How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

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What can be helpful for myeloproliferative neoplasm (MPN) symptom management and disease progression awareness? Expert Dr. Andrew Kuykendall from Moffitt Cancer Center discusses education tools and interventions, support resources, and the value of both community oncologists and academic centers in MPN care. 

[ACT]IVATION TIP

“…I think there’s a distinct role for community oncologists and specialists, and really this should be something that works really well together.”

See More From [ACT]IVATED MPNs

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What's Next for Improving Quality of Life in Polycythemia Vera?

What’s Next for Improving Quality of Life in Polycythemia Vera?

 Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

 Can Monitoring Albumin Levels Help Track Myelofibrosis Treatment Success?

Can Monitoring Albumin Levels Help Track Myelofibrosis Treatment Success?

Transcript:

Lisa Hatfield:

Dr. Kuykendall, can you discuss any specific interventions or educational tools that have proven effective in improving symptom management and disease progression awareness for patients facing PV, myelofibrosis, and/or essential thrombocythemia? 

Dr. Andrew Kuykendall:

Yeah, so I mean, I think when we’re talking about symptom management, disease progression, awareness, one of the things I think is very helpful is to have an expert or specialist in your corner. And that doesn’t mean that’s the person you’re seeing every month or every two months or every three months. It means you’ve seen them one time at least, right? And you’ve been able to sit down and ask every question you have, right? It is very important as medicine gets very, very specialized.

Just the amount of information that’s out there on every single one of these disease states is impossible to keep up with. If you’re a generalist, if you’re treating everything, you just can’t be completely up to date on everything that’s going on in myeloproliferative neoplasms when you’ve got a colon cancer patient, a breast cancer patient, a pancreatic cancer patient, anemic patient coming into your clinic.

And so having that specialist in your corner really gives you that resource of asking some of these challenging questions. And I think that more than specific medications, I think what a specialist can provide is that education and that lifeline. So beyond having that specialist in your corner, I think that it’s also helpful to have a network of kind of colleagues or patients that you have as a support group or as a resource group to bounce things off of.

And so there’s a number of patient networks, whether it’s Patient Empowerment Networks or MPN Advocacy & Education International or Facebook groups or whatever it is, right? There’s a lot of different resources where patients can reach out and touch base with other patients or you know look for programs, educational awareness programs that are out there and really become an advocate for themselves and really drive their own care.

So when we’re talking about interventions, educational tools for symptom management, disease awareness, I would say seek out and have a specialist that you see at least one time that you can reach out to with any questions. And also build a network of some sort of patient group where you can access real-time education and resources and also talk with other patients about their experiences.

Lisa Hatfield:

Okay, thank you. So you mentioned having a specialist, and I also have a specialist for my particular blood cancer. I live in an area where we don’t have a multiple myeloma specialist, so I’ve had to go out of state for that. So one of my biggest fears when I did that, I have a very good oncologist locally. I did not want to offend him if I said I wanted to go seek out an expert opinion. Do you have any suggestions for patients who might be afraid to mention that to their community oncologist if they’re seeing a community oncologist? 

Dr. Andrew Kuykendall:

The first thing I’d say is that there’s probably nothing to be scared of. I think that community oncologists generally understand what specialists are there for. Honestly, it takes a bit of weight off their plate. If we spend an hour, hour-and-a-half with our patients talking about everything that comes with a diagnosis of myeloproliferative neoplasms, I think that’s time that, they can spend on other things in their clinic.

And they usually have very busy clinic schedules. And at the same time, I think that this is usually a kind of symbiotic or mutualistic relationship where both people involved or both physicians involved can really play a role and benefit the others. So I’m in Florida, and this is a big state, right? 

For me to get to Key West is going to take a while, for me to get to Tallahassee is going to take a while. Miami is a long way away, but I have patients from Key West and Tallahassee and Miami. And now with virtual medicine, we could do a little bit more virtual, but it still doesn’t replace the seeing the patient in person. And so I would say 80 to 90 percent of my patients have a community oncologist that they see that has my cell phone number or my email address, and is encouraged to reach out to me with any questions, concerns, thoughts. And when we see patients and we come up with treatment plans, I’m usually kind of reaching out to their community oncologists to say, hey, this is what we’re trying to execute, this is the plan.

Do you want us to help with that? Are you able to take it? Let’s work on this together. And so typically this isn’t something to worry a lot about if you really are concerned, I think one way is say, hey, I’d like to see a specialist to talk about clinical trials. And honestly, that’s one of the things that community oncologists are like oh, okay. Absolutely. That’s a great reason to see them. The two most common reasons for a community oncologist to refer someone to an academic center is probably clinical trials or discussion of transplant, right? And so you could say, hey, I want to talk about transplant, or I want to talk about clinical trials, and typically that’ll be a good reason to get in the door.

So yeah, my [ACT]IVATION tip for this is, I think there’s a distinct role for community oncologists and specialists, and really this should be something that works really well together.

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What’s Next for Improving Quality of Life in Polycythemia Vera?

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What are key challenges in myeloproliferative neoplasm (MPN) care, and how do symptoms evolve over time? Expert Dr. Andrew Kuykendall from Moffitt Cancer Center discusses constitutional MPN symptoms, strategies to manage fatigue, neurovascular symptoms, and symptom management. 

[ACT]IVATION TIP

“…we have a variety of symptoms that can be associated with kind of myeloproliferative neoplasms as a whole, as well as each one of these distinct disease entities. And the therapy for each of these differs based on the particular symptom.”

