single day. I used to get anxious thinking about the future. What is two months going to look like from now? What is a year from now going to look like? That gave me a lot of anxiety and worry. I now focus on every single day and not try to look too far ahead. I just enjoy what I have in front of me and not worry about what tomorrow is going to look like, so that’s helped me a lot.

I grew in my faith

I had a couple of friends who are college teammates of mine who flew into town after I got diagnosed. One of my friends and his wife brought me a new Bible and a new daily devotional, which was perfect. I have been asking and trying to get myself to hop back into my faith for a very long time. I was not happy with the person I was. It’s not like anything was super bad. I was empty and unfulfilled. I wasn’t happy with who I was and what I did. I used that as a good opportunity.

One day, I had a very bad panic attack and anxiety attack. The next morning, I sat down at the kitchen table with my wife and we opened up the devotional, and one of the verses in the devotional was Matthew 6:34. It was Jesus talking about anxiety and worry. He talked about why worry about tomorrow when tomorrow’s going to have its own troubles and today’s trouble is enough for today, so focus on today

I don’t know how to describe it other than this. In that exact moment, sitting with my wife at the table, I quite literally felt like a massive hug wrapped around me. It was crazy. I’ve never experienced anything like this in my life. The best way I can describe it is like a lake being perfectly flat and like glass. In that moment, I literally felt everything, all of the anxiety and worry, get pushed out of me. I was shaking and crying. It was the most overwhelming experience of my life.

I texted my friends. I looked at my wife Hannah and I said, “This is the craziest feeling ever.” At that moment, I have never in my life been more sure that God and Jesus are real, and that I’m going through this for a reason. The more I continued to think about it, I kept praying every single night, saying, “God, please do something in my life to bring me closer to you. Change my life and change my faith,” and then all of this happened.

I’m almost grateful that I got diagnosed with this because without this, none of this would have ever happened in my life. I feel like there are two reasons I’m going through this. One is to talk about my faith and the gospel. With that, I’ve started a weekly Bible study where I have six of my friends and two of them got baptized this year. That is the greatest thing for me. I was on a radio show talking about my diagnosis and I was able to share this story. That’s the first reason why I’m going through this is to grow in faith.

How I’m supporting others with cancer

The second thing is to be able to talk about colon cancer and raise awareness about it and legitimately try to save lives. We started The 3929 Foundation. The number 39 is for a family friend of mine, his name is Matt Fitzmorris. His dad, Al Fitzmorris, played for the Kansas City Royals and passed away from cancer in December, a few weeks before I got diagnosed. The number 29 was my number growing up throughout my entire life, so we decided to start this foundation.

We filed for our nonprofit 501(c)(3), so we’re waiting for that, but our goal for the foundation is to be able to help people and their families who are going through cancer by helping them financially. I know from experience. My chemo treatments every other week are $81,000. That’s how much it costs for my chemo every 14 days. $81,000, twice a month. Luckily, I have phenomenal insurance where it’s all after my deductible was hit in January, so it’s 100% paid for, so I’m very lucky. Otherwise, I’d probably have millions of dollars of medical debt.

We know how difficult it can be to make a payment on your mortgage or buy something for the house when you’ve got medical bills to pay, so that’s our priority. People can go to our website to apply for financial assistance. We’re also working on surprise donations to people at the KU Cancer Center, where I get treatments, to help them out.

We want to provide education and resources specifically about colon cancer to raise awareness. We formed the foundation in March and in May, we had a pickleball tournament and raised $15,000, which is super cool. We’ve got another event that’s more my style, which is trapshooting, that we’re doing on October 5th to raise money. We’re trying to do multiple events throughout the year. We’re starting to sell our merchandise on our website. We’re getting that all up and running.

I feel lucky and grateful that I’m going through this and able to help people. It’s crazy to me because I get told all the time by my friends and family, “I wish you didn’t have to go through this. I wish I were the one who got this and not you.” Absolutely not. I am grateful and lucky that I’m the one going through this because I wouldn’t be able to stand watching somebody I care about go through this. Watching somebody I cared about going through that would kill me, so I’m very glad that I’m the one who has it, because I know that I can deal with it and I’m strong enough to withstand it. I tell them, “Don’t ever say that. I’m glad I’m the one going through it and nobody else I know.”

I hope that I can help as many people as possible. I don’t know how long I will be here for. Hopefully, for a very long time. I hope that, however long I am here, I can help and impact as many people as I possibly can, so that’s what I’m here to do.

I have a new outlook on life

My perspective on everything in life has changed. It’s very wild. In a weird way, I needed this. I tell people all the time. I feel the best, but not necessarily physically. Sometimes I do, but mentally and spiritually, living with all these tumors and stage 4 cancer and all this going on, this is the best I’ve ever felt in my life. I genuinely mean that. It’s crazy for me to say that, but it’s true. I am so grateful that I’ve gotten this opportunity. Yes, it absolutely sucks. There’s a lot of stuff I can’t do anymore. Some days, chemo makes me want to feel like death might not be so bad, but I wouldn’t change anything about this.

What I want others to know

I was scared to go to the doctor, not because I was actually scared, but because I hated it. I thought it was pointless. Listen to your body. If you notice anything, pay attention to your body and to anything going on. If anything is different, go get checked out and see somebody. I would always push it off, no matter what it was, thinking that I didn’t need to go to the doctor and that it’d go away.

I often think about 2024. What if in July, when I started, I paid attention and cared about the things going on? If I noticed I was starting to feel fatigued and my stool was thinning, changing, and looking different, if I got checked out and they found something, maybe I wouldn’t have had a complete blockage. Maybe I wouldn’t have had 40 tumors on my liver. Maybe it would have been two and it would have been a lot different story. Maybe I would have been stage 2 or 3 instead of stage 4.

Listen to your body. If you feel like anything is off or wrong, don’t neglect it. Get checked because I was the exact opposite. Obviously, I regret it a little bit by not having myself checked earlier. Be aware of that. Take your body and your health seriously. Change the way you eat. Be conscious of what you’re putting into your body and how you’re treating it. Exercise as much as possible. Try to make a change in your life in a good way.


Jackson L. stage 4 colon cancer with BRAF mutation
Thank you for sharing your story, Jackson!

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Categories
ALK Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments Tyrosine kinase inhibitor (TKI)

Shauna’s Story of a Cold, a Cough, an X-ray, and Stage 4 ALK+ Lung Cancer

Everything was Fine Until It Wasn’t: Shauna’s Story of a Cold, a Cough, an X-ray and Stage 4 ALK+ Lung Cancer

Shauna was living her healthiest, most active life at 51 when everything shifted. After what seemed like a simple cold in the fall of 2018, she noticed a cough that wouldn’t go away. A quick trip to urgent care during her lunch break led to an unexpected X-ray, and within days, she learned there was a mass in her lung. Not long after, a biopsy confirmed the diagnosis: stage 4 ALK-positive lung cancer.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Naturally, the news was shocking. Shauna had no family history, had never smoked, and had just sent her kids off to start their own lives. She and her husband were busy, working full-time, and looking forward to the next chapter. Instead, she had to face something that seemed impossible.

Shauna D. stage 4 ALK+ lung cancer

From the start, Shauna leaned into both her medical team and the online ALK-positive lung cancer community. She discovered support groups on Facebook, where people openly shared knowledge and resources. That encouragement helped her seek second opinions from specialists in Nashville and Boston, giving her confidence in her care. Although she stayed with her local oncologist for several years for convenience, she eventually transitioned to a larger hospital in Indianapolis to explore clinical trials and gain access to more advanced care.

Shauna’s treatment has centered on targeted therapies. Her first tyrosine kinase inhibitor (TKI) kept her stable for about five years, even though she had to adjust her dosage due to side effects like bradycardia and pneumonitis. She also underwent radiation for specific spots of growth along the way. (Editor’s Note: A tyrosine kinase inhibitor is a type of targeted therapy used to treat cancer. Tyrosine kinases are enzymes that may be too active or found at high levels in some types of cancer cells, and blocking them may help keep cancer cells from growing.)

By 2024, when new nodules appeared, she switched to a second TKI. Thankfully, her scans are stable again, and she feels better on this newer medication, with fewer side effects and more energy.

