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What Are the Risks of ET, PV and MF?

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Published on December 27, 2016

In this Patient Power segment, Andrew Schorr talks with MPN experts Dr. Prithviraj Bose and Dr. Olatoyosi Odenike about the risks associated with essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). Dr. Bose discusses what concerns him about each type of MPN and the issues that experts put a focus on to reduce risk while Dr. Odenike provides insight on treatment options.

This town meeting was sponsored by the Patient Empowerment Network, which received an educational grant from Incyte Corporation. It was produced by Patient Power in partnership with The University of Texas MD Anderson Cancer Center.

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Transcript | What Are the Risks of ET, PV and MF?

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:

Dr. Bose, what are you worried about with ET? 

Dr. Bose:               

With ET, the main goal is to reduce the risk of thrombosis, which is clotting. So that could take any form from a venous clot, such as in the legs or in the lungs, or an arterial clot which could be something serious like a stroke or a heart attack. So that is the major goal there. And also very high platelet counts, around 1.5 million, we were discussing a little bit earlier, you can have paradoxically a risk of bleeding. So that’s less common, but that is there. And then symptoms are less common in ET, but you do see them. 

Andrew Schorr:

Okay, PV, what’s your worry?

Dr. Bose:               

PV, again thrombosis; primarily thrombosis. So there we try to strictly control the hematocrit under 45 percent. There is some data that we may need to control their white count, as well, if it’s elevated—so mainly thrombosis and symptoms.

Andrew Schorr:

And myelofibrosis, what’s your concern?

Dr. Bose:               

Myelofibrosis is a little bit more difficult in the sense that symptoms are more pronounced.

The spleen enlargement is more of a problem, and then they’re often anemic. So that’s an added dimension to it. And, of course, since myelofibrosis compared to PV and ET is a little bit more serious in terms of overall prognosis, there are continuous attempts to improve survival there. 

Andrew Schorr:

Dr. Odenike, let’s go onto the treatments that we have there; there’s a whole bunch of them. So first of all, this list used to be a lot smaller, wasn’t it?

Dr. Odenike:       

Yes.

Andrew Schorr:

So you’re gratified by that. And we have some, when we get to research, that aren’t here. These are therapies that are commonly used, right, more or less?

Dr. Odenike:       

Absolutely.

Andrew Schorr:

So let’s just look at them. So for ET, people are on these different drugs: anagrelide (Agrylin), hydroxyurea (Hydrea) , some people take an interferon—I know Cara takes that; gives herself a shot—and even low-dose aspirin. What are these drugs doing? 

Dr. Odenike:       

So as Dr. Bose just educated us on in ET and PV, the primary initial goals of therapy are really to decrease the risk of thrombovascular events so clots and bleeding complications. What these drugs therefore do, by and large, is to normalize the blood counts, to get the blood counts into a more normal range. Because our thinking is that a lot of these risks of clots and other events that patients with ET and PV get is directly or indirectly related to those abnormalities of their blood counts.

Andrew Schorr:

So you have more than more drug. I’ve talked to people who are on hydroxyurea, and then they went to anagrelide, or you can switch around, right?

Dr. Odenike:       

Yes, that is correct, you can switch around. Depending on how those drugs are working in terms of achieving the stated goals, which is lowering of the counts, in terms of how well a human being is tolerating this treatment. So sometimes one will switch from one to another. because someone is having a particular side effect, which is perhaps just not manageable. It’s severe enough to warrant switching to something else.

Andrew Schorr:

It seems like the most benign medicine there is low-dose aspirin. But some people, that’s fine, right? They may just take aspirin.

Dr. Odenike:       

That’s very correct. So one of the initial approaches to managing these disorders, and this is done routinely by doctors who are familiar with MPNs, is this notion of one size does not fit all. So we do risk-stratify patients when we first meet patients with any of these diseases. And based on how high we judge the risk of, say, blood clotting to be, we decide on whether someone needs just checking their blood counts and perhaps aspirin, versus somebody else who may need to have drug therapies instituted to bring the counts into a more normal range.

Similarly in PV, it could just be phlebotomy to lower the red blood cell count as well as low-doseaspirin. 

For those who are judged to be at lower risk of blood clot formation, whereas those who are judged to be higher risk because either they’re older or have already developed a blood clot to start with, they will likely be offered medications to reduce their counts and lower the risk of clot formation further.

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.