Tag Archive for: Myelofibrosis

Myelofibrosis Clinical Trials | The Benefits of Patient Participation

How do clinical trials fit into a myelofibrosis treatment plan? Dr. Idoroenyi Amanam discusses the benefits of clinical trial participation and advice for patients who may be hesitant to join a trial. 

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

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How Can You Learn More About Myelofibrosis Clinical Trials?

How Can You Learn More About Myelofibrosis Clinical Trials?

Transcript:

Katherine Banwell:

Dr. Amanam, where do clinical trials fit into a myelofibrosis treatment plan?  

Dr. Idoroenyi Amanam:

When you think about where we’re at right now in myelofibrosis, I think  from the scientific standpoint, it’s really exciting.  We’re understanding this disease so much better.  We have  a much clearer picture of how this disease works.  

But with that said, unfortunately, when you look at the drugs that we have available to us, we don’t really have that many still,  and so clinical trials play a big part in this disease space. Because there’s patients who are  very advanced when we diagnose them, and our FDA-approved therapies may not really make a big dent in their symptomology, may not change  what happens with the disease moving forward. And so, clinical trials do give patients such as that an opportunity to actually  get the disease under control. 

Katherine Banwell:

Well, as you mentioned, patients participating in trials are key to moving research forward, right? Can you talk about the benefits of clinical trial participation?  

Even though it – 

Dr. Idoroenyi Amanam:

Yeah – 

Katherine Banwell:

– might be scary for a lot of people. 

Dr. Idoroenyi Amanam:

Right, right. 

Katherine Banwell:

I think a lot of people still think, “Oh, I’m just going to get a placebo, and it’s not going to help me in any way,” but that isn’t really the case anymore, is it? 

Dr. Idoroenyi Amanam:

It’s not the case.  And I think the way that you can think about trials are, we use trials to give therapies that we view as very promising to patients who fall in a gap. And that gap may be that, even though we have FDA-approved drugs, we know that those drugs really may not work for that specific patient. And so, we have an understanding from either a different type of disease that’s very similar to myelofibrosis, or  our  scientific experience that there is a therapy that will work. And we want to use trials to be able to give that patient a chance to, kind of, get over that hump. 

And so, in today’s era, we don’t structure trials around therapies that we don’t believe actually work or  getting patients in trouble down the line. And so, we really, really do believe that our trials are, kind of, an extension of what we have currently  on the market, and so it is a part of our everyday armamentarium to fight this tough cancer. 

Katherine Banwell:

What would you say to patients who are hesitant of participating in a trial?  

Dr. Idoroenyi Amanam:

One, I’d really want to get a clear sense of what their hesitance is.  Is it that the trial would put them at higher risk for some sort of toxicity?  Is it that they’re worried that there’s some other therapy that’s out there that, potentially, would give them a better chance at fighting this disease? the third part of it, the unknown, is always scary for many people.  

And I think my job is to be a part of a patient’s team.  Talk through those concerns, get a sense if this is something that really is the best thing for them, or do we have something else that might be a better option? And unfortunately, there are some instances where I do believe the trial is the best option for a patient, but the patient does not feel comfortable, and we have to go down another path.  

And all of us, we will never force a patient to go down a path that they don’t feel comfortable with. We all believe in patient autonomy, but there are some instances where   the trial may be the best opportunity, and I will do my best job to advocate for that and come to a decision together with the patient. 

Why Myelofibrosis Patients Should Be Engaged in Their Care Decisions

Dr. Idoroenyi Amanam, a myeloproliferative disorder specialist and researcher from City of Hope, shares expert perspective on the importance of patient participation in care and treatment decisions. Dr. Amanam emphasizes the necessity of having a care partner and utilizing all members of the healthcare team. 

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

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Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Transcript:

Katherine Banwell:

Well, how do you encourage patients and care partners to be involved in decision making? Do you have any advice for them?  

Dr. Idoroenyi Amanam:

That’s a very important question, and it’s a tough one. And I will tell you, personally, I have family members who have medical  disorders that I think do require a lot of support from other family or friends. And  based off my experience, I encourage patients to involve their families in these discussions, because I don’t think  we’re at a space where things are very binary.  

I think the decisions that we make when we’re treating patients with myeloproliferative disorders and myelofibrosis, there are some nuances there, and I think family can really help the providers, in addition to the patients, in coming to the right decision about how we’re going to move forward.  

So, I think my advice is, involve your family, involve your friends.  I think having a community of support is very important when you have a type of disease such as this. 

Katherine Banwell:

And it’s important to have somebody there with you, a care partner or a friend, as you say, who may be able to ask questions that you, as the patient, haven’t thought of. Somebody there to take notes, just in case you need to refer to something after. 

Dr. Idoroenyi Amanam:

Absolutely. Absolutely, I agree. I think it’s a team from both sides  to, kind of, extend what you’ve said. To the medical side, the pharmacist may give me some input about  some things I may have missed with the patient,  the nurse practitioner in clinic, the RN in clinic,  the other staff.  

And  I think it’s one of those situations where the more people involved can help us, kind of, draw that picture better. I think we’re trying to get a sense of how we can move forward in the best way, and having all of those parties being active and offering  the best that they can is really helpful for everyone. 

Promising Advances in Myelofibrosis Research | Optimism for Patients

 Dr. Idoroenyi Amanam from City of Hope discusses how the availability of newer JAK inhibitor therapies is providing better options for myelofibrosis patients. Dr. Amanam also shares how researchers are working to reduce the risk of disease progression and providing curative options for myelofibrosis.

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

Download Resource Guide

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Myelofibrosis Clinical Trials | The Benefits of Patient Participation

Myelofibrosis Clinical Trials | The Benefits of Patient Participation

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Updates in Myelofibrosis Research From an Expert

Updates in Myelofibrosis Research From an Expert 

Transcript:

Katherine Banwell:

Dr. Amanam the JAK inhibitor class of therapies often have side effects associated with them. What advancements are being made to manage these side effects? 

Dr. Idoroenyi Amanam:

Yeah. That’s a great question. And I would think about when these JAK inhibitors first  came out, I think we were all willing to accept the side effects because of the fact that you only had one JAK inhibitor, and then we now have more than one. We have a couple of JAK inhibitors, and I think the idea is that the biggest problem that we had with some of the JAK inhibitors were that  patients’ counts couldn’t tolerate higher doses of the JAK inhibitor.  

And we know that for some JAK inhibitors, you have to be at a baseline dose that will help with shrinking your spleen, or improving symptoms, and if you’re below that dose, it doesn’t work very well. And so,  we had a tough time   making adjustments based off of patients’ counts. And so, we have some newer JAK inhibitors that    patients tolerate    these drugs even though they have lower counts. And so, I think that’s one big change that we’ve all seen over the past five years.   

Katherine Banwell:

Is there anything else you’d like to add about advancements in myelofibrosis care?  

Dr. Idoroenyi Amanam:

I would say if we think about early stage, a patient who’s diagnosed, and they’re told that they’re early myelofibrosis, or what we really truly define as low risk myelofibrosis, we traditionally did not have any therapies for those patients, and I think that it’s exciting that we are in a space now where we are thinking about therapies for those patients, and therapies that will reduce the risk of progression to a more advanced stage of myelofibrosis.   

