caret icon Back to all discussions

Anyone else living with a jak-2 mutation?

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

  1. 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 mpn-net@listserv.acor.org
    -To reach a list owner, write to mpn-net-request@listserv.acor.org
    -To unsubscribe or change subscription or search the archives:
    http://listserv.acor.org/archives/mpn-net.html
    -Frequently asked questions (FAQ) about PV, ET, MF, CML:
    http://www.mpdinfo.org
    -General Rules for the ACOR Lists at http://www.acor.org/faqs/lists/listrules.html

    1. I'm Jak2 positive. Diagnosis is Essential Thrombocythemia.
      Taking Hydroxyrea.

      What kind of difficulties are you having?

      1. 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.

        1. I have been on hydroxarea for years and have no problems. My platelet count by was over a million. My local cancer center keeps track of me. What problems are you having?

          1. Not dealing with hydroxarea but glad you are here and comfortable asking questions and sharing information ... Dennis(blood-cancer.com TEAM)

        or create an account to reply.