Tag Archive for: Dr. Andrew Kuykendall

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

Related Resources:

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.”

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Related Resources:

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

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.”

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Related Resources:

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

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

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

 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, 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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Updates from ASH: How Biomarker Testing Has Changed MPN Care

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Updates from ASH: How Biomarker Testing Has Changed MPN Care from Patient Empowerment Network on Vimeo.

MPN specialist, Dr. Andrew Kuykendall, discusses how the identification of specific biomarkers in myeloproliferative neoplasms (MPNs), such as the JAK2 mutation, have moved research forward. Dr. Kuykendall shares promising findings that were released at the 2021 American Society of Hematology (ASH) annual meeting and how this may impact MPN care in the future.

Dr. Andrew Kuykendall is an Assistant Member at Moffitt Cancer Center in the Department of Malignant Hematology. Dr. Kuykendall’s clinical and research efforts focus on myeloproliferative neoplasms (MPNs), MDS/MPN overlap syndromes and systemic mastocytosis (SM). Learn more about Dr. Kuykendall, here.

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 Which Gene Mutations Impact Myelofibrosis Treatment Options?

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Which Tests Do You Need Following an MPN Diagnosis? 

Transcript

Katherine:

How has molecular or biomarker testing changed the field of MPN care and treatment?

Dr. Kuykendall:

Well, I think, first and foremost just understanding – going back to 2005 and knowing that we have JAK2 mutations. I think that gave really a lot of clarity to the diagnosis and really understanding the biology of how the disease acted through the JAK-STAT pathway. And certainly, that led to the understanding of MPL mutations and then calreticulin mutations.

We’re still figuring out exactly how calreticulin mutations work. There was a great abstract, a preclinical abstract, this year talking about the impact of interferon on calreticulin mutations and how that may differ from what we see in the impact of interferon on diseases that are driven by JAK2 mutations.

Clinically, we see a little bit of difference in how those diseases respond and we may understand a little bit better about why that happens. Additionally, that’s kind of gone down to looking at these big next generation sequencing panels where we identify high-risk mutations and that can certainly change our understanding of the prognosis of these diseases.

We’re starting to get, at least in the AML world, we’re getting targeted agents that can potentially target some of these mutations such as IDH1 and IDH2 mutations that have specific inhibitors.

Those are mutations that occur in myeloproliferative neoplasm patients and convey a worse prognosis, so there are ongoing trials looking to see if we can use those IDH inhibitors in myeloproliferative neoplasms either in the chronic phase or maybe in the more accelerated advanced phase.

You know the big thing, this meeting, was actually looking at polycythemia vera patients and what’s the relevance of the JAK2 mutant allele burden. I think this is something we’ve talked about a lot as far as how significant this is. We know in chronic phase myeloproliferative neoplasms that that JAK2 mutation tends to be associated with more thrombotic complications.

There are more blood clots in the veins and the arteries. There were a couple great abstracts that looked at the really the implications of the JAK2 mutation and the fact that it is associated with more thrombosis, but maybe more venous thrombosis. That might be a big risk factor for venous thrombosis and it may be that cardiovascular risk factors, such as diabetes, hyperlipidemia that’s really what’s driving the arteriole thrombosis. It also looked at the variant allele fraction, the number of cells that have that JAK2 mutation.

One abstract showed that if you have over a 50 percent allele fraction, if more than 50 percent of the alleles have the mutation – a higher burden of that mutation that’s associated with an increased thrombotic risk even in low-risk polycythemia vera patients. Whether or not that’s enough evidence to really change the paradigm of how we treat low-risk patients is to be determined, but I think very interesting and provocative work. 

Expert Advice for Finding an MPN Clinical Trial

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Expert Advice for Finding an MPN Clinical Trial from Patient Empowerment Network on Vimeo.

Dr. Andrew Kuykendall, an MPN specialist and researcher, shares tips for learning about available clinical trials. Dr. Kuykendall emphasizes the importance of seeking a consultation with a specialist and suggests questions to ask your provider about clinical trials.

Dr. Andrew Kuykendall is an Assistant Member at Moffitt Cancer Center in the Department of Malignant Hematology. Dr. Kuykendall’s clinical and research efforts focus on myeloproliferative neoplasms (MPNs), MDS/MPN overlap syndromes and systemic mastocytosis (SM). Learn more about Dr. Kuykendall, here.

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The Latest in MPN Research: Updates from ASH 2021

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 MPN Research and Optimism About Curative Therapies-2

MPN Research and Optimism About Curative Therapies

 

Transcript

Katherine:

How can patients find out about clinical trials? Are there specific questions that they should be asking their doctors about to participate in a trial?

Dr. Kuykendall:

Yeah. I think it’s tough. One way – there are a few different tools that I would recommend. One, if you’re very interested in just what trials are going on you can go to this national cancer trials, or NCT, network and try to understand online what trials are available. Clinicaltrials.gov is the actual website but that’ll show you the ongoing clinical trials that are there.