See More From [ACT]IVATED MPNs

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How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

 Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

 Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Dr. Kuykendall. I’d like you to speak to some of the key challenges in managing MPN symptoms. So based on the available treatment options, what are the most challenging symptoms associated with polycythemia vera, PV, or myelofibrosis and essential thrombocythemia, ET? And what are we learning about how these symptoms evolve as the disease progresses? 

Dr. Andrew Kuykendall:

When we think about myelofibrosis, that’s probably the disease we associate with the most clear, distinct symptoms. And patients often have what we call “constitutional symptoms.” And this could be fevers, chills, night sweats, bone pain, weight loss. These are classic symptoms of a disease that is really causing a lot of inflammation, right? And driving a lot of these inflammatory pathways, and these types of symptoms are quite well-addressed with JAK inhibitors, these disease specific anti-inflammatories, of which we now have four that are approved for myelofibrosis in different capacities. But there are more symptoms beyond those. I think when we think about polycythemia vera, we get less constitutional symptoms, although that certainly can be seen in a subset of patients.

But we see more itching is probably the classic polycythemia vera symptom. This itching that is quite challenging, doesn’t necessarily respond to antihistamines, and can be something that’s exacerbated by like taking hot showers or being in hot water. There’s a fancy name for it called aquagenic pruritus. And patients may not even be aware this is related to their disease. I’ve met many patients who’ve come in, who’ve been diagnosed with PV who complain of this challenge with showering or being in hot water, who really never put two and two together.

And sometimes the itching isn’t even described as itching. It feels like fire ants all over their body. And you have patients that are really avoiding right, showering. And so they’re doing it maybe once a week or once every two weeks. And so again, this is a symptom that responds quite well to ruxolitinib (Jakafi), which is approved in the second line here.

Beyond that, I think the biggest symptom across myeloproliferative neoplasms is fatigue. And I don’t have great magic tips for fatigue other than to say what we found out is probably non-pharmacologic interventions are better than pharmacologic interventions for fatigue. Things like just making sure you have good sleep hygiene, getting good sleep, healthy diet, exercise, yoga, mindfulness, resting, these probably are more successful in treating fatigue than any specific drug or agent that we have. And I think that speaks to really a failure on our part to develop better therapies. But certainly it’s something that we’re all very well aware of. And so it’s something we monitor in any of our clinical trials when we are developing agents is how does fatigue change over time? And lastly, I’d say for ET I think you can start to see some symptoms that are more kind of neurovascular.

So things like headaches, migraines, ringing in the ears, or tinnitus, or tinnitus. These can be unique to ET and may predate or preempt the actual diagnosis. So a lot of our young patients that are diagnosed with ET may come to attention of physicians because they’ve been dealing with migraines or headaches or fatigue plus migraines and headaches for a long time. Then lo and behold, blood work shows that they have a very high platelet count.

And so over time, I think when we look at these symptoms, certainly there can be waxing and waning of some symptoms, response to therapies, lack of response to therapies. But if the symptoms really do change rapidly, which we don’t see that often, oftentimes this can accompany a change in the disease, right? And that’s the time to go in and see if something’s changed. Sometimes reevaluate the disease status. And so my [ACT]IVATION tip for this is that we have a variety of symptoms that can be associated with kind of myeloproliferative neoplasms as a whole, as well as each one of these distinct disease entities. And the therapy for each of these differs based on the particular symptom.

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Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

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How are emerging polycythemia vera (PV) treatments addressing quality of life? Expert Dr. Andrew Kuykendall from Moffitt Cancer Center discusses disease control versus quality of life issues for PV patients and shares updates about rusfertide and hepcidin mimetic clinical trials. 

[ACT]IVATION TIP

“…there’s a lot of things that factor into a suboptimal quality of life for patients with PV. And we need to think about all of those as we try to chip away and make patients’ quality of life as good as possible.”

See More From [ACT]IVATED MPNs

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What’s Next for Improving Quality of Life in Polycythemia Vera?

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Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Dr. Kuykendall, since current treatments may help control polycythemia vera but don’t significantly improve symptoms, what steps are being taken to develop new therapies that not only control PV, but also improve patients’ overall quality of life? 

Dr. Andrew Kuykendall:

Yeah, so right now the therapies we have for polycythemia vera essentially the main goal is to reduce as I tell patients, to reduce the things that could kill you, right? To reduce the risk of thrombotic events, cardiovascular events, strokes, blood clots, heart attacks, things like that. As we know that that is a huge issue for these patients that are at increased risk for cardiovascular events.

So we do that with a variety of different strategies, but I think increasingly what we’re realizing is we need to make a primary focus of treatment being on improving and maximizing quality of life. And this is something that really we should be thinking about across all malignancies. But specifically polycythemia vera (PV), where this is a disease that if we are able to avoid some of these cardiovascular events, patients have a very good quantity of life expected with their disease.

So they may live with their disease for 15, 20, 30 years. So if that’s the case, we really need to be thinking about how we can do that as best as possible, right? We’re talking about a third of your life living with this disease. And so we need to do that in a quality way. So agents like ruxolitinib (Jakafi) that have been approved for polycythemia vera in the second-line setting.

Ruxolitinib is known that it is improving some of the disease-related symptoms that come with PV, fevers, chills, itching, night sweats, bone pain really does help with those things. But I think that we can move beyond that. And we’re developing agents like rusfertide. Rusfertide is the hepcidin mimetic that is aiming to reduce the amount of phlebotomies patients need. And for me, that’s important in a variety of ways.

One if you don’t need to get phlebotomies all the time, you’re not tied to the healthcare system, right? Nearly as much. And that could be a huge dissatisfactor. And so at the same time, getting a phlebotomy is not that fun either. It requires going in and sitting there getting blood drawn, you may get lightheaded, fatigued that comes with that.

