Polycythemia Vera Care: Expert Insights for Informed Treatment Decisions

Katherine Banwell:

Hello, and welcome. I’m your host, Katherine Banwell. Today’s webinar is part of the Patient Empowerment Network’s Elevate series to help polycythemia vera patients and care partners feel well-informed when making treatment decisions with their healthcare team.

And in today’s program, an expert will join us to share advice for accessing better overall care. Before we get into the discussion, please remember, this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.

All right, well, let’s meet today’s guest. Joining me is Dr. John Mascarenhas. Dr. Mascarenhas, welcome back. Would you please introduce yourself?

John Mascarenhas:

Sure, thanks for having me. My name is John Mascarenhas. I’m from the Icahn School of Medicine at Mount Sinai, where I’ve been for over 20 years, and specialize in myeloproliferative neoplasms and lead the leukemia program here. So, thank you for having me.

Katherine Banwell:

Well, thank you so much for taking the time to join us. I’d like to start by discussing your role as an MPN researcher. You’re on the frontlines for advancements in the field. What led you here, and why is it important to you?

John Mascarenhas:

Well, my route to where I am today was circuitous. I mean, I started in laboratory research in leukemias. I found it fascinating, and then when I went to med school, I really enjoyed the patient care aspect.

And it became very clear to me that this was an area that was unmet and needed more translational research. And it was in fellowship that I specifically fell into this niche that I would call the MPN niche, and that was due to my mentor, Ron Hoffman, who came to Mount Sinai in about 2006, and we developed the clinical program here together.

And it’s been very rewarding for me. So, it’s really been an unintended, initially, I mean, I liked leukemia and I liked research, but the MPN clinical research part, I think, is really exciting, and I’m lucky to be at this time point because of the merging of science and how it can affect our patients.

Katherine Banwell: 

When it comes to choosing therapy, it’s important to work with your healthcare team to identify what will work best for you. As a clinician, how do you define shared decision-making?

John Mascarenhas: 

Well, shared decision-making, I think at MPNs, in all of oncology, but specifically in MPNs, really requires getting to know the patient, understanding what their goals and expectations are.

Because we do have algorithms for treatment decisions, but those are often wide and not always personalized exactly to the patient. And even in those algorithms, there are different options or subcategories in which one could choose different medications.

So, I think understanding who your patient is, what their roles are, and discussing those options and what might be associated with them, whether it’s toxicity or goals of therapy, therefore, you can make that decision with the patient. And I do think that patients, particularly in 2026, really play an important, vital role in that shared decision-making.

Katherine Banwell: 

And as you say, part of making care decisions is setting goals. What are treatment goals for polycythemia vera, and how are they determined?

John Mascarenhas: 

I think the treatment goals can – there are certain goals that I would say are uniform, and then there are goals that might vary depending on the patient. So, the uniform goals are thrombotic risk reduction, thrombohemorrhagic risk reduction, reducing the risk of clotting, whether it’s arterial clots like heart attacks and strokes, venous clots like deep venous thrombosis in the legs or the lungs, or bleeds.

And often, we concentrate on clotting, but bleeding can be a complication of these diseases, too, any type of bleeding, whether it’s intestinal bleeding or any type of bleeding event. So, reducing those risks associated with polycythemia vera are fundamental to the disease process and the goals of intervention, but the way you tailor that can differ between patient to patient.

And then, some patients have additional issues, like symptom burdens that are thought to be cytokine-driven or microcirculatory from the blood count, so, addressing symptomatology for patients and different symptoms for different patients. And then ultimately, I think it’s exciting in 2026 to be thinking of the fact that we do have data, we do have evidence, and albeit it’s still early on, of the potential for some of our therapies to be disease-modifying or disease course-modifying.

So, it’s reducing risk associated with bleeding and clotting and risk addressing symptoms, and then ultimately, in some patients, it might be, can we fundamentally change the natural history of this disease and the potential for progression over time?

Katherine Banwell: 

Dr. Mascarenhas, can you walk us through the factors that are considered when choosing therapy for PV?

