Tips for Discussing MPN Clinical Trials With Your Doctor

Tips for Discussing MPN Clinical Trials With Your Doctor from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) expert Dr. Mark Heaney shares advice for talking to your doctor about clinical trials and lists credible resources to help patients find information about clinical trials.

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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Transcript

Katherine Banwell:

When it comes to new developments in research, how can patients discuss this type of information with their doctor to find out if there’s a new approach or a clinical trial that might be right for them?

Dr. Heaney:

Well, I think the first question is to ask if there are clinical trials available.

Unfortunately, in the U.S., clinical trials aren’t available in every location, and often, patients have to go to a larger medical center, often an academic medical center or research center, to have access to clinical trials, and I think that’s one of the inherent challenges of our health system. I don’t have an answer to that.

But, there are lots of places for patients to find out information about clinical trials.

The National Cancer Institute has a website that’s really active. There are a number of blood-disease-focused and MPN-focused patient organizations that patients should avail themselves of. The Leukemia & Lymphoma Society is one that’s been a long advocate for patients, and there are a number of MPN-focused organizations as well.

And so, I think patients should maybe go to the Internet and look around a little bit to get a little information for themselves, but I think also asking their physicians if they’re aware of trials that are available. Within most of the major urban centers, there may be multiple institutions that have a different collection of clinical trials, and I think if you’re being taken care of by a physician at one of those centers, asking him or her if there is a trial that may not be at that center, but might be available in New York or who they might talk to to find out about those trials is a really reasonable thing to do, and a way for patients to self-advocate.

But, it often does require more energy to do that, and I think one of the challenges for some patients with MPNs is that the disease takes away some of that energy, and so, enlisting a family member or friend to help give voice, to advocate for you, is another way of overcoming that.

Promising Research and Treatment Updates From an MPN Expert

Promising Research and Treatment Updates From an MPN Expert from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) expert Dr. Mark Heaney shares promising news about about treatments being studied, and how these advances may impact the future of MPN patient care.

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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Transcript

Katherine Banwell:

When it comes to MPN research and emerging treatment options, what are you excited about specifically?

Dr. Heaney:

I think that there are a lot of exciting treatments in MPNs. Now, I’ve been doing this long enough that when I started, we really didn’t have very many treatments, and I think the last few years has brought a number of very promising treatments, and I think more than that, there’s a buzz and much more interest within the physician investigator community and within pharma to develop treatments for patients with MPNs, recognizing that MPNs are still relatively rare diseases.

I think we’re on the brink of having several new treatments for myelofibrosis, and as of today, they’re investigational, but they may be available even within the next year, and that will give us more opportunities. Drugs like pacritinib and momelotinib, I think, provide effective treatment options for patients who may not be responding optimally to ruxolitinib or in whom ruxolitinib may not be the best choice because of low blood counts.

I think that drugs like ropeginterferon, which may well be approved soon, may provide another treatment for patients with polycythemia vera.

And then, beyond these drugs, which are both – which are all in late-phase investigation, there’s a plethora of drugs that appear really promising that are earlier in evaluation.

I think one of the things that’s been not really attainable with the drugs that we’ve had to date has been to really reduce the contribution of the mutant clone to blood cell production, and this is a concept that has really revolutionized the treatment of patients with another myeloproliferative disease, chronic myeloid leukemia, and we know from that disease patients who had suppression of the malignant clone have done remarkably well and now live lives that are really indistinguishable from patients who don’t have leukemia.

I think the new drugs that are in clinical development are adding to the ability of suppressing them more than clones, and so, we’re getting closer to drugs and drug combinations that may have that ability. There is, for example, a drug that’s in late-stage development, a BET inhibitor – that’s CPI-0610 – that’s now entering Phase III trials that seems to be very promising.

There are other drugs that attack other pathways, like MDM2 and the BTK pathway, that are also very promising.

And, I think they’re also – we’re also on the advent of introducing cellular therapy into myelofibrosis, so that’s another dimension of treatment, and I think all of these will present new opportunities for patients in whom ruxolitinib may not work or may not be the optimal therapy.

Why You Should Understand Your MPN Treatment Plan

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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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.

Will Your MPN Progress? What You Need to Know.

