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Myelofibrosis w/ JAK2 mutation

Blood Cancers & Disorders | Last Active: Jul 4 10:05am | Replies (42)
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@gael

Yes . I had this for 10 1/2 years and used same medication until it no longer worked. The diagnosis I now have is post essential throbosytosis myelofibrosis. I use a new effective medication that controls the red blood platelets , but not the white blood cells which are currently high .(Jakofy)
Hydroxyurea dosages will change to regulate what you need and will be good up to a point. Regular blood tests are informative as to the mg needed. Best wishes to you . It's a long journey.

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Replies to "Yes . I had this for 10 1/2 years and used same medication until it no..."
pearly | @pearly | Jun 12, 2017

Do you mind sharing what symptoms you had besides the lab work? I have "pins & needles" in Lt hand and Rt foot Dr. thinks due to back arthritis. Oncologist at Virginia Mason says this rare disease rarely seen; although he diagnosed the problem. Says no unpleasant side effects from Hydroxyurea1500mg daily although his nurse told me hair loss is common & side effects variable at this dose? Would you be comfortable sharing what you mean by "long journey"? I will be attending a cancer support meeting next week, hope to find someone with same problem.
thanks,

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