So eliminating that aspect of negative quality of life. At the same time, we’re starting to see with rusfertide whispers that it may help with some of these symptoms that may be related to iron deficiency. Things like brain fog, concentration issues, fatigue. And so if we can help a little bit with that aspect of things too, man, we could start to kind of, you know, chip away at some of the quality of life issues that are ongoing.

And then down the road, I think some of these JAK2-specific inhibitors may have the continued ability to modify the underlying disease. And certainly that’s a huge goal, right? If we can actually start to get true responses really get at the core of the disease to get the disease to go away. And I think that ultimately that will hopefully result in better quality of life as well. So, at the same time, I think my [ACT]IVATION tip for this question is that there’s a lot of things that factor into a suboptimal quality of life for patients with PV. And we need to think about all of those as we try to chip away and make patients’ quality of life as good as possible.

Lisa Hatfield:

Okay. Thank you. And is there any hope of any of these newer therapies being of limited duration, or are all of them continuous therapy? Because I know as a patient myself, that quality of life is impacted by knowing that I’ll be on therapy forever, some kind of therapy forever. Any hope for that? 

Dr. Andrew Kuykendall:

Yeah, so certainly with some agents there is hope for that. So some of the agents I referenced, ruxolitinib, rusfertide, these are agents that probably are, are going to be continued therapy. We always call it indefinite, right? As long as we think that the benefits outweigh the risks, we continue that. If we stop those, typically the reasons we’re using them, those come back quite quickly.

But I would say it’s not necessarily the case with agents like interferon. So interferon is an agent that’s less associated with symptomatic improvement, although we do see it in a subset of patients, it’s more associated with the ability to potentially modify the underlying disease. And so what we’ve seen with interferon is that we can measure patients’ JAK2 allele burdens, the number of cells that have the JAK2 mutation that drives the disease.

And in patients that are on interferon for 2, 3, 4 years, we see the number of cells that have the JAK2 mutation go down over time quite consistently. And even in the case that in some patients it goes less than 10 percent or to a level, we really can’t pick it up with our standard testing. And my experience with that is we can actually stop interferon in some of these patients for a pretty extended period of time.

So we have patients where we stopped for one or two years with blood counts that remain quite well-controlled, patients feeling well. In time, we might have to restart it as things start to to pop up, but I think that we are starting to get to these kind of at least treatment reductions, dose reductions where we can spread things out, but also kind of brief treatment interruptions where we get this kind of treatment-free period that certainly can be attractive to some patients.

Lisa Hatfield:

Okay. Thank you. And I’ll just do a quick shoutout to physicians like yourself who deal primarily with MPNs or work a lot with MPNs, that if a patient is watching this and doesn’t have somebody who really specializes in MPNs, everything you’re talking about, clinical trials, it might be helpful even to just get a consult or what I call an expert or second opinion on how to manage your MPNs. So anyway, thought I’d throw that out there. Thank you.

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Can Monitoring Albumin Levels Help Track Myelofibrosis Treatment Success?

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How might albumin levels help guide myeloproliferative neoplasm (MPN) care? Expert Dr. Andrew Kuykendall from Moffitt Cancer Center discusses research on albumin monitoring and treatment for myelofibrosis and polycythemia vera, treatment response, spleen size, and proactive patient advice. 

[ACT]IVATION TIP

“...monitor your lab work. Use everything at your fingertips to kind of get a sense for how something’s working. So whether it’s albumin level or spleen size or symptoms…really take everything into account to know if the treatment’s working for you.”

See More From [ACT]IVATED MPNs

Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

 How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

Transcript:

Lisa Hatfield:

Dr. Kuykendall, your research shows that changes in serum or blood albumin levels are linked to better survival in myelofibrosis patients treated with ruxolitinib (Jakafi). How could this information help doctors monitor patient progress and adjust treatment plans over time? 

Dr. Andrew Kuykendall:

Yeah, so this is a bit of a passion project for me that I spent a few years looking at. Want to give a little bit of a backstory. Ruxolitinib is a JAK inhibitor that is approved for myelofibrosis as well as polycythemia vera. And what it’s able to do, the way to think about,  it’s like a disease-specific anti-inflammatory. And so the disease itself kind of ramps up these inflammatory pathways, ruxolitinib blocks those inflammatory pathways, and it improves patients’ symptoms.

It’s also been able to show kind of reduction in splenomegaly or enlarged spleen for patients, but it doesn’t really get rid of disease, right? So we’d like it to be better than it is. We’d like it to get rid of the bone marrow disease and get so-called complete response or complete remission. But we don’t see that.

However, we know that it helps a lot of patients. And I think that the challenge is knowing when it’s helping someone and when to continue it versus when should you consider alternative options? And we’ve really struggled with kind of coming up with an objective definition of how to kind of define treatment success or failure with this. And so the best data we have supports patients that have a spleen response tend to have better survival than those patients that don’t have a spleen response.

However, we’re not routinely imaging patients’ spleens in the clinic, and many patients it’s difficult to monitor their spleen kind of growth or reduction in size on exam. And so this not isn’t always the most feasible way to monitor kind of response to therapy. And symptoms…they can be variable.

Certainly if patients are feeling better, that’s a great thing, but a lot of things factor into symptoms. And so kind of on a week to week, month to month, visit to visit basis, that may be challenging. And so I was very interested in looking at albumin, which I think kind of factors into a lot of things regarding health. So patients that are more nutritionally optimized have better albumin levels, patients that have less inflammation just in general have better albumin levels and patients that are eating well have better albumin levels.

