Newly Diagnosed with Polycythemia Vera

By CommunityMember4f5bc1

1 min read

Last month, I received an email from my doctor (I'm in an HMO) that flatly stated my blood work showed I had a JAK2 mutation, indicating I have PV and that I have been referred to hematology. I met with a doctor last week, and he prescribed baby aspirin and hydroxyurea and told me to have my blood drawn in one month, and they'll see if they need to do a phlebotomy.

He told me this was not a cancer, but all my reading indicates otherwise. I just wanted to check in here and get in touch with others who have this same disease. Support groups have always helped me in the past, and I am hoping to get one for this issue in my life. Look forward to communicating with others about this!

Susan

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Thie Member
Hello Susan, I'm sorry to hear that. My lab work just recently came back stating similar things. I have not seen my doctor yet for the follow up. I was wondering if your having itching problems? I agree with you everything that I've read also says a rare blood cancer, I do not understand why doctors say that. I have been told that I have Smoldering Myeloma but its not cancer. I have not started any treatment yet, so to have this new diagnosis is really making me feel like I don't know if I'm coming or going. I feel like the worst part of having cancer is the back and forth not knowing if you really have cancer or are doctors just playing a game. I like to approach things in life head on that is knowing the problem and coming up with a solution or finding a way to m deal with the problem and live my life. Thanks for your post it really helped to know I'm not a lone. 
1. Daniel Malito Moderator
 <inline-mention username="Thie" user-id="3652194"/> None of you here are alone, please always remember that! I know cancer is terrifying and awful and anxiety-inducing and many other things, especially when first diagnosed, but just know that many of us have been through it and we are here to do whatever we can to help. Both of you, <inline-mention username="CommunityMember4f5bc1" user-id="9801290"/> as well, just know that it can get better and you can still have a life. Just search this site for PV and you can read articles by our contributors who deal with that specific cancer also! In the meantime, keep on keepin' on, DPM
2. Yolanda Brunson-Sarrabo Moderator & Contributor
 <inline-mention username="Thie" user-id="3652194"/> You are definitely not alone. Many in the blood cancer community can relate to the better known as "watch and wait". This can be a daunting time depending on how you look at this, as you basically wait until your cancer becomes active. For me, I was fine not doing anything because it allowed me to face this later on than right now. I had a good run for 5 years and then my condition turned from smoldering myeloma to active multiple myeloma, and I am now in remission. Wishing you the very best - keep living and doing! Yolanda (Team Member)