John Mascarenhas: 

So, I think the baseline, I think of it as a pyramid.

The base of that pyramid is usually aspirin, sometimes clopidogrel (Plavix), for reducing risk of clotting. And then, we really focus on hematocrit, mainly, keeping the hematocrit below 45 percent, but also, there’s data that suggests an elevated white count, platelet count, spleen, and symptoms should also be addressed. So, you can address those with different modalities, and we typically risk-stratify patients simply by being over 60 or having a thrombosis, we put you in a high-risk category.

If you’re in a low-risk category, phlebotomy, blood-letting, venous section. That’s really the main – has been the mainstay for many years, of just keeping that hematocrit reduced for reducing risk of thrombosis. In the high-risk category, we tend to apply cyto-reductive therapies, and you’ll hear that term a lot. Cyto-reductive therapies can be anything from hydroxyurea (Hydrea), an oral chemotherapy that’s been used for about 50 years, to interferon alfa-2a (Pegasys) or alfa-2b (Besremi), now approved since 2021 for polycythemia vera.

These are biologics, different than hydroxyurea, and ruxolitinib or Jakafi, which is a JAK1/2 inhibitor that’s tailored to reducing not just the hematocrits, but the spleen and the symptom burden as well. And now, as of August of 2026, the availability of a hepcidin mimetic called rusfertide in changing iron metabolism and controlling hematocrits.

So, we have a number of different agents at our disposal, and you can tailor them to the patient’s needs and the potential toxicity risk associated with them, as well as therapies in clinical development, like I’ll point out givinostat (Duvyzat), which is a histone deacetylase inhibitor, which has a wealth of data over almost 20 years now in this space, and is in Phase III testing. So, there are options, and as we’ve been talking about, it really needs to be discussed and ideally a shared model of decision-making should be employed.

Katherine Banwell: 

Does a patient’s overall health and fitness level play a factor, play a role in this?

John Mascarenhas: 

I think so, in multiple ways. I mean, sometimes, the overall health, the comorbidity index, what other conditions the patient might have, how unwell they are, might determine whether one treatment may be more attractive over another. So, for example, if you have someone who has multiple comorbidites and autoimmune issues, and maybe depression that’s not well-controlled, a drug like interferon alfa may not be the best drug for that patient.

So, the comorbidities and the performance status can sometimes inform treatments based on the known toxicity patterns of drugs, and then ultimately, patients who are in good shape or in good fitness, cardiovascular fitness, are going to be at less risk inherently for cardiovascular event.

So, it is, I think, really important for physicians and patients to remind themselves that it’s not just about controlling the counts and being on the right medications. It’s also the fuller picture. It’s having a well-balanced diet, an exercise regimen, a sleep, which is underappreciated, and being on top of your comorbidities, whether it’s diabetes, hypertension. These are modifiable cardiovascular risk factors, weight loss, all of these things matter because they all can compound and increase the risk of the events we’re trying to limit, which is cardiovascular thrombotic events.

Katherine Banwell: 

What sort of tests should be done following a diagnosis for polycythemia vera?

John Mascarenhas: 

Well, I believe every patient with polycythemia vera should have a baseline bone marrow biopsy so that one can – first of all, confirm that the diagnosis is truly polycythemia vera, but two, to measure the amount of fibrosis at baseline in the bone marrow.

To make sure there are not any other cells or immature cells that shouldn’t be there, and then to do a complement of testing that’s quite standard of care in 2026, which is karyotyping, looking at the cytogenetics, the chromosome pattern, and looking at mutations beyond the JAK2 mutation, which should be present in nearly every patient with polycythemia vera.

So, I think a bone marrow biopsy and its full complement of testing really should be done.

And then, I think a patient should be risk-stratified appropriately, meaning their cardiovascular risk factors should be assessed and optimized, as we discussed, whether it’s blood sugar, hypertension, cholesterol panel, all these things really do matter to the greater health of the patient. So, all of those things, I think, are important, and we can also talk about whether there’s value in quantifying the amount of JAK2 mutation a patient has, and with some therapies, that can be helpful if you are treating to reduce that value as a surrogate for disease, reduction in disease risk.