And actually I kind of harkened back to a trial that was published on ruxolitinib-treated patients that showed that patients who got ruxolitinib, their albumin levels rose over time. And that was intriguing to me, which was the thought was, okay, well if that happens, if this is something specific to ruxolitinib, does this… Is this something that that can actually define those patients that do well? 

Does this represent someone who’s able to eat better and be more nutritionally optimized? Does this represent someone who’s getting a really good anti-inflammatory benefit from ruxolitinib? And so we looked at our patients and actually combined our data sets with an Italian data set as well, and showed that those patients on ruxolitinib whose albumin either stayed the same or improved, actually derived a survival benefit compared to those whose albumin levels stayed the…or whose albumin levels decreased over time.

And that was unique to ruxolitinib when we looked at patients who weren’t treated with ruxolitinib, who had myelofibrosis, we didn’t see the same pattern. And so the reason I think this is interesting and potentially clinically relevant, is that we’re always looking at albumin levels. The albumin is involved in kind of the complete metabolic panel or the CMP that we routinely are getting on patients.

And so this is something that’s very available to physicians as they’re watching someone on ruxolitinib. And so they can look and say, oh, look from when they started till now that albumin level has gone up by a certain amount. I think this is someone who actually I do feel comfortable that they’re doing well. And alternatively, maybe it’s someone who’s on ruxolitinib whose albumin level continues to decline. And you may say, think, you may think, hey, this is maybe symbolic of a treatment that may not be doing enough right now.

Lisa Hatfield:

Okay. Thank you. And do you have an [ACT]IVATION tip for that question? 

Dr. Andrew Kuykendall:

I think my [ACT]IVATION tip for this one is monitor your lab work. Use everything at your fingertips to kind of get a sense for how something’s working. So whether it’s albumin level or spleen size or symptoms. I think the [ACT]IVATION tip here is really take everything into account to know if the treatment’s working for you.

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Staying [ACT]IVATED: My Journey with Myelofibrosis and the Power of Proactive Care

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As an avid climber who made healthy choices, Jason never envisioned he would be diagnosed with myelofibrosis (MF). Watch as he shares his path to diagnosis, challenges with finding a good fit for an MF specialist, and advice for optimal care. 

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Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

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 Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 

 Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Transcript:

Being informed and proactive is crucial in managing myelofibrosis, a relatively unknown blood cancer. My name is Jason, and I was diagnosed with myelofibrosis at age 46. Being an avid climber and overall a healthy person, the news came as a huge shock. Now, with my experience, I want to share my story to help others who might be experiencing unusual symptoms, just as I did. My desire is to raise awareness and to stress the importance of early detection, ultimately aiming to improve outcomes for all those affected by myelofibrosis.

Even though I didn’t realize it at the time, my myelofibrosis symptoms began with fatigue and abdominal pain. I dismissed the symptoms and didn’t see my doctor until I noticed that my skin had become strangely itchy. My doctor ran a full blood panel and referred me to an academic cancer center. I was fortunate that I lived in the same city, but it made me think about what would have happened if I lived in a rural area. I received further testing followed by my diagnosis of myelofibrosis.

I was referred to a doctor who specializes in treating myeloproliferative neoplasms (MPNs). I met with the doctor but wasn’t sure that she was going to be the best fit for me. I’m a naturally curious person, and she didn’t seem open to answering a lot of my questions. After connecting with some other myelofibrosis patients in an online support group, I decided to meet with another specialist to see if I could find a better match for my care. I was fortunate to find a good match with the next MPN specialist. I’ve been under his care since, which started with active surveillance followed by an autologous stem cell transplant. My transplant was incredibly challenging, but my myelofibrosis support group was always there for me with words of support and taking action to support both my wife and me during my treatment journey.

Following my experience with myelofibrosis, I’ve become dedicated to educating others about its unique symptoms to raise awareness of this type of blood cancer. Like me, you can empower yourself by connecting with patient advocates and support groups that can assist you in navigating your healthcare journey.

Stay [ACT]IVATED in your myelofibrosis care with these tips:

  • Ask your care team questions to learn about the status of your treatment options, and what to expect during and after treatment.
  • Join a patient support group to offer and to receive emotional support. This was a saving grace for me and my family.

These actions for me were key to staying [ACT]IVATED in my myelofibrosis care.

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Holistic Health Strategies for MPN Patients: Integrating Nutrition, Exercise, Mental Health, and Preventive Care

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Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses ways for MPN patients to make efforts toward optimal MPN, overall health and patient well-being, and proactive patient advice. 

[ACT]IVATION TIP

“…as they are seeking the best care for their MPNs, they should also seek the best care for their global health like in nutrition, exercise, psychological health, cardiovascular risk reduction, primary cancer screening, and prevention, all the preventative healthcare vaccination. So all the global health interventions that improve your health are absolutely necessary for patients with MPNs.”

See More From [ACT]IVATED MPN

Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

 Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Can you discuss any specific interventions or educational tools that have proven effective in improving symptom management and disease progression awareness for patients facing PV, myelofibrosis, or ET?

Dr. Abdulraheem Yacoub:

Patients who live with MPNs are in this for the long run, and this is a chronic health challenge they would have to endure over the rest of their lives. And having access to tools that improve their health in general is instrumental. So as we advocate always for good nutrition in any other disease all the concepts that apply to healthy living apply here very vividly. So healthy nutrition is important. We like to involve a dietician early on in our patients, although there is no specific diet that is uniquely specific for MPN, but there are certain dietary interventions that are globally of benefit to patients to be healthier. We also advocate for mental health and psychological health, and we involve our oncology psychologists to be partners with us on patients’ care and to tackle the challenges that they have to cope with as they live with a chronic cancer.

