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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Dec 16, 2024 | Replies (400)Comment receiving replies
Hi,
Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted on bone marrow biopsy. Had my first phlebotomy done Friday as well. Hemoglobin is 18.8, Hematocrit 58.9. Have some of the symptoms, fatigue, bruising, shortness of breath, etc. My first EPO was normal, but late Friday got a repeat back showing high 61. Now I'm not to sure what's going on! Hopefully will speak with the Hematologist on Monday. Haven't gotten the repeat JAK2 back yet either. Just wanted to check in!
Replies to "Hi, Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted..."
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@gjb1 - My EPO is high as well. In my case the high EPO makes sense, given my hematocrit is anemic. I'm still confused by my PV diagnosis, given now the only criteria I meet is that I have the JAK2 mutation. Feels a bit to me like an "eeny-meeny-miney-mo" diagnosis. It could be possible that I'm in early stage PV, but, currently there is no bone marrow biopsy to confirm that, and two of the bloodwork parameters (hematocrit/hemoglobin and EPO levels) are contradictory to the diagnostic criteria.