Katherine Banwell: 

How does molecular testing affect treatment options and prognosis?

John Mascarenhas: 

Well, sometimes, it affects – well, I think it’s first and foremost important to document in polycythemia vera that one has a JAK2 V617F mutation, or one of its cousins, like an exon 12 mutation, because you really do need that to satisfy the diagnosis. And if you don’t have that, or it’s tested negative, that really questions the diagnosis, and that’s where the bone marrow biopsy really becomes important.

But beyond that, we are now also including sequencing. Sequencing is when you take someone’s blood cells and you look at various mutations beyond the JAK2 mutation and look for other subclonal mutations, and these can have prognostic significance as well, and can factor into, perhaps, discussions with the patient in a shared decision modeling of what therapies might be appropriate.

And then lastly, as I’ve been alluding to, you can also serially follow, from the peripheral blood, not even the bone marrow, necessarily, but just the peripheral blood, and quantitate the amount of JAK2 mutation that is found there.

And this can be helpful and informative when being treated with certain therapies like interferon alfa-2b, ropeginterferon, as a drug that does have the potential to reduce the burden of this mutation as a surrogate for the burden of disease as a readout that’s been correlated in prospective studies with improved event-free survival. And I think that’s maybe one of the most important points, or most compelling reasons why molecular testing can be informative and helpful in the treatment of patients with polycythemia vera.

Katherine Banwell: 

Dr. Mascarenhas, you reviewed several treatment options. What about clinical trials, where do they fit in?

John Mascarenhas: 

Well, I’m a biased individual, because I always think clinical trials still play a role. And not in every patient, but still should be considered. We’re now fortunate, and this wasn’t true when I first started in the field, but we’re now fortunate that we have a number of different therapies at our disposal to tailor treatments.

Whether it’s hydroxyurea, an old but true and tried tested therapy, interferon alfa for those patients that would be applicable for therapy, particularly with the idea of disease course modification, whether it’s ruxolitinib, which is an excellent therapy that addresses a whole spectrum of aspects of polycythemia vera, namely the spleen and symptoms, and even data now that suggests that it can reduce the mutation level, like interferon, that can associate with improved survival. And then most recently, the approval of rusfertide, which is a hepcidin mimetic that can help control the hematocrits in certain patients, allows us to really have a more tailored approach.

But yet, there were still niches, I would say, patients, for example, who do not tolerate those therapies, or who do not attain optimal disease control may be those that would be applicable for a clinical trial option. So, although I’m happy to say our armamentarium has increased and our options have definitely diversified, there are still opportunities for clinical trials to be available for patients that are not succeeding on the available therapies.

Katherine Banwell: 

What sort of questions should patients be asking about their treatment plan?

John Mascarenhas: 

Well, I think first of all, I would say confirming the diagnosis. I have met a number of patients over the years where the diagnosis has not really been actually confirmed. It’s assumed to be polycythemia vera, and often it’s right, but I’m more worried about the times when it’s not right. So, I think confirming the diagnosis, and then where in the risk stratification system they sit.

Are they on a low-risk side, a high-risk side? Do they have mutations that should prompt them to think differently about the disease and the potential for outcomes? And then, what therapies would make sense for them based on their goals? And the goals for some patients may be blood count control and the avoidance of a phlebotomy.

That can be a primary goal for some patients, whereas for other patients, maybe particularly younger patients that have decades ahead of them, the goal might be, how do we change the disease today for an outcome that would be disease course-modifying tomorrow? So, I think understanding where the patient’s coming from, what therapies may provide that, that benefit, I think, is important. So, for example, hydroxyurea is a very good drug, but it’s not a disease course-modifying drug. It doesn’t really reduce the JAK2 mutation level in a significant way.

So, if a young person is looking to look at a therapy or consider a therapy that at least has data in this regard, I think interferon alfa or even ruxolitinib would be therapies I would consider in that patient.

Katherine Banwell: 

The symptoms of PV, as well as side effects of certain therapies, can vary greatly among patients. Why is it critical, then, for patients to share any issues they may be having with their care team?

