Tag Archive for: MPN Treatment

What Is Next Generation Sequencing for MPNs?

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What Is Next Generation Sequencing for MPNs? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) care may include the use of next generation sequencing.  Dr. Kristen Pettit from Rogel Cancer Center explains next generation sequencing and how it is used in MPN patient care.

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Transcript:

Dr. Kristen Pettit:

Next generation sequencing or NGS refers to tests done from the blood or the bone marrow that can look for many different genetic mutations at once. So we know that most patients with MPNs will have mutations in either JAK2, CALR, or MPL but many will also have additional genetic mutations.

These additional genetic mutations may be important prognostically as we know is, we know some of these additional genetic mutations can confer either higher or lower risk of the disease progressing over time. So, I think next generation sequencing or NGS panels should be a part of the work up for most patients with MPNs at the time of initial diagnosis, and probably again, at the time that there’s any concern for disease progression in the future.

What Is Precision Medicine for MPNs?

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What Is Precision Medicine for MPNs? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients have the option of precision medicine in the treatment toolbox. Dr. Kristen Pettit from Rogel Cancer Center shares insight about some forms of precision medicine, disease-specific factors, and potential future treatments for personalized medicine.

See More From the MPN TelemEDucation Resource Center

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Transcript:

Dr. Kristen Pettit:

Precision medicine or personalized medicine can take many forms in the MPN field, certainly decisions about whether to consider something like a stem cell transplant or personalized based on disease-specific factors such as the prognostic risk of the individual disease and based on person-specific factors, for example, the patient’s symptoms, their quality of life, their goals, and their other medical issues. Similar personalized factors go into other treatment decisions such as whether or not to start a JAK inhibitor or other treatment as well.

In the future, I think MPN care will continue to see more personalization, perhaps even involving information like specific genetic mutations, for example, there are drugs that are in development that may target on mutant calreticulin, so those might be possibly more specific treatments for folks just with those CALR mutations.

MPN Treatment Tools and Advancements

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MPN Treatment Tools and Advancements from Patient Empowerment Network on Vimeo.

Dr. Kristen Pettit from Rogel Cancer Center shares MPN treatment updates and recent approvals for patient care.

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What Is the Role of Next-Generation Sequencing in MPNs?

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Transcript:

Dr. Kristen Pettit:

So research in MPNs has really been moving at an extremely fast pace over the last few years, so just over the past few years, we’ve seen advances in nearly every aspect of MPN care, from diagnosis to risk stratification, to MPN treatment, to support of care. We’ve even seen two new drugs, approved for MPN treatment over the past year, the first was ropeginterferon alfa-2b or Besremi approved for polycythemia vera in December 2021. And the most recent was pacritinib (Vonjo) for patients with myelofibrosis with low platelets approved in February of 2022. So there have been lots of exciting improvements very recently, and I think very, many more to come over the next few years.

But there’s still a long ways to go, some unmet needs in the field still include challenges in treating patients with low blood counts, either anemia or thrombocytopenia, low platelets, both of those are still challenging clinical situations. Also, the situation when JAK inhibitors either don’t work well enough for a patient or stop working overtime, that’s a situation that’s very challenging as well. Fortunately, we have a lot of clinical trials and new investigations going on in both of those areas, and patients with low blood counts and patients who have had inadequate or loss of response to JAK inhibitors. So, stay tuned over the next year or two, I think we’ll see major changes in both of those periods.

What Do Biosensors Mean for Myeloproliferative Care?

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What Do Biosensors Mean for Myeloproliferative Care? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients can benefit from recent advances in medical uses of biosensors. Watch to learn about biosensor medical advances, advantages for MPN care, and future developments from biosensor use.

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Transcript:

Though biosensors may be more well-known for their use in testing for food and water contaminants, they have emerged for a variety of medical uses as well. Biosensors may be used by healthcare providers in patient monitoring, screening for infections, health management, and disease treatment.

For MPN patients, biosensors can aid in several aspects of their care. Biosensors can detect viruses and bacterial threats, track exercise levels and body chemistry remotely, detect harmful chemicals, track disease progression, and share health information between patients, providers, and anyone else whom a patient authorizes. All of these biosensor capabilities provide for more precise, personalized, and optimal care for each patient.