For patients who are in the middle, I think we’ve had a rapid expansion of therapies that are available to patients, and I think a lot of our clinical trials that are currently in play are really directed towards that group, and so that’s really exciting. And then for the high-risk patients, City of Hope is a bone marrow transplant center, cellular therapy center, and we have a lot of experience in performing allogeneic stem cell transplants for myelofibrosis patients.  

And I think across the country, we have gotten better at performing allogeneic stem cell transplants for myelofibrosis, and as of right now, it’s one of the few curative therapies that we have.  

And we have been able to understand how to get these patients through a very intense regiment and get them to the other side, and I think that’s also very exciting. We still have a lot of clinical trials in allogeneic stem cell transplant space as well. And so, I think we are in a place now where we have a therapy for everyone, if they choose to want one.  And not only a therapy just to bridge them, or treat their symptoms, but therapies that, potentially, will get rid of this disease.  

And I think for a patient, when you go to sleep at night, or when you talk with your family, the biggest worry is having something  that there’s no clear sense of we can get rid of it. And I think we’re getting to a better place where I can confidently tell patients we’re getting better at getting rid of this, and I think that’s the most exciting thing that we have right now.  

Katherine Banwell:

Yeah. It’s a promising field. 

Dr. Idoroenyi Amanam:

Very promising.  

Katherine Banwell:

If we look at care and treatment, why should a patient with myelofibrosis consider a second opinion with a specialist?  

Dr. Idoroenyi Amanam:

The field is rapidly changing, and we have very few FDA-approved therapies even in 2024 for myeloproliferative disorders and myelofibrosis. And because of some of the changes in understanding of the biology of this disease, I think that there are many patients that will benefit from physician or a center that specializes in treating patients with this very rare disorder. And I believe that   even though we have very few FDA-approved therapies, I do believe that we can give patients an opportunity to get this type of disorder under control, and actually offer curative approaches that may not be available to all facilities. 

Recent Advances in Myelofibrosis Research | Disease-Modifying Therapies

Where is progress being made in the field of myelofibrosis? Dr. Idoroenyi Amanam discusses how disease-modifying therapies and cellular therapies are advancing patient care.

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

Download Resource Guide

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Promising Advances in Myelofibrosis Research | Optimism for Patients

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Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Myelofibrosis Therapies in Clinical Trials | BET Inhibitors

Myelofibrosis Therapies in Clinical Trials | BET Inhibitors 

Transcript:

Katherine Banwell:

What are your areas of focus in myelofibrosis research? 

Dr. Idoroenyi Amanam:

So, I think the way that I would break it down, when you think about myelofibrosis patients, or patients with myeloproliferative disorders, patients who are diagnosed, and they’re really pretty much asymptomatic, and then you have patients who have some symptoms, then you have some patients who are very symptomatic or transitioning into a more severe disease and predominantly, that disease is acute leukemia. And so, I have an interest in trying to identify new treatments for all of these types of patients.  

Katherine Banwell:

In your opinion, what new myelofibrosis advances are most promising? 

Dr. Idoroenyi Amanam:

So, traditionally, for a lot of myeloproliferative disorders, including myelofibrosis, we had a watch and wait approach, so we typically actually did not really have very good therapies. And I think all of that changed with the approval of the first JAK inhibitor, ruxolitinib (Jakafi).  

And we have transitioned to understanding the signaling pathways that are involved in myelofibrosis and myeloproliferative disorders. And we understand certain driver mutations that are involved in these signaling pathways and involved in other areas that help drive these diseases.  

And I think what’s exciting for us right now is, we’re transitioning from having a Band-Aid approach, or a watching and wait approach, to actually having interventions that are what I would call disease-modifying drugs. And so, these drugs target some of these drivers that drive the disease.  

They target some of the inflammation that’s associated with the disease, and, in fact, they’re also targeting some of our own immune cells that may help us protect us against these diseases progressing into more aggressive disorders. 

Katherine Banwell:

How are innovations in technology accelerating myelofibrosis research?  

Dr. Idoroenyi Amanam:

You think about how we understood these diseases 20 to 30 years ago. I think we understood the clinical presentation. We understood that some patients had big spleens, we understood that those patients’ counts didn’t do so well, we understood when we would look at their marrow, how the cells looked under the microscope. And we’ve transitioned to now understanding how some of those proteins that are   in these  signaling pathways are either turned on or turned off.    

We have a better understanding of the genetics of this disease, and how it changes over time, and what that means for patients prognostically, and how they will actually respond to our current therapies.  

And obviously, it’s driving how we are setting up clinical trials and other therapies  for the future. And so, I really would say our  genetic, genomic understanding of these disorders have really opened up many opportunities for us to treat these patients better.  

Katherine Banwell:

Well, are there other research developments showing promise that patients should know about? 

Dr. Idoroenyi Amanam:

So, traditionally, we’ve thought about  these disorders as disorders where, maybe if we improved symptoms – so we give you, maybe, a pill that would help with your symptoms, or we’ll give you another medication that will help with keeping your counts under control or reducing your risk for clotting and stroke.  

And we are currently in a space where cellular therapy has exploded across all areas of oncology. We have many clinical trials that are using  therapies that  take your own cells,  or other donor cells from healthy  people, and we are giving them to patients with the hope that it will  get rid of these  bad cells that are driving myelofibrosis.  

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Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

 

Dr. John Mascarenhas discusses the evolving landscape of myelofibrosis research, emphasizing the concerted effort among researchers, pharmaceutical companies, and advocacy organizations to advance care and treatment options for patients.

Dr. John Mascarenhas is Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Director of the Center of Excellence for Blood Cancers and Myeloid Disorders at Mount Sinai. Learn more about Dr. Mascarenhas.

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Transcript:

Katherine Banwell:

Is there anything you’d like to add about the evolution of myelofibrosis care? What are you excited about?  

Dr. John Mascarenhas:

I always make the comment they don’t feel rare to me because I see so many patients with myelofibrosis, and it’s what I do. But I recognize in the context of lung cancer, breast cancer, other more common cancers, these can be forgotten diseases. But what has been encouraging is, between the NIH funding, for example, our research consortium, which is really geared to translating the biology into clinical trials across the country.  

Pharmaceutical interest, which is essential to providing drugs and finance to run trials. Young investigators that are coming to the field that want to make a difference, institutions that continue to support the programs, and then foundations. Whether it’s MPN Research Foundation, Leukemia & Lymphoma Society, it really takes a village. And we’ve been working with the FDA to try to better understand how to develop trials that are meaningful that can get drugs approved and to the patients. 

So, it’s a concerted effort, and I’ve been enthusiastic. I remain optimistic that everyone is trying to do the same thing, achieve the same goal, and work together, and that’s the only way we’re going to be able to do it. 

Katherine Banwell:

Yeah. How long does it take for the FDA to approve a drug? 