Will Your MPN Progress? What You Need to Know. from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasms (MPN) expert Dr. Mark Heaney discusses how MPNs may progress from one to the next and addresses the possibility of slowing disease progression.

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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Transcript:

Katherine Banwell:    

Patients living with MPNs are often concerned about disease progression. Will everyone progress?

Dr. Heaney:

Now, we don’t know the answer to that question. There are patients with myelofibrosis and other MPNs who we know live more than 20 years with their disease.

In general, the natural history of the disease is one of gradual progression, and some people have more rapid progression than others. We know that there are patients who will die of complications of their disease, but not everyone will progress, and there are some patients where observation without treatment, even in the face of some progression, may be a very reasonable treatment plan.

There may be times, though, when it’s not really possible to maintain a quality of life without some treatment, and one of the ways of slowing that kind of progression may be with some of the available therapies of – approved therapies and investigational therapies. But, I guess the short answer to your question is not everyone will die of his or her disease, even if the disease does progress, and there are some patients in whom that progression is so slow that they’re able to live really full lives without it – without the disease’s interfering with their lives.

Katherine Banwell:

Is there a way to prevent progression?

Dr. Heaney:

Well, there isn’t a magic pill that stops progression. A lot of my patients ask if there’s some diet, if there’s something that they can do that will change the course of the disease.

And, the short answer for, I think, the overwhelming majority of patients is there isn’t anything that’s a magic bullet. We believe that drugs like ruxolitinib in myelofibrosis can slow the progression of disease.

There are drugs in other MPNs that we also think may slow disease progression even if they don’t completely halt progression. For some patients – admittedly, the minority – who might be candidates for allogeneic stem cell transplant, we know that that can be curative, and so, in that way, that can prevent progression in those patients.

And so, I think it’s important to, again, go back to your physician, understand what progression means, understand what – how the proposed treatment might interact with that progression, and again, getting back to the question of outcomes and goals of therapy, understand clearly what the treatment plan is aimed to do.

How to Partner With Your Doctor on Treatment Decisions

How to Partner With Your Doctor on Treatment Decisions from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasms (MPN) expert Dr. Mark Heaney explains the role of shared decision-making when choosing therapy and discusses how MPN patients can benefit from taking an active role in their care.

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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Transcript:

Katherine Banwell:    

 The terms “shared decision-making” is being used lately when we talk about patient care. What does that term mean to you?

Dr. Heaney:

Well, I think it’s really important for patients to be involved in their care, and I think it’s part of shared care, and I think that patients who are really in partnership with their physicians are able to make better choices, and there’s much better communication.

So, to me, that’s the basis of the physician-patient relationship. It’s less of an asymmetrical relationship and much more of an equal relationship.

Katherine Banwell:

Why should patients take an active role in their care? How do they benefit?

Dr. Heaney:

Well, patients who take an active role in their care, I think, provide much more input to their physicians and let them know how they’re feeling, and I think that allows their physicians to know much better what kind of side effects they might be having, whether they’re getting any benefit from the drug, whether they’re having symptoms that are related to the disease, and that kind of communication is really central to patients being able to make the best decisions for themselves and getting the best advice from their physicians.

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NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients

NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients from Patient Empowerment Network on Vimeo.

Is the COVID-19 vaccine recommended for people living with cancer? Dr. Erin Roesch shares recommendations from the National Comprehensive Cancer Network (NCCN) for those undergoing cancer treatment, including guidance on mask wearing and advice for family members.

Dr. Erin Roesch is a breast medical oncologist at the Cleveland Clinic. Learn more about Dr. Roesch here.


Transcript:

Katherine: 

Many cancer patients have questions about the COVID vaccine. Is it safe? Do we need to continue wearing masks? Here to address these questions is cancer expert, Dr. Erin Roesch. Dr. Roesch, would you introduce yourself?

Dr. Roesch: 

Hello. And thank you for inviting me to participate in this very important conversation. My name is Erin Roesch. I am a breast medical oncologist at Cleveland Clinic.

Katherine: 

Excellent. Thank you so much for joining us today. I’d like to run through a list of concerns that cancer patients have about vaccines in general and the COVID vaccine specifically.