Through it all, Shauna has prioritized mindset and lifestyle. She focuses on staying as healthy as possible, embracing a mostly vegan diet, exercising, and paying attention to how her body responds. Though stage 4 ALK-positive lung cancer is treatable but not curable, she chooses not to live in fear. Instead, she invests in her relationships, grateful for every moment she’s been able to spend with them.

She’s also thinking ahead about clinical trials, recognizing how important they are for advancing treatment and offering patients more time. Her biggest challenge is knowing her time may be cut short, but she finds peace in her faith and purpose in encouraging others. As she puts it, life is short for all of us. She reminds people to live fully, not to waste days in worry, and to be kind.

Shauna’s story highlights the importance of support, second opinions, staying proactive, and holding onto hope while navigating life with stage 4 ALK-positive lung cancer.

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

  • How a lingering cough led to a life-changing diagnosis
  • Why she turned to online communities for knowledge and support
  • The role her husband and family play in her care and outlook
  • What clinical trials could mean for her and others with ALK-positive lung cancer
  • Her message about choosing hope and living fully each day

Scroll down to read the transcript of Shauna’s interview.


  • Name: Shauna D.
  • Age of Diagnosis:
    • 51
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • ALK
  • Symptom:
    • Persistent dry cough following a cold
  • Treatments:
    • Targeted therapy: tyrosine kinase inhibitors (TKI)
    • Radiation therapy
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer

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

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



Hi, I’m Shauna

My name is Shauna. I live in Indiana. I was diagnosed with stage 4 lung cancer in 2018.

My family and friends would describe me as dependable and fun-loving.

When I first noticed something was wrong

Early in the fall of 2018, I had an illness, a normal cold, but my cough stayed after a couple of months. It didn’t go away. During lunch break at work, I went to an urgent care clinic where they did an X-ray and found a mass in my right lung. The person who did my X-ray talked to me about seeing the mass and told me I would need to see a pulmonologist and get scheduled.

As you can imagine, I was shocked. I scheduled with a pulmonologist and he scheduled a biopsy. I had a needle biopsy and all the scans that came after, and the biopsy came back positive for cancer.

The moment everything changed

I had just turned 51 that October and I was diagnosed in November. I was in the best shape of my life. My two kids had just flown the nest, and my husband and I were still working full-time. I was shocked. I had been eating well and exercising. I don’t have a family history of lung cancer. I have never smoked. It came out of nowhere. It was upsetting, for sure.

I searched for a different opinion

I live in a more rural area in Indiana, so we’re not close to any big hospitals. I started with a pulmonologist who was local and very good, and he was able to do what I needed done and diagnosed me. Then I found an oncologist who was local as well.

I came across a Facebook group for ALK-positive lung cancer, which helped a lot. It’s very educational, informative, and supportive. The people in that group have a lot of knowledge and that steered me to think of getting a second opinion, so I did. I went to a specialist in Nashville, Tennessee, and at Mass General in Boston, who is an ALK-positive lung cancer specialist.

I stayed with my general oncologist for about five years because I knew I was getting the standard of care. The treatment would be the same as I would get anywhere, and it was convenient being close to home. But since then, I have switched my care to a bigger hospital in Indianapolis because things are getting a little more complicated and I know I’ll have better access to clinical trials. It’s just a better facility.

It was pretty easy for them to tell, even with just the X-ray. They could see that it was in both lungs. I have innumerable little nodules in both lungs and one primary tumor in my right lung, so that made it stage 4.

How I learned about my biomarker

One of my second opinion doctors, who I see now at the Indianapolis hospital, is the one who submitted my sample to a company for biomarker testing. Everyone on my team knew what direction to go. I didn’t have that problem at all. Right off the bat, I’d say within a few weeks, I came back as ALK positive. I knew that there was a mutation and the thoracic oncologist told me that I likely had a mutation because of my age and some other things.

My treatment plan

Immediately, they started me on my first tyrosine kinase inhibitor (TKI) and at the full dose. I had some of the more serious side effects right away, like bradycardia and pneumonitis. My oncologist would lower the dose each time I experience an event like that.

At the time, that was the best and newest TKI available. We decided to stay the course and see because it had been proven with others that you could take half the dose and have it still be effective. In my case, that’s what we found. I was able to take half the dose and all the side effects went away. I was stable. I was never no evidence of disease. It probably shrank my original tumor about 40% and I’ve been stable since that time.

I was also able to scale my dose back up. By the last couple of years on that TKI, I was taking the full dose again with none of the same serious problems. I was on that first TKI for about five years until I started having some new spots in my left lung.

Then I had radiation. I don’t know what year that was exactly. They were about a year apart from each other. The radiation was targeting a certain spot where they thought they saw growth. Then I was stable and continued to stay on my first TKI.

In mid-2024, we started noticing some more growth in different spots. We were beginning to realize we had probably run out of time on my first TKI and that maybe it was time to switch because there was a newer drug out by that time. Research is so important because if I didn’t make that jump, that would have been it.

I started on my second TKI in August 2024 and that’s what I’m on right now. I have had some questionable scans, but my last scan in Indianapolis read stable.

What life is like on a targeted therapy

I haven’t had a lot of problems with side effects on either drug. I know I had a couple of serious ones off the bat because I was probably taking too big a dose for my body to adjust to it, but then I was able to go back to the full dose.

With the first TKI, I had a lot of bloating, awful constipation, and some sensitivity, but the side effects are nothing compared to the drug working. To me, that’s the most important thing.

When I was out in the sun, I learned to wear sunscreen, a rash guard, and a hat. I got used to how long I could stay out in the sun without burning. I found something to use for the constipation.

The second TKI causes a little neuropathy and tingling in the hands. I live with it, but that went away somewhat. I don’t even notice it now. I have so much more energy on this TKI as well and not as much weight gain. I’m very happy with this, as long as it’s working.

I thought that I would throw everything at it and make sure my body was in optimal position to fight what may come. As we know, it’s terminal, so I’m trying to live as long as I can. I’ve always been pretty healthy. I always exercised and took care of myself, but I’ve taken it to a whole new level now. I’m mostly vegan and eat anything that’s anti-cancer and strengthens my immunity.

I’m considering clinical trials

I came back from a conference in San Diego, where they talked a lot about clinical trials. The ALK+ Summit was there. They have a yearly conference that’s so informative because they have amazing doctors and patients who talk.

Clinical trials are the only way these new drugs will ever come into play. They have to go through trials to be approved so that everyone can benefit. I’ve spoken to my oncologist and though it’s not something we’re necessarily looking for yet, it’s definitely on my mind.

What my biggest challenge has been

My future as a grandma is gone. I have seven grandchildren and I was able to see a lot of them be born since my diagnosis. I feel for the younger moms with kids at home. I’m thankful that I was able to raise my kids.

Cancer is so prevalent everywhere you look now, in younger and younger people, and all kinds of cancers. I can’t say I was necessarily that surprised. I was surprised at what type of cancer I ended up with, but it happens everywhere.

I would love to be on treatment indefinitely if it would last that long and if this could be treated like a chronic illness.

My message of hope

I have my faith. My hope is in my eternity. I realize that life is short. It’s short for all of us. It’s but a vapor. My life here on earth may be cut short, but I live each day to the fullest and try to be kind to everyone. I’m enjoying my family and friends, and I try to have a balance in life with this diagnosis.

I have my main people: my two daughters, my sister, my husband, and my parents. Those are the people whom I feel like I could go to right at the beginning and anytime I’ve needed them.

What I want others to know

Life is short. Take each day as a new chance. Don’t be scared. Don’t live your life in fear. It took me about two years before I was able to not worry anymore. I’m not going to worry about this one more day. I’m going to live like I have all the time in the world.


Shauna D. stage 4 ALK+ lung cancer
Thank you for sharing your story, Shauna!

Inspired by Shauna's story?

Share your story, too!


