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Abstracts of Interest and New Treatment Options for MPNs

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Published on December 19, 2019

Key Takeaways

  • If interested in Dr. Fleischman’s familial study on MPNs, visit www.wearempn.org 
  • The Mediterranean diet might be helpful for MPN patients by reducing inflammation. 
  •  New data on a new type of interferon called ropeginterferon, combination therapies and bromodomain (BET) inhibitors.

More than 30,000 hematology professionals from around the world, including specialists in myeloproliferative neoplasm (MPN) care, attended the 2019 American Society of Hematology (ASH) Annual Meeting & Exposition to present and hear the latest research. What information from the conference stands out for MPN patients? On location in Orlando, Florida, Patient Power founder Andrew Schorr was joined by a panel of leading experts including Dr.  Brady Stein, Dr. Laura Michaelis and Dr. Angela Fleischman to discuss important highlights for patients and families living with an MPN. Watch now to find out the latest treatment news.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

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You're a FANTASTIC resource and I share info with groups online, open up conversations with my oncologist and GP and send links to my adult children to help them understand. You guys are earth Angels.

— Annie, from UK, online MPN meeting attendee

Transcript | Abstracts of Interest and New Treatment Options for MPNs

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power on location in Orlando, Florida. I’m Andrew Schorr. Why are we in Orlando? Because this is where each year there is a big medical convention. Not always in Orlando; it moves around but this year here more than 25,000 blood experts from around the world come, including blood cancer experts and that means part of the discussion is about MPNs. I’ve been living with myelofibrosis for about eight years. You’re affected by it or a loved one. Let’s get the news.

So, starting across the way here we have our first expert Dr. Angela Fleischman from UC Irvine. Angela, thanks for being with us.

Dr. Fleischman:                

Thank you for having me.  

Andrew Schorr:                

Thank you. In the center is Dr. Brady Stein from Northwestern. And, Brady, thank you for being with us. And then on the right is Laura Michaelis from the Medical College of Wisconsin, Milwaukee.

Dr. Michaelis:   

Thank you so much, Andrew. It’s a pleasure to be here.

Andrew Schorr:                

Thank you. So, Laura, I want to start with you. So, you are the editor of one of the main publications for the medical society, the American Society of Hematology, and you have a journalism background.

Dr. Michaelis:   

I do.

Andrew Schorr:                

So, we’re brother and sister journalists. So, from your point of view in MPNs, what are things that have impressed you?

Dr. Michaelis:   

Yeah. So, one of the things I think about before I come is how am I going to categorize the new data, the new information and the way I’ve been thinking about it is I’ve been looking through the posters or the oral abstracts is what are we learning about the ways to use the JAK inhibitors that we have; for example, ruxolitinib (Jakafi) or fedratinib (Inrebic). What are we learning about what we can add to the JAK inhibitors to use them in combination and what are we learning about new agents that maybe have nothing to do with JAK inhibitors, maybe a new way to attack myelofibrosis. 

We also, of course, have information about transplantation; information about lower risk diseases like essential thrombocythemia and polycythemia vera. So, a couple of things that stood out and I did a little bit of review before I came here and that was first off, I’m pretty impressed with some of the information we’re seeing in the long-term follow-up of the new variation in interferon out of Europe. So, this is a study called the PROUD-PV study and we’re now looking at three to four years of follow up. And it doesn’t use Pegasys, which many of have heard about, right, which is a pegylated interferon.

It uses even a new variety of interferon which is purportedly even less toxic to patients; fewer fatigue, a little bit less of the side effects, and we’re seeing not only very low amounts of blood clotting in patients who got that versus hydrea and had a diagnosis of PV, but also lower levels of the JAK2 allele burden, which I just think is interesting. So, that new data is going to be presented tomorrow. 

In terms of combinations with the drugs that we already have, so we know that approved for myelofibrosis is the medicine ruxolitinib, which we’ve had now for I guess nearly a decade and fedratinib which is the newest kid on the block and may be better for patients with a little bit lower platelet count, so that we don’t know. And is really approved not only for newly diagnosed patients but mostly for patients where they’ve already been on ruxolitinib and they’ve lost their response for some reason.