So, let’s start with a basic question. Should people get vaccinated if they have cancer?

Dr. Roesch: 

Yes. All individuals diagnosed with cancer should get the COVID-19 vaccine as recommended by the National Comprehensive Cancer Network or NCCN.

An immunocompromised state makes many people with cancer at higher risk of serious COVID-19 illness. Those who are vaccinated are less likely to become sick with COVID-19. And, also, vaccinated people who do get COVID-19 are much less likely to become seriously ill.

I would also mention that those living in the same household as a person diagnosed with cancer and caregivers or other close contacts should also get vaccinated.

Katherine: 

Another common question is whether people with cancer should wait for any reason to get the COVID-19 vaccine.

Dr. Roesch: 

Most people with cancer should get the vaccine as soon as they can with a few exceptions according to NCCN.

People in the process of receiving stem cell transplant or cellular therapy should wait at least three months after they finish treatment to get vaccinated.

Those diagnosed with certain forms of leukemia should also wait a few weeks after receiving treatment to allow their immune system to recover so the vaccine can be effective.

It’s not been clearly defined exactly how chemotherapy affects responses to COVID-19 vaccines. But some data suggests that immune responses may not be as robust. However, it is still recommended that those receiving chemotherapy and also immunotherapy and radiation should get vaccinated whenever they can.

Katherine:

I think a lot of people are concerned too about whether one vaccine is better than another. What would you say to them?

Dr. Roesch:

And that is a common question that I often get in my clinic. And I advise my patients to receive or take whatever vaccine they are offered.

We don’t really have any studies or data at this point suggesting one being better than another in cancer patients.

Katherine: 

Some people are wondering if the vaccine can give a person COVID-19. How would you address that?

Dr. Roesch: 

I would say that as none of the currently available vaccines are made with a live virus, the vaccine itself can’t give a person COVID-19. By getting vaccinated, actually, those who are immunocompromised are really helping society to prevent the spread of COVID-19. Immunocompromised people who get COVID-19 may be more likely to infect others due to prolonged shedding of the virus after infection.

Katherine:

What about side effects? Are the vaccine’s side effects worse for people with cancer?

Dr. Roesch:  

No. Side effects do not appear to be worse for those diagnosed with cancer. Results to date suggest that the vaccine’s side effects in people with and without cancer are really no different.

These side effects, as we have seen, may include arm soreness, rash, fatigue, chills, fever, headache, for example.

Katherine: 

And, finally, can cancer patients stop wearing a mask after they’ve been vaccinated?

Dr. Roesch:

Cancer patients should continue to wear a mask post-vaccination. Many people with cancer may have a harder time actually fighting infections and may not respond as well to vaccines. So, people diagnosed with cancer and their close contacts should get vaccinated and then continue to follow precautions, which include wearing masks, social distancing, hand hygiene.

Katherine:

Is there a certain length of time that people need to continue wearing a mask after being vaccinated?

Dr. Roesch:  

At this time, I would recommend patients continue to follow the CDC guidelines that are currently in place. And at this point, I don’t think we have a projected end time for that yet.

Katherine:    

Is there anything else you’d like to share with cancer patients who may be concerned about vaccinations?

Dr. Roesch:    

I would encourage those diagnosed with cancer to not only themselves get vaccinated but to also really voice and stress the importance of vaccination to those that surround them, including, again, members of their household, close contacts, and even beyond their inner circle.

I would also advise people to try and avoid letting the concern of possible side effects related to the shot deter them from getting it. The symptoms of COVID-19 can be much worse and potentially serious for some compared with the relatively minor side effects that we’ve seen with the vaccine itself.

I also would mention I’ve had personal patients that have expressed concern about functioning of their immune system while receiving chemotherapy and how this might affect their response to the vaccine. I do emphasize to them that even though responses might not be as strong as they may be in the absence of active treatment, I feel like the potential benefits of the vaccine still outweigh the risks in my mind.

Katherine:   

Thanks so much for joining us today, Dr. Roesch.

Dr. Roesch:

Thank you for having me.

MPN Caregivers: How to Provide Support During Appointments

MPN Caregivers: How to Provide Support During Appointments from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) caregivers provide support during office visits? Dr. Naveen Pemmaraju shares key advice for caregivers to help improve and increase communication with healthcare providers for the sake of their loved one.

