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any advice appreciated...

Posted , 4 users are following.

maria16378
maria16378

my Dad who is 65 was diagnosed with polycythaemia vera a few years ago, doesn't talk about it much, lives alone and doesn't use a computer so I'm trying to educate myself more on this for him.

he gets bloods drawn regularly and is taking aspirin. the doctor is advising that he go on (i'm not sure of the name) but its a form of chemotherapy, he's worried about the side effects and has been putting it off. Just wondering how people find this treatment? or if there are any alternatives? 

 

0 likes, 7 replies

7 Replies

  • clem19079
    clem19079 maria16378

    Posted

    I think you might be talking about hydroxycarbamide (hydrea) there are risks from this drug, but your dad's consultants might think the benefits out way the risks. I am on 9 per we and to be truthful I don't like taking it, but It dampens the symptoms and needing blood of is a lot less. He can be assured that his consultant will be keeping a close eye on this drug and will be able to give medication to counter any side effects ie itching is one problem. I was recently advised to check my legs for cuts that won't heal (skin cancer is the risk) though he can ask what the risks are. The way I look at is this, I would rather take the risk of cancer where it can be caught early than have a stroke and end up being helpless. Not much of a choice I know but at least you got an option. Hope this helps.
    • maria16378
      maria16378 clem19079

      Posted

      Thanks for the reply and info. glad the treatment is working out for you and its keeping everything under control. I know he said the aspirin is keeping things at bay but I suppose as it progresses this will not be sufficient. he mentioned the itchy symptoms and he's alot more tired that usual.  it won't hurt for me to go meet his consultant to make sure he's in good hands smile

       

    • clem19079
      clem19079 maria16378

      Posted

      I couldn't edit my text, you dad probably like me doesn't know what it feels like to feel the cold. I didn't but I do now and I don't like it, though that's the consequence of this drug as are mouth ulcers, first thing in the morning but dor me they fade through out tge day. Don't rush him it took me 2 yr to decide. Provide him with as much info as he can handle and let him decide pressure won't help him , it's his life after all. Also if he doesn't feel he wants to trust this drug he can always help. Another thing he can do (as I did) he can ask the consultant for appointments every 6 wks as I have, that also would give him a little insurance. I wish him well. Don't worry to much he might still be around long after me and u are dust.
    • maria16378
      maria16378 clem19079

      Posted

      yeah I think he feels the cold alot now. he has been going in and out for the blood draw for actually around seven years now every three months but three years ago they recommended the hydrea. thanks so much for the advice.. it helps alot to get a better idea. pressure on him definitley won't help. 

       

  • harrishill1
    harrishill1 maria16378

    Posted

    HHi maria16378. I have PV was diagnosed 3 yrs ago. I've been on Hydroxyurea to treat it, for about 21/2 yrs. I get by fine on it. No longer need blood draws. If he goes on 2 pills a day, make sure he takes one in the AM and the other in PM. That way it regulates the blood better. It will say to do that on the bottle, hopefully. I feel good most of the time now, I am 73 yr old female. Apparently some people have side effects. I have had none. Hope this helps.

    harrishill 

  • harrishill1
    harrishill1 maria16378

    Posted

    Hi maria 16378. I am 73, diagnosed 3 yrs ago. I take Hydroxyurea and haven;t had any side effects. However, if he goes on it, make sure he has flu shots every yr, also pneumonia shot. Hydroxy does lower the immune system a little. I've never had any side effects, but apparently some people do. I am very active, exercise a couple of hrs each day. I need to get back out and finish my weeding right now. Good luck.

    harrishill

    • maria16378
      maria16378 harrishill1

      Posted

      Hi Harris, sorry I hadn't checked this. great to hear you are doing well and able to keep active. thanks for the advice its great to know more about it. 
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