So, we have some follow up data on fedratinib on what happens in people with low platelet counts and we also have in the ruxolitinib space evidence of what we can add to ruxolitinib to help patients. In my practice, one of the most impactful things was a publication from this year, not here at ASH, but from this year about how you can safely add anti-leukemia therapy in the form of hypomethylating agents to ruxolitinib which is something that that safety data is…

Andrew Schorr:                

…like what kind of drug?

Dr. Michaelis:   

Like azacitidine (Vidaza) or decitabine (Dacogen) so, in patients where you maybe are a little concerned about transformation that’s it’s very nice to have safety data on how to combine those two agents.

Andrew Schorr:                

When you say transformation, transformation to acute myleoleukemia. 

Dr. Michaelis:   

Exactly. From  myelofibrosis when you see somebody with maybe a small increase in the number of blasts that they have in their bone marrow rather than from their spleen. This is something we’ve sort of done in practice a lot. But now we’re seeing more and more published data on that combination.

Another combination that I think is really attractive is how do we manage anemia in people on Jakafi or ruxolitinib, and there is a novel agent that’s being investigated in a Phase II study called a bromodomain inhibitor or BET inhibitor, and that’s also I think pretty exciting. I think dealing with anemia is one of really the unmet needs in myelofibrosis and is not addressed even in people with—even in some of our most modern drugs.

In terms of other agents, people are looking at sort of old-fashioned agents, something like Metformin which is a drug we use for diabetes. People are looking at a new medicine that was really effective in anemia in thalassemia and myelodysplastic syndrome, a medicine called luspatercept (Reblozyl) that’s being investigated in myelofibrosis again as a single agent. Nothing’s really hit a home run yet, so we’ve still got some work to do.

Andrew Schorr:                

Yeah, but you know Rubin Mesa always reminds me that it used to be that the MPN specialists were in a pretty small room here, and now your sessions are much bigger and there’s more to talk about, right?

Dr. Michaelis:   

Absolutely. I went to Brady’s education session. He hosted one of the largest education sessions here at the convention on how to manage myeloproliferative neoplasm and it was basically standing room only. 

Andrew Schorr:                

Okay, Brady. So, now it’s your turn. So, running that session and congratulations on standing room. Such a handsome guy though, you think? Okay, so what comes out for you? 

Dr. Stein:             

Yeah, so my session was focused on—my particular session was focused on thrombosis emblating and other special situations. So, these are really important in the management of ET and PV but also myelofibrosis. So, I think one of the points that I made is that we tend to underestimate thrombosis risk and myelofibrosis. We always think about this in ET and polycythemia vera, but we think less about this in myelofibrosis. So, that was one important point.

I think part of problem is that in ET and PV we have a way to assess risks, so we can look at risk factors and identify those patients maybe we should be more aggressive with at trying to reduce the risk of a blood clotting event. We haven’t had that for myelofibrosis. So, one of the abstracts that I was interested in, this is a poster presents a vascular risk score for patients with early myelofibrosis. So, I think that was particularly important.

Andrew Schorr:                

You need to be on a statin, something like that?

Dr. Stein:             

We don’t know about a statin. But I think we have to go back and think about who needs to be on an aspirin or not. That’s kind of an important point too. I mean it sounds very basic, but aspirin can cause harms. So, in polycythemia vera there’s justification to use it. Most of us see aspirin being given to almost all patients with ET but that’s not necessarily beneficial to all patients. Some patients have more bleeding than they have protection.

In myelofibrosis we really don’t know who should get aspirin or not. We have the least amount of data there. So, statins are certainly prime for investigation but we can go back even to the basics and look at aspirin and think about who maybe a suitable candidate. So, that was one area of interest for sure.

I’m also interested in drugs that can reduce thrombosis risk so like Dr. Michaelis I am interested in the presentation on ropeginterferon tomorrow morning, because over a four-year period they’re presenting a very low risk of thrombotic events, blood-clotting events. So, that’s definitely of interest.