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Transcript:

Katherine Banwell:    

Well, we have another audience question. This one is from Richard. He wants to know what advice do you have for caregivers, and how can he be supportive during appointments?

Dr. Pemmaraju:         

Yeah. Richard’s question really is so important. Really, before the pandemic and now with the pandemic this extended time, this is the most important question that’s coming up. This is a challenge. I think a lot of our patients who are older, frail, live alone, they don’t even have the option to do that. That may be 25 percent of our patients right there,

And that’s very heartbreaking and difficult, and clearly, their care – it may not be compromised, but it’s certainly limited in some ways without getting that other perspective. Right? So, I think that’s important.

Now, out of the 75 percent of the people who may have someone that can be a part of their life, a lot of these folks, Katherine, are limited because of the pandemic. Most hospitals, smartly, I think, still have restrictions on not allowing every single person in the building just for health and safety protocols. So, telehealth has had to be a substitute, I would say, for that, and in a lot of cases, has been helpful. In some cases, frustrating, obviously, with technical difficulties, etcetera, etcetera.

I would say that the key is – and I really want this to be very specific. It would be easy to just say, “Yep, bring a loved one to your visit.” No, it’s not that easy, right? So, now, during the pandemic, I think two things are very important and what I’ve noticed. One is, if the patient is able to, if their health allows them to, prime the loved one or caregiver, “Hey, I’m going to be in the doctor’s office from this time.”

And I always say make it like the cable person visit, right? From 8:00 to 5:00. So, “Hey, today, on Tuesday, if you can have your cell phone on you, that would be nice, because I’m going to patch you in, and you can listen in the background.” This is actually a key pearl I can give to people. You’d be surprised how helpful that is. Because most people, if they’re not living in the same household or whatever – “Oh, I didn’t even know you were going to be – okay.”

Number two, when the loved one or caregiver is involved, which I encourage for everyone, try to discuss with them the night before, if your health allows you to, to go over some of the key questions. Say, “Hey, guess what? I only understand about 7 to 10 percent of what goes on in these visits, but I need you to ask this.” So, you can kind of prime your loved one to do that.

And then, lastly, you had mentioned earlier to have this list of questions. Well, that’s a great thing to give to the caregiver, right? So, if you’re able to use email and your family member is in California and you’re in Texas, maybe a quick email the night before.

“Hey, here’s what I’m thinking. In case I forget, will you ask this to the doctor?” A lot of these visits may only be five or 10 minutes, but you’d be surprised, if you have a list of two or three questions – boom, boom, boom – and then it’ll alleviate those worries there.

Lastly, I would also say don’t feel – I want to tell this to the viewers out there. Don’t feel pressured when you’re in the visit with us that you have to get every single thing out. And what I mean by that is now with email and the electronic medical record portal systems, there is some ability to contact people during – I’m sorry, after and between visits. So, maybe that might help you to not feel so much pressure in the visit.

Expert Advice for Learning About Your MPNs Online

Expert Advice for Learning About Your MPNs Online from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients safely learn about their condition online? Dr. Naveen Pemmaraju offers key tips for finding credible information and how to process MPN information with members of your care team.

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, you’re very active on social media, and patients often share information with one another. So, what advice do you have for patients to ensure online sources are actually credible?

Dr. Pemmaraju:         

Wow, great question. First thing I would say is I encourage everyone to get out there. so, that’s key opinion leaders, local physicians, nurses, pharmacists, patients, caregivers, everyone. But Part 2 is what you said is true. Most everything out there is noise. It could be garbage. It could be background. It could be misinformation. So, you do have to have some way to filter it.

I call it signal from the noise. That’s a common phrase that a lot of people on social media use. I guess three things that I would give as tips. One is don’t be afraid to read and get on there, but I would just say whatever you read, take it with a grain of salt, as you said, and just write everything down where you have it organized.

Number two, tend to gravitate towards known experts and known sources. So, for example, you mentioned that I’m on there. That’s great. Ruben Mesa, our great friend and colleague, etcetera, etcetera. So, if you know who the 10 or 15 thought leaders are on Twitter or social media, see what they’re saying directly. That’s nice because it’s straight from them to the public.