Dr. John Mascarenhas:

Forever. It feels like forever. It’s a long process, and for patients, it can be quite frustrating, because there’s so many steps involved. From just the original, initial steps to allow you to introduce a drug into humans, there are IND-enabling studies, so there’s a lot that goes into this.  

And then the initial studies are safety studies. They often can take quite some time. There’s a lot of scrutiny on safety, obviously, because the FDA is really charging to making sure that we do no harm, that we maintain safety for patients, so that can take a long time. And then the ultimate testing and comparison to a control arm is essential to get a drug approved. 

So, we’re looking at a timeline that can easily be a decade from the time we have a great idea, and have a drug available to us, to the time that we can prove that through the different stages, and then demonstrate that to the FDA and negotiate what a label will look like. And that is both a time-consuming process, a very expensive process, and a laborious process, but obviously an important process. 

Katherine Banwell:

Yes, and as you say, so many new drugs and therapies have become available in the last 10 years or more that really have advanced myelofibrosis care enormously. 

How Can You Learn More About Myelofibrosis Clinical Trials?

 

Dr. John Mascarenhas shares advice for patients looking to learn more about clinical trials starting with consulting a specialist. Dr. Mascarenhas also emphasizes key questions to ask, including a discussion of the benefits versus risks of participating in a potential trial. 

Dr. John Mascarenhas is Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Director of the Center of Excellence for Blood Cancers and Myeloid Disorders at Mount Sinai. Learn more about Dr. Mascarenhas.

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Transcript:

Katherine Banwell:

What about clinical trials? How can patients learn more? 

Dr. John Mascarenhas:

Well, clinical trials is definitely a confusing area because there are many clinical trials, and some of them are relevant to some patients may be not relevant to other patients.  

So, I think two ways is, see someone who does this. So, not everyone has as their primary care provider hematologist an expert, or someone who’s dedicated to doing this. They may be in a practice where they’re in the community setting; it’s not reasonable for them to be seen at a tertiary care center. 

But if you can get there even for a consultation or an initial visit to get plugged in, I think it’s really critical to see someone who is really invested in this with research opportunities, and clinical trial availabilities. And then the other resource would be clinicaltrials.gov.  

You can go in there, you can put in your diagnosis myelofibrosis. You can even manipulate it for geography to understand what trials are in your area. 

But it is a good way of looking, just to understand what’s there. And then the MPN Research Foundation, which is very supportive of the patient community and engages them, is often a very good resource to go to, to either learn about trials or join webinars where physicians that do this will discuss, and I think that’s another excellent resource. 

Katherine Banwell:

What questions should patients ask their team about clinical trials?   

Dr. John Mascarenhas:

Well, are there clinical trials for what I have? Because again, they can be very particular to where you are in the disease process, what medications you are on, what your kidney function is, things that may really influence decision-making. So, are there clinical trials, what are the clinical trials evaluating, what should I expect from them, both potentially from a positive angle, but also from a negative. What are the known toxicities, what would be the time commitment? Trials are more involved, and they’re more involved for a reason. 

I actually personally think patients do better on clinical trials than standard of care. The reason why I think that is because they are more involved. There’s a lot more oversight and eyes on you. Not just a physician perspective, but maybe more importantly, from a research nurse and research coordinator perspective. There’s a lot of regulatory burden which translates, I think, to a lot of attention to safety and assessment for advocacy.  

So, I think understanding what that looks like at any given institution, and how it will affect the patient and their caregivers from a time perspective, and obviously toxicity. But also, what is this trial trying to achieve? Does it make sense for what I’m trying to achieve? 

Katherine Banwell:

I suppose another question might be where this trial is taking place? As a myelofibrosis patient and a caregiver, are we going to have to travel to get to this clinical trial? 

Dr. John Mascarenhas:

I think that’s a major obstacle for a lot of patients. We’re talking about a disease that typically affects people that are in there sixth, seventh, eighth decade of life. Patients don’t all live, as I’ve said, right around a cancer center or a tertiary care center, so travel, the logistics of it, the ability to have that support available. Sometimes it’s loved ones, and adult children having to take time off of work to be able to help in that process.  

It’s a lot, and I’m particularly sensitive to it, because I work in a metropolitan area, and I realize getting in and out is not easy. And a lot of times, these trials understand that, and they build into the trials stipends and support for transportation and/or lodging which helps. It’s not perfect, but it can help at least financially, and sometimes logistically, so I would definitely inquire about what those resources are.  

And sometimes foundations also help bridge the gaps for patients to help link them to trials and facilitate that. So, it’s a super important part of engaging in a trial. 

Katherine Banwell:

And who is on the health care team that might be able to answer questions like this? 

Dr. John Mascarenhas:

Well, for sure, the physician should be able to. But I think the most valuable resource often is the nurse and the nurse practitioner. There are usually research coordinators. These are often young people, but very bright young people, that are very invested in this that will sometimes show up at the clinic to talk to the patient or will be a phone resource that you could reach out to. So, it can really be, I think, three levels. The coordinator, the nurse or nurse practitioner, or physician assistant, and the physician. So, it really shouldn’t be one person, but a team of people that are available to you. 

Expert Outlook | New Myelofibrosis Therapies Showing Promise

 

What myelofibrosis therapies in development show promise? Dr. John Mascarenhas, a myelofibrosis researcher, reviews innovative treatments that are being combined with JAK inhibitors as well as single agent therapies that are making headway for patients with myelofibrosis. 

Dr. John Mascarenhas is Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Director of the Center of Excellence for Blood Cancers and Myeloid Disorders at Mount Sinai. Learn more about Dr. Mascarenhas.

See More from Evolve Myelofibrosis

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Evolving Myelofibrosis Treatment Options: What You Should Know

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Transcript:

Katherine Banwell:

The JAK inhibitor class of therapies has been around for over a decade now. What new therapies are showing promise when being studied in combination with these therapies? 

Dr. John Mascarenhas:

So, I think the ones that are really exciting, and there are a number. We don’t know which one is the best, but I’ll tell you the ones that I think really have potential would be drugs like pelabresib, the pan-BET inhibitor, and the MANIFEST-2 study. Even a drug called navitoclax, that isn’t going to move forward, taught us a lot. We know that pathway is important, we just have to improve upon how we’re doing this.

Drugs like selinexor (Xpovio), the XPO1 inhibitor, is ongoing in the SENTRY study. A drug called navtemadlin is a very active drug, and that’s been shown as a single agent after ruxolitinib (Jakafi) failure. But now, it’s going after those patients who are not having an optimal response with ruxolitinib, adding it on on the backend.  

So, what I really love about the way we’re doing this is, I think it’s a very thoughtful approach trying to use these really active drugs that exploit non-redundant pathways in the disease, both either up front, to really get the biggest bang for your buck, to really try to reduce the diseased burden earlier on, or to try to add on as a strategy if patients aren’t enjoying the maximum benefit from ruxolitinib. So, we are really trying to tackle it from different angles and some of these drugs really look promising. 

Katherine Banwell:

Yeah, yeah. Are there other single agent therapies that are being studied for myelofibrosis?  