I’m also interested in what I call special situations, because there are a few situations that affect younger patients and one of those is clotting in an unusual vascular bed. We call this the splanchnic  circulation. So, that means a clot in the hepatic vein or in the portal vein. So, veins that drain the liver or the intestines. And this type of clotting event has been long associated with MPNs but the very interesting part about it is that it affects younger women. It’s very distinct. So, this is very different than MPN at large. This is a clotting event that we often see in younger women. This is often their presenting feature of a myeloproliferative neoplasm.

The even more challenging thing about some of these patients is that they can have an entirely normal blood count, but a JAK2 mutation and a clot. So, it’s a very, very unique subgroup. So, we presented the approach to diagnosis and management of those patients as well. And there’s information being presented tomorrow about the molecular profile of these patients. How do we assess their prognosis? I think that’s an important abstract, because for some of the patients the biggest issue will be that clotting event and its consequences in the future. For other patients there’s the clotting event but there may be other mutations that can affect their prognosis as well.

Andrew Schorr:                

When I listen to all this the two of you, and we’ll hear from Angela in a minute, you know, so ET is not the same in everyone. PV is not the same in everyone. MF is not the same in everyone. Increasingly, we need this understanding of your specific situation whether it’s genomically, whether there’s some other work up you need to do. And I would imagine with the group you were just talking about people getting the right diagnosis. I mean they finally get to you thank God, but how long did it take them to get to that point?

Dr. Stein:             

Yeah, that’s an excellent point. Thrombotic events or clotting events are often the presenting feature but when we see these patients when we look back at the charts it’s oftentimes that we’ll see abnormal blood counts for a couple of years. So, I think we may make the diagnosis as hematologists but the illness could have been present for years preceding, So, part of it is to try to educate primary care providers about looking at blood counts and knowing which ones should prompt a referral early versus which one is probably okay to watch. So, it’s a good point about awareness.

Andrew Schorr:                

Would LDH be one of the ones that would trigger a workup?

Dr. Stein:               

Not necessarily. I think LDH worries hematologists a lot but I think you can back even further and just look at the platelet count or the red cell count. I mean some of those abnormalities are seemingly subtle, but when we see these patients they’ve often been present for years trending.

Andrew Schorr:                

Okay. Angela, I have other things I want to ask you about, but any news that you want to point up that hasn’t been mentioned here?

Dr. Fleischman:                

I think they both covered things pretty well. I’m also very interested in ropeginterferon. It would be really nice to offer early stage MPN patients something that could potentially alter the natural history of the disease and potentially lead to molecular omissions, meaning get rid of their JAK2 or other mutant cells.

Andrew Schorr:                

And what about interferon with a JAK2 inhibitor?

Dr. Fleischman:                

So, that’s a very interesting concept and thinking about it mechanistically, one could potentially think that they’re going to counteract something. Another very interesting feature of our treatments for myeloproliferative neoplasms that we have one drug or one set of drugs called JAK inhibitors which blunt JAK-STAT signaling and then on the other hand you’ve got a totally polar opposite of interferons which activate JAK-STAT signaling. So, one could think that if you potentially combine them you’re going to sort of cancel them out. However, there have been studies that suggest that that not necessarily is the case.

That ruxolitinib may not block the key signaling that interferon activates that’s helpful for getting rid of the JAK2 mutant cells. And we’re starting to learn more about how interferon actually can get rid of JAK2 mutant cells. It may be that interferon is specifically toxic to JAK2 mutant over normal blood stem cells. 

Andrew Schorr:                

Okay. So, to be continued.

Dr. Fleischman:                

To be continued. 

Andrew Schorr:                

Okay. Angela, I’ve got to ask you. You and your friend another MPN specialist Robyn Scherber have been doing a lot of work. You particularly in familial things. We also want to talk about diet. Let’s talk about diet first.

Dr. Fleischman:                

Okay.

Andrew Schorr:                

Is there something, and you’re from California and I am too, we have healthy diets out there, many people do. But is there an MPN diet?

