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Blood Cancer - Polycthemia Vera

MsLivingLife4Now
MsLivingLife4Now CSN Member Posts: 2
in Rare and Other Cancers #1

Hello,

I'm a 51 y/o female just diagnosed with polycthemia vera. Was told by the doctor this is most commonly found in 60+ y/o men. But doing research I found out ANYONE can develop this. Does anyone else have this rare blood cancer who can tell me how they manage & live with this rare cancer? Any information provided would be most grateful. 

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  • JenAll
    JenAll CSN Member Posts: 2
    edited July 2019 #2
    polycythaemia vera

    I was just given the diagnosis of 

    polycythaemia vera ( rare blood cancer) can anyone tell me what to expect.  50 yrs old female. 

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  • Wool
    Wool CSN Member Posts: 2
    edited April 2020 #3
    JenAll said:

    polycythaemia vera

    I was just given the diagnosis of 

    polycythaemia vera ( rare blood cancer) can anyone tell me what to expect.  50 yrs old female. 

    MPNs (rare blood cancers)

    I have a rare myeloproliferative neoplasm (MPN) (Type is: essential thrombocythemia). I found a website called voicesofmpn.com. They have videos, live seminars/conference, and actual patient testimonial. Hope this helps. I am an 8 year survivor.

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  • po18guy
    po18guy CSN Member Posts: 1,572 Member
    edited September 2020 #4
    For anyone reading this...

    I have been on Jakafi (Ruxolitinib) for over two years. It is aimed at Polycythemia Vera and Myelofibrosis, but I am using it to control chronic Graft-versus-Host-Disease (GvHD) following a stem cell transplant. It is a rather easily tolerated drug - the only risk so far is anemia. We are modifying my dosage and monitoring blood numbers so as to avoid it.  

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