Polycythemia Vera (PV)

By ruth

Last Updated:

1 min read

I just found out last month I have PV

Now I'm waiting for results from my bone marrow.

Not sure how I feel...Confused, angry, scared?

I have been oral chemotherapy for a week now.

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Yolanda Brunson-Sarrabo Member

<inline-mention user-id="3651766" username="ruth"/> So sorry to hear of your recent development. This can be a very scary time. It's okay to be all of those... scared, angry and confused. Wishing you the best!
1. Deb Wesloh Member
 
 Ruth, are you seeing an MPN (myeloproliferative neoplasm) Specialist?
2. ruth Member
 
 Deb I'm not didn't even know there were specialist for PV
Deb Wesloh Member

I also have PV. I would enjoy hearing more about you, your story and the results of your bone marrow biopsy. I know it's scary. When I found out I had it and it was considered a cancer, I was terrified. However, I've been living with PV for three years now (although likely have had it since 2013) and doing quite well. Best wishes to you.
1. AM Chai Member
 
 <inline-mention username="Deb Wesloh" user-id="3642132"/> Hi Deb, I just read your post I am new to this site. I have had PV for about 1 year now, I am on this up and down business with my platelets and not feeling well at all. I am on Hydrea and baby aspirin and xalerlto, I did fine for 3 months at one a day Hydrea and now for whatever reason my platelets went very high. As soon as I take more Hydrea they bottom out, which gives me severe headaches. Just wondering what your treatment plan is. Thanks, Kathy
2. Amanda Brunson Member
 
 ((((BIG HUGS)))) I'm not able to answer this question, but I know severe headaches are not fun. I hope there is something that will help keep you on the up and up so your not feeling bad <3 Amanda (Blood-cancer team member)
Susan Gonsalves Member

Ruth - Sorry we are meeting under these circumstances. I have a very close friend with PV. She's doing okay after about a year. A diagnosis like this is a scary thing. Although I don't have PV, I do have CML so I can relate to how it feels to receive such news. How are you doing now? Take Care, Susan
1. ruth Member
 
 I have MDS and ET now but I am doing good just had new blood work last week and my numbers are good still do oral chemotherapy every night put I can't complaine .I hope you are well and I will keep you in my prayers. Merry Christmas and ty you for asking
Dennis Golden Member

 If you asked me a year ago about blood-cancer I would have scratched my head and said "Don't know much about that." Now being on this site (after my own diagnosis and chemo treatment) it is eye-opening to learn how many forms and variations of blood cancer exist and equally ...the many treatment protocols that extend and save lives. Being newly diagnosed with any form of blood-cancer is scary. Knowing and meeting others here is a wonderful way to help quiet your mind. The MD's and Nurses do a great job with the many treatments. That said just knowing you are not alone with Blood-Cancer and that others have gone through some form of it is so helpful. I have discovered that friendships here often start when you say just 7 words to another person - "YOU TOO - I THOUGHT I WAS ALONE" Thanks to all who offer support