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dlefuen's Recent CancerCompass Activity

  • dlefuen has replied to a post on the message board

    Hi Linda,  Yes I have the JAK2 mutation, had that test done early on. I have had three hematologists, and each has said that I am one of 2 or 3 patients they have seen who were diagnosed that young. My first dr said that I was his youngest PV patient ever. Thanks for the reply. Zach

    September 29, 2016 view post
    • dlefuen has replied to a post on the message board

      Hi all, I am 30, male, living in California. I was diagnosed with PV at age 16, and I have been managing it with phlebotomy every 2 months since then, plus a few extras when necessary. So something like 90 phlebotomies. Mostly I feel fine, but towards the end of every two months before a treatment I have pain in my spleen and general fatigue and headaches. My main concern is that I was diagnosed so young. There is n...

      September 29, 2016 view post
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      About dlefuen

      Patient
      Other Cancer

      Polycythemia Vera, diagnosed at 16, now 30. 14 years of phlebotomy.

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