Dr. John Mascarenhas:

There are. So, I’ll name two that I also think really deserve some attention. One is called TP-3654, and it’s a drug by Sumitomo that’s a PIM 1 kinase inhibitor. So, this also goes after a very specific pathway – inflammatory pathway – a signaling pathway – that is known to be an important driver of disease and has very nice data, particularly from a symptom-burden perspective. But also, again, this concept of disease modulation and reduction in cytokines in patients who’ve previously been on ruxolitinib.  

So, there’s data there where they’re going to add it on to ruxolitinib that really looks like an interesting approach forward. And then the drug I think many of us are very anxious to see results in which is ongoing, is the IMpactMF study.   

This is the randomized phase three study of imetelstat (Rytelo), which is a telomerase inhibitor and infusional agent that goes after a very important enzyme that keeps malignant cells alive and really is one of the drugs that I think has the true potential to go after the stem cell, the origin of the disease, and improve survival. It’s the only study we have had, and currently have, where the endpoint for the registration phase we’ve studied is survival. It’s patients who have failed ruxolitinib and are getting this drug as a single agent, versus best available therapy.  

A very exciting trial and really important. Whether you’re on the trial or you’re a candidate for it, it really helps us move the field forward, because it gives us essential insights into the disease and how to do better. 

Katherine Banwell:

Yeah. When it comes to the latest research and treatment, what question should patients ask their health care team about new or developing treatment options? 

 Dr. John Mascarenhas:

Well, I think every patient is different, and truly different since their biology is different, the way they present is different, their course is different. So, really, the treatment options, including the trial options, really need to be tailored to the patient. It has to make sense for that patient. It has to meet their expectations, be aligned with their goals of therapy, and balance. Balance risk with potential benefit. Patients have to understand. The physicians have to present very clearly that some trials are randomized studies, and you could get a placebo. 

And it’s often blinded, so the patient doesn’t know, the physician doesn’t know. But importantly, in some of these studies, there’s crossovers, so even if you don’t get the drug up front, you can get it in the backend. All of these things really have to be disclosed very carefully and thoughtfully, so the patient’s really making an informed decision that makes sense for them and is meeting their expectations. 

Updates in Myelofibrosis Research From an Expert

 
Dr. John Mascarenhas shares updates on myelofibrosis research. Dr. Mascarenhas highlights the shift towards combination therapies, particularly the use of JAK inhibitors alongside novel agents, with the goal of improving disease response and patient outcomes.
 
Dr. John Mascarenhas is Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Director of the Center of Excellence for Blood Cancers and Myeloid Disorders at Mount Sinai. Learn more about Dr. Mascarenhas.

See More from Evolve Myelofibrosis

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Expert Outlook | New Myelofibrosis Therapies Showing Promise

Expert Outlook | New Myelofibrosis Therapies Showing Promise

How Can You Learn More About Myelofibrosis Clinical Trials?

How Can You Learn More About Myelofibrosis Clinical Trials?

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Transcript:

Dr. John Mascarenhas:

My name is John Mascarenhas, I am a professor of medicine at the Icahn School of Medicine here in New York City. I direct the Center of Excellence for Blood Cancers and Myeloid Disorders, and I lead the adult leukemia program. But my real passion and interest is in myeloproliferative neoplasms and translational research, trying to understand the biology of the diseases and helping translate that into effective therapies in the clinic. 

Katherine Banwell:

Dr. Mascarenhas, from your perspective, what are the highlights so far this year in myelofibrosis research? 

Dr. John Mascarenhas:

So, I think myelofibrosis research – I’ve been in this field for about 20 years, and I’ve watched it go from a field where we had very little insight into the biology of the disease, which meant very little targeted or informed therapies to the era of JAK inhibitors.  

The first being 2011 with ruxolitinib (Jakafi), then 2019 with fedratinib, 2022 with pacritinib, and then 2023 with momelotinib (Inrebic), has really afforded us a significant advantage in trying to tailor the treatments for different patient niches to improve spleen and symptom benefit.  

And I do think that translates to a survival benefit in our patients with myelofibrosis. So, outside of bone marrow transplant, really these treatments are not curing patients, but they are addressing certain aspects of the disease. 

What I’m most excited about is the new era; the next generation of approaches that we’re seeing, and we have been seeing, and will continue to see emerge, and these include combination therapy approaches up front. So, taking those JAK inhibitors, the benefit they have, and trying to improve upon that with the addition of informed therapies, rational drugs that have pre-clinical evidence. 

Meaning, in the lab with cells from patients with animals that are engineered to have myelofibrosis, so that when we take them into the clinic, we are more confident, more informed in our decision-making, that we’re not exposing patients to drugs that really don’t have rationale.

Katherine Banwell:

What do these research advances mean for myelofibrosis patients? 

Dr. John Mascarenhas:

Well, I think what we’re seeing is a shift towards more combination therapy. So, what I think it means for a patient is deeper responses from not just spleen and symptom, but what we’re looking at very intently are biomarkers of disease modulation and disease response, hopefully, disease course changes.  

So, things like reductions in their driver mutation. These are gene mutations like JAK2, CALR, MPL, reductions in inflammatory markers, reduction in bone marrow fibrosis in the bone marrow.  

All of these things suggest that we’re really starting to modulate the disease in a more significant way. What we’re trying to show is that that actually matters to a patient, that these findings actually translate to better progression-free survival, better overall survival. So, I’m really enthusiastic and excited by what is happening now, because I do think it pays off. 

It’s incremental benefits, but things that are now more targeted, like mutant CALR antibody approaches, or BiTE approaches.  

To those patients who have this abnormal CALR protein expressed on the surface of the cell transformative with at least the potential to be JAK2 selective inhibitors, really going after that mutant JAK2 in a very selective way, or a Type II JAK2 inhibitor. Really, the potential to have very molecularly defined targeted therapies that will, hopefully, get us much deeper responses; that patients will see even greater benefits, better improvements in symptom burden, spleen, but ultimately survival.  

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

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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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?

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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Can Monitoring Albumin Levels Help Track Myelofibrosis Treatment Success?

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.”

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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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What Are Key Challenges and Potential Solutions In MPN Management?

In MPN management, what are some common challenges and possible solutions? Experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss the challenges of practice-related barriers including treatment options and navigating the logistics of treatment access. 

Download Resource Guide

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Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care


Transcript:

Dr. Nicole Rochester:

Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?

Kim Smith:

Well, a lot of the world of MPNs is starting to explode, especially with myelofibrosis. We are getting all these different treatments, these trials running, things hopefully that we will have that could that could change the disease process in these patients. And one of the biggest challenges is, is that where do the patients fit at in this aspect of it? Are we going to be able to actually get patients approved for some of these things or will we have to go with the oldie, but goodie with a lot of these? We still use hydroxyurea (Hydrea) a lot in these MPNs. And so, but we have a lot of other drugs now that we can use.

But because we know that it’s tried and true, and it’s harder to get patients on some of these other drugs, we go with the oldie but goodie. So I think that’s a challenge that we…that we’ll have. And the other thing is too these drugs are expensive. So even if we can get the drug form at our institution or in the community, if we can get them for them, will they be able to afford them? And one thing I can say that I’ve noticed is a lot of the drug companies that we’ve dealt with here that they are really good about helping, is there anything that we can do to kind of help push the process to get patients assistance for these therapies? And so I think that’s one of the biggest challenges that we’ll have with treating them, just this explosion of new therapies coming.