Dr. Fleischman:                

So, at this point in time I don’t think we can say there’s a “MPN diet,” however, I think improving one’s diet is particularly important for any chronic illness and particularly for a chronic illness such as a myeloproliferative neoplasm that is associated with a lot of symptom burden and a lot of inflammation. So, our rationale for looking at diet is such. Number one, MPN patients have a lot of inflammation, they have a high symptom burden and a lot of times the early stage patients we really don’t do anything to alter the natural history of the disease. 

So, we wanted to think about low or no-risk interventions that could lower inflammatory cytokines or inflammatory proteins in people’s blood with the possibility that it could improve their symptoms and potentially blunt the progression of their disease. So, we thought well diet is, no there’s no harm in diet, and Mediterranean diet has been found to reduce inflammatory proteins in a large study of patients with cardiovascular heart disease. So, we thought why don’t we investigate this possibility in myeloproliferative neoplasms and with any clinical trials, in particular with diets much more difficult to get people to actually comply with a diet than actually just taking a pill.

So, for the first stage of our study we simply wanted to know whether if we gave people information and counseling on two healthy diets were they able to follow them. So, that was our primary objective with our first study which we’ve just completed and we can say that MPN patients are actually particularly good at following diets.

Andrew Schorr:                

Good job, folks. Good job. Okay.

Dr. Fleischman:                

And so, what we’d like to do next is expand the number of patients, and we’re planning on doing an online intervention rather than making people come to Southern California for the particular purpose of identifying whether a change in diet can improve symptom burden in MPN patients.

Andrew Schorr:                

Okay, what kind of things—Mediterranean diet. Does that mean use olive oil, vegetables. I mean, what are we talking about?

Dr. Fleischman:                

Correct. So, I think that in general Mediterranean diet is common sense healthy. From my perspective I think the main difference is the vast majority of the fats come from olive oil rather than meats and processed foods and sweets.

Andrew Schorr:                

Butter.

Dr. Fleischman:                

So, olive oil, very little red meat, minimal poultry, lots of fish, nuts, fresh fruits, fresh vegetables. So, if you’re eating that way, then you’re going to naturally be cutting out your fast food, cutting out your other processed foods. So, I think it’s a good way for people to in general just eat more healthy.

Andrew Schorr:                

Okay, one more thing I want to ask you about is there’s some people I talked to who either have someone else in the family who’s had either another blood-related condition or maybe an MPN. You’re studying that, right?

Dr. Fleischman:                

Yes. So, thank you for  asking. So, I’ve always been fascinated by why MPNs run in families. That’s just been something that has really enticed me to study MPNs. What’s really interesting to me is that although people with MPN were not born with the JAK2 mutation they acquired it during their lifetime. There are families where multiple people within the same family have all acquired the same mutation. So, I want to know what is different about these families that is so selective for growth of JAK2 mutant or calreticulin or MPL mutant cells in these families’ bodies that may not be present in other people’s bodies.

And we’ve previously focused on inflammation thinking that maybe families who have MPNs have a little bit of a different immune system. Maybe they have a little bit of an overactive immune system and interestingly, MPN patients as well as their family members also have an increased risk of autoimmune diseases. So, that goes along with high inflammation.

Andrew Schorr:                

Lupus, MS, rheumatoid arthritis, things like that. Can we send you saliva samples? What can we do?

Dr. Fleischman:                

So, if you’re interested you can go to our website, WeAreMPN.org and on the top there’s sort of a bar that says, “Why does MPN run in families?” You can click down, and then we have an online consent form. And then we’d like to have people also fill out a survey about their personal health and their family history, and then we send you a kit to collect blood. If you can’t get blood then we’re determining whether saliva is an acceptable alternative, because that contains mostly white blood cells. And then, we also want fingernails. So, we want blood versus fingernails, meaning that blood is what mutations you acquired over your lifetime in your blood and the fingernails is the DNA that you were born with.

And we would like MPN patients and their family members. So, it doesn’t matter where you live; ideally within the United States so it’s ease of mailing. But MPN patients and family members.

Andrew Schorr:                

What’s the website again? 

Dr. Fleischman:                

So, www.WeareMPN.org.

Andrew Schorr:                

Okay. Now, I want to ask you your reaction that people come to you and they’re newly diagnosed and they said, “Should I worry about my kids?” So, do you want to comment? 

