polycythemia vera ( cinfirmed )

Hi every one Im fady ...Thanks very much for your words and support about suspected p.v,Now investigations are completed and im definitely diagnosed ploycythemia vera..my doctor prescribed hydroxyures 1000 mg daily for two weeks initially...Im worried about its side effect as I know its chemotherapy.....I searched about survival in medical website as uptodate ..the data available only from old age above 60 and survival about 15 years .I couldnt found trustable result from yound age about their survival..Im very sorry but I still alittle worried..

4 Replies

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  • Hi Fady. If you read a lot of posts on this site re Hydroxycarbomide, you will see that many of us have been on this drug for many years with little or no side effects, there are other options if you should find it unsuitable for you ,

    . I know it's easy to say , but try not to worry too much. Of course we all went through the same feelings as you when we were first diagnosed it's a scary time, but as you get more information and reassurance you will learn that we cope and the doctors keep our symptoms under control, so that we can get on with everyday life.

    This forum is a wonderful place to get help and to know there are many of us ,like yourself , who have got so much comfort from "our friends "here.

    Best wishes Sandy.

  • Hi Fady

    I would echo what Sandy has said, many of us have experienced no or few side effects from HU, hopefully you will be like us. And as for survival, again many of us are still living a full life a long time after diagnosis. I'm sure that once you get a little more used to living with a chronic condition you will feel a bit better. It is such a shock initially, and there is a lot of rubbish on the internet so t be careful what you look at. Do ask your haematologist any questions you have too, and if there is a forum near you, you may find it helpful to meet with others and see how normal (or not!) we are.

    best wishes

    Fee

  • Hi fady, please take on board what Sandy and Fee have said and please go the MPN Voice website to get trustworthy information. I did as you're doing and read the net - confused myself and scared the life out of me when there was no need. It wasn't until I came on this forum, got info from Maz and the MPN Voice website and then the light was switched on. Going to a forum is a must too as the others have said.

    Now you know what you have got, you can start having some control over your illness and not let it rule your life. Yes sometimes it wins for a few days when fatigue is bad, but you know after venesection or whatever your treatment is, you are going to get the upper hand again.

    Email Maz directly and ask her about the stats and you will get a trustworthy answer. Maz is great if she doesn't know, she'll find out.

    Take care, keep posting. Thinking of you and understand what you are going through. Aime x😺😺

  • HI fady,

    My husband was so scared to take hydroxy after reading side effects in all honesty he's never had any problems he certainly feels loads better in himself.

    There's people on here who've had this pv for years if it's managed you can live a normal life x

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