John Mascarenhas: 

Well, I think it’s important for patients to report their symptoms in a non-biased way. What will often happen is, patients will attribute this symptom or that symptom maybe to advancing age or another comorbidity, or not think it’s related. And I think patients will often be surprised that more of their symptomatology or what they experience in any given day could actually be related to their polycythemia vera. So, it’s important, I think, for the physician to know that. I always encourage them, just report everything and let the physicians and the team sort of sort out what might or might not be related.

Because if you are living with symptoms, A). That’s a poor quality of life aspect, which I think as physicians, we want to address, but B). Maybe more insidious is that patients who don’t feel well ultimately don’t do well. Patients who don’t feel well are less likely to stay active or less likely to stay engaged, might end up taking pain medication if we could address their PV in a different way, or may not recognize symptoms that could lead to other comorbidities.

So, I do think that identifying symptoms, reporting symptoms, and then having those symptoms evaluated and appropriately addressed are really key to treating patients with polycythemia vera. Because our goal is to reduce risk, hopefully extend life, but with that, good quality of life.

Katherine Banwell: 

What symptoms and side effects are most common?

John Mascarenhas: 

Well, a very common one is headaches. Patients will describe, often they can perceive by years the diagnosis of polycythemia vera, itching, particularly aquagenic pruritus, which means you get out of a shower and you could be really itching like crazy. And for some people, it could be life-altering. It can really be upsetting and uncomfortable and even painful for some patients. Bone pain, particularly in the long bones, can be very bothersome, can sometimes affect quality of sleep. Patients can have restless leg syndrome and have trouble falling asleep, or have leg cramps.

It can really be detrimental to their sleep hygiene, and then, of course, this all contributes to fatigue, and patients can have an overwhelming, sometimes profound fatigue, which is more than just, “I feel tired.” And then, I’ll go back to what I said before, patients who are not feeling well and they’re feeling tired are going to do less and move less, and patients who don’t move don’t do as well. So, patients start to become more inactive.

These are, I would say, somewhat common symptoms that you can see, and then you can see other things, like rashes and dizziness and other neurovascular symptoms, sometimes what are called paresthesias, fingertip or toe numbness, and then in some patients, you can get erythromelalgia, which is like, redness and pain, actually, in the palms of their hands or their feet, or particularly in some women, in cold, they can get terrible Raynaud’s, where their fingers can hurt and turn white and blue.

So, these are all potential symptoms that you can see. And then lastly, I would say, across all of the myeloproliferative neoplasms but MPN as well, is left upper quadrant abdominal pain or pressure from an enlarged spleen. That can affect how people move, sleep, their comfort level, their ability to eat a full meal.

People can start to get early satiety, they can get full easily when they’re eating a meal, and that can disturb their caloric intake and lead to weight loss. And that kind of weight loss is not really the kind of weight loss we’re trying to achieve.

Katherine Banwell: 

Dr. Mascarenhas, some of the therapies are self-managed and taken at home. Why is it important to adhere to the treatment regimen?

John Mascarenhas: 

Well, I think true probably of any disease state, but in PV, if one is not compliant with the medications that they’re taking, they may be losing out on the clinical benefit in terms of thrombotic risk reduction by controlling the blood counts or disease modification, by trying to reduce the allele burden, while potentially leaving themselves open to toxicity.

So, I think staying compliant and reporting that to the patient, to the physician, is really important, so the physician is making decisions on treatment that are informed based on the compliance. So, for example, it wouldn’t be a great idea to keep titrating up a medication for poorly controlled counts if the reality is, the patient is not taking the medication appropriately and consistently. Because you might add toxicity without really getting the benefit of the therapy.

Katherine Banwell: 

So, how do you know when it’s time to switch treatment? What should patients be looking for? What should the healthcare team be looking for?

John Mascarenhas: 

Sometimes it’s obvious, sometimes it’s not so obvious. You have to really follow a patient over time. It may not be one point in time. But I would say the things that prompt consideration for changing therapy would be return of symptoms or worsening symptoms while on a therapy would be concerning, or poorly controlled counts while on a maximally tolerated dose of the therapy.