Dr. Nicole Rochester:

And you kind of alluded to it when you spoke about hydroxyurea. So I’m going to pose this question to you, Dr. Jain, are there any unforeseen or outdated practice-related barriers or therapeutic inertia that may hinder your work in that of your colleagues?

Dr. Akriti Jain:

Yes, definitely. I echo Ms. Smith’s sentiments. I think a lot of times, things that we have already used for years and having familiarity with those treatments sometimes can lead to resistance to accepting new guidelines and treatments. And that can come from, again, not knowing the side effects that these treatments can pose, right? Not having long-term data that these drugs haven’t been, some of them are new, they haven’t been around for years, so we don’t know what they can cause in the future. And that can happen both from the healthcare provider standpoint and also from the patient standpoint. And it can be challenging. And what can help us overcome that is education.

Even though the drugs might not be approved, for example, the newest approval that came around last year was momelotinib (Ojjaara), which is a newer drug for myelofibrosis, can help treat anemia as well. After it was approved, we had patients ask us for that drug for months before we could actually prescribe it. Yes, because FDA approval and then actually being able to prescribe the drug take…it takes some time for these drugs to show up on formularies for pharmacies to start carrying them. And then going back to, even if the drug was approved last year, it doesn’t mean it’s a new drug. It’s being tested and it is being tested in trials for years now. So those are some of the things that I can think of.


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HCP Roundtable: Advancing Practice and Enhancing Myeloproliferative Neoplasm Care

In this EPEP program, Dr. Akriti Jain of Cleveland Clinic and Nurse Practitioner Kimberly Smith of Duke Health discuss overcoming practice barriers, navigating emerging challenges, and implementing strategies to close gaps in patient-centered myeloproliferative neoplasm (MPN) care.

Download Resource Guide

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HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients or EPEP Program. My name is Dr. Nicole Rochester, Founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. 

In this healthcare provider roundtable, we are discussing advancing practice and enhancing myeloproliferative neoplasm care. How can we overcome current challenges to enhance the management and outcomes of myelofibrosis, polycythemia vera, and essential thrombocythemia? What innovative practices are transforming the management of myeloproliferative neoplasms to improve patient outcomes?

Our conversation will look at  gaps in the field and solutions to enhance patient-centric MPN care for improved patient outcomes. We’re going to discuss identifying practice barriers to patient-centered care, navigating emerging challenges and opportunities in management and effective strategies for closing gaps in MPN care. It is my privilege to be joined by Ms. Kimberly Smith of Duke Health. Ms. Smith is a nurse practitioner who provides security and compassion that patients and families need when they get a cancer diagnosis. Thank you so much for joining this EPEP program today, Ms. Smith.

Kim Smith:

Thanks for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

It is also my honor to be joined by Dr. Akriti Jain, a hematologist at Cleveland Clinic. Dr. Jain’s passion lies in understanding the needs of every patient and always prioritizing and advocating for her patients and their families. Thank you so much for joining the EPEP program, Dr. Jain.

Dr. Akriti Jain:

Thank you, Dr. Rochester. Happy to be here.

Dr. Nicole Rochester:

So I’d like to start off by talking about identifying and overcoming barriers to patient-centered care for patients and families facing a myeloproliferative neoplasm. So, Dr. Jain, I’m going to start with you. What are the most common barriers to implementing patient-centered care in the management of myeloproliferative neoplasms?

Dr. Akriti Jain:

Thank you for that question, Dr. Rochester. It’s very pertinent. As you can imagine, there can be a lot of barriers when we are trying to provide patient-centered care, especially in the management of myeloproliferative neoplasms. As you said, there are multiple myeloproliferative neoplasms, and each one of them is complex. And hence the complexity of each diagnosis, how they’re diagnosed, how their risk-stratified and how those patients are symptomatic based on whether their platelets are high or their hemoglobin is high, or they have scarring or fibrosis in their bone marrow.

Then that in itself becomes complex and can become a problem when we’re seeing these patients in the community. That’s why a lot of these patients get referrals to tertiary care centers, and not all patients can have that opportunity to go to tertiary care centers and see providers that are very knowledgeable and know what…exactly how to diagnose these myeloproliferative neoplasms.

Dr. Akriti Jain:

A lot of times it’s very team-based approach. It’s not just the clinician, but also the pathologist. So a lot of times when these patients come to us we have their bone marrow biopsies reviewed because the diagnostic criteria requires certain things in their bone marrow that helps us diagnose these problems. So not just that these MPN are variable, but also individual variability within the MPNs. So not every polycythemia vera patient presents the same way. So that becomes a problem again when providing patient-centered care, because it’s not the one-size-fits-all philosophy. Those are some of the things that I can think of.

Dr. Nicole Rochester:

Ms. Smith, I know that you share Dr. Jain’s passion with regard to really being compassionate with your patients. So I’d love to get your perspective as a nurse practitioner what are the primary barriers that you’ve witnessed to accessing effective patient-centered care?

Kimberly Smith:

I would say what I’ve experienced most is the patients actually understanding their disease process, the education piece, like making sure that educating them about their disease, giving them security that, hey, that you have a myeloproliferative neoplasm, but let’s look at it as we’re running a marathon, not a sprint. You know that we have time, you know that we can get family involved. And I think that’s a big thing with me, just try to bridge that barrier that it’s a team effort. It’s not just you. Even though treatment is individualized, it’s still a team. We are a team, so I want you to be comfortable, but I also want to be comfortable with giving you the information and that you are able to receive it. That’s one of the big barriers that I see is them being able to accept their diagnosis.

Dr. Nicole Rochester: 

Wonderful. Thank you so much Ms. Smith. So, Dr. Jain, I’m going to go back to you and staying on this theme of patient-centered care. Can you talk about some of the gaps in research regarding patient-centered care in MPNs, and how can those gaps be addressed?

Dr. Akriti Jain:

Sure. So building off of what Ms. Smith was just saying, education comes, it’s very important also for research. If our patients are educated on the potential options for trials, for retrospective research, for registry research, they are more open to accepting these options for their management, for their treatment. A lot of patients might not know which phase each trial is in, and a lot of patients don’t want to be, “guinea pigs.”

So sometimes it’s important for us to educate patients that some of these trials are Phase III trials and Phase III trials eventually lead to drug approval. So a lot of the drugs we have for myeloproliferative neoplasms were not available a few years ago. So education is very important here. And lack of education within patients and then also within healthcare providers can be a big gap in getting research to the patients where it is needed.

And we’re very thankful to these patients that help us advance research and help us get these drug approvals and enroll in trials. Other important gaps are including patient-reported outcomes. As we all might know within MPNs, we have a really nice MPN symptoms score MPN-SAF, a lot of newer research trials and other research avenues are including SAFs within the trials. And so these are important things that can help us give patients the prioritized and individualized care they need.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. Ms. Smith, do you have anything to add with regard to gaps in research regarding patient-centered MPN care?

