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JAK2 Mutation - Effects and Questions

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

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@cynthiamdr

I have been living with high platelets (500-680 range) since 2016. In 2017 I had a bone marrow biopsy and lots of blood work and the doctor could not find anything wrong with me. I am healthy, have no symptoms, no other major health issues except hypothyroidism which I have taken medication for for over 30 years. My primary care physician sent me to a new hematologist/oncologist. He was perplexed as to why my platelets were high. So he ordered the Jak2 mutation qualitative test and it has come back positive. I see him again this Friday. Could someone direct me as to what I should be discussing with him. I literally am having no symptoms. At the last visit he suggested the low dose aspirin but I told him that I already suffer with tinnitus and have read that aspirin can cause tinnitus and/or make it worse, so I don't know if I want to take that. The hydroxyurea scares me as to all the side effects. Any guidance from anyone on this forum would be very much appreciated. Would the blood letting be a course of treatment for me? I am 68 year old female.

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Replies to "I have been living with high platelets (500-680 range) since 2016. In 2017 I had a..."

Hi Cynthia, welcome. How did your appointment go today?

My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A bone marrow biopsy and DNA testing confirmed this. We tried hydroxyurea but that did not shrink his spleen (as the spleen takes over the production of RBC since the bone marrow is unable to do this efficiently). Currently on Jakafi for the last 4 months, minimal side effects. We are facing a bone marrow transplant in the near future. If the spleen has not reduced in size, it will be removed and then we will proceed with the bone marrow transplant. A scary ride for sure, but it's the only cure.