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Does anyone else have polycythaemia vera?

Mart57
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Hi everyone, I have joined this forum for a way of talking to people when I need to as although I have not got any form of cancer myself i have a high family history  two of my dear sister's  one past one a survivor and my darling brother who I lost a year ago... the same year my husband had been diagnosed with polycythima vera after having 13 venesection since last July he has now started taking hydroxycarbomide as his iron levels are very low. It's only a low dose to start but may be increased depending on how it is helping with his blood levels. I know this is going to be a life long treatment but I am wondering if any of you lovely people have or know any one with this condition that I could chat to on this forum, many thanks sian

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    Hi there ..

    Sorry you've not had no replys but that may be a rare one ... maybe if no one can help here, give our nurses a ring Mon to Fri... number on home page ... I'm sure they Will be better equiped them us to help you ...

    Hope someone picks this up soon who can help more then me ...  but welcome to our little chat room ...

    Chrissie xx

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    HI Sian

    My husband has just been diagnosed with PV jak2+ aswell. He is 34 im 30 and we have a 6 year old daughter.

    He initally had 3 venesections in 1 week and now he has 1 every other week so we are at number 7 at the moment since beginning of Feb. He also takes aspirin daily but his consultant wants to discuss putting him on interferon alpha next month as his levels arnt stay low enough and they can vensect weekly as it will make him anemic apprantly. Id love to catch up and chat please feel free to contact me anytime. Its all really new to us to and trying to ask all the right questions and get the right understanding etc.

    Xx look forward to hearing from you xx

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