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Understanding MPNs and How the Field Is Changing

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Published on September 7, 2016

What does MPN (myeloproliferative neoplasm) mean? How has the MPN field changed in recent years? Patient Power Host and MPN patient, Andrew Schorr, gathered a panel of experts and advocates virtually to raise awareness and understanding of MPNs. Dr. Srdan Verstovsek of MD Anderson Cancer Center defines MPNs, giving a short history of the disease. Lindsey Lyle, a Physician Assistant at the University of Colorado; Michelle Woehrle, Executive Director of the MPN Research Foundation; and David Wallace, Founder of PV Reporter and MPN Cancer Connection; all discuss the spectrum of MPNs, how to self-advocate, and the ongoing progress of MPN care and therapies

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Transcript | Understanding MPNs and How the Field Is Changing

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:

MPN, we use this acronym, and people are told that it’s affecting themselves or loved one, one of these diseases, polycythemia vera, essential thrombocythemia, myelofibrosis, and then different stages. And it’s really hard to get our head around it. Dr. Verstovsek, what exactly is an MPN?

Dr. Verstovsek: 

So MPN stands for myeloproliferative neoplasm. Basically, these are chronic leukemias of the bone marrow and blood. In the bone marrow, for some reason, cells start to grow without control. Myelo stands for the bone marrow cells, proliferative growing without control, neoplasm is not normal. They can be more benign like essential thrombocythemia or polycythemia vera where they should not be affecting your life expectancy too much. Or they may be more aggressive like myelofibrosis that can, in fact, affect your quality of life. So this is a cancer of the bone marrow or chronic leukemia. And we call them, as a group, myeloproliferative neoplasms.

Andrew Schorr:                  

So, Lindsey, people hear this term, and you, I’m sure, meet people when they’re newly diagnosed, it is, in fact, a cancer, but there’s confusion about that. Why the confusion? And what makes it a cancer?

 Lindsey Lyle:       

Well, I think that patients, when they hear myeloproliferative neoplasm, of course, they’re not too sure exactly what that means. And then, the word cancer comes up because they’re in an oncology office. So myelofibrosis, unfortunately, patients have a decreased life expectancy than the general population. And so by definition, with the cells being abnormal, can lead to a shortened life. And in polycythemia vera and essential thrombocythemia, patients can do very well with disease control without progression. However, there is a slight change in progression from myelofibrosis and to AML in small percentage of cases.

And so I think this is really important to make the patient aware, especially with the risk of transformation in ET and PV.

Andrew Schorr:                  

Okay, but just back to you for a second, Dr. Verstovsek, it used to just be called, it was called a disorder. We called it myeloproliferative disorders. Then, you and your colleagues around the world started calling it a neoplasm. And then, people started—at least some people started understanding that it’s a cancer. Why the change?

Dr. Verstovsek: 

The change is because we know much more about the biology of the disease. Now, we know that there is actually genetic abnormality or abnormalities in the bone marrow cells that lead to these diseases. And we can, in fact, define abnormalities in almost all of the cases of patients with myeloproliferative neoplasms. There are exceptions. There are still some patients with high platelets, for example, where we cannot find mutations or abnormalities in genetic code that would explain the disease. But we are more confident that this is, indeed, a neoplasm. That means, it’s not normal.

It’s genetically caused because of the underlying either from outside or from the body itself reasons. And it is something that we need to acknowledge as such. So we should not be scared or afraid of calling it what it is. And that’s why the colleagues in the field came together. And now, we, as academic and physicians community realize that this is, in fact, abnormality. It is like a cancer. It is like a chronic leukemia. But there is the whole spectrum from the benign to more aggressive like it is on the skin, for example, skin cancer. Melanoma can kill you in six months. Basil cell carcinoma, you just shave it off and throw it away, and it’s nothing to it. So it’s a spectrum of the condition.

Andrew Schorr:                  

Okay. Thank you for explaining that.

Michelle, so one of the things that we’ve heard with these really not common conditions is it’s important in us understanding and developing that someone see a specialist once a year. Dr. Verstovsek, and I know, at the MPN Research Foundation, you’re very devoted to that. You can help people identify a specialist. So tell us about that.