We also endorse exercise as a method of improving functionality, improving strength, improving emotional well-being, and also as a tool to battle fatigue and musculoskeletal pains. So really many of the concepts that stand correct to everybody with any chronic disease stand correct here, but the impact in MPN is a lot more profound, because those patients will live with the diseases for a long time. And all the tools that you have to improve your global health will also improve your cancer health. We’re also very strong advocates of primary prevention. So patients with MPN are at an adverse cardiovascular risk and interventions that improve cardiovascular health such as exercise, maybe seeing a cardiologist management of cardiovascular risk factors like hypertension, diabetes, hyperlipidemia can also improve the patient’s risk and reduce their MPN risks by lowering their other cardiovascular risks.

We also advocate for primary cancer prevention and screening. So patients with MPN should be also undergoing more meticulous cancer screening and prevention in order to be able to manage their…in the case of second primary malignancies to be able to address that a lot earlier in the course of those diseases and improve the patient’s odds of living a longer and healthier life. So really my [ACT]IVATION tip for patients is that as they are seeking the best care for their MPNs, they should also seek the best care for their global health like in nutrition, exercise, psychological health, cardiovascular risk reduction, primary cancer screening, and prevention, all the preventative healthcare vaccination. So all the global health interventions that improve your health are absolutely necessary for patients with MPNs.

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Navigating Disease Progression in MPNs: Strategies for Patient and Care Partner Awareness and Monitoring

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Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub explains MPN disease progression, the difficulties with assessing MPN progression, factors that play into determining progression, and proactive patient advice for when MPN re-evaluation might be needed.

[ACT]IVATION TIP

“…be able to be aware of the baseline and any change of baseline and when do you draw the line where you actually need to re-stage or re-evaluated the disease all together and decide if the patients have closed the line or have transformed or progressed that they need different care.”

See More From [ACT]IVATED MPN

Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

 Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Dr. Yacoub, how do you and your colleagues enhance patient and caregiver understanding of disease progression in all of the main MPNs, polycythemia vera, myelofibrosis, and essential thrombocythemia, and what strategies can be implemented to monitor and respond to changes in the disease?

Dr. Abdulraheem Yacoub:

The concept of disease progression is an evolving field and even among experts is still something we debate a lot on how to better communicate that and how to better define that. So it is a challenge even for the most skilled physicians who manage patients with MPNs. However, we all understand what progression is or, and we all understand when things are going great. It’s very much obvious that patients are doing well. And when patients are not doing well there often it’s because they’re progressing.

So we have a vague understanding of the concept of what is going well, what is not going well, but to actually be able to be granular and describe what exactly that means. There’s a lot of uncertainty and vagueness in the field. But my two cents on this is that patients should be aware of what is their normal and was, is their usual abnormal symptoms, their usual abnormal findings in the blood and the trends in how their blood, and their symptoms are evolving over time.

And when there is a sudden change in an adverse or unfavorable way in the symptoms or the blood numbers, that this is definitely a trigger to evaluate for progression. I think being self-aware and being educated about what to expect with your disease allows you to be more capable of detecting when disease is progressing. We also try to explain to patients what the range of progression could sound like. It could be a change in symptoms, could be a change in labs, a change in physical exam, a change in how the bone marrow biopsy looks like, acquisition of new DNA errors and mutations.

So there are many different forms of progression. But as long as patients understand the science, as long as we can communicate to patients what is the usual path of normal or expected outcome of the disease and what’s not expected and what’s not normal and what’s above normal, and the patients and their physicians can pick that up as it happens, that’d be the best way to the best [ACT]IVATION tip for those patients and providers is to be able to be aware of the baseline and any change of baseline and when do you draw the line where you actually need to re-stage or re-evaluate the disease all together and decide if the patients have crossed the line or have transformed or progressed that they need different care.

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Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

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Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses how he approaches shared decision-making with patients, benefits of shared decision-making, and how to be proactive in elevating your own care.

[ACT]IVATION TIP

“…you have to understand that your cancer is a disease you’re going to partner with for the rest of your life. And the more skilled and knowledgeable you are, the more you can get the best care you deserve and advocate for yourself and be able to communicate your challenges with your doctors and be a participating partner in your own care.”

See More From [ACT]IVATED MPN

Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 Holistic Health Strategies for MPN Patients

Holistic Health Strategies for MPN Patients: Integrating Nutrition, Exercise, Mental Health, and Preventive Care

 Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their myeloproliferative neoplasm? Whichever one that may be.

Dr. Abdulraheem Yacoub: 

Thank you. So I perceive my relationship with my patients as a partnership. I try to teach them, but I also learn a lot from them. Some patients keep up with newsletters and FDA approvals and press releases as much as, or better than any of the physicians that we work with. So, I think the more informed the patient is, the more able they are to contribute to their own well-being and to the improvement in healthcare. Many healthcare projects in the U.S. are led by patients and patient advocates. So the more involved patients are, the more aware they are of the moving parts in the field, the more they can contribute to their own improvement and their own health.

So my advice to patients is to be as involved as they can. And these are chronic cancers they will live with for the rest of their lives. So my [ACT]IVATION tip for these patients is that you have to understand that your cancer is a disease you’re going to partner with for the rest of your life. And the more skilled and knowledgeable you are, the more you can get the best care you deserve and advocate for yourself and be able to communicate your challenges with your doctors and be a participating partner in your own care.

Lisa Hatfield:

So when it comes to shared decision-making, is it very common for you to work with the patient and their local general oncologist for shared decision-making, or do you typically have a patient come talk with you, and then the patient takes the information back that they’ve learned from you to their local oncologist?

