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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 23 hours ago | Replies (399)
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@jerrlin

When I was diagnosed, with PCV and Jak 2 positive, the first thing they did was a bone marrow biopsy. My only symptom was itching after bath and shower. I have a phlebotomy every 3- 6 month and 2 baby aspirin a day as needed to keep numbers down. My oncologist suggested chemo drugs to help with symptoms but said it would not cure the disease. I chose to just have phlebotomy’s and 2 baby aspirin a day. So far, I’m doing fine, at times, I feel a bit fatigued but find a quick rest and then a walk, gets me back on track. Each person and body is different, so you need to listen to your own body and try different things. I’m not on any special diet but was told to stay away from liver. Good Luck, I’m 74 and plan on at least 10 more years of fun. Find a Dr you like and trust. I did get 2 different opinions from different medical facilities.

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Replies to "When I was diagnosed, with PCV and Jak 2 positive, the first thing they did was..."
inevanmac | @inevanmac | Jul 8, 2023

Super advice and happy for you your “regime” works for you.

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nypara66 | @nypara66 | Jul 8, 2023

Wow, surprised to read that they did a bone biopsy immediately. My doctor said they can get the diagnosis from my labs/symptoms and the JAK2 being positive. He asked if I wanted a bone marrow test and I said will my treatment be the same, he replied exactly the same. He said it wasn’t necessary. I feel like the facilities do make their $$ off the sick sadly and we as patients need to be vigilant. Many may want/need the biopsy for their own piece of mind and that’s totally understandable. I’m just 56 and needed much time to process this diagnosis being I’ve been healthy my entire life. I wanted to do just phlebotomies and baby aspirin but my platelets shot up every time they took me off the Hydroxyurea. Just taking it 3X a week and hoping we finally got the dosage correct. So happy for you that you can be controlled without the drugs, truly!

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