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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)

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@darryl12000

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.

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Replies to "Hey thanks so much for your reply , I wasn't sure if anyone reads these. My..."

Same for me since 2019. Baby aspirin and phlebotomy.
Just went to oncologist last week. Numbers are ok, platelets high.
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What made you get that diagnosis. Was that blood test routine or did your doctor schedule a particular test based on what concern.

Hay, you sound like me 3 years ago when I was diagnosed with PV. I eat healthy, I'm slender, do regular exercise and take whole lot of supplements and vitamins but after two and a half years, with a biweekly phlebotomy, baby aspirin and POSITIVE THINKING, my red blood count was 2057, safe range is 120-400. I was heavily fatigued, had frequent stomach upsets and painful circulation problems, so I broke down and started taking hydroxyurea every night. I have regained my energy and now after 8 months my blood count is a bit over 900. As soon as it hits 500 I plan to take the hydro pill only 4 nights a week. I hate it, call it the poison pill, (PP) but it has helped with no side effects that I can tell. I suggest you relent and not let your platelets get out of control. Robin in NY State but I grew up in Southern California. So, Howdy!