And then three is stick with the organizations and entities that are trusted sources. New England Journal of Medicine, ASCO, ASH, programs such as yourself, etcetera, etcetera, who are trying to put out there the latest and honest information.

Okay. So, now the fourth part, though, I think is the most important, which is what we said earlier, which is whatever you look up, discuss it with your doctor and your physician team. Period. Because no matter what research you did, no matter what patients groups you join, there might be something that either doesn’t apply to you, or worse, as you said, it could be actual misinformation, and it’s a red herring.

So, maybe find information, figure out a way to filter it, crosscheck it, and then bring it up to your doctor team. I think that’s a winning way for success with information nowadays.

Why You Should Speak Up About MPN Symptoms and Treatment Side Effects

Why You Should Speak Up About MPN Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Why should myeloproliferative neoplasm (MPN) patients speak up about symptoms and treatment side effects? Dr. Naveen Pemmaraju explains the importance of reporting any issues you may be experiencing to ensure the best care 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:    

Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Pemmaraju:         

Well, I’m going to be that magician who you watch the TV show, they give away all the secrets. So, this is the big secret. Your doctor cannot read your mind. I hate to say that, Katherine. I just said it here, and it’s going to surprise some people. No, I mean, seriously. Right. So, I think the problem with the MPNs – not the problem, the caveat, the difficulty – is if you are a patient, you have this war that’s suffering inside of you. I know that as an expert person. You know that as a patient. But whoever you’re sitting in front of is not going to know that.

And there are two reasons for that. One is you don’t look like that. Most of our patients – whatever this is, I’m going to put this in big air quotes, so in case someone’s not watching this and they’re only hearing, I’m putting air quotes. People say to my patients, “Wow, you don’t look like a cancer patient.” Whatever that means, right? So, most of our patients don’t have their hair falling out, etcetera, etcetera. So, there’s that aspect of it, the visual education part of it.

Then there’s also the part, which is a lot of these symptoms burdens are not obvious on the physical exam. You cannot tell by talking to someone or looking at them if they have night sweats, bone pain, even itching, any of these things. Fatigue. You can’t tell if someone has fatigue most of the time unless you ask them. So, this is one of those where shared partnership in decision-making is not just a generic phrase. This is important.

I would say that for a patient with an MPN, the MPN symptom burden – the questionnaire, the 10 questions that we now have settled on – that can tell so much more or as much as the physical exam or the blood counts.

So, it’s imperative. It’s not just a luxury. It’s imperative. And if the patient themselves is unable to speak up, then if the advocate or caregiver or loved one can, if that person is available.

The other point I would say to this is that oftentimes the symptoms can precede – they can come before laboratory changes, physical exam changes, all these things. So, a constant, constant communication, “Hey, I was playing 18 holes of golf last year.”

“Now I can’t even get out of bed.” Hello? That tells you more than almost anything you can read on a piece of paper. So, you, as always, are spot on with what you said. And this is the case where people say, “What can I do to help my care?” This is it. Speak up, speak out. It’s your body, it’s your life, make sure you feel empowered to do that.

How Is MPN Treatment Effectiveness Monitored?

How Is MPN Treatment Effectiveness Monitored? from Patient Empowerment Network on Vimeo.

How is the effectiveness of MPN treatment determined? Dr. Naveen Pemmaraju describes key factors to monitor treatment effectiveness to ensure optimal patient care and to determine when it may be time to consider a change in therapy.

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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COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?


Transcript

Katherine Banwell:

Once on therapy, how is the disease monitored and how do you know if the treatment is working?

Dr. Pemmaraju:         

So, it differs from each disease, but let’s take polycythemia vera for a good example. So, let’s suppose you have polycythemia vera. I think there’s three markers here that you can check. One is the blood counts, right?

So, you want to make sure that the blood counts are controlled. New England Journal, five or six years ago now, our Italian colleagues published a very seminal paper which shows that the goal of therapy should be that the hematocrit should be below 45. So, that’s actually a very nice number to have. So, not just waiting for symptoms of the disease but keep the number low. And if you do that, that correlates with decreased cardiac events, thromboembolic events.

