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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (467)Comment receiving replies
@christina3444 thank you so much for all that info it’s been a lot for me to take in I’ve been prescribed 500mg of hydroxyurea and have just started it so don’t know as yet how it will help also waiting to get bone marrow biopsy so I’ll keep in touch and let you know my progress also like you I may get a second opinion if I’m not happy as I was quite shocked to get the diagnosis and am still trying to process it , I’m 77 a similar age to you but don’t classify myself as old still want to do lots more things in my life and just want to be able to manage whatever life throws at me , I’m Irish and living in Ireland where are you based?
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@roughanne Hello. I’m in Arizona. I visited Ireland about 20 years ago. What a beautiful place!
Trust me, I’m still a force to be reckoned with at my age! But, if we divide the world into young and old, Im definitely going to stand on the old side. And, thank God for it because I wouldn’t want to be young again. I would want to be able to do the things I could do, physically.
Anyway, you got another response that mentions bone marrow test. Im agree with that poster. My hematologist is great and one reason I like her is that she, unlike the first one, doesn’t seem to be offended by my questions. At our first visit I asked her the prognosis and progression I could expect and she was honest and told me if the HU and phlebotomies didn’t bring hematocrit, etc. down then a bone marrow test. So far, the treatment has worked so no bone marrow necessary. And, I also take one baby aspirin daily.
I would question the need for the bone marrow being done before you know if the HU and phlebotomies will work. But, do what you feel is best for you.
Honestly, it took me about a year to get my head around it all and to stop thinking I was about to die. I had never really been ill in my life and I guess it never occurred to me I would get sick this late in life! I will also be honest and say that when I read some of the other posts on Connect, this diagnosis is far from the worst!
When I think too much about it and begin to wallow I give myself 10 minutes to cry and feel sorry for myself. Then I move on.
Maybe something I’ve said will be helpful to you. I hope so. Please keep posting so we know how you are and how we can help. Christina