Kimberly Smith:

Yes. I agree with Dr. Jain, but also another thing that I notice, with these gaps is a lot of patients come to us with other comorbidities, and so they might not qualify for trials or they might have another associated heme malignancy that they might not be able to qualify. So it kind of puts a gap in treatment, because then we have to go with what’s already FDA-approved, and that might not be the best option for the patient at that time.

Dr. Nicole Rochester: Thank you for pointing that out. So we’ve been talking about the barriers that patients face, and I want to shift gears a little bit and focus on the healthcare provider. So, Dr. Jain, I’m going to start with you. Can you speak to some of the obstacles or barriers that healthcare providers face when treating MPN patients?

Dr. Akriti Jain:

Sure. So being a healthcare provider and doing this, I can tell you all about the barriers we face. I think going back to that team-based care, sometimes it’s easier said than done. Like I said, we need pathology input. A lot of times we need psychology input. Other times, we need cardiology input. Some of these patients are getting blood clots, vascular medicine, so team-based care and coordination within those various physicians and nurse practitioners and social workers that can sometimes become cumbersome requires lots of phone calls.

And so in a lot of places, we try to put together these teams where you have kind of like a go-to person to call when you have questions or concerns. The other thing we always are all short on is time. So it’s easier to talk about these MPN symptom scores, but when there are 10 questions to ask these patients within those 15 to 30 minute appointments though that’s another barrier sometimes that we face as physicians and as healthcare providers.

The other important, one of the other important parts is management of some of the side effects of these newer therapies. Every patient reacts differently. Every patient has different side effects that they can have. And knowing those and being able to manage them while keeping them on these therapies, which don’t only improve symptoms, but can also sometimes improve survival and improve the natural history of the disease can be difficult to overcome and handle.

Dr. Nicole Rochester:

Thank you, Dr. Jain. And what about you, Ms. Smith? Can you speak to any additional barriers that healthcare providers face?

Kimberly Smith:

Unlike Dr. Jain was saying, but one of the barriers that I see that that we face a lot is advocacy groups are great, they’re wonderful, we need them. But a lot of patients look at those groups, and they lump themselves into that group. And so I try to tell patients you are an individual. You are individual. You need individualized care. It’s wonderful to look at the advocacy groups. It’s wonderful to follow, and you get some good information, but we also have to look at you as who you are and what we are treating and your symptoms, because your symptoms may not be the symptoms that they have.

Dr. Nicole Rochester:

A really good point. And since we’ve talked about these barriers, I’d love to wrap this part of the conversation up by giving solutions. So, Dr. Jain, you mentioned a couple, you talked about having this one number for all of the how healthcare providers to call, if there are questions to kind of help to coordinate care. Are there other solutions that you or Ms. Smith can offer to start to overcome some of these barriers in care?

Dr. Akriti Jain:

Sure, yeah. In addition to the multidisciplinary team that we were discussing and having, those people that we can talk to another barrier that I didn’t talk about is a lot of prior auths and having pharmacy support to get some of these medicines that can be really expensive, right? The financial toxicity that can come with some of the medicines that we manage myeloproliferative neoplasms with is hard. So having pharmacy support is again very important.

Having that specialty pharmacy that can help us navigate how to get these medicines to patients quickly and get them in an affordable manner, I think another important part that we always come back to is education. Education of those pharmacists, of patients, of other healthcare providers helping them stay on top of what new drug approvals come through, what Phase III trials are available in the community, what the side effects of these medicines are so that they are empowered to be able to help their patients out in the community and also in tertiary care centers.

Dr. Nicole Rochester:

Wonderful. Thank you both. Well, we’re going to move on. And in this section I want to talk about some of the challenges and opportunities. So I’m going to start with you on this one. Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?

Kimberly Smith:

Well, a lot of the world of MPNs is starting to explode, especially with myelofibrosis. We are getting all these different treatments, these trials running, things hopefully that we will have that could that could change the disease process in these patients. And one of the biggest challenges is, is that where do the patients fit at in this aspect of it? Are we going to be able to actually get patients approved for some of these things or will we have to go with the oldie, but goodie with a lot of these? We still use hydroxyurea (Hydrea) a lot in these MPNs. And so, but we have a lot of other drugs now that we can use.

But because we know that it’s tried and true, and it’s harder to get patients on some of these other drugs, we go with the oldie but goodie. So I think that’s a challenge that we…that we’ll have. And the other thing is too these drugs are expensive. So even if we can get the drug form at our institution or in the community, if we can get them for them, will they be able to afford them? And one thing I can say that I’ve noticed is a lot of the drug companies that we’ve dealt with here that they are really good about helping, is there anything that we can do to kind of help push the process to get patients assistance for these therapies? And so I think that’s one of the biggest challenges that we’ll have with treating them, just this explosion of new therapies coming.

Dr. Nicole Rochester:

And you kind of alluded to it when you spoke about hydroxyurea. So I’m going to pose this question to you, Dr. Jain, are there any unforeseen or outdated practice-related barriers or therapeutic inertia that may hinder your work in that of your colleagues?

Dr. Akriti Jain:

Yes, definitely. I echo Ms. Smith’s sentiments. I think a lot of times, things that we have already used for years and having familiarity with those treatments sometimes can lead to resistance to accepting new guidelines and treatments. And that can come from, again, not knowing the side effects that these treatments can pose, right? Not having long-term data that these drugs haven’t been, some of them are new, they haven’t been around for years, so we don’t know what they can cause in the future. And that can happen both from the healthcare provider standpoint and also from the patient standpoint. And it can be challenging. And what can help us overcome that is education.

Even though the drugs might not be approved, for example, the newest approval that came around last year was momelotinib (Ojjaara), which is a newer drug for myelofibrosis, can help treat anemia as well. After it was approved, we had patients ask us for that drug for months before we could actually prescribe it. Yes, because FDA approval and then actually being able to prescribe the drug take…it takes some time for these drugs to show up on formularies for pharmacies to start carrying them. And then going back to, even if the drug was approved last year, it doesn’t mean it’s a new drug. It’s being tested and it is being tested in trials for years now. So those are some of the things that I can think of.

Dr. Nicole Rochester:

Thank you both. So I want to talk about the Landmark study. This, as you all know, was a large scale analysis and survey of patients with myeloproliferative neoplasms as well as the healthcare providers who treat these rare chronic blood cancers. Ms. Smith, how do you feel that healthcare professionals can use the insights from the MPN Landmark study as an opportunity to improve how they communicate and interact with their patients?

Dr. Akriti Jain:

Sure, I think the most important thing that we can learn is understanding the patient perspectives and needs. It provides an in-depth analysis of what the patients get anxious about or what the patient’s symptoms are about. So if, for example, if the patients are anxious about side effects of treatment, we can be proactive in empowering our patients with that knowledge that these are the things that we need to look out for.

These are the things that you would call us for. And again, it gets us back to understanding the common challenges that our MPN patients face and then how we can help them with those challenges, those symptom management. If treatment adherence is a problem, how can we help them have a pill diary? Or if a burden is a problem, how can we help them reduce some of the medicines that they’re taking? I think it provided a really good understanding of what patients feel, how their perspectives are, and what things we can use to improve their management and provide more patient-centered care.

