So, do us PV people actually have the dreaded 'C' word?

I recently was looking on an American site about MPDs & it was the first time I'd read that PV is a slow growing cancer which put the wind up me a bit I can tell you! I have been offered Hydroxy but decided to stick with the Clopidogrel & 2 monthly venesections which seem to suit me. I just didn't make the connection between Hydroxy being a chemo drug & me having a type of cancer as my consultant has never used the word. Can anyone out there offer further clarification? I'm JAK2 positive & have had PV for about 8 or 9 years. At one point I was told I also had ET about 3 years ago but that hasn't been mentioned again since. Finally, is it preferable for us guys to wear Medic Alert bracelets? Was thinking of buying one. Thanks,Polly

& 2 monthly venesections w

decided to stick with the Clopidpgrel & regular 2 monthly venesections which seem to suit me.

the first time I had ever seen PV referred to as 'a slow growing cancer' which put the wind up me a bit I can tell you! Of course I'm aware Hydroxy is a chemo drug which I've been offered but declined owing to the possible side effects but I really didn't make the connection. I stuck with the Clopidpgrel

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  • hi pollypv, i too have pv and am jak2 pos= i manage on venasections alone as i had a reaction to hydrox- i wear a medi alert bracelet which as very few doctors know anything about pvr and on the surface my bloods look ok and my contact number is my haematologist. all cancer is, is a mutation in body cells- any where in the body so yes by definition it is a cancer- but with a little c= cheers karteeka

  • Hi PollyPV,

    This question has popped in this forum up a couple of times- if you put, for example, "is PV a cancer" in the search box on this site you should find a previous thread or two with a number of member's answers.

    But, in short, the answer is yes. I understand that PV has been classed as a type of cancer for a few years, BUT, it is important to realize that having, as you put it, the dreaded 'c' word does not alter your prognosis and that PV is manageable and with proper medical care, many people experience few problems related to this disease.

    Tim

  • Hi Polly/PV, as Dodders says this question has come up before and the cancer classification is important for getting free prescriptions and also payouts on critical illness claims. I totally agree with what Dodders say too, the classification does not alter your prognosis, the condition is manageable, treatable with proper medical care and many people live a long and happy life. I can't remember who said it - but the best way to look at PV or any of the other MPNs is like the divisions for football teams. Breast cancer and others similar would be division one, whereas you might class PV as division six or seven. I think that is a very good way of looking at it. It could change to leukaemia or similar but it may never do this. My way of looking at it is that it could have changed by my blood test tomorrow or it may not change for another 10, 20 years or never. I don't see the point in worrying myself sick about something which may or may not happen. I see lots of people in a worse state than me and I could get knocked down by a bus tomorrow!! (I will be careful tomorrow!). Hope this helps - I have PV but Jak2 negative. You will get lots of support on this forum which I have found a godsend. Take care, best wishes Aime

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