Dr. Michaelis:   

This is an incredibly common thing that people ask me and first off I think that we are looking more and more about predispositions to disease and that is in Myeloproliferative Neoplasm, that’s in acute leukemias. We’ve known for a long time that there’s probably predispositions to chronic lymphocytic leukemia, for example.

Andrew Schorr:                

I have it. 

Dr. Michaelis:   

Most of the people who develop these don’t develop them because of a cluster of family things and we know that because, for example, the median age for myelofibrosis is quite late in life, and the number one predisposition to myelofibrosis is age and just the time that your stem cells have been on the planet and the time that they’ve had to degrade and have less fidelity every time that they reproduce, right?

That being said understanding predisposition syndrome is going to make a big difference in the handful of clusters of families where things are running in families, and we can learn a little bit more about whether or not there’s a syndrome that makes your particular genetics at that particular part of your DNA more fragile or more likely to mutate over the course of time. 

Andrew Schorr:                

So, we worry about our kids though. So, if my 30-year-old says, “Dad, am I at high risk for this?”

Dr. Michaelis:   

Yeah. So, first off, unfortunately, there’s nothing we can do about it at this time anyway. In my, like I’m one of those people who if I don’t have something to do about it I don’t want to know about it anyway, so when people ask me, “Should I go out and do the MPN thing or 23andMe?” I’m like, “Well, it’s not something I would do.” Nevertheless, so there’s no medical reason to intervene in somebody who’s asymptomatic and who’s counseled good and who’s otherwise healthy, and we all could be hit by a meteor that falls from the sky at any time, so you know, worry about what you can.

That being said, the work that Angela and others are doing about understanding how diseases cluster in certain groups or what predisposes families to do this will teach us a lot more and maybe understand when and if we should intervene, or are there things you should avoid if you have this predisposition syndrome. And that’s where we need to go in the future.

Andrew Schorr:                

Okay, Brady, I have a pretty basic question for you. So, in my case I am in that situation where my platelets have gone down and I probably will change medicine to something that maybe we think could make a difference now. But my spleen has gotten larger and certainly myelofibrosis patients know that. Do we have to worry about things like our spleen bursting? I know we shouldn’t play tackle football or rugby but activities of life. I know we want to shrink our spleen but even if we still can feel it under our ribs, do we have to worry in a car accident or tell us how to live our lives a little bit.

Dr. Stein:             

That’s a good question. The answer is generally no in terms of having a spontaneous rupture of the spleen. In 10 years and seeing many patients of myelofibrosis, I’ve never seen that. That would be more of what we call a case reportable or an anecdotal type of experience. So, of course, it causes worry, because every time you come to the doctor we’re feeling your spleen or asking about your spleen, the medications that are approved now or looked at in clinical trials are all about the spleen. So, the spleen is always the focus. But it’s really important, because everyone has a different experience with their own spleen.

And so, it’s really important as I try to counsel patients when we’re thinking about starting therapy anew. So, for the patient who’s had myelofibrosis, and perhaps it’s a new diagnosis or they’ve had it for a while, but it’s been in a low-risk stage where we’re just observing, one of the biggest decisions is starting therapy. Making that transition from observation to therapy is a big jump for patients for sure. And a lot of the decision-making with the approved drug is based on the spleen. So, those patients who have enormous spleens but it doesn’t bother them much. So, for those patients if the spleen doesn’t really bother them I don’t think we’re obligated to treat.

I have other patients whose spleens to me don’t feel so large, but it causes them a lot of symptoms. So, that’s a real important part of counseling. When I’m evaluating a patient and we’re making that decision, I ask them to keep a spleen diary. Just make a check on a calendar how many good days or bad spleen days are you having in a week or a month, because we have to know if there’s more of a negative impact in quality of life from the spleen. That should trigger the treatment decision. So, it’s good to be aware. I don’t think you need to be worried about a spontaneous rupture.

You don’t need to be thinking about it every moment of the day, but remember that the size itself doesn’t trigger the treatment. It’s how you feel. So, if it’s troubling you, if it’s causing ache, patients are getting full early, they’re having cough, they’re having bladder issues, issues of digestion, sometimes referred pain into the shoulder.