Number two, I think that, besides the blood count, the spleen. The spleen and liver size also is a nice surrogate for how the disease is doing. So, if that’s enlarging or getting out of control, that may be time to stop what you’re doing, reassess. The disease may be progressing to myelofibrosis, for example.

And then I think, lastly, the absence of stuff actually helps, too. So, the absence of major bleeding, the absence of blood clots, the absence of transformation to MF. I think if the quality of life is good, you’re decreasing blood clots and bleeding, you’re not going to a more advanced disease state, these are all wins for us with P vera.

Katherine Banwell:    

You touched on this briefly, but I’m wondering when a patient should consider changing treatments.

Dr. Pemmaraju:      

Yeah, changing treatments is more art than science, I would say. So, it does – that’s one of those that is kind of specific from patient to patient. In general, what we just talked about gives you that guidance. So, in polycythemia vera, since we brought that up earlier, uncontrolled blood counts despite maximum medication intervention, the phlebotomy requirement being untoward and impossible to keep up with, the spleen size growing out of control, the quality of life being impossible – these are some aspects to look into changing therapy and/or clinical trial.

But remember, it’s not a one-size-fits-all, right? So, some patients, the counts – some of these things may or may not actually play out. So, it has to be more of a gestalt, more of a total picture there.

What Can MPN Patients Expect When Starting a New Treatment?

What Can MPN Patients Expect When Starting a New Treatment? from Patient Empowerment Network on Vimeo.

What can myeloproliferative neoplasm (MPN) patients expect when starting a new treatment? Dr. Naveen Pemmaraju shares advice about potential issues that can occur and key points to discuss with your pharmacist to ensure optimal care.

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:

We have a question from a newly diagnosed PV patient. Sharon says, “I’m just about to begin Jakafi. What can I expect?”

Dr. Pemmaraju:   

Yeah, great question, right? So, with ruxolitinib or Jakafi, I think the biggest couple of points here is, for what’s known, this is the first-in-class JAK inhibitor that we have the most experience with.

So, now we have over a decade-plus of experience. I guess general things are general, right? This is not specific medical advice. That’s not the intention of this program. But, in general, I would stick with what’s on the package label insert, and there are a couple things we know.

One is this is a highly effective drug. This drug, which we have tested now in multiple, multiple, multiple different trials in myelofibrosis, polycythemia vera, now approved in a form of graft-versus-host disease, different doses. So, I would say check the dose for your particular disease and indication. Double-check it with your pharmacist. Make sure there are no drug-to-drug interactions.

Number two, I think what’s important is that some patients on this drug can experience immunosuppression. So, that means that you may be at risk for some infections, and there’s some nice literature about that.

So, check with your doctor about that, particularly reactivation of old infections, looking out for viral infections, such as herpes zoster or shingles. And then I think the other key here is to watch out for the modulation of your disease. So, a lot of folks have big spleens, Katherine. Those shrink down. Then patients get their appetite back, they’re able to eat, and so some people can have weight gain that then goes the other way. So, these are some of the things you want to watch out for.

But, in general, read the package insert. If you have the ability to, it’s worth reading the – if you can, read the paper, right? Go read the New England Journal paper or – if you can look at that. And then make sure you talk to your local pharmacist and ask the same question there. You might be surprised at some tidbits and pearls you can pick up.

MPN Treatment: What Is the Role of Biomarkers?

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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What Are the Considerations When Choosing Myelofibrosis Therapy?


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.

What Are the Goals of ET, PV, and MF Treatment?

What Are the Goals of ET, PV, and MF Treatment? from Patient Empowerment Network on Vimeo.

What goals are myeloproliferative neoplasm (MPN) care team members trying to achieve with ET, PV, and MF treatment? Dr. Naveen Pemmaraju reviews three factors that drive treatment decisions for quality, personalized MPN care.

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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COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?


Transcript

Katherine Banwell:

Let’s talk about treatment goals first for ET, PV, and MF. What are the goals of treatment from a clinical perspective?

Dr. Pemmaraju:     

Well, I think the goals are divided up into three factors. So, I think for the MPN patient, goal number one has to be what the patient themselves want to achieve.