More ALK+ Lung Cancer Stories

Shauna D. stage 4 ALK+ lung cancer

Shauna D., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy
Allison Z. stage 4 ALK+ lung cancer

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Kathrin W. stage 4 ALK+ lung cancer

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



Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy
Stephanie W. feature profile

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



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

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



Symptom: Severe pain in her side

Treatments: Chemotherapy (targeted therapy), radiation

Categories
MPN Patient Stories Polycythemia Vera Treatments

30 Years Living with an MPN: Jeremy’s PV and Myelofibrosis Story

40 Years Living with an MPN: Jeremy’s PV and Myelofibrosis Story

Living with polycythemia vera (PV) has been a lifelong balancing act, and both Jeremy Smith and MPN expert, Dr. Angela Fleischman from the UC Irvine Chao Family Comprehensive Cancer Center bring wisdom, encouragement, and practical advice to the conversation.

Interviewed by: Taylor Scheib and Stephanie Chuang
Edited by: Katrina Villareal and Jeff Forslund

Jeremy has been living with an MPN for nearly four decades, initially being diagnosed with polycythemia vera (PV) that progressed to myelofibrosis in 2012, and he is refreshingly honest about the emotional and physical challenges he’s faced along the way. His diagnosis started with what felt like a panic attack, leading to an emergency room (ER) visit and eventually a bone marrow biopsy. Like many people, he found the process confusing and overwhelming.

Jeremy S. polycythemia vera

Today, Jeremy takes charge of his care. He calls his medical team his “board of advisors,” reminding other patients that they are the ones who ultimately make the decisions. He’s tried multiple treatments and is currently taking interferon alpha as part of a combination therapy, which works well for him despite not being a standard regimen. He stresses the value of second opinions, open communication with doctors, and writing down questions before appointments. Jeremy also highlights exercise as one of the most powerful tools he’s found for immune health and inflammation control. He even transitioned from mountain and road biking to riding a stationary bike in order to protect both his spleen and his ability to still ride.

Dr. Angela Fleischman, MD, PhD, a hematologist and passionate MPN researcher with the UC Irvine Chao Family Comprehensive Cancer Center, adds an equally empowering perspective. She focuses on patient-centered care, encouraging people with MPNs to understand their disease and actively participate in decisions. She believes that knowledge is a powerful tool and that patients should feel comfortable asking questions, seeking second opinions, and exploring clinical trials.

Together, Jeremy and Dr. Fleischman paint a hopeful picture. While polycythemia vera is complex and often unpredictable, staying engaged in care, building a team you trust, and prioritizing overall health can make a huge difference. Jeremy’s parting advice says it all: take notes, ask questions, connect with others, and embrace life one moment at a time.

Key Story Takeaways
  • Jeremy’s story: Living with polycythemia vera (PV) for nearly 40 years, Jeremy shares how his disease progressed to myelofibrosis (MF) and how he manages treatment, side effects, and mental health.
  • Treatment insights: He uses interferon alpha in combination with another drug (two separate medicines) while emphasizing second opinions, symptom tracking, and exercise to reduce inflammation.
  • Expert perspective: Dr. Angela G. Fleischman, MD, PhD of UC Irvine explains PV biology, the role of interferon alpha, and how patient-doctor partnerships and personalized care improve day-to-day living.
  • Empowerment message: Stay informed, build a trusted medical team, keep notes and questions ready, and live fully—sip life—despite PV or MF.

  • Name: Jeremy S.
  • Age at Diagnosis:
    • 33
  • Diagnoses:
    • Polycythemia Vera (PV) that progressed to Myelofibrosis (MF) in 2012
    • Chronic Lymphocytic Leukemia (CLL)
  • Treatment:
    • Interferon alpha in combination with another therapy
Jeremy S. polycythemia vera

PharmaEssentia

Thank you to PharmaEssentia for supporting our independent 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.



Never give up. There will be highs and lows, but you have to keep going and enjoy every moment. Sip life — embrace it and never give up.

Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Jeremy’s PV Story

Introducing Jeremy

My Polycythemia Vera and Myelofibrosis Patient Experience

Jeremy Smith: I was diagnosed with polycythemia vera in 1989, but they think I had it for five to eight years before that. September 2025 marks the beginning of my 37th year with polycythemia vera (PV). In 2012, [it progressed] to myelofibrosis (MF). I also have chronic lymphocytic leukemia (CLL).

Jeremy S. polycythemia vera
Jeremy S. polycythemia vera

How My Friends Would Describe Me

Jeremy: It depends on whom [you] ask. I would say determined. Crazy, maybe. Most people did not expect me to be around this long, including my doctors. [How] we see ourselves is often very different than how others see us and, of course, they bring their own baggage to their perspective. My best friend [is] my brother, who probably has the best understanding of me since we shared a room as kids. I would also say creative; I have done a lot of creative things in my life.

You have to look at the big picture… Every option should be considered.

Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

First Symptoms and PV Diagnosis

Jeremy: Like most patients, I was originally seen by a local hematologist and my primary care physician. My symptoms masqueraded as anxiety because my hemoglobin was so high. I had what I thought was a panic attack while driving home, [so I] called 911 and ended up in the emergency room. Ultimately, a bone marrow biopsy confirmed polycythemia vera. The process was confusing and emotionally overwhelming.

Jeremy S. polycythemia vera
Jeremy S. polycythemia vera

Navigating Treatment Decisions

Jeremy: You have to look at the big picture. Combo drugs, often referred to as cocktails, can be the most effective way forward for many patients. We do not know what drug will work best for each person until [they] try it. I am currently on interferon alpha and [another treatment] together, which has been very effective for me, even though it was not previously tested. Every option should be considered.

You must be your own advocate and write down your questions before you go to the doctor so that you’re well prepared.

Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Adapting to New Specialists and Building Trust

Jeremy: Losing a trusted doctor was devastating. Dr. Schreier was very old school, but Dr. David Iberri, who took my case at Stanford, was open, younger, and more willing to embrace new treatments. Building trust takes time, especially when your numbers fluctuate. I manage my care directly, just as I would a business, and have assembled a team of doctors who consult with each other on my medical plan.

Jeremy S. polycythemia vera
Jeremy S. polycythemia vera

Living Well with an MPN

Dealing with a Chronic Cancer and Aging

Jeremy: It has been a long journey. The last five to six years have been the hardest, as my body [has] begun to break down. The longer you live with a myeloproliferative neoplasm (MPN), the more your body gives in structurally.

Twenty years ago, we did not know the impact of anemia on myelofibrosis patients, but now we know cardiovascular issues are a major risk — and I have cardiovascular issues now. The disease is complicated, but one thing doctors do not discuss is how grueling the mental journey is. It is taxing. I spend more time with my doctors than with anyone else.

I have established what I call my board of advisors — my doctors. I do not treat them like doctors; they are advisors. I make all the decisions.

Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Building a Medical Team: The Board of Advisors Approach

Jeremy: Because the disease is so complicated and manifests in many ways, you need to be prepared. I have established what I call my board of advisors — my doctors. I do not treat them like doctors; they are advisors. I make all the decisions.

I have four hematologists and oncologists, plus a cardiologist and other specialists. They all work together and I have learned to manage the egos involved. Getting everyone on a call can be [challenging], but it works well.

Jeremy S. polycythemia vera
Jeremy S. polycythemia vera

The Importance of Exercise in Managing MPN

Jeremy: Exercise is a big part of my life. Back in 2000, I was riding 30–75 miles on a bike. Now, because my spleen makes all my red blood cells and my doctors are worried about damaging it, I can only ride a stationary bike.

Exercise is truly the only proven method for improving your immune system and reducing inflammation, which is key to slowing disease progression. In the late 80s, there was no data that exercise or diet would help PV, but now we know it improves fatigue and overall health.

Exercise is truly the only proven method for improving your immune system — and reducing inflammation is key to slowing down disease progression.

Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Message of Hope

Jeremy: Never give up. There will be highs and lows, but you have to keep going and enjoy every moment. Sip life — embrace it and never give up. You’re going to die anyway, so what do you have to lose?

Seek out support groups, such as [my] Facebook group MPNLIFE, and gather multiple medical opinions. Be your own advocate. Write down your questions and, if possible, take someone to appointments to help with notes.

Jeremy S. polycythemia vera

I value the opportunity to get to know my patients over the years or even decades… We should be partners in the patient’s health journey, and I intend to accompany them throughout it.

Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Dr. Angela Fleischman

Dr. Angela Fleischman

Introducing Dr. Angela Fleischman

Stephanie Chuang, The Patient Story: Would you [please] share your motivation for working with PV patients and anything in your background that helps you relate to them?

Dr. Angela Fleischman: I have been dedicated to caring for patients with myeloproliferative neoplasms (MPNs) from the very beginning of my medical career. My enthusiasm and dedication continue to grow daily, even after being in this field for quite a long time. What truly attracts me to this particular condition is multifaceted. Number one, I value the opportunity to get to know my patients over the years or even decades.

Number two, I appreciate that patients can do a lot for themselves. Self-management and self-empowerment are very attractive concepts to me as a physician. My goal is to guide a patient to maximize their health, rather than simply prescribe a medication. We should be partners in the patient’s health journey and I intend to accompany them throughout it.

Polycythemia Vera Symptoms

Common First PV Symptoms

Stephanie: What are the common profiles of patients with PV in terms of age or symptoms when they present to you?

Dr. Fleischman: Every patient is unique, but common themes do exist among PV patients. They can present at different stages in life; while PV tends to present in older adults, there are also young people diagnosed with polycythemia vera. We should not categorize patients strictly by age or type.

In retrospect, many PV patients have experienced itching for a long time without knowing its cause; they often tried different soaps or treatments without relief. If there is one distinctive symptom, it is likely chronic itching. Fatigue is common among PV patients, but it is also prevalent in the general population, making it less useful for distinguishing PV. Itching is truly the main unifying symptom.

The exact molecules driving PV-related itching are not well defined.

Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Understanding PV-Related Itching

Stephanie: How is PV-related itching different from other dermatologic conditions, like eczema?

Dr. Fleischman: The feature that distinguishes PV-related itching is its aggressiveness after a hot shower. If you hear a patient describe sudden itching induced by heat or water, that is very common in PV. Patients often say, “I feel like I’m itching from inside; my whole body is itching from inside,” which sets it apart from localized itching, such as an itchy foot. That is not typical of PV.

The Science Behind PV Itching

Stephanie: Is there a simple way to explain the science behind why PV patients experience itching?

Dr. Fleischman: It most likely relates to increased red cell mass. When patients undergo phlebotomy to lower their hematocrit, the itching often resolves. It also likely involves abnormal cytokines or inflammatory proteins produced by immune cells, although the exact molecules driving PV-related itching are not well defined.

While these are characteristic abnormalities in polycythemia vera, having a high hemoglobin or hematocrit alone does not mean a person has PV.

Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

How PV Patients Get Diagnosed

Stephanie: How do PV patients get diagnosed? What do they notice and what leads to diagnosis?

Dr. Fleischman: Diagnosis occurs in many ways. Often, a patient visits their primary care physician for itching or another issue, or during a routine checkup. Abnormal labs — such as high hemoglobin, hematocrit, white count, and platelet count — raise suspicion. While these are characteristic abnormalities in polycythemia vera, having a high hemoglobin or hematocrit alone does not mean a person has PV. Other, more common reasons exist for high levels, such as sleep apnea, smoking, or certain medications like testosterone. It is important to emphasize that high hematocrit does not equal PV.

Initial Patient Conversations

Stephanie: How do you like to approach your first conversation with a new PV patient?

Dr. Fleischman: I want to understand the patient’s personal philosophy about their health and what they would like to achieve with their PV care moving forward. Physicians should not assume their values are the same as those of the patient. People are at different stages in their lives and may have different goals.

For example, an 18-year-old will have different health goals than an 80-year-old. I always ask, “What would you like to accomplish with your treatment?” PV can be managed in many ways. There is no absolute right or wrong approach; it should be personalized. Once I understand the patient’s goals, I provide all available information and then they select the best approach for themselves.

I always ask, ‘What would you like to accomplish with your treatment?’ PV can be managed in many ways. There is no absolute right or wrong approach; it should be personalized.

Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Discussing Treatment Options and Patient Preferences

Stephanie: How do you discuss research and treatment options and listen for cues about patient priorities?

Dr. Fleischman: There are common themes among PV patients. Some, especially younger patients, are hesitant about medications and prefer a medication-free approach, often relying on phlebotomy and aspirin, if appropriate. Others want to be proactive, addressing the root cause and aiming to reduce their JAK2 percentage; interferon alpha is frequently discussed for this approach.

A third type of patient simply wants an easy regimen without concern for underlying issues; for them, hydroxyurea might be most appropriate. The treatment style should fit the patient’s preferences.

Latest Advances and Disease Modification Strategies

Stephanie: How do you introduce the latest advances to proactive patients, especially regarding disease modification?

Dr. Fleischman: In polycythemia vera, if the patient is interested in data and disease modification — changing their disease trajectory and possibly eliminating JAK2 mutant cells — the conversation centers on interferon alpha (IFNα). Many patients arrive specifically to discuss interferon alpha, having researched it themselves.

Not every symptom is caused by PV. Over-attributing symptoms risks overlooking other health issues.

Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Simplifying the Biology: Why Do PV Patients Have Too Many Red Blood Cells?

Stephanie: Can you summarize why PV patients overproduce blood cells?

Dr. Fleischman: Our bodies need to maintain equilibrium in blood cell production. Hormones signal our bone marrow when to produce more red blood cells or platelets, and this signaling runs through JAK2. A JAK2 mutation, seen in almost all PV cases, causes blood stem cells to always receive the signal to produce more blood cells, leading to excess red cells, platelets, and white cells.

Tracking Symptoms Effectively in PV

Stephanie: How do you help patients track symptoms and understand their importance?

Dr. Fleischman: Symptoms are important and associated with PV, but not every symptom is caused by PV; over-attributing symptoms risks overlooking other health issues. For patients undergoing phlebotomy, it is crucial to track whether symptoms correlate with their blood counts or treatments.

For example, do symptoms worsen before phlebotomy and improve after? Did symptoms resolve when platelet counts dropped on hydroxyurea? Coupling objective data (like blood counts) with symptoms helps clarify what is truly related to PV.

Document symptoms in a journal or other format, noting onset, frequency, and patterns… Even more important is communicating the reason for sharing a symptom.

Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Communicating with PV Specialists: Tips for Patients and Caregivers

Stephanie: What guidance do you have for patients and caregivers on communicating with their PV doctors?

Dr. Fleischman: It is valuable to document symptoms in a journal or other format, noting onset, frequency, and patterns, such as whether something happens every Friday or daily for a month. Even more important is communicating the reason for sharing a symptom. Are you reporting it because you want it resolved or simply to inform your doctor? This distinction helps me know how I can best support my patients.

Hopes for the Future: The PV Treatment Landscape

Stephanie: What are your hopes for PV patients in the coming years? What is changing?

Dr. Fleischman: The landscape is changing across several aspects: symptom management, blood count control, blood clotting, and tackling the underlying disease. New treatments target different areas, but for the core disease, interferon alpha remains our best option, as it can bring about molecular remission in some patients.

On the horizon, hepcidin agents (medications that increase hepcidin) will help prevent overproduction of red blood cells but may not address the disease’s root cause. It is important to clarify what “treatment” means, as it can refer to very different approaches. Ultimately, PV is a chronic condition and patients should be empowered to take the driver’s seat in managing their care.

Ultimately, PV is a chronic condition and patients should be empowered to take the driver’s seat in managing their care.

Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Jeremy S. polycythemia vera
Thank you for sharing your story, Jeremy!

Inspired by Jeremy's story?

Share your story, too!


PharmaEssentia

Thank you to PharmaEssentia for supporting our independent 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.