Andrew Schorr:                

How much they can eat. 

Dr. Stein:             

Yeah. So, those are the things that I try to counsel about. Those are the spleen-related symptoms and if we’re seeing more of those, that’s the time to treat.

Andrew Schorr:                

Okay.

Dr. Michaelis:   

Can I just say one other thing? And I love this idea of spleen diary, and it also ties into what Angela said before about diet. One thing I talk to my patients about is I give them copies of the SAF form, which is a form that you can measure how you’ve been feeling. I ask them to keep a diary. And then I say try a new diet where you eat only olive oils, or you maximize your fruits and vegetables for two weeks. Keep a diary, see how you feel. And that can actually give motivation. Same thing for just coming back and keep a diary for two months and then come back, or we’re going to go over it to see if this has made a difference. 

So, I really do encourage people to be proactive in how they keep track of symptoms so that it’s not just one bad day that’s going to color everything. Because you may have one bad day, but you might have five that are pretty good, and you don’t think about your disease. 

Andrew Schorr:                

Okay. I have a couple of symptom questions for you. One is about fatigue, and the other is about whether you want to call it itchiness. I’ve experienced it in a very trenchant way. I guess a prickliness—urticaria. Is that what you call it? Did I get that right?

Dr. Michaelis:   

Urticaria is more like hives but you have certain…

Andrew Schorr:                

…prickly.

Dr. Michaelis:   

Prickly?

Andrew Schorr:                

Right. And I know people have that. So, some people can’t take a hot shower. So, let’s start with that one. What do you tell people for that? 

Dr. Michaelis:   

So, I think it’s—certain symptoms are clearly a consequence of a person’s myeloproliferative neoplasms. For example, like the feeling of that itchiness after a hot shower or other things like the burning of the hands and feet. However, other things like fatigue are very difficult to tease out what the actual cause is because a lot of things can cause fatigue.

Now, in MPNs, in particular myelofibrosis the fatigue is quite devastating and it’s clear that that fatigue is driven by the myeloproliferative neoplasm. But I guess getting to your question the patient to identify what the cause of the symptoms are and if they’re directly related to a consequence of their myeloproliferative neoplasm, then that is a reason to address—have treatment address those symptoms, because in the myeloproliferative neoplasm although it’s a hematologic malignancy our goals of care in this disease are very different than the usual circumstances for other blood cancers.

Andrew Schorr:                

So, quality of life.

Dr. Michaelis:   

It’s quality of life. These are the things that we’re focusing on and these are the things that we do have some power to change with our treatments. So, I’m sorry if I’m not really answering specifically your question.

Andrew Schorr:                

Well, would these treatments that we’ve been discussing whether it’s the interferons or JAK inhibitors, could they make a difference with some of these symptoms?

Dr. Michaelis:   

Yes. In particular, JAK inhibitors one of their major benefits is to reduce symptom burden and potentially due, from my perspective probably due to their ability to reduce inflammatory cytokines. So, if a person is having severe symptom burden and maybe not necessarily so much problem with their spleen, but their symptom burden is quite bad then that might be a good reason to start a JAK inhibitor. Other issues…

Andrew Schorr:                

…and your diet. I’m going to go on your diet and I’m on a JAK inhibitor, so I’m doing what I can. Let me skip over to you, Brady. What do you tell people, people say, “Well, gee I’m thinking of retiring because I’ve been told I have a blood cancer.” Okay, what do you tell people about living their life, because there’s an emotion. First of all, we’re talking about rare conditions so the family’s trying to figure it out and they’re wondering what the future is like. How do you tell people to live their life?

Dr. Stein:             

That’s a great question and that actually is a specific question that a patient asked me recently. I have this and I could probably retire now, and I will if you tell me that’s something’s going to change in five or 10 years. If that’s the case, I want to enjoy my life now. So, it’s a really difficult question. So, the way I answered it I said, “Well, do you enjoy your work? Is this something that you enjoy and you want to keep doing, because that’s really how I want you to think about that. If you’re not enjoying your work and you have an opportunity to retire otherwise, go for it.”

