November 11, 2020
Question from a member: I was diagnosed two and a half years ago with a jak-2 mutation. My plates were 720 . I am taking Hydroxyurea and am staying around 380 now. I am wondering if others with same diagnosis have some of the same difficulties I am experiencing taking Hydroxyurea
November 19, 2020
I am new to this forum and have not searched the archives for possible answers for you. I do belong to a large online forum for people with polycythemia vera, ET, myelofibrosis, etc., most of whom have the Jak2 mutation. Many of us are or have been on hydroxyurea. You might be interested in joining that particular online group. I hope it is not against the rules here to mention this resource. -To post to the list, address your email to firstname.lastname@example.org
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-Frequently asked questions (FAQ) about PV, ET, MF, CML:
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November 27, 2020
I'm Jak2 positive. Diagnosis is Essential Thrombocythemia.
What kind of difficulties are you having?
December 17, 2020
I've had the JAK2 mutation with essential thrombocytosis for the past 8 years. Started treatment with hydroxyurea but it gave me bad mouth sores so my doctor switched me to Anagrlide, which I've tolerated very well. But my hemoglobin started dropping and after lots of tests he did another bone marrow biopsy and found that it had morphed into myelofibrosis. Says I may have 4-5 years left if I do nothing and that the only possible cure is a complete bone marrow transplant. It scares me to think about it. He also said there may be some kind of JAK2 pill. Does anyone know anything about that? Thanks.
June 5, 2021
June 5, 2021
Not dealing with hydroxarea but glad you are here and comfortable asking questions and sharing information ... Dennis(blood-cancer.com TEAM)