As biosensors evolve even more over time, they will continue to help refine healthcare. MPN patients can expect even more personalized care than are already offered, and quality of life during treatment should also improve since biometrics more accurately gauge factors like disease progression and treatment progress.

Please remember to ask your healthcare team what may be right for you.

What Do Telegenetic Consultations Mean for MPN Patients?

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What Do Telegenetic Consultations Mean for MPN PAtients? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients have a telegenetic consultation as another option that has emerged for the telemedicine toolbox. Watch to learn about telegenetic consultations, what they mean for MPN patients, and future developments.

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Transcript:

Telegenetic consultations are those that can be carried out via telemedicine with genetic counselors. With the rise of genetic mutations playing a factor in cancer care and treatment decisions, it’s a natural progression for telegenetic consultations to become another option in the telemedicine tool box that protects patients from exposure to viruses and potential infections and saves them valuable time, energy, and travel costs.

With personalized medicine becoming an integral part of MPN patient care that analyze genetic mutations like JAK2 mutations and MPL mutations, telegenetic consultations make sense as another part of the tools for MPN care. The future of MPN care looks brighter with these virtual care options as part of the equation.

A form of tattoos called e-skins have now emerged as part of remote health monitoring. Used for detecting physical and electrical functions including heart, muscle, and brain activity, e-skins have shown reliability in monitoring tests even under body stress situations like sweating and while consuming spicy foods.

Please remember to ask your healthcare team what may be right for you.

Thriving with an MPN: What You Should Know About Care and Treatment Resource Guide

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Why You Should Understand Your MPN Treatment Plan

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Why You Should Understand Your MPN Treatment Plan from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) expert Dr. Mark Heaney discusses the importance of understanding the goals of your treatment plan, including key questions to ask your doctor before beginning therapy.

Dr. Mark Heaney is a hematologic oncologist and Associate Professor of Medicine at the Herbert Irving Comprehensive Cancer Center of Columbia University. Learn more about Dr. Heaney, here.

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How to Engage in Your MPN Treatment Decisions 

Transcript

Katherine Banwell:

Are there questions that patients should ask about their proposed treatment plan?

Dr. Heaney:

Yeah. I think patients should ask a lot of questions. I think a lot of patients don’t ask as many questions as they should, but I think there are a number of things that are important for patients to know. Number one, the question is whether they need treatment at all and what happens if they defer treatment. So, really, what – and, that’s another way of asking what the goal of treatment is going to be. Now, I think patients should have an expectation of what their physician thinks the benefit of starting a particular treatment might be.

I think that they should ask questions about the drugs that they’re taking. Are they new drugs? Are they well established? What are the side effects? And, I think the side effects fall into a number of different categories. Some of the side effects are immediate side effects that patients have and notice soon after they start taking the drugs.

Some of the side effects can be much more subtle, and we know, for example, that some of the agents that are used to treat myeloproliferative neoplasms can suppress the immune system and can make patients more susceptible to infection. Especially today, with lots of infections out there, it’s important for patients to know whether this is something that they should be particularly attuned to. I think that patients should also find out whether there are any lifestyle inhibitions.

So, sometimes, how many times you take a drug, whether the drug has to be taken on an empty stomach or with food – those sorts of things, I think, can be really important in deciding whether this is a treatment that’s right for the individual patient.

Katherine Banwell:

Yeah. Dr. Heaney, how would you define treatment goals, and why is it important that patients understand the goals of their treatment plan?

Dr. Heaney:

Often – often, patients do start treatment without a clear understanding of what the goals are, and I think sometimes, the goals that physicians have may be different than the ideal goals of the patient. I think we’re really fortunate in myelofibrosis today that we now know that ruxolitinib is something that prolongs survival, and we have a drug that has that ability.

And, I think articulating that as a goal to patients is important in their understanding of why a physician might want to push through some toxicities and say, “I know that this may be causing some GI upset, but we’re doing this because we think this is something that may help you to live longer.” So, I think that’s part of – and, that may be the physician’s main goal. That may not necessarily be the patient’s main goal, and the patient’s main goal may be quality of life. And so, having – it goes back to the question about dialogue and understanding what the patient really wants out of his or her treatment and making sure that the patient and the physicians are talking to each other, not past each other.

