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UK cancer support group

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nandrews
nandrews

At a recent clinic it was suggested I might try joining a local support group. I was somewhat surprised that it was allied to Cancer United.

I hadn't previously considered PRV to be any form of cancer and still am a bit confused.

Is PRV a form of cancer? I know that the medication of choice, Hydroxyurea, comes under a heading of chemotherapy, but I just thought that was for convenience.

Perhaps some here, more knowledgable, could enlighten me?

Thanks

Nigel

 

1 like, 6 replies

6 Replies

  • geoff-mpnfamily
    geoff-mpnfamily nandrews

    Posted

    Hi Niger, some specialists still don't know that its's cancer. The world health organisation declare Polycythaemia Vera as cancer quite a few years ago, because they discovered evidence that our red cell multiply independently (without erythropoietin protein).

    It now comes under the category 'Myeloproliferative Neoplasm' - the word neoplasm means abnormal growth and is most commonly refered to with all types of cancer including chronic leukemia wich is what we have.

    Myelo means marrow (bone marrow) and proliferative means out of control growth, in our case our cells plit in large quantities and our marrow also over produce.

    The word cancer is scary and a little hard to come to terms with, but PV is chronic (long term) I have met several individuals who have lived with this for ove 25 years and still going.

    I hope that helps

    God bless

    Geoff

    • geoff-mpnfamily
      geoff-mpnfamily

      Posted

      Hmph... Nigel*** sorry predictive text, very anoying lol
  • geoff-mpnfamily
    geoff-mpnfamily nandrews

    Posted

    Leukaemia & Lymphoma research uk, are excellent for resources, they have a booklet you can order at no cost to you, called Myeloproliferative Neoplasm. You can also download the pdf version too.

    I run a support group called MPN Family UK on Facebook, you are very welcome to join us. I'm still working on my website (slowly).

    If you don't fancy joining a group on FB, there is an awesome support team called MPN Voice, if you Google it you should be able to find both there website (very helpful) and there support forum via health unlocked.

    Geoff

    • nandrews
      nandrews geoff-mpnfamily

      Posted

      Geoff,

      Thanks for that detailed and helpful description.

      I haven't gone deeply into the details of PRV. Prefering to just accept my GP's advice and get along with whatever symptoms it throws up. Partly fearing that with more knowledge it will make me more focused on the problem than the solution - which is getting on with life despite it. But I recognise that a little knowledge can be helpful.

      I thank you again.

      I will do some searching as you suggest. I'm not a great Facebook user so I'll pass on your group for now.

      Regards

      Nigel

      P.S. I am 23 years on from the first diagnoses of my PRV, so I hope I have a few more years left!

  • peter98873
    peter98873 nandrews

    Posted

    I have replied a couple of times on the PV postings so will not over-elaborate.  PV i am advised is not in itself cancer, but if not treated can develop into Leukaemia, myelo disorders, heart attack or stroke.  Seemingly people with PV are variously affected by differing symptoms most of them painful and/or disturbing.  Not a great deal is currently known about PV but there are one or two very informative web-sites available which are very good.  I was diagnosed with PV over 10 yrs ago and treated with Hydroxycarbamide. After some years I reached the maximun dosage of this and became very intolerant of it.  Those who suffer with painful toes/feet will know my symptoms.  I needed surgery to correct the foot pain in my toes.  Because of this my medication was changed to Ruxolitinib which so far, has been absolutely beneficial.  I was participating in the hospital trial for the drug but was still on the previous drug (best available treatment - placebo).  I have always been listened to by the medics I visit and able to discuss matters in detail with them.  They have been excellent.  In my view, Ruxolitinib has proved the best treatment to date.   Again, all of the blood readings are important and really require controlling.  There is no cure and still a way to go before this is reached.  I understand the tests are continuing in different countries, particularly USA.

     

  • harrishill1
    harrishill1 nandrews

    Posted

    Hi Nigel. Yes, People often refer to PV as Cancer. I too, do not consider it to be cancer. When reading up on PV or PRV, the articles say PV can turn to cancer, and often does, but that PV patients can live ten, even 30 yrs after diagnosis. Also cancer patients have a low blood count. PVpatients have a high red blood count. Therefore I say "It is not cancer until it turns to cancer.  Harrishill
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