Michelle Woehrle:            

Yes, so we do agree. We often hear people getting a confusing diagnosis or a misdiagnosis, and it takes them a long time to find out what they actually have. But one of the things we also hear a lot of is the need for—people express a desire to have a second opinion or to have someone who—to see a doctor who has seen a good number of MPN patients. And we try to work with other members of the community like the American Society of Hematology who has a great search function. And we also work with MPN Forum. And we have a database ourselves. But we try to connect patients wherever they are with the doctors that might do the best to help them. 

Andrew Schorr:                  

Now, David, you’ve been living with it. And you changed doctors along the way. And you communicate with clients with PV and other MPNs. And also, it’s—you realize clearly now that it—it is treating it as a cancer. What do you want to say to the audience about, first of all, getting your head around that and getting the best care?

David Wallace:  

Andrew, I think it’s important that patients receive the proper care. And from what I’ve seen is, I’m in contact with a lot of patients that may not be in a major city. And they’re seeing a doctor that tells them that they have a blood disorder. And so I don’t think that we’re giving the proper care that they need, yet they think they’re seeing an MPN specialist. And to me, I believe there needs to be some sort of certification program or something that comes forward where doctors can be certified as an MPN specialist allowing patients to know that they’re receiving the proper care from a certified doctor.

Andrew Schorr:                  

Okay. And what about it being classified as a cancer? You—you were a big believer that people just face up to that and then connect with the right treatment.

David Wallace:  

Right. In as far as the cancer aspect goes, there are probably benefits that are available to cancer patients, lots of things from co-pay assistance for their medications airfare to see an MPN specialist, exercise programs, nutrition programs, yoga. So just by having the classification of being a cancer patient, all of these benefits are now available to patients. Whereas before, if it’s just classified as a disorder, you’re kind of lost in the shuffle.

Andrew Schorr:                  

Okay. Good point. So, Dr. Verstovsek, this is an area that’s changing. I mean, you’ve been one of the leaders. I’m sure Lindsey is involved as well, University of Colorado. There’s research that’s been going on over a number of years now that’s changing the understanding. You mentioned earlier about understanding the biology. So is this really an encouraging time if you’re diagnosed with one of these conditions as far as the progress of research?

Dr. Verstovsek: 

Now the diagnostic process has also changed. We have so many changes in last 10 years in myeloproliferative neoplasms. It’s just amazing evolution. From this being something that was considered, like we just said, a disorder and nothing to worry about, to realization that there is biological continuum here from the more benign to more aggressive, to put a proper name to it, to make a proper diagnostic process in place. And we just had adjustments to it a few months ago published in leading medical journal to understand how to assess the benefits of the therapy, to develop new therapies, to just bring the disease to the public. 

All of this happened in last 10 years. It’s just amazing. And in the—our care of the patients, our approach has changed a lot. And to answer a question that I’m many times asked whether there is a need for MPN specialists to be involved with any single case, there is a yes and no answer to that. It depends on the case. Certainly, there are patients that are a clearcut diagnosed with ET, PV or myelofibrosis without any doubt. And the care can be provided and diagnostic process provided very nicely in a community setting. If there are any issues, I always encourage patients to seek a second opinion.

Even if they see me, we are not all perfect. And if there is another question, another doctor that can answer questions, I always encourage it. It should be a team effort. And the patient certainly should be a part of the team.

Andrew Schorr:                  

So, Lindsey, along those lines now, and you’ve been seeing the changes even in your shorter time in the field, you don’t have the gray hair that Dr. Verstovsek has. So are you encouraged with progress? And in that it’s an evolving field, what advice would you give patients and family members so that they get the right care?

Lindsey Lyle:       

I am really encouraged just in my, you know, relatively short time in the field seeing the progress that we’ve made. And especially as Dr. Verstovsek said with diagnostic criteria and such being redefined as of late, I think that this information is getting out into the community in a little bit of a better way, even in the past 10 years. And I think that this is encouraging for patients. 

I think that, to ensure that the patients are getting the best care, or to make them feel comfortable with the care they are getting, I think that the resources such as the MPNforum, and the PV Reporter are really valuable so that patients can come with really good and educated questions to their provider, because there is a lot of information that has been circulating now that we’re pretty confident and for patients to learn about their disease. And I think that having discussions with their providers can help them gain confidence or also help them to say well, maybe I’m going to seek a second opinion at a more, you know, tertiary or academic institution.

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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