More Polycythemia Vera Stories

Taja S. polycythemia vera

Taja S., Polycythemia Vera



Symptoms: Chronic fatigue, fainting, stroke-like episodes, elevated hemoglobin, hematocrit, and platelet count
Treatments: Emergency surgery for ruptured cyst & bowel obstruction, chemotherapy, radiation, bone marrow transplant
Jeremy S. polycythemia vera

Jeremy S., Polycythemia Vera



Jeremy Smith and Dr. Angela Fleischman share empowering insights on living well with polycythemia vera, from symptoms to treatment and patient advocacy.
Todd S. polycythemia vera

Todd S., Polycythemia Vera



Symptoms: None, discovered during a routine physical that uncovered extremely high blood counts

Treatments: Phlebotomy, aspirin

Nick N. feature profile

Nick N., Polycythemia Vera



Symptoms: None, caught at routine physical
Treatments: Phlebotomy, Besremi
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Categories
Chemotherapy Monoclonal antibody drug Non-Hodgkin Lymphoma Patient Stories Treatments Waldenström macroglobulinemia (WM)

Ray Explores Earth’s Limits and His Own with Waldenström Macroglobulinemia

Ray Explores Earth’s Limits and His Own with Waldenström Macroglobulinemia

Ray describes himself as a professional explorer, but clearly, he’s much more than that. He’s a teacher, an advocate, and someone who sees life with rare clarity. In 2023, Ray was diagnosed with Waldenström macroglobulinemia, a rare form of non-Hodgkin lymphoma.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

For someone who had crossed the Sahara Desert on foot, trekked unsupported to the South Pole, and endured countless extreme expeditions, noticing something was wrong with his body wasn’t easy. But when constant fatigue, dizziness, memory lapses, and the feeling of having “wool in his head” started affecting his daily life, he knew it wasn’t just because he was getting older.

Ray Z.

After rounds of bloodwork and a bone marrow biopsy, doctors confirmed the diagnosis. Ray admits he first thought he had six months to live. Instead, he learned that while Waldenström macroglobulinemia isn’t curable, it’s treatable. His medical team immediately started chemotherapy, followed by monoclonal antibody therapy, though his allergic reaction to the latter made the process far from smooth. (Editor’s Note: A monoclonal antibody is a type of protein made in the laboratory that can bind to certain targets, such as antigens on the surface of cancer cells. Each monoclonal antibody is made so that it binds to only one antigen.)

Ray approached treatment like he approached his expeditions: with grit, discipline, and a refusal to let circumstances define him. Throughout treatment, he kept moving. Some days that meant training for another Arctic trek, other days it was walking down the road after days of being sick from infusions. He found comfort in normal family life, his wife’s encouragement, and the humor of friends who treated him like himself, not just “the guy with cancer.” For Ray, empowerment came from living fully, not waiting for life to “resume.”

What’s powerful about Ray’s story is how he reframes illness. He doesn’t call himself a “cancer survivor.” Instead, he insists he is a person who defined his own experience, someone who took back his life. Waldenström macroglobulinemia may have disrupted his path, but it also sharpened his perspective: savor the perfect espresso, enjoy the messiness of family life, laugh with friends, and say yes to adventures — whether that’s crossing Death Valley in record heat or showing up at his daughter’s ski race after chemo.

Ray wants others with Waldenström macroglobulinemia or any rare diagnosis to know that you can’t always control what comes your way, but you can choose how to live through it. And sometimes, that choice is the most empowering act of all.

Watch Ray’s video or read the transcript of his interview to find out more about:

  • How a world explorer went from the Sahara Desert to a rare lymphoma diagnosis
  • Why Waldenström macroglobulinemia didn’t stop Ray from chasing new adventures
  • The surprising lesson Ray learned from sitting in a chemo chair
  • How humor, family, and fitness helped Ray reclaim his life
  • What espresso taught Ray about appreciating the present moment

  • Name: Ray Z.
  • Diagnosis:
    • Waldenström Macroglobulinemia (WM)
  • Symptoms:
    • Constant fatigue
    • Excessive napping
    • Dizziness
    • Memory issues
    • Shortness of breath
    • Anemia
    • Frequent infections
    • Skin rashes
    • Digestive problems
    • Numb and white fingers
    • “Wool in head” sensation
  • Treatments:
    • Chemotherapy
    • Monoclonal antibody
Ray Z.
Ray Z.
Ray Z.
Ray Z.
Ray Z.
Ray Z.
Ray Z.

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

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


Table of Contents

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My name is Ray. I’m a professional explorer. I was diagnosed with a rare form of lymphoma [Waldenström macroglobulinemia] in 2023.

My family and friends were being kind, they’d say I’m full of energy, live for the moment, love to explore, and love to laugh. If I caught them in a bad moment, they would say I’m a little bit risky and take too many chances.

I have come from a prior life. I was nearing the age of 30 and was someone who had no passion in life or no drive. I had nothing to sink their teeth into on a day-to-day basis, which compelled me to want to get out there and do things instead of living a sedentary life, if you will. I wanted a different life and I found that life through my younger brother, who is my greatest inspiration.

He was a great outdoorsman and got me into trying out rock climbing, ice climbing, and mountain biking. I quit smoking and did a 180-degree turn and changed my life. I discovered a person who was within me who I never knew existed for 30 years, someone who could do these crazy feats of endurance, like run 4,500 miles across the Sahara desert or trek unsupported to the South Pole, dragging all of my supplies behind me in a giant sled.

Here I am, 45 expeditions later and I still love what I do. If anything, I’ve learned that we spend a lot of time talking ourselves out of trying new things and out of taking chances and then one day, time runs out and we say to ourselves, “What if I took that chance? What if I went after something in my life? Who knows what would have become?” That’s why I love adventure.

I crossed the hottest deserts on the planet on foot, typically during the hottest times of the year, and I’ve completed multiple winter Arctic expeditions at the coldest time of the year, so I’m in extremes and it requires a tremendous amount of fitness, training, and resilience to do these things. A few years before my diagnosis, I started feeling exhausted all the time. It got to a point where, for someone who’s very in tune with their body, I said to myself, “I’m not the same person. Something’s changed.”

My wife noticed, too. I was napping up to five times a day. Everybody loves a good afternoon nap, but I was napping constantly. I wake up at 9 o’clock, drink my coffee, and then I have to go back and take a nap. It was so strange.

I was trying to explain it to my doctor. I feel like I have wool in my head. Maybe it’s long COVID. I didn’t know what it was. My wife said, “You have to go back to the doctor and do a series of blood tests.”

Eventually, after finally meeting with a hematologist, they discovered that I had all this protein in my blood. My blood was like molasses, which explained all of the weird symptoms that I was experiencing. I couldn’t run to the end of my lane way without being completely winded, when I was used to running thousands of miles on expeditions in extreme conditions, so obviously there was something wrong. They did a bone marrow biopsy and then got a diagnosis.

There was never a grand plan. Quitting a pack-a-day smoking habit was one of the toughest things I have ever done. It took me three years because I was into a different lifestyle. I started racing mountain bikes and I was getting fitter. Running was becoming my greatest teacher. I was going around the world doing ultramarathons, meeting new people, and going to exotic places that I’d never been before.

Through running ultramarathons, I met two friends and we had the idea of running across the entire Sahara Desert from one end to the other. Through six degrees of separation and serendipity is what I’ve always said when I give these presentations. Matt Damon heard about it and wanted to make a movie out of it. A movie gets made out of the three of us running across the Sahara desert called “Running the Sahara,” which was directed by an Academy Award-winning director, with Pearl Jam and U2 contributing music to the film. It was crazy.

Through the expedition of running 4,400 miles, I learned a few key things. The world is an incredible place and we have a lot to learn from people who are living lives very differently from us. While on this adventure through the six countries across the Sahara desert, we met people and learned from people who are living in a global economy at a completely different end of the spectrum than where we are at and yet, there was so much to teach us.

Through adventure, I’m learning what I barely got out of high school. Now I have a voracious appetite for wanting to learn and it’s coming through an adventure. Do we finish the run across the Sahara Desert? We get to the Red Sea, 111 days, running 40 miles a day, every day. The three of us have our hands above the Red Sea and I look at my hand. I glance at our three hands and think to myself, “Wow, my hand looks the same as the other two guys. I’m the same as these two champion ultramarathon runners.”

At that moment, another important point dawned on me: all of us are capable of doing extraordinary things in our lives if we’re willing to go after them. When we put our hands in the Red Sea, I was instantly committed. This is my life now. This is what I want to do for the rest of my life. I want to see the parts of the world that are the furthest, remotest places that I can learn from, but also be in those places when they’re at their most extreme. I want to be in the Arctic in the winter and I want to be in the desert in the summer, and that’s how it all began.

