Assessing the Risk for Progression in MPNs

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Will my essential thrombocythemia (ET) or polycythemia vera (PV) progress to myelofibrosis (MF)? Patient Power host and MF patient, Andrew Schorr, asks Dr. Mark Heaney of Columbia University Medical Center questions regarding the connection between ET and PV and their potential for progression to MF.  Dr. Heaney explains why ongoing serial follow-ups remain important even though MPN progression is not necessarily a given.  

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Produced in association with Columbia University Medical Center

Transcript

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:

The other thing that people worry about—Vicki has ET—is if you have one, where she takes a baby aspirin, not such a big deal. Will she always progress to these other conditions? Or what’s the connection? You say they’re connected, but does one lead to another invariably? 

Dr. Heaney:         

Invariably, actually not. Matter of fact, the minority of patients with polycythemia vera and ET progress to myelofibrosis. So it’s an actually relatively small percentage. But it’s enough of a percentage that it requires ongoing serial follow-up. And knowing that that’s a potential complication of the disease is important so that if there’s a change in clinical condition, that you as a patient can look out for that. So my patients with these diseases, I may only see them once a year, so it’s a long time in between. 

Andrew Schorr:                  

And the other question is, if you’ve been diagnosed with myelofibrosis, like for me right off the bat, and I don’t know how you would talk if it’s sort of low grade or less—earlier, does it necessarily mean that it’s going to go up the scale? Or do we know now with modern medicines?

Dr. Heaney:         

More and more, we are learning more about the biology of diseases.

And as we’ve now incorporated things like the mutations that are found in these diseases along with other aspects of the patient’s natural history, we have a better sense of how likely a patient is to progress and have problems from the disease. There are some patients with myelofibrosis who can go decades without having problems related to the myelofibrosis. Some of that’s related to what the blood counts are, whether they require transfusion, and now sometimes whether they have a JAK mutation or calreticulin mutation. 

So as we know more about these diseases, we’re able to help patients have a better understanding of how their disease might unfold. Unfortunately, just to add on, the information that we have applies to averages and how the typical patient might do. 

Everyone's different, and there are some patients whose disease by the numbers looks like it might be aggressive, and their disease smolders along and doesn’t require treatment. So in the end, it really is a very individual thing, even though the information helps us to provide some guidance.

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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Page last updated on August 10, 2016