Dr. Nicole Rochester:

And what about you, Ms. Smith? What are your main takeaways from the Landmark study and how can healthcare providers use those results to improve the way they interact with patients?

Kimberly Smith:

My main takeaway was where the patients, where it showed on the study, where the patients were saying it was hard for them to get up out of the bed. So I’ve dealt with that with many patients. Fatigue is a true issue. And, I’ve had patients tell me they’ve golfed nine holes. I had no idea what that meant. But then they say I come in and I can only golf five holes.

I still had no idea what that meant. However, it was significant for them. And so, what I take from that study is we have to not only just ask patients, what are your symptoms? We have to actually question and dig to actually find out because what we may be looking at just off of the symptom score page, they may have something else that’s hindering their ADLs or hindering their, what they’ve done all the time in their life. And it’s changed now.

And so, I think the main thing we have to do is actually ask, educate, have them to write down symptoms, anything that happens new that happens to them, let’s write it down. Let’s go over it. Let’s talk about it. And then if it’s fatigue, we have ways we can help mitigate some of that. We collaborate with palliative care to help with symptom management. If it’s allergy symptoms, we collaborate with allergy. So there’s ways we can help you with your symptoms, but if we don’t know, we don’t know. So I think the education, I think talking to patients, like actually talking to them on their level is what that Landmark study kind of presented to all of us, healthcare providers, that what we may be looking at as symptoms may not be symptoms for the patient.

Dr. Nicole Rochester:

Absolutely. And that kind of circles back to, I think what you were talking about earlier, Dr. Jain, with regard to patient-reported outcomes. So I will say I was thrilled to see this study, and I wish that this is something that was done in all disease states. So thank you both for commenting on that. So in our final topic, we’re going to talk about strategies for closing the gaps in myeloproliferative neoplasm care. So I’m going to go to you first, Dr. Jain, can you describe the most effective strategies, including your own best practices that can address gaps in care for patients facing a myeloproliferative neoplasm?

Dr. Akriti Jain:

Yes. So again, coming back to empowering our patient and leading to that shared medical decision-making. So different patients present differently, not using that one-size-fits-all philosophy, depending on what their symptoms are, what their diagnosis is tailoring their treatment. If cytopenias or anemia is a problem, helping them battle that. And different hemoglobins can be different for different patients. So not discounting their symptoms, saying that your hemoglobin is 11, your hemoglobin’s fine, you don’t need any treatment for this right now, maybe they’re used to functioning at a 14.

So shared medical decision-making is very important, because if patients feel like they’re heard, if patients feel like they’re a part of the decision that their healthcare provider made in helping them decide what is best for them, I think that is really important. And it would lead to patients actually adhering to treatment, following up with their healthcare provider, and also better physician-patient relationship, which I think is very important in some of these chronic diseases, where these relationships last for years, right? This is one of the chronic diseases, like a lot of times we’re telling our patients, this is like high blood pressure or diabetes, we have to learn to live with it.

And so they have to be friends with their healthcare provider, otherwise they’re not going to come see you again. So I think empowering the patient, making them a part of this decision of how we’re going to treat them, how we’re going to monitor them, how often should we be doing their labs, is it feasible for them, I think are really important ways to close those gaps and help our patients.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. What about you, Ms. Smith, what thoughts do you have in terms of strategies to address the gaps in care for MPN patients?

Kimberly Smith:

I agree with Dr. Jain, but also bridging the gap between community and tertiary centers. A lot of times, we treat patients in these big centers, and then we send them out to local places to whether they need transfusions or, or to continue care because the distance for them to make it here is just too far. So I think, bridging, collaborating with the outside community hospitals and community centers, and also even the nursing staff, the nursing staff coordinating, just coordinating the care so these patients will know that they are receiving effective care, whether they are at this tertiary center or they’re at their community center, because we all are working as a team to make sure they have everything they need.

And also including the family. Families are important. That was a big thing to me. Like, I want to make sure families knew that they were a part of this team also, because a lot of times it’s the family who is having to deal with the symptom management. They’re the ones who want their family member to go somewhere with them, and they’re just too fatigued to get out, and they don’t understand it, because we’re telling them that this is a chronic disease. They should be able to do some things, but they just can’t. So I think we have to make sure we’re bridging the gap with the families also.

Dr. Nicole Rochester:

So for you, Dr. Jain, are there specific strategies or maybe one strategy that you have implemented yourself, maybe where you work, that has helped to bridge that gap between tertiary care and the community setting, as an example?

Dr. Akriti Jain:

Yeah, that’s a very good point brought up by Ms. Smith. So what I do, because a lot of the patients I see in my clinical practice are second opinions. A lot of these patients I see one time, and maybe I’ll never see them again, or maybe I’ll see them in two years from now when things have changed, and they have more questions, or their provider has more questions. So what I do is I make sure the patient has my contact number so that they can always reach out if things change.

I make sure they have that MyChart set up so that they can always message me if they need me. The next step that I always take is I call their primary oncologist. I make sure they have my cell phone number so that they can call me if things change, if they have any questions. And the third thing I always tell my patients is you can use me however you want to use me.

So, I, a lot of times, would set up virtual visits in three months or in six months. That way, even if they live hours away from us, they can see us the tertiary care center through the comfort of their home. They can get labs locally and see us. They can kind of alternate between their primary oncologist and a tertiary care center, or maybe see us once a year. It’s dependent on how much they feel makes them comfortable seeing us along with their primary oncologist who’s doing most of the heavy lifting, providing the care close to their homes.

Dr. Nicole Rochester:

And to circle back to the family part, I’m going to go back to you, Ms. Smith. Is there a strategy that you can share that you and your team implement to really engage with the family members of MPN patients?

Kimberly Smith:

Yes. So we provide educational materials to the patients. We always ask them to bring a family member with them. If they can’t bring a family member with them, I’m willing to call a family member if they need information after the visit. I always give them the contact numbers that the family member can contact me also. MyChart is a big thing. Make sure they have MyChart because the family reaches out via MyChart also.

Another thing that I do is that I try to make sure that the family also has like the educational material too, because sometimes you can give it to the patient, but they don’t share it. So if a family member comes, if I pass out information to the patient, I pass it out to the family member also. I also provide them with websites that they can use, that they can utilize. Like the Cleveland Clinic is one of them that I have them use a lot, but, but websites that they can use where they can actually look up information on these different MPNs that they may have. So I think the educational piece is the biggest thing that I do with my patients.

Dr. Nicole Rochester:

Excellent. Thank you both for that. We talked a little bit about the perception that patients have when we talked about the Landmark study a little earlier in this program. And Dr. Jain, I’m going to come to you. How did the gaps in perception or perhaps the disconnects between the patient perception and the physician or healthcare provider perception of the disease burden, how do those gaps impact overall management and treatment outcomes for MPN patients?