I learned the power of storytelling from the film. The film was quite popular at the time. People were digging it and learning from it, so that precipitated me starting my own foundation called Impossible to Possible with my business partner Bob Cox and my wife Kathy. Since 2008, we have been taking young people on free, learning-based expeditions all over the world.

When I quit smoking, I’ll never forget being able to run up a set of stairs and not being winded. Climbing stairs used to be hard, but you forget because you’re living in the moment. You have a short-term memory when it comes to how you feel. I’m 56. I’m getting older. I had COVID a few times and I thought that’s what it was. You start to accept the situation that you’re in.

It was when other things started happening, like driving somewhere and forgetting where I was. That’s not right. I was anemic and the lack of oxygen getting to my brain was causing these weird symptoms where I knew there was something seriously wrong.

By the time I got my diagnosis, I was fully prepared. I was sure that I was going to die in six months. I’ve always been very in tune with my body. I can tell you my heart rate without looking at a heart rate monitor. It’s what I do as an endurance athlete. When I went to the doctor, the hematologist said, “Your blood protein is high. This is weird.” I thought to myself, “Oh my gosh, I have cancer.” I just knew.

When I went home, I talked to my wife and said, “They’re going to confirm what it is. They have to do a bone marrow biopsy. But, you know what, babe, I seriously think this is it. If it is, we have to tell our kids. We’ll wait until we have a final diagnosis.” But mentally, in some strange way, I was prepared.

I wasn’t excited about it, but I was prepared that if I had six months left, it was going to be an incredible six months. I was going to do so many things with my kids, whether they liked it or not. They were going all over the world with the old man and I was going to live life at 1,000%.

When I got the diagnosis, they said, “Do you want the good news or the bad news first?” I said, “Give me the good news.” They said, “Well, you’re not going to die.” I said, “That’s great. That’s a good start. That’s a good opener. What do you have next?” And they said, “The form of lymphoma you have, we’re going to treat it aggressively with chemotherapy and monoclonal therapy. It’s going to be six months of therapy, 25 days between the sessions. There’s no cure for what you got, but we think we can get you back to normal.” I thought I won the lottery.

It wasn’t until I went to the first rounds of chemotherapy that I found out that I had so many residual dead cancer cells, this protein circulating in my blood, that they couldn’t give me the monoclonal therapy right off the bat. The flood of dead cells that would enter my body could cause a catastrophic failure.

They said, “First, we’re going to start with the chemotherapy and then we’re going to the monoclonal antibody.” I had chemotherapy and thought it wasn’t so bad because I didn’t feel so much. They said, “Wait until you get the other stuff.”

On the first day of the second month, I was on the chemotherapy drip for eight hours. I came in the next day for the monoclonal antibody and my throat closed instantly. I was allergic. They worked it out and I had to have other medicines to counteract the effects. Every time I would go back in 25 days, I’d say, “Maybe you don’t need to give me the other therapy,” they’d say, “No, you’re getting every drop.”

I made a commitment when I went in and felt like s***. When I’d come home, I would lie down on the couch. I couldn’t even pee in a toilet other people use because if any random pee droplets were around, they could get sick from the drugs. I would lie down on the couch for a couple of days and my wife would say, “Okay, that’s enough. Get up.” That meant the clock was 23 days until the next round.

I made a choice. I was used to being on expeditions and choosing to do very difficult things. People ask me all the time, “What do you do when it gets tough out there?” I crossed Ellesmere Island in the Arctic with my teammate Kevin. It’s as far north on this planet as you can get. It’s an island with horribly difficult conditions. What do I think about when I’m out there? I think to myself, “I chose to be here and I chose to do this, so I’m going to give this everything I’ve got.”

I didn’t choose cancer. It chose me. But I wasn’t going to allow it to define me, nor was I going to allow it to tell me what I could and couldn’t do. My oncologist is one of the most awesome dudes on the planet. He’s a mountain biker, so he understands what I do. He said, “There’s nothing wrong with you, okay? Your immune system was collapsed, obviously. Do what you need to do.”

Every month, I would get off the couch and go for a walk. I would start with half a mile down my road and get going. Then I would train for something, whether it was an adventure in the Arctic or going off with one of my daughters into a desert. Every month, I train myself to get as fit as I possibly can, because I know how s***** I was going to feel after the monoclonal therapy. I said, “I’m going in the best fighting shape. I would go somewhere in the world, do something epic, then come back home, and go back on to the tubes.”

I would go home, lie down on the couch for two days, be sick as a dog, get up, start training, and go somewhere in the world. For six months, I chose to live and not let cancer own me. I was going to own my schedule and embrace the irony. Two days before this interview, I was up in the Arctic and now I’m sitting in a room.

When I would get chemotherapy, I would sit in a room where 65 people were sitting in the waiting room, most of whom were a lot older than me and may not be in great physical condition and not as fortunate to be on their feet. One day, a 20-something-year-old girl came in. When she walked past me, I saw that she was bald and emaciated. I thought to myself, “Dude, you have nothing to complain about. This is a cocktail party in comparison to what she’s going through

I was very aware that the difficult things we go through in life are relative to us as individuals. We can’t compare ourselves to someone else necessarily because we are living what we’re living. We’re feeling what we’re feeling. But I would not lie down on the couch feeling like s***. I thought, “It’s going to pass. It will go away. It is what it is.” That goes for all the people in the poorest countries on the planet that I’ve been in who don’t have food. There are a lot of people suffering much worse fates than what I had been given, so I’m going to live another day. A couple of days of feeling like s*** is nothing.

Sense of humor is super critical in life. We love to laugh. My best friend Bob, whom I started Impossible to Possible with, and I have this joke between us. I talk to him five times a day, so I have a room filled with gear that I use for all my expeditions. There’s a lot of cool stuff in there and tools of the trade. The day I got my cancer diagnosis, I texted Bob and said, “Hey, man, listen. Bad news. I got this crazy form of lymphoma.” He only texted back one word and said, “Dibs,” meaning he had dibs on all my stuff. It was funny.

Support comes in that way. It doesn’t necessarily have to be in the ways that one would anticipate that they would normally be. But for me, I didn’t want to be treated like someone who had something wrong with them. When my daughters had cross-country ski races, I would show up. When my daughters had paddling races, I would show up. When my wife had running races, I’d show up.

Sometimes I would show up a day after chemotherapy and feel like I was going to vomit. If I tried to pick up something, I would feel nauseous in my fingertips. I’d be standing there, thinking, “I know I’m not going to throw up, but every pore in my body feels like it.” It was the weirdest I’ve ever felt in my life. People around you who make you feel normal, even though you’re going through something crazy, are the most important to me.

In my household, life is normal. I’m lying down on the couch and my wife and the kids are screaming and fighting about something. It’s not like they have to be quiet because daddy’s passed out on the couch and I preferred that to anything else.

If you overcome it, it’s both the worst thing and the best thing that could happen in your life because right away, you start to appreciate the more subtle things in your day-to-day that before, you wouldn’t have even looked at before. I’m a big coffee person, made a great cup of coffee like an espresso, and it was perfect. It tastes so good. Pre-cancer, I would have been like, “All right, let’s go, I have to go. I’m busy.” I wouldn’t even pay attention. But now, I stop every day.

I say to my friends that I could be walking to the grocery store and get hit by a truck. You have to slow down to a point where you can be present in the moment, appreciate what you have, and be satisfied with where your life is at the moment. Find some satisfaction. Be able to appreciate where you’re at in your life in that moment. Even though you may have lofty goals, it’s not discounting those, but people have to be able to appreciate where they are in the moment because it can all be gone very quickly.

I was definitely like this before the diagnosis, but the cancer and going through chemotherapy in six months and then another year after that to get back to normal, all of that helped bring clarity. Before, it was like looking through a camera with a dirty filter and then you take the filter off and it’s completely clear. Now I completely understand and I’m very comfortable.

If they came to me and asked if they could check my blood every two months and my immune system’s not 100%, I wear a mask on a plane and use hand sanitizer all the time. I don’t care. People ask, “Isn’t that a pain in the a**?” No, are you kidding me? It’s nothing. It’s a minor inconvenience in my life that I don’t even notice.

