Polycythaemia vera
I am currently undergoing tests for PV and am pretty worried about it tbh. Can anyone reassure me ? I have had high rbc, high hgb and high hct on full blood count. Waiting to see a haematologist. Not sleeping great. Thanks
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Hi Dee1212 I was diagnosed with Polycythemia Vera in December 2023. When you see the Haematologist you will get tested for the Jak2 mutation, it's a blood test. It takes a long time to get the results. I was given a booklet from blood cancer uk about Polycythemia vera which I found very helpfull and was able to give to my family to read so that they could understand. There are a few types of treatment and if one doesn't work or doesn't suit you, you can try another. You will find very usefull information on both Blood cancer Uk and MPN voice. I am on the blood cancer UK forum and have found it very welcoming and supportive. Once diagnosed I now attend the haematology dayward for blood tests and occasional venesections. I was originally on Hydroxycarbamide and aspirin. Now I am on Ruxolitinib and Clopidrogel. Not knowing is a time of worry so look after yourself. Best wishes.
Dear Dee1212,
Thank you for posting to our online community.
I do hope you receive some responses soon from people in a similar situation who can help reassure you.
In the meantime, if you would like to speak with one of our nurses on the Support Line you can call 1800 200 700, Mon to Fri, 9am to 5pm, and we will talk through your concerns and answer your questions as best we can.
Kind regards,
Cancer Nurse