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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (400)Comment receiving replies
My husband has been diagnosed with PV for 24 years. His has been treated with frequent phlebotomies and medication successfully. His oncologist keeps a close watch on his labs and reviews symptoms every 3 months. There are advances in treatment that can prolong life expectancy so I have learned to only review stats written within the last few years.
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Recent update: I was diagnosed 3 years ago/ Jak2 mutation. I had already had a small TIA and was diagnosed with CVST. I’ve been fortunate as these last 8 months I’ve had no need for any phlebotomies and I chose not to go on Hydroxyurea, Very happy I didn’t. I was just at my hematologist and sometimes wonder if perhaps I’ve been misdiagnosed or my PV is very mild. I’m on blood thinners and will probably be on them for life, but that’s fine with me. I have blood work done every three months to gauge my hematocrit level, so far it’s good, will see where it is come Feb.
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This makes me feel some relief! I’m 57 and was diagnosed this past January. Took about 8 months to get the Hydroxyurea dosage right but for now my numbers are good. It’s key to keep up with the labs and check your numbers. So happy for you that he still going all these years later!