Dr. Akriti Jain:

Sure, Dr. Rochester. So the disconnect between the physician and patient can become really important and where that occurs is because a lot of times our low symptom burden, low-risk disease patients are being observed. And the physician might think that I don’t think this patient warrants treatment, but the perception that the patient has of their symptoms might actually be very different. And I think what comes really handy here again is that MPN symptoms score, when you ask patients to rate the symptoms from 0 to 10, but 10 being the worst, you can actually see where they lie on the spectrum.

And I do these symptoms scores on every visit, because especially if I’m starting them on treatment, it really helps to know in an objective manner that what was the number that our patient rated fatigue on at their last appointment and what that number is now. And it’s not just fatigue, but all those 10 points and then symptom score, how are their night sweats, how is their itching, are they still having problems concentrating, have they lost weight?

So all these questions with a number attached to them, and it’s very surprising. You’ll see patients put in a zero for all these numbers and suddenly after three months, those numbers change. And so that really helps to know where the patient lies and so that we can close the gap between what the patient is perceiving about their symptoms versus what their provider is.

Dr. Nicole Rochester:

Ms. Smith, what would you like to add?

Kimberly Smith:

Yeah, I agree with that. I agree with that because using that symptom score, one of the questions is early satiety and losing weight. And that’s a big thing for these patients because they can end up with spleen enlargement. And so one of the main things that I kind of hone in on is, I want you to chart your symptoms. I don’t care what it is, Chart your symptoms. Even if it seems small to you, chart it. Because once you start them on drug, these things can change. And I just speak from one, just remembering one patient that I had who had an enlarged spleen and her main thing was, I want to eat. I just want to eat a burger and a full burger. And I haven’t been able to do that.

And we started her on treatment. And within three months, her main thing was, Kim, I was able to eat a burger and I ate the whole thing. So even though we probably can’t see on scans that it’s smaller, she could tell something was different. And that just made her happy to be able to do that. And so I tell them to chart everything. It doesn’t matter what it is, how mediocre you may think it is or minuscule you may think it is. It’s important because if things change over time, we need to be able to manage it.

Dr. Nicole Rochester:

Absolutely. Thank you. Well, this has been awesome. I have learned a lot as always. It is time to wrap up our roundtable. And I’d like to get closing thoughts from each of you. So, Dr. Jain, what is the most important takeaway message you want to leave with the healthcare professionals who will be listening to this program?

Dr. Akriti Jain:

Yeah, thank you, Dr. Rochester. I thoroughly enjoyed our conversation as well. I think the most important part of all of this is empower your patients. Tell them what they are suffering from. Tell them this is a chronic disease. Tell them you’re there for them. Use the resources we have the MPN symptom score. Use the medications we have if the patients meet those criteria, if they’re having symptoms. Sometimes it’s important to get down to the patient’s level and get to the point where they or get down to the patient’s level and feel what they’re feeling, rate their fatigue, and give them the help they need.

Dr. Nicole Rochester: 

Thank you, Dr. Jain. And Ms. Smith, what is the most important takeaway message that you would like to leave with our healthcare professional audience?

Kimberly Smith:

Thank you. I truly appreciated this and I loved it. This was awesome. But I just want to leave that, listen to your patients. They know their bodies. They know themselves. Listen to their family. They’ve dealt with them all their lives. They know when something is different. So just listen to them. Listen to them. Be receptive. And that way we can work as a team to make sure our patients get the best care that they need.

Dr. Nicole Rochester:

Well, thank you both. Just to echo what Dr. Jain and Ms. Smith have said, the most important takeaways are really involving our patients and their families, empowering our patients and families, educating our patients and families, and also valuing this multidisciplinary, interdisciplinary team. So thank you both so much again for being here and being part of this important conversation. And thanks to all of you for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. Again, I’m Dr. Nicole Rochester. Thank you for watching.


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Emotional Health | Why It’s Vital for Myelofibrosis Patients to Share Concerns

Why is it crucial for myelofibrosis patients to discuss their emotional concerns with their care team? Dr. Naveen Pemmaraju explains how managing anxiety and fear is essential to maintaining overall well-being. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program and Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju.

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Transcript:

Katherine Banwell:

Managing the worry associated with a diagnosis or concerns about the future, and we did touch upon that earlier, it can lead to anxiety and fear. Why is it important for patients to share any worries they may be having with their care team?  

Dr. Naveen Pemmaraju:

Well, I love this question. It really wraps up everything we’re talking about here. I believe that part of the journey for the patient does include mental and psychological safety. So, it’s very difficult to make major life decisions when one is not feeling mentally, or psychologically safe. So, that’s what you’re hitting on here. Anxiety, fear, and worry, of course, are a natural and important part of the patient journey with any cancer, much less a rare cancer and blood cancer on top of that. However, sometimes in some patients, it can become so paralyzing, so overtaking, and overwhelming that it may prevent the ability of the patient to receive information, process it, and then make a decision back. Yes, we want people to have caregivers, and power of attorney, all those things are essential, but we also want people to have their own agency in aegis.  

So, I would approach this from three aspects. I really love this question because I don’t think we were addressing it head-on 10 or 15 years ago. One aspect is the disease itself. These MPNs, systemic mastocytosis, eosinophilia, myelofibrosis, PV, ET, all of these MPNs can secrete these cytokines and granules that can mess up the patient’s mindset, even just profound fatigue leading to a slowing down of the neurological process. So, I think underlying control of the disease is something that can affect this. Number two is the side effects from some of these medicines. Interferon is a great example, a wonderful class of drugs that’s been around for decades, treated for solid and liquid tumors, but it has a known side effect of causing brain fog. Some of these issues can even cause depression and anxiety in some people. So, education, mitigation, following these things with dose reduction, that’s an important part.  

A third aspect, Katherine, is actually looking with a counselor and a therapist on the spectrum of this. So, normal, adjustment disorder, depression, for example. What we’ve had as a breakthrough at our center has been the supportive palliative care team. They’ve been phenomenal. So, this is a group of doctors who’s kind of one-third internist, one-third oncologist, and one-third psychiatry support.  

So, rather than the usual consults that we used to do either to psychiatry or to social work case managers, there is this burgeoning field of supportive care medicine which has revolutionized the care, I think, particularly for solid tumor patients and now hopefully for our blood cancer patients. So, I’m able to refer patients for a variety of reasons. There’s a fatigue clinic for overwhelming fatigue. There is obviously depression, and anxiety support, either with medications, talk therapy, or both. Smoking secession for folks who are still smoking and maybe either withdrawing or quitting is causing stress.  

So, it’s a really cool science and if your center has that, that’s something to inquire about. Then lastly, as we mentioned, a nice running theme today, Katherine, is looking for other medical stuff outside of the MPN. I mentioned thyroid earlier. Remember, you have a thyroid abnormality that can cause fatigue, depression, and anxiety, right? So, what’s your TSH thyroid function, and vitamin deficiencies?  

Screening for your other well-person screening exams, looking for solid tumors, looking for other conditions that may be mimicking the MPN, or mimicking one of your other aspects. So, again, it comes down to partnership with the primary care team and looking at that. So, I think those are some of the aspects that I want to mention, but it’s such an important part of the journey. I really have to mention that as well.