Health Educator Turned MPN Patient Speaks to Importance of Specialized Care

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Health Educator Turned MPN Patient Speaks to Importance of Specialized Care from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patient and health educator Julia Olff helped others navigate the healthcare system before her diagnosis with myelofibrosis and later with ET. Watch as she shares her unique experience and how finding MPN specialists can help patients in receiving optimal care.  

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Transcript:

Julia Olff:

Well, as a health educator and as a former hospital administrator when I was diagnosed with myelofibrosis, I feel like I had a particular reaction to the diagnosis that might be different from others who didn’t work in healthcare. I was both fascinated, which may sound really bizarre, that I was being diagnosed with an illness that I did not feel. Also, an illness I had not heard of, although I knew about some of the treatments that might be proposed because of my work as a health educator. So, I feel like I kind of went into health educator mode and health navigator mode, and that gave me a leg up in terms of knowing very early on, that once my ET transformed to myelofibrosis, I knew that I needed to see an MPN expert. And because I worked on health education because I worked in hospitals, I understood that I want, I needed to see a physician who had a depth of expertise, who had a volume of patients, who had a lot of experience with the drugs that existed. Although, in 2008, there was no approved, drug for myelofibrosis, but I knew I needed to go to the place where there was…

Where I had a better chance of getting the latest treatment, and I was diagnosed by a community oncologist who was lovely and one of the nicest people, and one of the nicest physicians I’ve seen, but it was clear he was not steeped in MPNs, because he treated patients across a spectrum of cancers. So, in that way, I think I started out in a different place, I also know that hospitals and healthcare can be very overwhelming, and I had a bit of the language and the world and some of the sort of…I understood a little bit more, I think about what my physicians might have been sharing with me, and if I didn’t, I felt empowered and not that this is easy by any stretch and it continues to be a challenge, but I knew that I needed to ask questions. I knew that I needed to read more about my illness, I knew I needed to vet my doctor as well, and I also figured out over time that as I was going to have this illness, hopefully in the sense that I hope I continue to live well with myelofibrosis and stay alive, that I was going to be seeing an MPN expert for a long time.

So, I think that influenced my point of view, I kind of take it as a job, so as to my personality, so I have a health notebook, I need to have one from the very beginning, I knew I couldn’t remember everything, I had to write it down. I knew I had to track what I was feeling so I could share it with my doctor, and I knew that from being a health educator, I think no one told me to do those things, and certainly, physicians don’t really know to tell you that, so I think in a lot of ways, I was approaching my illness in a very serious manner because I had experience in healthcare, and the last comment I’ll make is, I think from navigating the system, navigating health insurance, I knew a little bit from my experience as a caregiver already, and also from a health educator, I understood this is another area where I needed to empower myself or ask questions, or not take some of the information that may have been shared with me initially as on face value, that it was okay to ask more. As I said, I’ve had this illness for 13 years, I’ve also been caregiving for an adult child with illness, and every time I call the insurance company to ask a question about an explanation of benefits or why something isn’t covered, and learn a tiny bit more, and I add that to sort of my toolkit. 

Balancing MPN Treatment Adherence and Mental Health

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Balancing MPN Treatment Adherence and Mental Health from Patient Empowerment Network on Vimeo.

Balancing myeloproliferative neoplasm (MPN) treatment adherence along with symptoms can sometimes be a challenge. Watch was myelofibrosis patient Julia Olff explains how symptoms and executive functioning can impact continuation of MPN treatment routines.

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Transcript:

Julia Olff:

I think doctors and nurses underestimate how well patients can adhere to treatment and how that relates to one’s mental health. There are times where I have not felt as well and had a kind of foggy brain and had episodes of forgetting to take my twice-a-day treatment, so that’s sort of one type of treatment adherence that I think is just affected by your overall mental well-being, and then there’s the bigger part of it that is about seeing the full picture and all of the things that you have to do to continue with treatment so if it’s pills, for example, here, there’s a lot that one needs to do that I think we take for granted or assume everyone can do that, from remembering to refill your medications to going to actually physically go get them if you have to do that. Some are mail order, in the case of myelofibrosis. Knowing when to take them, figuring out when it may be better based on when they’re prescribed to take…when it may be better for you like with food. I know when I was taking ruxolitinib (Jakafi) that I would take it just as I was going to bed, but I would feel unwell for a while I was laying in bed, and I think it relates to your mental well-being because, over time, treatment also can affect…

