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@jerrlin

I was diagnosed two years ago with PVCV but doctored for two years before that with the itching. All of a sudden the blood work and a bone biopsy confirmed PCV with Jack 2. I do notice shortness of breath at times. I was on Hydroxyurea for 6 months Until my platelets dropped. Right now I take one baby aspirin a day. I do have ear and headaches slight but constant and my oncologist. Hemotologist says it is from the PCV. I also find that keeping busy and exercise does make me feel a lot better. I have chosen to live with this disease, and not let this disease determine how I live. None of us ever know how long we have anyway, I research all the time and hopeful that maybe someday they have a cure. Hope you find some answers for you, make sure you ask tons of questions and keep yourself informed. Remember some people live 20 years or more with this disease .

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I myself noticed that my red red and white cells were increasing over time..When I brought it to the attention of my family doctor several times I was told several times it's dehydration. this continued until one day my lab work went over normal (I'm from the medical profession ) knew it wasn't dehydration and made an appointment with a hematologist. He knew immediately it was PV without the Jak2 although he did do the blood test and it was positive. I was told it's a rare orphan blood cancer and few doctors have had any experience with it. I was also told don't ask certain questions. I decided this hematologist isn't a good fit so then I went to MDAnderson where in the past I went for breast cancer. The hemotologist asked to do the jak2 and lab work again ,of course I said yes followed by a bone marrow..I'm on hydrox my doctor has made me a partner in my care which had made a huge difference for me..I have fatigue like many of you speak about and someone on this site said" it's our new normal.'"Which is so true and helped me accept my diagnosis..I only wonder if more people would be diagnosed before a clot hits the heart, brain or lung with the autopsy missing the root cause if more doctors were aware of these rare blood cancers. It's no joke and does affect our quality of life.. Delaying or missing the diagnosis is a huge misstep..