If the doctor came back to me again today and said, “I have bad news. It’s come back again,” it would be an inconvenience, but that’s pretty much it. It’s taught me to truly appreciate where things are now. If I was to step off the planet tomorrow, would I be okay? Would I be happy with the day that I’ve just lived? You have to find that happiness in that day that you’re in.

During my third or fourth month of chemotherapy, my doctor said, “Look, dude. You can go and do these things. You’re ready to go, but here are the rules you have to follow. You know that your immune system’s collapsed, so don’t do this, don’t do that. Don’t eat raw food. Wear a mask and use hand sanitizer.”

I’m way up high in the Arctic with my buddies, the indigenous people from that region, and a couple of buddies of mine from home, and we’re weathering a snowstorm. It’s -50 degrees out. It’s in the middle of the night and we’re in this tiny little cabin on the side of a lake on Baffin Island. We heard two snow machines pull up and thought, “Who could possibly be out here?”

It was two young lads who were out hunting. They came into the cabin with a frozen caribou leg in a garbage bag. Caribou was one of my favorite things on the planet. They had a sharp knife, so they’re carving the caribou meat and it’s coming off like carpaccio. I’m looking at it and I wanted to eat it, but in my mind, I have the doctor saying, “Don’t eat anything raw, uncooked, or undercooked.” But I said, “Give me that caribou.” I didn’t even care. Sometimes, you have to let loose.

Every time I see my oncologist, I say, “You gave me my life back,” and he says, “But you weren’t going to die. I had your back. You’re not going to die. We may have to do this again in 10 years.” I said, “No, doc, you don’t understand. You gave me my life back. A life that I love. You gave me my job back. You gave me the ability to go and do the things, to run up a mountain, to do the things I do and do them well. It’s a gift to have this back.” Every time I see him, I tell him the same thing.

There’s something about the Mojave Desert in Southern California that I absolutely love. I keep going back. I’ve crossed x almost every large desert on the planet, but I love Death Valley in the Mojave Desert. So after chemotherapy, I trained. I said, “I want to go from the northernmost point in Death Valley National Park and go south about 100 miles, completely cross country to the Badwater Basin, and do it in July, the hottest time of year, and with limited resupplies.”

I did that two months after finishing chemotherapy and I wasn’t ready. They had an anomalous windstorm where the winds were hitting me head-on. It was world record heat. I had to stop. I did several trips around the world guiding and then decided to go back the following July, which was in 2024, and I was successful in going from the northernmost point to the Badwater Basin, the lowest point in North America, completely cross country, 53 hours of moving nonstop, over the gnarliest terrain on the planet, at 120°F.

It was so hot that I was seeing double, but I love the heat. Then I guided, did some trips, and did some Impossible to Possible youth expeditions in Chile and other places. The last big trip I did was this past winter. I crossed Ellesmere Island in 28 days with my teammate Kevin, dragging all of our supplies across 500 km, and living out of our tents. It was epic.

I said in the movie, “The greatest challenges that we face in our lives are 90% mental and the other 10% is all in our heads.” It’s 100% your choice how you’re going to take on that diagnosis. When you reach a crossroads, you can go right or left. It’s 100% your choice. And that is on every diagnosis. We have to choose to fight or give in.

Once you say you’re going to fight, that leads you down another road with another branch on it. Are you going to fight with passion or fight and then give in? It becomes a series of choices. You have to realize and accept that this is something. This is an adventure. This is a challenge. And I don’t say adventure in a way that’s romantic and happy.

This is going to be the most difficult challenge that someone will go through in their life. You are not choosing to do it. It’s being thrust upon you and it’s your time to rise to the occasion. You’re called to stand up and do everything you possibly can, not just for you, but for everyone around you, even for those who will come after you or people you’ve met in your life. You may need a game. It’s on you to make that decision. And when you choose to go into the affirmative, which I hope everybody does, and you’re going to go after this, fight with passion.

Every person, deep down inside them, has a capacity for a form of greatness. Maybe in their great dreams, they think they’re going to be a rock star, a great artist, or an incredible athlete. Rising to the challenge and being great means fighting this disease that you’re up against with no idea the kind of person you’re going to be when you come out the other end.

One thing about life that’s not mysterious is that we are in control of who we are. We define ourselves. We don’t allow things to define us. You survived that cancer. You’re not a cancer survivor. You are a person who defeated cancer.

If they caught it any later that it would turn into scar tissue and I would no longer be able to create healthy blood cells, they don’t know. There’s very little research on this type of lymphoma because there are so few diagnoses. Most of the time, old people get it. I think back to the years of obvious signs. My oncologist said, “You’ve had this thing for years for sure.” I thought back to three or four years before the diagnosis and now I could see it, but I didn’t see it then because you slip into a way of existing and think it’s normal. You forget what it feels like to feel good.

The biggest symptom was getting weird infections constantly because my system was so depleted. It still is. It wasn’t from the chemo necessarily. I was always getting something. If I walked into a room and even if someone who had a cold was in the other part of the room, I was getting that cold. I was getting weird skin rashes and infections. I had shortness of breath and dizziness. It felt like wool was packed in my head, which is why I thought I had long COVID. I had issues digesting certain foods. When I’d go for a run, all my fingers would be white and I wouldn’t be able to feel them, but I don’t experience it now.


Ray Z.
Thank you for sharing your story, Ray!

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Navigating Thyroid Cancer AND Chronic Myeloid Leukemia (CML): Jannette’s Story

Navigating Thyroid Cancer AND Chronic Myeloid Leukemia (CML): Jannette’s Story

Imagine recovering from thyroid cancer treatment and the road back to “normal,” when you get a second diagnosis, this time a rare blood cancer known as chronic myeloid leukemia, or CML. Jannette’s story is one of resilience and finding strength in the face of difficult circumstances.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

She was first diagnosed with thyroid cancer in 2010 after experiencing recurring sore throat, trouble swallowing, and swelling. At first, she thought it was just strep throat, but when the symptoms persisted, she trusted her instincts and pushed for more testing. That decision led to her diagnosis and eventually two surgeries to remove her thyroid, along with chemotherapy and radiation treatment.

Just when she began to regain her strength, life shifted again. In 2014, Jannette started experiencing fatigue, nausea, vomiting, and even noticing blood during bowel movements. Because of her personal and family history of cancer, her doctor referred her to an oncologist. After a bone marrow biopsy and blood work, she received another life-altering diagnosis: chronic myeloid leukemia (CML).

Jannette J. thyroid cancer

Hearing the words a second time felt overwhelming, leading Jannette to break down. Still, she moved forward with treatment. She began taking chemotherapy in pill form, which was initially difficult to manage since swallowing pills was already a challenge due to her thyroid surgery. Eventually, her doctor found a medication that was easier to take, and today, her leukemia is in remission. She continues to be monitored closely and takes daily medication.

Jannette also lives with another challenge: she’s an amputee, having lost her left arm and leg as a child in a traumatic accident. That reality has shaped her strength, but it has also made managing cancer more complex. She is honest about the fear of recurrence, the difficulty of acceptance, and the exhaustion of living with a chronic condition.

What stands out most in Jannette’s story is her advocacy for others. She emphasizes the importance of listening to your body, seeking medical help when something feels off, and not staying silent when the emotional weight becomes too heavy. She encourages reaching out for support from social workers, counselors, or trusted loved ones, because isolation can make the experience much harder.

Her authenticity, vulnerability, and determination remind us that survivorship is about more than treatments and scans. It’s about permitting yourself to seek help, embracing support systems, and holding onto hope even in the most uncertain times.

Watch Jannette’s story to find out more:

  • How recurring sore throat led to her thyroid cancer diagnosis
  • What new symptoms revealed her chronic myeloid leukemia
  • How daily oral chemotherapy impacts her life today
  • Why living as an amputee shaped her resilience and perspective
  • The advice she gives others about seeking support and not staying silent

Scroll down to read the transcript of Jannette’s interview.