So, if the white count’s going up or the hematocrit continues to need phlebotomies or the platelet count is moving in the wrong direction, or you start to see early blood cells in the blood smear from the CBC that weren’t there before, where the spleen is getting larger, where it was once contained, those could all be elements of progression or change that would warrant reevaluation of the therapy the patient is on and maybe consideration of alternative agents.

Katherine Banwell: 

I’d like to get to some audience questions that we received before the program. Wendy sent in this question. What signs should I look for that may indicate that my PV is progressing?

John Mascarenhas: 

Well, often, it’s not one sign, and I caution patients to get too excited about one data point in time. We look for trends, so, the trend of the white count going up or even actually the hemoglobin, the hematocrit going down.

We try to control the hematocrit, but if we see without anything changing it continuously going down, could also signify perhaps change or evolution of the disease, and then as I mentioned, seeing those early blood cells in the peripheral smear could indicate change in the disease within the bone marrow. That might warrant a repeat bone marrow, or if the patient was really well-controlled from a symptom perspective but is noticing that their energy is getting lower.

They’re getting more fatigued, maybe more short of breath, and they’re not feeling as well. And sometimes, that is vague. It’s not a concrete symptom, but they just generally know that they don’t feel as well as they did. That should be reported, because that could indicate – and maybe not, but that should be evaluated for change in their disease.

Katherine Banwell: 

Better to ask too many questions.

John Mascarenhas: 

I think so.

Katherine Banwell: 

Than not any, yes. Jean wrote, “Does having the JAK2 mutation mean my family members are at a higher risk of developing PV?”

John Mascarenhas: 

That’s a great question. That comes up frequently, and I’ll point out something that is often discussed in the office, which is, patients will ask, “Is this a genetic disease?” The answer is, “Sort of.” It does involve a gene, JAK2, which we all have, but is mutated or altered in the blood cells, so, not in all of your cells, but just in the blood cells, of patients who have polycythemia vera, and that’s acquired in almost every patient, but not every patient.

Almost every patient, they acquired that mutation, and they didn’t acquire it right before they got the diagnosis. It’s often acquired years or decades before, but it takes a long time for the disease to become manifest and obvious. So, these are acquired mutations in the blood cells that drive the disease process. Why patients acquire them is not always obvious, but there is an interesting fact that people who have polycythemia vera are more likely, but not guaranteed, more likely to have a first degree relative who could also have a myeloproliferative neoplasm.

And although, it’s not because they were born with it, it’s inherited in the classic sense. There may be an inherited predisposition to acquiring mutations in certain families, and we don’t always understand why that is, but we can see that relationship.

Now, that does not mean that a patient who has polycythemia vera needs to be worried for and have their kids, for example, tested for the disease. I think anyone who has polycythemia vera should ideally inform their family so their family members can be aware of and make sure that when they go for their routine healthcare visits and their routine blood count assessments, which is routine, that any aberrations or abnormalities in their CBC can be considered in the context of having a family member who has polycythemia vera.

But at the end of the day, the chances that your kids or your brothers and sisters are going to have it is still very low, but it is higher than someone who doesn’t have that mutation. So, they’re not inherited, but they are genetic in the sense that the mutations are acquired in blood cells.

Katherine Banwell: 

Kayla has this question. “I have a big vacation planned. Are there any special precautions related to blood clots when taking long flights?”

John Mascarenhas: 

Also good question, comes up often, and the answer is, not really. I think if you’re planning a trip on a plane, for the most part, there’s nothing that really needs to be done in most – and, of course, this should be discussed with your physician, because there are, case by case, maybe different considerations. But generally speaking, PV patients who are optimized on their treatment, they’re getting their phlebotomies if they need it, their hematocrit’s well-controlled, they’re on an aspirin, and they’ve not had clots in their legs before, for example, or their lungs, they don’t need to do anything specifically different.

Although, I will ask some patients, particularly if they notice swelling in their legs, if they’re sitting for too long, I will ask them to consider wearing a support sock, something that’s restrictive to keep the blood from pooling in the legs.

