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Scared of having pv

Posted , 5 users are following.

Guest
Guest

Hi.im 23 yrs old and went for regular master health chk up in April this yr and came to know that my hb hct and RBC lvls are high.As it was just little higher than normal and 4 yrs back my levels were normal, oncologist told me wait for a month and again do cbc.As it turned out my hb was even higher and RBC too but my hct dropped from 53 to 49.Just few days back they collected my blood sample for jak2 and exon12.Currently I'm fine and work 9-10 hrs daily and am super active but really worried about future as I know condition gonna get worse....and have only one question... why me.....

0 likes, 23 replies

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  • Guest
    Guest

    Posted

    An update.iam jak2 neg.waiting for exon 12 report.
    • peter98873
      peter98873 Guest

      Posted

      Hello Vipulm,

      Good news then, no JAK2 mutation for you.  

      Peter.

  • john00844
    john00844 Guest

    Posted

    i have recently been diagnosed with prv, blood tests results were haemoglobin 207 g/l  white count 10.0 x 10 /l  platelets 296 x 10 /l I given 2 litres of blood after the last 2 weeks and started  I hydrox tablet every other day until next week when I have another blood letting and tests. jak2 was also confirmed .I very fairly well at present a little tired and sweating more than usual, but wonder from the others here on this site if any of my diagnosis is unusal , many thanks.

     

    • Guest
      Guest john00844

      Posted

      Diagnosis seems fair but as your wbc and platelets are within range idk if starting hydroxy is okay.... but if ur hem team thinks it's necessary....then u should take it....Iam also new here so don't know a great deal about pv......iam yet to be diagnosed as iam jak2 and exon12 neg....how much was ur hct??

    • peter98873
      peter98873 john00844

      Posted

      Hi John,

      Your diagnosis of PRV is quite recent and it is for sure that your readings will not be normal.  It will take a little while for your treatment to form any sort of control and indeed, may well be subject to alteration in due course as the readings settle down to what is required.   This is not unusual.  The venesection (blood letting) is normally used to contain the early symptoms of PV and the hydroxycarbamide tablets will deal with a different aspect of your readings, unaffected by the venesection.  Tiredness, lethargy and sweating are symptoms of PV and the treatment you now receive will begin to take care of these and as time passes the improvements will be felt.   You have not mentioned any genetic mutation of the JAK2 gene and one assumes that this has not affected you and may not do so.  Should this occur then any treatments you receive may be amended.  If you have any uncertainties do not be afraid to ask questions of your Haematologist who will be able to remove  any doubts.  My advice is for you to take things slowly and try not to get ahead of yourself.  Polycythaemia is a very variable disease and people are affected differently too.  It is also very rare and requires supervision.  The tablet you now take is a very low dosage and unlikely to arouse problems.  You can live with this disorder if you approach things sensibly and maintain an active and healthy life.   This forum has a number of patients with this disorder and most can offer some sound advice.  Best wishes.

      Peter.

    • john00844
      john00844 peter98873

      Posted

      Thanks for your sound advice. I shall take it easy I'm 54 and jak2 was confirmed.

    • peter98873
      peter98873 john00844

      Posted

      Hi John,

      Thanks for your message.   The fact that you have been diagnosed with JAK2 does not necessarily mean that you have the mutation which can occur.  If it is affected by this mutation then it will require another approach by the Haematologist regarding the treatment.  If it occurs I am sure you will know but other people get this mutation and live alongside it quite well.  It is just something you should know of.  The JAK2  means the stem cell concerned is formed as an abnormal split cell, usually from birth.  This is known as an allele cell and any mutation of this is known as a burden.  Doubtless you will encounter this  from others as you go along but it doesn't mean you are now affected.  Look after yourself and you should live a long and healthy life.  Best of luck.

      Peter.

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