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Newby - living with polycythemia vera

fredo03
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Hi all. I’m new to this group but was diagnosed with polycythemia Rubens Vera in 2012 after a big bleed from a varisice in my stomach. I’ve taken 3 types of medication. Anagralide, hydoxycarbamide and now Ruxolitinib. I have an enlarged spleen and a blood clot in my portal vein. Is there anyone on here who has had there spleen removed? If so do you get a lot of infections. 

  • Hello Fredo03

    I'm sorry to hear about the struggles that you've had since being diagnosed with polycythemia vera in 2012. It sounds like it's been a difficult journey for you at times. 

    I've had a look through our community posts and can't see any other members who have mentioned living with PV and having had surgery to remove their spleen. It may be that you're able to connect with others who are living with this condition via the Blood Cancer UK website. 

    If it would help to talk through any questions or concerns you have with one of our nurses, you're welcome to call them on 0808 800 4040, Monday to Friday, 9am to 5pm. I know they will be happy to listen and offer any advice, information and support they can. 

    I do hope that things progress more smoothly for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Thank you so much for replying to me. I will contact blood cancer uk

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