Polycythemia vera

4 Posts | Page(s): 1 

Polycythemia vera

by morningstar24 on Thu Aug 02, 2012 08:35 PM

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I am a 45 year old woman in Canada who has been recently diagnosed with polycythemia vera.  I have a high hemaglobin and platelet count.  I have had 6 phlebotomies and my doctor is considering putting me on hydroxyurea.  Can anybody give me any information about their experience on this med and I would also love to meet others who are unfortunately dealing with the same problem as myself.  My e-mail address

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I wish you all the best in your journeys and hope that you enjoy life as best you can each day because life is short.

RE: Polycythemia vera

by meaboutthis on Mon Oct 29, 2012 05:37 AM

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Hi morningstar 24,

Check out the conversations under "Bone Cancer" and then scroll to Polycythemia vera.  I think it could be useful for you. Also postings there generally get a quick response.  Good luck to you.

RE: Polycythemia vera

by karen59 on Tue Oct 30, 2012 04:38 PM

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There is a wonderful group on Facebook for sufferers of PV. Look under Polycythemia Vera and ask to join. They are a wonderful group filled with a wealth of information and support.

RE: Polycythemia vera

by MPDFoundation on Tue Oct 30, 2012 04:42 PM

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Hi there,

We are a non-profit that specializes in research into PV (and related diseases essential thrombocythemia and myelofibrosis). We have a collection of patient stories on our site at http://www.mpnresearchfoundation.org/Patient-Stories

Hope this helps!

Michelle

MPN Research Foundation

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