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atir (@atir)

Polycythemia Vera

Blood Cancers & Disorders | Last Active: Aug 6, 2020 | Replies (39)

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Hello to all, I am new to this and trying to get a better understanding of PV and the wait and watch scenario vs the let treat and move forward. In late 2017 I had a venous sinous thrombosis on the left side of my brain. After 5 days in ICU it was resolved. During my stay the Drs had decided that I had PV. Thats fine, lets treat it and move forward, Im fine with that, after all I have already kicked the crap out of Oliogostrocytoma a few times. My Hemat was at 62 My Hemo was at 18 RBC elevated WBC elevated etc. I had a few Phlebotomies while I was in the hospital, no big deal. I've done all of my many follow up visits with both primary and hematologist, extensive testing with bone marrow biopsy, special testing that only Mayo can do for genetic testing and everything comes up JAK2 Negative, but yet my number continue to climb every 10-14 days. Within the last 16 months I have had 28 Phlebotomies, which I think is a lot. I have done some research on my own and found were you can be PV Positive with a JAK2 Negative test result. I am lookin for a little guidance on next steps, any help is greatly appreciated. Jeff

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Replies to "Hello to all, I am new to this and trying to get a better understanding of..."

I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased — I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high — my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).