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Monitoring Progression: Mitigating Risk in MPN Patients

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Published on September 24, 2018

Patient Power founder Andrew Schorr is joined by MPN expert Dr. Mark Heaney, from Columbia University Medical Center, to explore risk factors that contribute to progression in myeloproliferative neoplasms (MPN), identify markers that indicate progression, and explain how MPNs may develop into another condition. Are there medicines available to slow progression? Can diet and exercise help with longevity? Dr. Heaney also discusses treatment options and the role that lifestyle choices play in reducing risks of the disease. Watch now to find out more. 

Sponsored by Incyte Corporation.

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Transcript | Monitoring Progression: Mitigating Risk in MPN Patients

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.

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:

What about their monitoring for progression, Mark? What about for people with ET? 

Dr. Heaney:                  

It’s the same kind of thing that—the biggest risk for ET patients is thrombosis and so making sure that the platelet count stays under a million, taking drugs like aspirin, we think can help. And also maintaining active lifestyle, reducing smoking, blood pressure, cholesterol, all those we think play a role in—in reducing some of the risks of the disease. I think, as individuals and as physicians we like to put things in boxes and, unfortunately, these diseases are part of the family and they don’t always stay in the box.  

And I’ve had a number of patients who started out with normal hemoglobin, even anemic and high platelet counts, And then, over time, developed polycythemia, so the diseases don’t always stay the same and sometimes we use terms like masked polycythemia to describe those patients but I—but I think just as patients with both ET and polycythemia can progress to myelofibrosis, these are diseases that are really part of a disease continuum. 

And I know Ann mentioned that you thought you were on the verge of myelofibrosis and were pulled back by—by the interferon and I—I think that that’s not necessarily a wrong way of looking at it, that this is really part of this—this continuum and you can move both ways on that scale. 

Andrew Schorr:            

All right, let’s talk for friends, like me, with myelofibrosis. So I get monthly blood tests. We’re looking at the LEA—LDH. I’m on ruxolitinib (Jakafi). They monitored my platelet count pretty well. I’ve had another condition, chronic lymphocytic leukemia, that playing a role, so it’s even more complicated with me. So, what about, with myelofibrosis, I know there’s some people live in fear and with, some of the older slides that have been put up before we had some of the treatments that we have now, what’s the longevity of that, and I’m happy to say I’ve been on the same medicine for six years. It continues to work. So what about progression there, Dr. Heaney? 

Dr. Heaney:                  

There – there certainly is a risk of  progression and I—and I think that sometimes we get a little bit focused on the idea of progression to another condition without also acknowledging that the disease, themselves, can cause problems and there are patients with myelofibrosis who aren’t able to produce enough white blood cells or platelets or hemoglobin and can have complications, even life-threatening complications, from those low blood counts and the risk of infection. 

So it’s not all about progression, but we do think that medicines like ruxolitinib have influenced that natural history of the disease for many patients and have—I think there’s a considerable amount of data now to say that it really slows the rate of progression and improves overall survival.

Andrew Schorr:            

And I know, of course, and you mentioned it for yourself, Ann, about the size of your spleen. Mine never got that big but I will say that, in the case of—for me, ruxolitinib, the spring, it is—the spleen is shrunk and I actually had a chronic lymphocytic leukemia doctor visit this morning and he just could barely find my spleen, so which—which disease was doing it, but I know that’s something you monitor in myelofibrosis, as well, right Dr. Heaney? Is the spleen a problem?

Dr. Heaney:                  

The large spleen can cause problems for a lot of patients, if it gets to be too big. It doesn’t always get to be so big, but it’s hard to bend. But when it’s smaller than that, it can press up against the stomach—the spleen sits right in front of the stomach—and can prevent people from eating full meals because, as soon as something goes into the stomach, the spleen is pressing up against it and it makes them feel like they’re full after they’ve had just a little bit to eat and that inability to eat a full meal can really cause a lot of weight loss and prevent people from getting adequate nutrition.

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.