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PV question

Posted , 6 users are following.

julia15874
julia15874

Hi how many in here are diagnosed with PV that have a jak2- JAK exon12- and it's due to another mutation (if so what mutation)or the bone marrow showed that it was PV?

0 likes, 12 replies

12 Replies

  • peter98873
    peter98873 julia15874

    Posted

    Hello Julia

    Recent research into PV and Jak2 seems to disclose that there are probably other mutations previously unknown,  being discovered.  I expect it will all show up in time.

    Peter

  • kevin81762
    kevin81762 julia15874

    Posted

    Just sn FYI Julia, and I think I may have mentioned this to you before, virtually all PV patients harbour either the jak2 v617f (96%, some say 95%) or exon 12 mutuation (3%, some say 4%), accounting for 99% percent of all cases. There are even newer studies out that suggest the jak2 v617f mutation in closer to 98% of all cases...  
  • harrishill1
    harrishill1 julia15874

    Posted

    Hi Julia. If you tested positive for the jak2 gene mutation, it means that you have Polycythemia Vera and it is not secondary, as in caused by some other problem.

    I tested positive, and I have PV. If you were not positive, then they call it Polycythemia Rubra Vera, and it was caused by some other problem.

    hope that clears it up. harrishill

     

    • julia15874
      julia15874 harrishill1

      Posted

      HI I thought PRV was the same as PV, I just thought they both had the mutation, thank you x I'm seeing a MPN specialist in Hull so should get answers this year for sure, I hope your okay?

    • kevin81762
      kevin81762 julia15874

      Posted

      Hi Julia... You are right, PVR and PV are the same thing... Polycythemia Vera is just an abreviated version of PRV, PVR.

      Polycythemia is a red blood cell increase caused by things such as sleep apnea, smoking etc... 

  • Clicker
    Clicker julia15874

    Posted

    I have PV and JAK2 mutation, common I think.
    • peter98873
      peter98873 Clicker

      Posted

      Hi Clicker.

      Yes together they are not uncommon at all.  However, what you have is a very rare blood disorder that will henceforth require good medical attention to control.  With this you can live for many years without too much awareness but it should not be treated lightly as others will tell you.

    • Clicker
      Clicker peter98873

      Posted

      Indeed Peter and I can say that I receive excellent care and advice from my local hospital haemotology dept. I have previously had breast cancer many years ago now, twice! So I do take my health very seriously as I'm sure everyone with this rare cobdition does.

    • peter98873
      peter98873 Clicker

      Posted

      Hello Clicker,

      Well it seems you have things under control as far as possible which can only be good.  Surprising how many PV sufferers have a history of other serious illnesses.  Good luck for the future.   Peter.

    • Clicker
      Clicker peter98873

      Posted

      Hi Peter yes I have noticed that too. In some info I've seen radiotherapy has been considered one of a possible cause for PV. Its over 30 yrs since I had that treatment so who knows. Best of luck to you too.

    • peter98873
      peter98873 Clicker

      Posted

      Hi Clicker.  Thanks for your reply.  The mention of radiotherapy is someting I have come across before in discussions.  I have been too close to electrics, electronics, radio transmissions, radar, microwaves et al for a good part of my life.  The most recent was being in the proximity to Chernobyl after that episode and of course many people were directly affected by the fallout which encompassed a very large area.  It was officially claimed that this was not a difficulty in Western Turkey where I was staying at this time.  However, it now appears that this claim is a little understated and it is known that many people are now victims to this fallout which drifted far and wide.  Friends of mine in our area each later succumbed to very similar cancers but they were never attributed to this cause.  It certainly gives much food for thought but let us be real, do we ever hear the truth of these occurrences. I returned to UK some ten years afterwards and following this my PV showed up.  This was stated to be due to the defective JAK2 gene with which I had been born.  So the origins of my disorder arose and have contimued on ever since.  I accept what I have been advised by the hospital but whether radio contamination has played a part, I know not.  Still ruminating.  I am where I am and that is it!  

      Peter.

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