Treatment has side…can have side effects, and those side effects can also influence how you’re feeling emotionally, how good you’re feeling as a person, they can affect your energy levels, so the illness can affect…fatigue is one of the number one when problems that people with myelofibrosis face, and then you add treatment to it, and there’s an impact on how well you feel overall, so I think treatment adherence is very much tied to your mental well-being, your outlook, and your ability also to…it’s called executive functioning, how well you can kind of organize your day and your life and they’re all intertwined, I believe.  

What Impact Does Telemedicine Have on Clinical Trials for MPN Patients?

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What Impact Does Telemedicine Have on Clinical Trials for MPN Patients? from Patient Empowerment Network on Vimeo.

For myeloproliferative neoplasm (MPN) patients, what impact does telemedicine have on clinical trial access? Expert Dr. Jamile Shammo from Rush University Medical Center explains the current environment for clinical trial access and her perspective on how trial access should be approached in the future for improved MPN care. 

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Transcript:

Dr. Jamile Shammo: 

So, there’s no doubt that COVID has certainly impacted our ability to enroll patients on clinical trials. There have been a lot of governing bodies that have created various rules and regulations around that to facilitate enrolling patients on clinical trials, and I think right now we are seeing that this has become feasible, such that we are able to enroll patients yet again on the clinical trial. So, now I think that we have the vaccine that is available, it has become a little bit more feasible and possible to do so. So, this should not stop us. I think we should continue to seek better treatments for MPN patients actually the only way to do so is by you know, only patients on trials, because we certainly don’t have a perfect way to provide care at the moment, we always need to come up with better ways and that would be one way to do so. 

The MPN community truly should partner with their physician and learn as much as possible about their disease and about available treatment options, and perhaps show some support for available clinical trials because this is the only way that we can perhaps understand how we can do a better job in treating patients who have MPNs. 

MPN Treatment: What Is the Role of Biomarkers?

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MPN Treatment: What Is the Role of Biomarkers? from Patient Empowerment Network on Vimeo.

What role do biomarkers take in myeloproliferative neoplasm (MPN) treatment? Dr. Naveen Pemmaraju defines biomarkers and explains how molecular mutations play into MPN disease risk levels and treatment options.

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

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Transcript

Katherine Banwell:

Dr. Pemmaraju, let’s talk about biomarker testing. Can you help us understand what biomarkers are and how they may affect treatments?

Dr. Pemmaraju:     

Yes. Biomarkers – I think that word gets mentioned a lot with really no definition, because it’s one of those words that can be whatever someone wants it to be. So, you’re right. For us, it’s a very important word in MPN. Bio meaning of life, scientific, and then marker meaning some kind of a measuring stick that has a value.

Well, there are two ways to look at biomarkers. One is the obvious, which is we have the defined big three molecular mutations. So, that’s JAK2V617F, followed by CALR mutation, followed by MPL.

Those are the big three. Those make up about 90 percent of all patients with MPNs. You’re technically not born with them, although new data suggests that you may acquire these mutations right after birth. So, those markers are important because they can be used to diagnose the disease, right? Particularly in the challenging patient. They have high platelets, you can’t tell if it’s reactive or ET. Okay, so they’re helpful with diagnosis.

Maybe some studies have shown that some of these markers can be predictive, Katherine, of blood clots. Let that research be ongoing. And then, obviously, some of these may be helpful in terms of designing the future treatments, particularly targeted therapies. So, I think biomarkers are part of our field, if you look at it that way, at diagnosis and risk stratification prognosis. But there are other factors that are starting to come out. One is there are molecular mutations outside of these big three.

So, outside of JAK2, CALR, and MPL, that are very important actually. Not everyone is checking for them. They are ASXL1 mutations, EZH2, IDH1 and 2, so on and so forth.

So, these are extended molecular markers that can be checked at some doctors’ offices that now, in the latest scoring systems, if you have one of those or more than one or two, they can elevate your risk score. So, if you have low risk or intermediate risk myelofibrosis, they may make you intermediate or high risk.

