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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 8 hours ago | Replies (400)

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@nypara66

Hello, I started off with the exact same treatment. I’m curious as to how your platelets are doing? My doctor wants them below 600. After my four phlebotomies and put on baby aspirin AND Hydroxyurea, mine went down from 777(when diagnosed) to 265. I saw them go down about 100 each phlebotomy although those are more for lowering hematocrit. Was taken off meds and then within six weeks platelets slowly creeped back up to 600on the seventh week so back on hydroxyurea. I then had the next phlebotomy. Can’t seem to wonder if the phlebotomies alone more frequently will do the trick? I was told it’s early and it takes a while to get some sort of normalcy. From what you wrote, you are doing great!

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Replies to "Hello, I started off with the exact same treatment. I’m curious as to how your platelets..."

Hey thanks so much for your reply , I wasn't sure if anyone reads these. My hemo guy Dr. Long is super mellow; they have me do a consult with him and then CBC right afterward. I know my results that night online. He tends to only pay attention to my hemoglobin number. If it's 15 or higher im automatically scheduled for a phlebotomy the next afternoon. i bring in my laptop and watch a concert on YouTube , helps to distract me. I have a great relationship with all of the staff and even put together a custom thank you note for them. It really helps to have a good relationship with the staff. im also on baby aspirin plus Dr. Long has me drinking regular tea (herbal tea doesnt work) with my meals ; the tannins on black and green tea are supposed to help negate absorbing iron from the meal. Regular exercise is important too. I walk at a few local parks plus occasionally put in a few miles on a stationary bike at a gym. I tend to play tennis about once a week but right now that's on hold due to a wrist tendinitis that comes up once every few years. I live in Northern California and I live literally five minutes from the cancer center . im not doing hydrox or any other pills, only the baby aspirin and phlebotomy . Exercise, mediation, and positive thinking are all very important. I eat as healthy as I can. I naturally have a slimmer build and the good diet and exercise definitely help with that.