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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)Comment receiving replies
Recently diagnosed in November with pv/et, jak2+.
Originally on hydrox 1000 daily with phlebotomy x 3 (as needed for hematocrit over 42). Not many side effects from drug, but platelets got too low and had some bleeding problems. Just get very tired but I’m 82. Now on 500 hydrox 3 times a week and levels are fairly stable…have not needed phlebotomy in a month. Was getting weekly cbc, now every other week. Trying to be patient while I get stabilized. I see a hematologist/oncologist at the Cleveland Clinic. I find this forum very helpful. Thanks for the warning about sun exposure …planning Florida trip in May.
Replies to "Recently diagnosed in November with pv/et, jak2+. Originally on hydrox 1000 daily with phlebotomy x 3..."
I’ll second the recommendation regarding exposure to the sun… I’ve been in Florida for a week and it’s long sleeves, sunscreen, and wearing hats when the sun is shining.. I bike and swim daily later in the day to avoid the sun when it is at its strongest… It’s not even been cloudy since I have been here(southwest Florida).. FYI diagnosed with PV spring of 2021 and on higher dose of HU( 8500 Mg per week)..
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Hi Holbrook,
Make sure you drink minimum of 64 ounces of water taking Hydroxyurea to flush toxins. Also, make sure you see dermatologist as it makes us more prone to skin cancers.
You can go on Chemocare.com, print Hydroxyurea pages. My hematologist gave me this data.
Best wishes, Eileen