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Polycythemia Vera

BrenMax
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Hi, I'm Brenda and a year ago was diagnosed with Polycythemia Vera, apparently quite a rare blood disorder. I have been taking the chemo drug Hydroxycarbamide and having regular blood tests but would like to know if anyone else on the Forum suffers with this and their experience of it. I am getting quite depressed by it all as there is no known cure and I am now have side effects from the chemo.

Parents
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    I was diagnosed with Polycythemia Vera last November and had never heard of it either, I am still in shock and disbelief. Started Hydroxycarbamide in early December and had to pause it mid January due to all my levels dropping so low that I nearly needed a transfusion, that was scary. Next week I have a blood test to see how things are and whether treatment starts again so I will have to wait and see. I do have fatigue, dizziness, ringing ears, generally not in a good place as to why this has happened to me, so yes I know how you feel but we just have to get up each day and get on with it. Sorry about the long winded reply and can’t give you much help

  • Offline in reply to JEMM1

    Hi jemmi I’m the same mine was a routine blood test last June my platelets were raised since 2019 and my antibodies have been low since 2012 and no one picked up on this so now I’m a pill popper I’m taking Ruxolitinib Jakavi I do hope your ok 

    Eugene

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