And I think it’s always a good idea, particularly if you’re on a flight that’s like, seven hours or more, to get up and maybe, every hour or so, maybe walk the aisle, even flex the legs in the plane. Other than that, I don’t really think patients need to do anything beyond that.

Now, the caveat is that sometimes, if we are worried if a patient’s taking like a 12-hour flight and our concern level might be higher for whatever reason, we will have a patient take enoxaparin sodium (Lovenox).

Lovenox is an injection, a subcutaneous injection of an anticoagulant that’s usually taken before boarding a plane and then on the return flight back, and that is an extra layer of anticoagulation in maybe a small subset of patients where the concern level might be higher and the duration of the flight might be longer.

Katherine Banwell: 

Okay, thank you for your responses, Dr. Mascarenhas. And those were all great questions.

Please continue to send them to question@powerfulpatients.org, and we’ll work to get them answered on future programs. How are patients monitored during active treatment? What does follow-up care look like?

John Mascarenhas: 

I think the cadence can depend on the patient and their clinical course, but it’s often checking a CBC. A CBC is a complete blood count, so white blood cell count, hemoglobin, hematocrit, platelet count, and then there are a bunch of indices that are there, and then ideally, a differential with a smear, knowing what cells are making up the white count and if there are any early blood cells.

And then a chemistry panel, which covers the kidney, liver, electrolytes, proteins, and often what’s called the lactate dehydrogenase LDH and enzyme and blood cells, which is a gross and non-specific marker of just cellular activity and can be used in the context of changing blood counts.

Those are basically the routine labs that are taken, and for some patients, particularly early on, their physician might have them come every month to check those until things settle down. And then in other patients, it could be every three to four months, depending on where they are in their clinical course, and I would say a visit with your provider, probably quarterly, to make sure that you feel okay, and that those questions are asked and answered, and that your examined and your spleen is not palpated, it’s not concerning for growth in the spleen or any other physical findings.

So, I would say lab work at some cadence that’s determined by the clinical course of the patient, and then a visit with your care team maybe every four months to five months. And again, it depends on the patient and where they are in their course.

Katherine Banwell: 

You’ve touched on this briefly, but could you talk about the importance of movement and exercise for patients?

John Mascarenhas: 

Well, I think it’s critical, and probably underemphasized, even by myself in the office. I think we’re so concentrated on numbers, what do the blood counts show, and rank your symptoms? All important stuff, but also making sure patients don’t fall prey to being sedentary and do find something, it’s usually something that they like to do. It’s very hard to convince people to move if they don’t like the activity.

But if you can find something that you enjoy, whether it’s with your significant other or your family or friends, whether it’s – a lot of people play pickleball these days, or even just walking, even walking is really good. I think patients who move, in general, will do better than patients who don’t move, and we do live sedentary lives these days. So, I think finding that right mix and that time in the day to get out and move is really critical, and we don’t always put a lot of time emphasizing that.

And it’s also complemented by the other two parts, which is a good diet, a Mediterranean diet is probably the best diet, low in fried foods and low in preservatives and high in fish and vegetables and fruits and olive oils. I think that component is also important. I don’t think there’s a specific bad diet or ingredient that I think is essential. I think it’s really just moderation and common sense cooking, and then sleep, which I’m not even good at myself, but sleep is really important.

You need to get a fair amount of sleep, and for some people, you really need to get that eight hours. It needs to be quality sleep, not sleep where you’re dozing off with the TV on. You’re not really getting good, deep sleep. And often, if you eat right and you move, sleep kind of comes with it, and if you sleep right, you can move and eat. They kind of all go together.

So, those three things, I think are important, and those are patient-driven, for the most part. They’re not really physician-driven, and that’s, in a shared model, that’s also what a patient can bring to the table, is thinking about those things and trying to come up with strategies, because it’s hard to do and hard to initiate, but I think once you do find a pattern that works and sticking to it, I do think that overall, patients feel better, do better, respond better to therapies and generally will do better.