You can type in a disease state, so you can type in polycythemia vera or myelofibrosis or essential thrombocythemia, and it’ll give you a huge list of all the trials that are there. It can be kind of overwhelming because it’ll list all of the trials that have ever been done, but there are different ways that you can stratify those results and look for trials that are just recruiting that are active and that’ll taper down that list. And when you click on those trials there usually is at the bottom a list of participating centers that are there. So, you can see the different centers that are there. Overall, I think that that is a very broad way of doing it and somewhat complicated.

What I would ask is – and one of the things that we always push for is – while most of these myeloproliferative neoplasms can be treated quite easily in the community, meaning that the actual mechanisms of what’s being provided is not something that requires a specialized center. I think the understanding of the disease really does. We always recommend having someone in your corner who’s an expert. They don’t have to be the one who is most involved in your care but having someone in your corner who’s an expert.

That’s the person who’s going to know what trials are going on, what trials may be coming down the pipeline, where those trials may be occurring, and they might also tell you “Okay, here are the things that would prompt you to maybe want a trial.” I had a lot of patients that were surprised to realize there were trials available just because they had – they were getting six or seven phlebotomies a year. They were complaining about that but they figured that was just the ways things were. Lo and behold, there was actually a trial that was ongoing that was trying to reduce the need for those phlebotomies in otherwise low-risk patients.

You can always go to clinicaltrials.gov but also try to ask your doctor about hey is there, if you haven’t seen an expert, is there someone close by an expert that I can see for a second opinion just to understand the disease and ask about trials. Usually everyone’s okay with that and when you do see an expert, say “Hey, first of all what trials are right for me now and what in the future might be reasonable and how am I going to know and how often should I check in to see what things are available?” 

The Latest in MPN Research: Updates from ASH 2021

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The Latest in MPN Research: Updates from ASH 2021 from Patient Empowerment Network on Vimeo.

MPN specialist, Dr. Andrew Kuykendall, shares the latest news from the 2021 American Society of Hematology (ASH) annual meeting. Dr. Kuykendall discusses the latest findings in MPN research, including an update on JAK inhibitors, advances in BET inhibitors, as well as a new therapy in development aimed at reducing phlebotomy in patients with polycythemia vera (PV).

Dr. Andrew Kuykendall is an Assistant Member at Moffitt Cancer Center in the Department of Malignant Hematology. Dr. Kuykendall’s clinical and research efforts focus on myeloproliferative neoplasms (MPNs), MDS/MPN overlap syndromes and systemic mastocytosis (SM). Learn more about Dr. Kuykendall, here.

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Transcript

Katherine:

You’re joining us following the American Society of Hematology Meeting where cancer researchers came together to share their findings. Are there highlights from the meeting that patients should know about?

Dr. Kuykendall:

Yeah, absolutely. So, the meeting we just came from, the so-called ASH meeting, is really an annual meeting. Happens every December.

It’s really a chance for researchers to share their most exciting findings and really what they’ve been working on for the past few years, and certainly in the past year.

As a clinical researcher, I think I have always a keen interest in clinical trials that are going to give us some new data so we can see how things are working, but I think this is also a big meeting for pre-clinical studies for basic scientists who get to share what’s exciting in their labs. A lot of times that’ll give a preview of what’s to come maybe four, five years down the road what we’ll see on the clinical side. From the clinical side, which is more in my realm, there is certainly a few specific things to get excited about. Within the field of myeloproliferative neoplasms, we have polycythemia vera, ET – essential thrombocythemia, myelofibrosis.

And on the myelofibrosis side of things, I think we continue to get excited about just really the proliferation of drugs that are in late-stage clinical trials. This meeting was no different from that.

We started to get a little bit more clarity as far as this agent, pelabresib, which is a BET inhibitor which is being looked at really in a variety of different settings as a single agent in combination with ruxolitinib (Jakafi) and as an add-on to ruxolitinib as well.

This was another exciting need to get an update on where the data looks to be with pelabresib. Certainly, there’s an ongoing Phase III study in the up-front setting with that agent. We’re anxiously awaiting results too. Additionally, we’ve got more information regarding other JAK inhibitors that may be coming down the pipeline in the coming months to years with momelotinib and pacritinib.

Certainly, that’s always exciting to see the data come from there, especially when we get kind of further along in their trials, we start to get very isolated assessments of their data. Looking specifically at transfusion rates and the efficacy within the subpopulations that have unmet need. And so, I think that that’s always exciting.

I think polycythemia vera – this is a really big meeting for polycythemia vera. We obviously know that ropeginterferon (Besremi) just got FDA-approved in November.

We also started to see the updated data with rusfertide, or PTG-300, which is a hepcidin memetic that aims to reduce phlebotomy rates in patients that are requiring a ton of phlebotomies which, as we know, can be very impactful on quality of life having to get recurrent phlebotomies.

I think that those were the really big highlights, and the take-aways from this is really we are starting to see these agents move into the late-stage clinical trials.