But it’s hard for us to tell the future. It’s really hard to predict what can happen. Now, we’re getting better and better with prognostic scoring systems. I think each year at ASH—this year is actually a different year, because we’re not overwhelmed by prognostic scoring systems. Each year we tend to be almost overwhelmed by new markers that can access prognosis, but in the field what we’re concerned about is that we don’t have new therapies or just that prognosis. 

So, we’re getting better at predicting, but it’s really difficult to predict for that individual. So, we want them to try to live their best life. Our therapies are very largely based on quality of life and I see my patients going through a lot of different phases. At a new diagnosis, a lot of my patients are reading as much as they can and I think that’s very good. I like my patients to be proactive with their reading. I think that and especially if it’s a patient that may be coming from a distance.

So, if it’s a patient that lives far away and they see the hematologist in their home who may not have that many patients with an MPN, in that case I think you need to be especially well-read, because it’s really nearly impossible for your hematologist if they don’t have so many patients to really keep up. It’s hard for us. We all are in this field it’s hard to keep up. So, for my patients who are from afar who I see less frequently than I’d like, I want them to read and be proactive. So, I think that’s really helpful to stay informed about directions and they can take that knowledge back to their doctor. So, we’ve become part of a team. 

So, the first phase I do see a lot of reading, but then sometimes I see my patients overwhelmed by this reading. And then it starts to set them back a little bit, because they’ve become more anxious, and they’re thinking about this too much. So, it’s about finding a balance and over time as we have relationships and as years progress, and that’s the one thing we really enjoy about taking care of our patients, we get to have very long relationships. These diseases are often measured in decades. 

So, we have a long time with patients to form relationships and bonds, and I think for patients as each year passes and they have stability and they’re accustomed to their diseases, they find the balance between reading too much, not reading at all and denying it. So, they find kind of a happy medium.

Andrew Schorr:                

I want to make just a comment as being around this now for eight years or so. So, a lot of us correspond sometimes on social media. But remember the people who are doing really well may not even be taking the time to post, because they’re just doing, right? And sometimes people have questions, or they have a side effect or they are at a decision point, they’ll post. So, remember, you’re not always seeing the whole picture. And you can sometimes say, “Oh, my God, this person has a problem.” This person—that they all have problems. But everybody has problems. So, remember, you gotta have a filter about all this.

And also, about being overwhelmed. We at Patient Power obviously are here to help you. The MPN Research Foundation, the MPN Advocacy and Education Group. They’re a number of—The Leukemia & Lymphoma Society. We’re all trying to work together so that you have information and they’re people you can call as well. Now, making calls. Laura, I want to ask you about this. So, there you are in Milwaukee, but there may be somebody in the far reaches of Wisconsin or even other northern tier states and there’s not a hematologist who’s knowledgeable. So, besides people trekking to Milwaukee, can their doctor—can they be in touch basically? Do you weigh in?

Dr. Michaelis:   

Absolutely. So, one of the things I’ve learned and when I started working in Wisconsin is how incredibly critical it is for me to develop really friendly relationships with the other providers around the northern part of my state. Patients can drive 2- to 300 miles sometimes to get care, and that’s not feasible. You’re taking care of your grandkids, or it’s the middle of winter and the snow’s—so, we have a pretty tight community of providers. We do get together on a regular basis and talk about MPNs. 

But in addition, most of the other providers in my state have my cell phone number and if your doctor, if you’re in a situation in a rural situation in particular or you’re not close to an MPN practitioner, I would really encourage you to say to ask your provider are you in touch with any specialist in this, is this something where you could go on—where you might want to contact somebody, because I feel like I’m in an unusual situation. I can certainly give advice or recommendations not specific to a patient but in general about how I manage things. Usually to give specific patient instructions I want to have seen that patient, examined that patient, taken a real deep dive.

But I also see a lot of patients maybe once or twice, once a year let’s say. Then they go back to their home which is 300 miles away and regularly I correspond with their physician, I take a look at their blood counts, we talk about things. So, that to me is one of, again one of the great parts of being in this practice is building teams, and those teams shouldn’t be geographically located.

