← Return to JAK2 Mutation - Effects and Questions

Discussion

JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

Comment receiving replies
@sap21981

So I have a quick question for you, knowing your background. I was diagnosed with polycythemia vera in June. I had increased red blood cells for almost a year before be diagnosed. my red blood cells when diagnosed was 23/68. I went through 7 weeks of weekly blood letting to get levels back to normal, and just went two months without having to have phlebotomy. Need to have 1 yesterday because my hematocrit was 48. The hematologist I have, was a intern doctor and didn't really take the time to explain best course of action. He really just asked what I wanted to do, said I could be put on medication or just continue blood letting if I tolerated it ok. My question is, what is the best route of action for longevity. I hate taking medication, but if it turns off the mutation so I don't cause more damage to my bone marrow and cause scarring, is that a better route then just removing blood? He basically just told me to take 325 mg aspirin and continue cbc every month. I had to ask him if I should be taking an aspirin after joining this forum. Surprised he said 325 and not the 81 mg (baby aspirin). Any suggestions/info is appreciated.

Jump to this post


Replies to "So I have a quick question for you, knowing your background. I was diagnosed with polycythemia..."

I have the same situation and my oncologist put me on hydroxyurea 500 mg a day. Within 2 weeks, my platelets dropped from 337 to 57. He has taken me off hydroxyurea and new blood tests in 2 weeks. I asked him your question and he told me that I am at high risk of blood clots because I have the Jak 2 and the drug helps protect me from that. Does anyone have any other information?