Dr. Abdulraheem Yacoub:

There are many phases and many methods of how we can collaborate with patients and their caregivers and their local providers and so forth. And this carries different forms. We see this a lot recently with the FDA approval of interferons and physicians who are in practice have not been trained to use that, and they all are interested in applying the new technology and using the new medicines in their patients. And they seek us. They actually send patients for us to co-manage so that they can learn from the process. So they’re very involved and they’re very curious and they want to learn the new medicines and how to use them and how to apply the new knowledge and how to interpret molecular results and so forth.

Everybody has a role to play. Community physicians who treat patients have a key role at delivering care to patients, patients also have a role at learning this. And our job is to teach patients and their doctors how to raise their levels to be able to to speak the same language, to be able to understand the same knowledge and to be able to contribute and make informed decisions. The more informed the patient, the more they can contribute and the more they can be active partners in the healthcare.

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Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

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Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses common challenges in managing MPN symptoms, goals for improving patient quality of life, and proactive patient advice for optimal care. 

[ACT]IVATION TIP

“…you should be aware of your own health and your own health challenges and your symptoms, and you should bring to your doctor what is it that you’re bothered by. Some symptoms are a lot more challenging than others, like fatigue, fatigue, and bone pain. These are symptoms that are very resistant to many of our interventions. But that doesn’t mean we shouldn’t keep trying, and we should have an open communication between the patient and their doctors regarding methods to improve that, whether it’s drugs or non-pharmacological interventions or others that we can try for these patients.”

See More From [ACT]IVATED MPN

Related Resources:

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

 Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

 Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, I’d like you to speak to some of the key challenges in managing symptoms based on the available treatment options. What are the most challenging symptoms associated with the different classic MPNs, PV, MF, and ET?

Dr. Abdulraheem Yacoub:

You know as we address patients with blood cancers ET, PV, and myelofibrosis, there are multiple priorities in these patients. One, we want patients to be safe and protected from the disease by lowering their blood counts to the right goal. For myelofibrosis, we want to achieve disease control by JAK inhibitors and reduction in spleen and consider curative therapy with bone transplantation. So the goals of care are multifaceted and multi-layered in these patients, but we always forget about the quality of life. So patients with ET, PV, and MF live with a high burden of constitutional symptoms that are non-relenting and they impact patients’ quality of life. They impact their psychological health and their physical health. They impact their personal lives and their professional careers. And we try as much as possible to mitigate that impact on patients’ lives and quality of life with the tools that we have. Our tools are imperfect.

Every time I go over all the things we can do, we can use hydroxyurea (Hydrea), interferon, JAK inhibitors, and then that’s it. And then we stop. And there’s really, we don’t have as many tools as we want. Of course, the field is getting better, we are getting better tools to help our patients, but we should always keep patients’ quality of life at the center point of healthcare. In addition to getting the objective metrics controlled, the counts in the right range, and the spleen the right size, we also need to make sure that what we’re doing to patients is also adding quality to their lives.

And my [ACT]IVATION tip for patients is that you should be aware of your own health and your own health challenges and your symptoms, and you should bring to your doctor what is it that you’re bothered by. Some symptoms are a lot more challenging than others, like fatigue, fatigue, and bone pain. These are symptoms that are very resistant to many of our interventions. But that doesn’t mean we shouldn’t keep trying, and we should have an open communication between the patient and their doctors regarding methods to improve that, whether it’s drugs or non-pharmacological interventions or others that we can try for these patients.

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Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

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Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub shares updates about additions in MPN treatment options, expansions in combination treatment options, and patient advice for locating clinical trials. 

[ACT]IVATION TIP

“…keep up with the field through reliable sources of information that gives updates on clinical trials or by keeping up with clinicaltrials.gov website, which is a federally funded website that lists active and enrolling trials at any part of the country. And patients can look up their state or ZIP code and find clinical trials that are available to them in that area.”

See More From [ACT]IVATED MPN

Related Resources:

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

 Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, can you speak to active clinical trials for patients facing MPNs that you’re excited about, and are there any potential drug combinations that could enhance the efficacy of existing treatments?

Dr. Abdulraheem Yacoub:

The field of myelofibrosis is ever-evolving and never boring. We have had a lot of revolutionary projects and programs over the last few years. So we’ve had a standard of care therapy that is single-agent oral pills or JAK inhibitors for nearly a decade now, but in the last five years, we’ve had three other approved oral agents. So really we’ve quadrupled our options in the last four years of oral agents, and that’s really great, but not good enough.

So we’re experimenting with combinations. There have been at least three large clinical trials with combinations completed, and many, many ongoing trials that are accruing. So for patients with newly diagnosed myelofibrosis, there’s many options of enrolling into a clinical trial program to access combination of cutting edge agents that can provide higher quality responses and higher quality benefit to these patients.

There are many clinical trials in the second-line setting after patients progress or after first-line therapy fails them. So there are agents that are of benefit for control of myelofibrosis beyond the first-line therapy, and now there’s also clinical trials with agents that can improve patients’ quality of life or symptoms or low blood counts. So there’s really a lot of evolving and powerful options that patients can qualify for a very exciting field of research. It is an overwhelming task to keep up with that even experts in myelofibrosis get overwhelmed with the evolving field of clinical trial portfolio for myelofibrosis.

My [ACT]IVATION tip for patients is to keep up with the field through reliable sources of information that give updates on clinical trials or by keeping up with clinicaltrials.gov website, which is a federally funded website that lists active and enrolling trials at any part of the country. And patients can look up their state or ZIP code and find clinical trials that are available to them in that area. So in-patients can actually take charge in this. And that’s my activate tip for them, is to be proactive at seeking these options.

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Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

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How can barriers to optional myelofibrosis care be overcome? Expert Dr. Abdulraheem Yacoub discusses common barriers that patients encounter, support and financial solutions to overcome barriers, and proactive patient advice. 