So, that may be a bit more complicated than what most people are aware of. But just so you know, there are markers that can be readily checked that can tell if your disease may be a bit higher risk than we though, say, 10 years ago.

I think other biomarkers that we look at are some of the labs that are just the regular labs that are on almost every panel, but they can tell a lot about the disease. There’s the LDH, lactate dehydrogenase. There are several markers, such as CRP and sed rate.

So, anyway, there are a lot of labs that we can check depending on where you are in your disease state that can kind of tell us a lot about how inflamed you are, how active your disease is at the moment, and then that will lead to further confirmatory tests. So, I think, yeah, in general, this is an active, developing area of research in our MPN field.

How to Engage in Your MPN Treatment Decisions

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How to Engage in Your MPN Treatment Decisions from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients engage in their treatment decisions? Dr. Naveen Pemmaraju shares advice for taking a more active role to empower yourself to receive MPN care that’s best for you.

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

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Transcript:

Katherine Banwell:    

Lately, we’ve been hearing this term “shared decision-making,” which basically means the patients and clinicians collaborate to make healthcare decisions. And it can help patients to take a more active role in their care. So, I’d like to get your thoughts on how best to make this process work.

Dr. Pemmaraju:         

This is a passion area to me. I think this is so important that  you bring this out. I think a generation or two ago, Katherine, it may have been common for there to be more of a one-way monologue, if you will, doctor to patient, and that may have been the majority of the conversation before.

I don’t see it that way anymore, and most of my colleagues don’t either. I think it should be a dialogue, as you said. It should be a back-and-forth communication, one that learns and evolves over time as any real relationship would, right? Outside in the real world. So, I think that’s important. Number two, I think trust needs to be earned, not just given.

So, that means patient and physician, and really the physician team – so, all the other members of the team – building that trust over time through frequent communication, visits, all of this. And then, finally, I think the key here is that a lot of patients always ask, “Hey, what can I do on my own?” I’ll tell you what you can do. You can be involved and read and empower yourself if you’re able to. If you’re able to and you can. Many may not be able to due to their illness or for other reasons.

But if you are able to, I think it’s great to read online. There, I just said it. Let me repeat it to make sure everyone heard that. I want you to read. I think it’s fine. Consult Dr. Google. What’s the worst that happens? The worst that happens is you find misinformation. Well, don’t keep it to yourself, right? So, Google, look up things, go to social media, see what experts in your area are talking about, go to Facebook, go to the patient groups. But remember, everyone’s case is different. Someone else’s is different from yours, and yours is different from the next. So, gather information like a sponge.

Formulate it, synthesize it in the way that only you know how to do, bring some notes, and then talk about it with me at the next visit, “Hey, I saw this on the Internet.” “Okay, great, let’s talk about that.” Or, “Hey, this new formulation of interferon is coming.” “Great, let’s talk about it.” So, gather information, sort out signal from the noise with your healthcare team. Sort that out and then move on, move on, move on. So, I think these are some of the aspects of what’s called shared decision-making. No longer a monologue, one-way street. Let’s have a dialogue, let’s have a partnership, let’s figure out a way to empower each other in this journey.   

I’m a big fan of patients being empowered to ask anything that comes to mind. And again, that’s why I love this discussion because maybe there might be some people out there who are shocked, frankly, at what we’re talking about here. I think it’s great to do what you said. Yes. I think do your research, online or otherwise. Come up with a list of questions. Bring – if you’re able to, of course. If you have the ability to, bring one person with you. Or nowadays, on the telehealth, we put one person on through the phone during the pandemic time.

And then – yeah. I mean, yeah, sure, just you hear about something, ask about it. The worst thing that your doctor says is, “Hey, that’s only a research test. That’s not available.” It doesn’t hurt to ask. And it may help to lead to other discussions. I think it’s also a good idea to get a second or a third opinion if you need to. There, I said it. It’s your body, it’s your life, it’s your choice. I think, yes, advocate for yourself, because at the end of the day, who else is going to do that?

Know What Your Doctors Know – MPN

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This video was originally published by National Comprehensive Cancer Network on May 24, 2018, here.

Experts discussed the treatment and challenges of myeloproliferative neoplasms (MPN) in a live webinar hosted by the National Comprehensive Cancer Network (NCCN) on May 1, 2018.