  • Name: Jannette J.
  • Age at Diagnosis:
    • 29
  • Diagnoses:
    • Thyroid Cancer (2010)
    • Chronic Myeloid Leukemia (2014)
  • Symptoms:
  • Thyroid Cancer
    • Recurring sore throat
    • Worsening throat pain
    • Difficulty swallowing
    • Swelling in the neck
  • Chronic Myeloid Leukemia
    • Fatigue
    • Nausea
    • Vomiting
    • Blood with bowel movements
  • Treatments:
    • Surgery: thyroidectomy
    • Radiation therapy
    • Chemotherapy
Jannette J. thyroid cancer
Jannette J. thyroid cancer
Jannette J. thyroid cancer
Jannette J. thyroid cancer
Jannette J. thyroid cancer

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

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



Hi, I’m Jannette

I was diagnosed with two different types of cancer. The first cancer I was diagnosed with was thyroid cancer in 2010 and then I was diagnosed with chronic myeloid leukemia (CML) in 2014.

Never think that you can’t get cancer because you can. If you ever feel like something is wrong, please get checked out.

My symptoms got consistent over time

It usually started off with a sore throat. Then I noticed as time went on, the sore throats kept getting worse and worse. I would go to the ER each time and they would tell me I have strep throat, which I got a couple of times back to back. Then I noticed I started having an issue with swallowing and some swelling. That’s when I figured something was wrong, so I consulted my primary care doctor, who referred me to the ear, nose, and throat doctor (otolaryngologist). The doctor did some tests and we found out I had thyroid cancer.

The moment everything changed

I was shocked because I never would have thought that I would be told that I have cancer. I never thought that it could never happen to me because it can, but I was surprised because I have never had symptoms of cancer.

My thyroid cancer treatment plan

I did two rounds of chemotherapy. I had to quarantine. I couldn’t be around family and friends for a while, so that in itself was a whole new experience.

The side effects I experienced from that included feeling a little funny, like I was weak a little bit, but I don’t know if that was from the radiation. I kept feeling tired and a little bit down on energy. But after a while, I was okay. Once the radiation was done, I felt better.

I also ended up having two separate surgeries to have my thyroid removed. I’m not sure about the proper name for it, but they made an incision and started with the right side first and removed that side. They found large nodules or tumors. Then they waited a little while and did the left side. They had to put in a drain, which I had to wear. It was very painful. I couldn’t eat for a while.

I was diagnosed with a separate cancer

Fast forward to 2014, after the whole experience with thyroid cancer, I started to feel better again. I started gaining my energy back. Then seemingly out of nowhere, different symptoms started coming up. I started feeling tired all the time. Then I remember a couple of times, I started feeling nauseous and wanting to vomit. The nausea lasted for a little while. Then I started having days when I would vomit.

When I went to the bathroom to have a bowel movement, I noticed blood a couple of times when I would wipe. I told my doctor and she referred me to an oncologist. I said, “Isn’t that a cancer doctor?” She said, “Yes, based on the history of cancer in your family.” My grandma, who is my dad’s mom, and then an aunt, who is one of my dad’s sisters had breast cancer and they both passed away, sadly.

She scheduled an appointment and when I saw the oncologist, they got a sample of my bone marrow and did some blood work. We found out that I had leukemia.

That one was a little more difficult. I broke down and cried because for some reason, and I don’t know why, I felt like that one was a little more serious. I was very upset, especially since I had already gone through cancer once and now I had to go through it all over again.

I now take daily chemo

The doctor wanted to see me twice a month, so I was guessing it was pretty bad. He ordered a medicine right away for me to start. The first medication I was on was chemotherapy in the form of a pill, but I was having issues with that. Because of my thyroid, I can’t swallow pills, so I had to empty the pill into applesauce. I had to take it three times a day, so that was a lot to manage.

After a while, he switched me to a different one, which is what I’m currently on. It’s a lot easier to manage because I only take it once a day and it’s a little smaller. Sometimes I feel a little nauseated here and there, but I like it better because I don’t have to try to remember to take it up to three times a day. It’s a lot easier to manage. I’m not sure why my doctor didn’t want me to have chemo intravenously.

I’m being monitored. I still have to take the medication. He said that right now, he doesn’t feel like I should stop. I’m doing great. My cancer is in remission. I see him every six months, so I’m doing pretty good at this point.

I’ve had to face many challenges in my lifetime

Cancer in itself is a challenge, but the worst part was having it a second time because I had been through it before. I also have a disability. When I was a child, I was in a tragic, traumatic accident, so I’m also an amputee. I lost my left arm and leg. I was hit by a train and dragged 75 feet down the tracks. It happened in 1992. I lost my left arm below the elbow and my left leg below the knee. It’s hard, especially when you have a chronic or terminal illness and then you have a disability to deal with.

Accepting my new reality has been difficult

Even though I’m in remission, the doctor’s confirmed that I’m going to have to be on medication for the rest of my life. I also have the fear of what if. What if it comes back? There’s a part of me that I’ll never get back because of my childhood accident. I lost my arm and leg. I had to go through a lot with that experience. I had to go through occupational therapy to relearn how to do the simplest things, like eat with a fork, hold a spoon, and get dressed.

My advice to others

If you are ever diagnosed with cancer or any disease, whether it’s chronic or terminal, my advice is not to give up. I know it may be hard. There are days when you may get tired of going through this, but don’t give up.

If you feel it get to the point where it’s too much and it’s overwhelming, contact someone and get help. Contact your hospital social worker and tell them you need to talk to someone. They have resources. Maybe you need to talk to a counselor. Don’t sit in silence because if you do, that can most times lead you into a dark place. When I first found out, I was in a very dark place and I shut myself off from people. I didn’t want to talk or be around anybody. Please don’t let it get to that point.


Jannette J. thyroid cancer
Thank you for sharing your story, Jannette!

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More Thyroid Cancer Stories

Jannette J. thyroid cancer

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Symptoms: (thyroid cancer) recurring sore throat, worsening throat pain, difficulty swallowing, swelling in the neck; (chronic myeloid leukemia) fatigue, nausea, vomiting, blood with bowel movements
Treatments: Surgery (thyroidectomy), radiation, chemotherapy
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Michelle L., Papillary Thyroid Cancer, Stage 1



Symptoms: Hormone imbalances, mood swings, depression & anxiety, unexplained weight changes, chronic digestive issues, weakened immune system, painful/irregular periods, insomnia, fatigue and low energy, lump in the neck, difficulty singing/voice changes, shortness of breath, physical weakness, arm pain
Treatments: Surgeries (lymphadenectomy, total thyroidectomy, partial right neck dissection), radioactive iodine therapy, ethanol ablation
...
Taylor S. patient advocate

Taylor S., Patient Advocate, Thyroid Cancer (Oncocytic Carcinoma of the Thyroid Gland), Stage 1



“Give yourself grace, but also do it on your own time.”
...
Lindsay C. thyroid cancer

Lindsay C., Thyroid Cancer (Papillary Thyroid Carcinoma)



Symptoms: Lightheadedness to the point of fainting, low blood pressure, loss of menstrual period, weight loss, brain fog, joint pain (old injuries and surgeries hurting), soreness and stiffness of legs, depression, severe anxiety, trouble concentrating, sweaty palms, dry eyes, sensitivity to light and sound, tingling in hands and feet, hair loss, weak nails, tiny bumps on legs, digestive issues (soft stool and diarrhea), rapid heartbeat, fatigue despite sleeping for long hours, insomnia, nightmares/night terrors, temperature dysregulation/burning sensations, (burning hands but feet and ears ice-cold)

Treatment: Surgery (thyroidectomy)

...

More Chronic Myeloid Leukemia (CML) Stories


Michele T., Chronic Myeloid Leukemia (CML)



Symptoms: Trouble breathing, rash, bruising



Treatments: Sprycel and Bosulif
Mark K's story of his Chronic Myeloid Leukemia (CML) diagnosis

Mark K., Chronic Myeloid Leukemia (CML)



Symptoms: Weight loss, low energy, night sweats, enlarged spleen, elevated WBC count, frequent need to urinate

Treatment: Tyrosine kinase inhibitors (TKIs)
Jannette J. thyroid cancer

Jannette J., Thyroid Cancer & Chronic Myeloid Leukemia



Symptoms: (thyroid cancer) recurring sore throat, worsening throat pain, difficulty swallowing, swelling in the neck; (chronic myeloid leukemia) fatigue, nausea, vomiting, blood with bowel movements
Treatments: Surgery (thyroidectomy), radiation, chemotherapy