Oftentimes, that’s different than what’s on the numbers with the labs and what the physician wants. So, I think a lot of our patients correctly are suffering from – or mentioning to us that they’re suffering from quality of life issues. So, fatigue is the most common manifestation of all the MPNs, followed by bone pain, night sweats, inability to concentrate, etcetera, etcetera.

So, I think quality of life is the goal of most people, and I think that’s an admirable goal. And some of the medicines can help that. Some can actually hurt that in the short term. So, let’s put that as bucket number one. What does the patient want to achieve? Usually, it’s the alleviation of fatigue, itching, bone pain, etcetera.

Number two, I think, is the sort of on-paper game, if you will, right? So, what do the labs show, what does the bone marrow biopsy show, what does the spleen show? I think all of that is good, too, in that bucket. And clearly, if someone has transfusion dependent anemia, two times a week needing blood transfusions, and whatever treatment you can do can alleviate that down to once a week, once a month never – okay, that’s a win for the patient.

And then I think, finally, our goals. You’re right. You asked me specifically what are my goals for our patients? Well, I want to see that your overall survival has improved if I can. So, your length of life, your quality of life has improved. Minimization of side effects from whatever therapy we’re doing. If we’re going on a clinical trial or combining therapies in a novel way, that you’re not experiencing some brand new or idiosyncratic toxicity or side effect.

And then, finally, I think the key is to monitor for, let’s say, other things. Are you developing a second cancer? A second blood cancer. Are you having another problem that’s outside of your MPN, such as iron deficiency anemia or thyroid disease? Something that’s extremely common, has nothing to do with the MPN, but is also happening. And then do you have a healthcare team?

I failed to mention in your earlier question the primary care doctor., right? Let’s mention that person as well. If our patients have the general practitioner who they had already been seeing before the MPN diagnosis, or at least established one after, then some of these important aspects, like cancer screening, cholesterol checks, some of these other important things can be done in parallel to the MPN therapy and then, of course, combined at different points.

So, these are kind of my benchmarks for goals of therapy. They will vary from patient to patient and, of course, from case to case. The patient with advanced intermediate to high-risk myelofibrosis going to transplant, well, that’s markedly different from the patient who’s young with ET with no blood clots and relatively controlled blood counts.

Katherine Banwell:    

So, you just mentioned a couple of factors that you take into consideration, but there are others as well, I think. What about the patient’s age and overall health, for instance?

Dr. Pemmaraju:   

Could not be more important. You’re right. I think age – and let’s use that as a surrogate for what we call ECOG performance data.

So, the overall kind of fitness of a patient, may be the most important factor. And then followed by these other conditions, so-called co-morbidities. I’d like to talk about that for a second because that’s a lot of the program here. Depending on a patient’s age, performance status, fitness, and other organs that are involved, that actually leads to a couple of important points.

One, it may limit or reduce the number of treatment options that a person has based on their ability to even tolerate it in the first place. Both oral chemos that are available, some of these clinical trials that need to use an IV drug.

Number two, it may predict how your overall survival is going to be. So, perhaps your MPN, as we used in the other example, you have an earlier stage MPN that really doesn’t require treatment. It requires active observation.

But then on the other hand, you have advanced heart disease or kidney disease. That may actually do you more harm in the end.

And then, finally, right, is this concept that you have the co-morbidities and then you have the MPN and then they kind of change and morph over time where one is the dominant issue, the other isn’t. And so, you do need that decision care team as you were mentioning earlier. So, let’s definitely say that out loud that that matters. And I think it also reminds us that nothing is in a vacuum. The MPN doesn’t exist in an isolated space, right? So, your MPN co-exists with your heart disease, your kidney disease, your lung disease, your past, your present habits, anything.

Dr. Pemmaraju:     

I think sometimes, as physicians, we may not ask, and as patients, we forget to mention, oh, X, Y, Z in my history, or “Oh, I’m taking this herbal supplement.” Sometimes these things are important to mention.

So, when in doubt, bring up everything to your care team so that you can make decisions together.

Katherine Banwell: 

It might help to make notes before you go in to talk to your doctor.

Dr. Pemmaraju:    

Absolutely. That doesn’t hurt, and it could help you at least organize your own thoughts even if you don’t use them in the visit.