[ACT]IVATION TIP

“…seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

 How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Yacoub, in the context of myelofibrosis, what are the key barriers to accessing optimal care treatments, including access to trials, particularly for patients in historically marginalized groups?

Dr. Abdulraheem Yacoub:

There are many barriers actually that I can see and I witness every day. One is the actual initial presentation. So a lot of patients have had objective abnormalities and symptoms and exam and laboratory results, and it took them an extended period of time to even reach a hematologist oncologist. And then even after they do that, the next barrier is the precision in making a diagnosis. Many patients make it to the doctor, but the diagnosis has not been refined or readdressed correctly. The diagnostic workup was not up to bar, and patients are not classified or diagnosed correctly. And then once the diagnosis is made correctly, the access to therapeutics is also a challenge.

So some of our therapeutics that are cutting-edge are actually very pricey. They require a lot of support and financial aid and financial assistance and involvement in the complex healthcare dynamics, including specialty pharmacy and pharmacists and social workers. And the more resources patients have at hand, the more resources their physician has at hand, the better access they will have to these drugs. So that’s another barrier is that this is not available to all patients equally and universally. And then beyond the standard approved therapeutics, clinical trials are also provided in centers of high volume in MPNs, and those are not distributed equally throughout the country. So there are regions in the country where patients have to drive many hours to get to the next MPN center of excellence.

And because MPNs are rare diseases, trials are not going to be open at large in all centers. So that’s another level of hardship and barrier to care for these patients. However, this should not really encourage a culture of lack of interest or complacency by doctors or by patients to accept status quo. I think my [ACT]IVATION tip for patients is that you should seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.

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How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

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How can myelofibrosis be better identified and referred by PCPs? Expert Dr. Abdulraheem Yacoub discusses strategies for rural myelofibrosis care, partnerships between hematology centers and community oncologists, and patient advice for optimal care. 

[ACT]IVATION TIP

“…to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

 Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Given how rare myelofibrosis is, how can primary care physicians in rural areas be better equipped to recognize and refer patients with suspected myelofibrosis?

Dr. Abdulraheem Yacoub:

Myelofibrosis is a rare malignancy that belongs to the family of myeloproliferative neoplasms. These cancers present with abnormal blood counts and increased constitutional symptoms. Many of those symptoms are not specific to myelofibrosis, and many of the laboratory abnormality is also not specific for myelofibrosis. So for a primary care physician, it might be a challenge to actually make that diagnosis or recognize the unique presentations of myelofibrosis. I think what primary care physicians should be very savvy about is to be aware of abnormal labs or abnormal symptoms and to try to refer the patients for a hematologist for initial diagnostic workup.

Further classification or the complexity of making the classification in the diagnosed myelofibrosis is probably above what a primary most primary care physicians are able to do because that would require molecular testing and a bone marrow examination and maybe imaging studies. And for that these will require the expertise of a hematologist oncologist. And I think the role of the primary care physician is to get the patient with the right trigger or the right abnormality to the specialist. And that will be a successful achievement from the primary care physician. And then what happens after that would probably require more involvement of the hematology oncology team and additional workup and referral to a tertiary center afterwards.

Lisa Hatfield:

I do have one follow-up question to that also. I have a type of blood cancer, not an MPN, but if I lived in a rural area, I would want to know, okay, my primary care physician referred me on, I’ve seen a hematologist, but I have a local oncologist, a general oncologist in my rural area. Would the specialist require me to go back and forth constantly to be seen in a different facility or is it possible that I could be seen by my general oncologist?

Dr. Abdulraheem Yacoub:

So there are many forms of partnership between centers that provide tertiary care along with the community oncologists and hematologists. And there are so many forms of how this can be conducted. And the main mission for us doctors is to provide the best care for the patients and also to provide good communication with their care team locally. And that really is a duty for every individual and all the parties involved in patient care.

So we would love to provide the best care for patients, but also through involving their local providers. This could be a one-time opinion with a tertiary center with a management plan that can be passed on to their local doctor. It could be a collaborative long-term relationship where patients have to see the tertiary center once a year and then their plan is updated every year with specific instructions and guidance to their local doctors. Or it could require more involved care with the tertiary center, especially if there’s a clinical trial that is needed or research options that are not available locally or therapeutics that are of high risk that cannot be delivered locally. Unfortunately, in some occasions, patients will have to drive or commute to the tertiary center on a regular basis.

Lisa Hatfield:

So there are many forms of such collaboration that happen, depends on the options, the treatments, and the needs.

Dr. Abdulraheem Yacoub:

My [ACT]IVATION tip is to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.

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Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

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How can specialized myelofibrosis care be enhanced for rural patients? Expert Dr. Abdulraheem Yacoub from the University of Kansas Medical Center discusses solutions to bridge gaps in myelofibrosis care and patient advice for improving self-education and self-awareness.

[ACT]IVATION TIP

“…seek knowledge through the online reliable platforms of education, try to enrich their experience and their awareness of their disease and their surroundings, and also increase their awareness of specialties and expertise in the region where occasionally they might have to travel or seek attention from an MPN center of excellence in order to seek the care that they deserve and they need.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

 Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Yacoub, many patients live far from hospitals or clinics with hematology specialists leading to difficulties in accessing specialized care. What are the main barriers in addition to just the distance to accessing specialized care for myelofibrosis patients in rural areas?

