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If My MPN Is Stable, Should I See a Specialist?

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Published on April 13, 2016

Does a stable MPN patient need to consult with an MPN specialist?  Dr. Naval Daver answers this Ask the Expert question from Patient Power community member, Julie.  Dr. Daver clearly delineates between benign and slow-growing disease and those patients who are experiencing new symptoms or progressing to myelofibrosis (MF).

The Ask the Expert series is sponsored through an educational grant to the Patient Empowerment Network from Incyte Corporation.

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Transcript | If My MPN Is Stable, Should I See a Specialist?

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:    

So Julie writes in from King George, Virginia, I’ve had ET for 29 years and have had very stable blood counts while being treated with hydroxyurea (Hydrea) for the last 20 years.  I have no significant symptoms or problems with my meds, and I’ve only seen one hematologist over the entire time.  Quite a partnership there.  Would there be any benefit to me seeing an MPN specialist for a consultation at this point? 

Dr. Daver:             

Right.  So I would say at this point, really, no.  I think you’re—if you’ve gone 29 years and your disease has shown its—in the end, the disease has usually exposed itself and your disease has shown itself to be a benign, slow-growing process.  Hydrea alone has worked well.  At this time, I think you’re fine.  Your hematologist knows you well.  You have a good partnership, and I think you should continue with that.  Now, at any time down the line if something changes, because we’ve had some patients who’ve done well for 20, 30 years, but later on things progress.  It’s rare, but it can happen. 

If you start developing symptoms of myelofibrosis or myelofibrosis is confirmed or if you have any progression to leukemia, which again is very rare, I think that would be a time to at least go for a consultation. Because now there are clinical trials specifically developed for patients who have PV AT progressing to myelofibrosis, either with new JAK inhibitors or fibrosis reversal drugs or immune-modulating agents.  But for now, I think you’re set.

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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