Katherine Banwell: 

Let’s return to self-advocacy. Managing the worry associated with a diagnosis or concerns about the future, even, can lead to anxiety and fear. Why is it important for patients to share any worries they’re having with their care team?

John Mascarenhas: 

Well, I think we live with, and patients who have this disease, in particular, live with a chronic – it’s a chronic illness, and it can be progressive, so there is a chronic fear and anxiety about what could happen next. And I see that every day, and I’m sensitive to it, because you go to your doctor’s office.

It’s a cancer center, so that’s frightening in itself. The name polycythemia vera sounds rather benign, but it is a myeloproliferative neoplasm, which is a term for blood cancers, and there’s a lot of anxiety in those words and having that diagnosis, and the uncertainty of what might happen, or when you show up, what your blood counts can be. And I see the tension that often hopefully is relieved when they see results that are satisfying, and patients can take a deep breath.

So, it’s a very anxiety-provoking disease to have, not know, what will my future be like? I might have a clot, I might have to change my work schedule or my social interactions, and patients who don’t feel well, also, are really compromised in their decision-making in terms of, should I agree to go to that wedding that’s two states away? I might not feel well, and I might not be up to it, and people might not understand, because I might look okay, but I don’t feel okay.

And that’s a particularly frustrating refrain that I’ve heard for two decades, which I really do understand, which is, it’s one thing if you have an illness that makes you look unwell. You will get that feedback, that sympathy, that empathy, that understanding from those around you. But if you look well and don’t feel well, you may not get that back, and that can feel isolating.

And having a disease that’s also a rare disease can make you feel isolated, because you are unlikely to sit down at a cocktail party and find another PV patient sitting next to you. So, people may not really understand what you have, what you’re going through, what your concerns might be, and that might even be your loved ones around you.

So, I think talking about it, and sometimes, depending on the patient or the family, bringing loved ones to the offices so they can hear from the physician or the care team what’s going on can be helpful, because it can be a lot of anxiety and emotional burden of having these types of diseases.

Katherine Banwell: 

Yeah, that’s great advice. Financial concerns can also weigh heavy on patients and families, and while everyone’s situation is different, do you have any advice for where patients can turn to to get financial support?

John Mascarenhas: 

Well, that’s always a tricky one, and it can vary from patient to patient and state to state and facility to facility. Often, cancer centers will have social workers and financial coordinators that can help, and I would ask about that.

So, that’s one possibility, as well as foundational support, whether it’s the MPN research foundation or even the, what was called The Leukemia & Lymphoma Society or Blood Cancer United.

There are foundations and support groups out there that can help direct you for financial considerations and financial toxicity that patients can be incurring, whether it’s just from their PV treatments or their broader medical care.

So, I think bringing that up to the team, the care team, and then finding the right person on that care team, whether it’s the social worker or the financial coordinator, is important in addressing those things. Because if you’re living in a world of financial toxicity, it’s going to be very hard for you to get the other parts of your care in place.

Katherine Banwell: 

Yeah. As we close out the program, what would you like to leave the audience with? Why are you hopeful about the future of polycythemia vera care and treatment?

John Mascarenhas: 

I was going to use the word hope, because I think that’s exactly what it is. I am hopeful, and those of you who know me know that that’s just my personality. I am hopeful and optimistic, because I’ve seen where we were and where we’ve come, and I can see how the science is driving where we will be. So, I am quite hopeful, quite optimistic that we are moving, continue to move into an era where we really are very informed in our treatments, our understanding of the biology, and that’s really changing the treatment paradigms to more of disease-modifying paradigms.

And I’m excited to be a part of that. I hope to be a part of that in the future and bring these treatments not just to my patients, but hopefully, to the global MPN community, because I do think that that’s a reality. That’s what we’re living in, and I think that’s going to be a reality, and I don’t mean in the distant future, even in the near future. So, I am optimistic and I am hopeful.

Katherine Banwell: 

Dr. Mascarenhas, thank you so much for joining us today.

John Mascarenhas: 

My pleasure, thanks for having me.

Katherine Banwell: 

To learn more about polycythemia vera and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.