Dr. Abdulraheem Yacoub:

Thank you very much, Lisa, for this. And access to healthcare is really a global concern in rural towns. And access to physicians in many subspecialties can be a challenge. It becomes an even more of a challenge in patients with rare diseases and rare cancers. So, MPN being a uniquely uncommon disease, it’s a disease that impacts younger, productive individuals who also have to have, maintain their work’s and family duties. It does compete with other priorities. So this compounds the access challenge for patients. Adding to that, is that even in patients with access to healthcare centers that are more sub-specialized, there are fewer MPN centers of excellence that can provide the service that patients deserve.

So this really compounds the challenge for patients with MPN. And this hopefully can improve with further improving access virtually to those patients or to use resources or platforms for self-education and self-advocacy that can connect patients to the experts that they require. So my [ACT]IVATION tip for patients is to seek knowledge through the online reliable platforms of education, try to enrich their experience and their awareness of their disease and their surroundings, and also increase their awareness of specialties and expertise in the region where occasionally they might have to travel or seek attention from an MPN center of excellence in order to seek the care that they deserve and they need.

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Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

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How can myelofibrosis patients engage in shared decision-making? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses ways for patients to collaborate with healthcare providers to determine the optimal treatment approach for their care.
 

[ACT]IVATION TIP

“…patients can spend a few minutes preparing for appointments and find it very helpful. And I encourage patients to write down or type down questions and bring them with them, bring them with the patients to their medical appointments.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

 Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Grunwald, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their myelofibrosis?

Dr. Michael Grunwald:

I love it when patients come to me with a list of questions where they’ve thought about their disease since the last visit. And they have a number of ideas, and usually the ideas and thoughts that they have are very good. Sometimes they’re a little bit out there because they spoke to somebody who had a, who had a funny idea, or they talked to somebody whose disease was different from theirs, or they found something online, that was funny and it’s all okay.

So I like answering the hard questions, the easy ones, the ones that I think are out there and not pertinent to the patient’s disease. But I love it when patients have empowered themselves by learning and by gathering information. And they bring the list of questions, whether it’s on their phone or iPad, or whether it’s just written down on a sheet of paper and we go through them together. So I think that that’s really a way that patients can empower themselves. My [ACT]IVATION tip for this question is, patients can spend a few minutes preparing for appointments and find it very helpful. And I encourage patients to write down or type down questions and bring them with them, bring them with the patients to their medical appointments.

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Managing Myelofibrosis for Patients Living Far From Specialists

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Myelofibrosis expert Dr. Michael Grunwald from Levine Cancer Institute discusses strategies for patients living far away from specialists, how often blood checks should be performed, and proactive patient advice.

[ACT]IVATION TIP

“…partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

 Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

 Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Transcript:

Lisa Hatfield:

Dr. Grunwald, what strategies do you recommend for managing myelofibrosis patients who might live 200 or 300 miles away from the nearest specialist? And how often, if you are helping a patient who has a local oncologist and you’re seeing them as a specialist, how often do you want to see those patients?

Dr. Michael Grunwald:

So I agree that the partnership is very important. So I enjoy seeing patients who live far away and I enjoy partnering with their local hematologists-oncologists and sometimes their primary care physicians. So I think that, you basically gave it, it’s great advice for patients in rural areas to seek out these partnerships. But it’s hard for patients to come here frequently. Let’s say a patient with myelofibrosis might need blood checks monthly. It’s a long distance to drive 200, 300 miles. I’m not even sure if it’s a drive or a flight or a train trip or bus trip. It can be very challenging. And not everybody has a car. Not everybody has somebody to drive them if they don’t drive. And really a lot of challenges, gas money, so forth. So depending on how sick a patient is, we will tailor the visits.

If I think that a patient is doing reasonably well, then I might see the patient once or twice a year. Sometimes telehealth, sometimes in person, if I’m very worried about someone, I might encourage them to come a little bit more often than that so I can get some hands-on monitoring and do a physical exam in addition to just speaking with the patient. So, I would say it varies, but there are many myelofibrosis patients who check in with me, either in-person or telehealth, if they live in North Carolina as little as once a year, whereas they might be getting their blood checked and seeing their local physician as frequently as every month. 

Lisa Hatfield:

If you do have a patient that you’re seeing once or twice a year and they’re interested in a clinical trial that’s at your center, would that require that patient to relocate to your center for a period of time to be part of that clinical trial?

Dr. Michael Grunwald:

Unfortunately, most of the time, yes. Because trials, especially during the first few weeks and even sometimes the first few months of care on a clinical trial, the trials require very close observation and frequent visits. And depending on the phase of the study, the purposes can be a little bit different. But a lot of that frequent monitoring has the patient’s best interest in mind, meaning the safety of the patient. So patients are being watched for side effects while they’re on an experimental drug.

And we’re making sure that we’re not causing more harm than good with the experimental treatment, which I think is extremely important because our first goal as physicians is to do no harm to anybody. We want to help, but we certainly don’t want to hurt anybody, but we’re not always able to help. But I want to change ones a little bit differently, but our first goal as physicians is to do no harm.

We certainly want to help everyone, most patients we can’t help, which is fortunate. It’s great to be a physician in 2024 because we can help most patients. There are some issues that we don’t help as much with as we would like to, and we just want to make sure we’re doing no harm. That at worst, at worst we’re neutral to the patient. And keeping safety in mind with clinical trials is paramount in doing clinical trials. I don’t think we can do it without keeping safety first and foremost.

So yes, with some rare exceptions, patients do have to relocate to a center like ours or another larger university settings center in order to receive clinical trial care. There are some types of observational studies, meaning studies where patients are receiving a standard of care treatment and they are being observed for certain outcomes where a patient might be able to participate even if he or she is far from a major center. Those studies usually are not using investigational treatments, but they might help contribute to learning and to science, that’s very important in learning about myelofibrosis.

My [ACT]IVATION tip for this question is partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.

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