Andrew Schorr:                

Okay. So, Angela, what do you tell patients or their loved ones about trying to take back control? Brady was saying people are, please God, are going to live many, many years whether it goes from ET to PV to MF or not. You know that they’re living with this diagnosis, and they’re worried about it. What do you tell people about not just learning but sort of taking control, having hopefully a relationship with a specialist like any of you and getting some confidence in that?

Dr. Fleischman:                

So, thank you for bringing this up, and I’m also very struck by sort of the mental impact of a diagnosis of myeloproliferative neoplasm, in particular in a younger patient, because realistically the stress that’s involved with this diagnosis may be honestly, the greatest burden of the disease. That they may be feeling fine, they don’t know they have an MPN other than they were found to have abnormal blood counts, but just the unknown of the future. In particular, if they have young children, you know are they going to be alive for their graduation to high school. So, these are the sort of things that go on in somebody’s head and I think would go on in mine if I had this diagnosis as well.

But just trying to reiterate that you’re healthy now. It’s important that this was identified. It’s important that you’re taking the right steps to identify if there is a progression or identify what the best treatment for you at the present time is. And as Laura had mentioned, everybody’s future is uncertain. Anything can happen to anyone at any time, but I guess having a diagnosis of something that could potentially turn into something much more serious is a significant burden, but I think that getting information about the disease is empowering, and I think also that’s why doing something like taking control of one’s diet is also empowering for the patient.

Andrew Schorr:                

Something you can do.

Dr. Fleischman:               

Because they feel that they’re doing something and just not sitting back and being helpless.

Andrew Schorr:                

So, folks I am living with an MPN. My counts are not the greatest, but I have some energy. I’m going scuba diving after this, not this minute, but in a few days. And I got the chance to do it recently, I was like, “Oh, wow.” So, I’m now getting certified. I’m 69 years old, I’m going to go do it. And I’d urge you talk to your doctor. You want to take that vacation, go do it. Sometimes you have to make accommodations. If you’re tired or there are other things or there are certain medical tests or checkups you have to do, work it out and go live your life. I’d urge you to do that.

I want to end with our news reporter, the editor here, Laura Michaelis. So, Laura, you see the flow of information. All of you see the studies. Should we be hopeful and are you hopeful for us?

Dr. Michaelis:   

Absolutely. So, I graduated from medical school in 2000 and finished my fellowship in 2003. In that time since 2003, we’ve seen the discovery of JAK2. We’ve seen the approval of two new medicines in myelofibrosis. We’ve seen a huge change in the use, for example, of interferon and what that can mean. We’ve seen unbelievable increase in the amount of publications, the amount of knowledge, the amount of people practicing, and the engagement of patients. I mean we can all speak to how much we’ve learned from being at a patient seminar or talking to patients.

We’ve seen transplant get much safer. You know, I’m very hopeful. And we’re now learning so much at the molecular level that hasn’t even yet been translated into the clinic. So, yeah, I’m hopeful.

Andrew Schorr:                

Thumbs up. Agree. You agree?

Dr. Stein:             

Of course. Absolutely.

Andrew Schorr:                

Okay. And, Angela, you agree?

Dr. Fleischman:                

Yes.

Andrew Schorr:                

Okay. I want to make one other comment. I’m 69, so I would call these younger physicians, and I want to thank you for being in this field. Really. And I think the patient community wants to thank you to keep this momentum going. Please cure it if you can. Okay. But we take our cues from you. You’re our barometer and if you feel we’re going in the right direction and as you said, Brady, you’re going to see us for many years, okay. Then we really feel great about that.

Thank you, Angela Fleischman, Brady Stein, Laura Michaelis. Thanks for being with us out of this busy convention, and we will be with you again for other updates. Thanks for being with us.

Dr. Stein:             

Thank you very much. 

Dr. Fleischman:                

Thank you.

Dr. Michaelis:   

Thank you. 

Andrew Schorr:                

Okay. Andrew Schorr here in Orlando, Florida where they took time out of their crazy schedule here where fortunately, they have to talk to each other about in studies that are being released that can make a difference for us. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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