Essential Thrombocythaemia

FormerMember
FormerMember
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I know this is a grey area but I still not sure if Essential Thrombocythaemia is a form of Chronic leukemia or not.  Please could somebody clarify this for me.  Some say blood disorder other say cancer.

  • FormerMember
    FormerMember

    Hi,
    Are you still on this group? I have recently been diagnosed with Essential Thrombocythaemia and would like to talk to someone else who has it.

    Hope to hear from you :-)

  • FormerMember
    FormerMember in reply to FormerMember

    Unknown said:

    Hi,Are you still on this group? I have recently been diagnosed with Essential Thrombocythaemia and would like to talk to someone else who has it.

    Hope to hear from you :-)



    Hi, 


    I was diagnosed with ET 2 yrs ago. Here to help if I can 




  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jojawi,

    Thanks for your reply. Im feeling so overwhelmed by this whole mess. Did you get overwhelmed too? Is this normal?

    I was in hospital for 4 weeks, and am now having to go back a lot, so far its been twice most weeks. Ive only been out of hospital 3 weeks. Was taken in to hospital for something else, but that was cleared after a couple of days, then it was for ET after, it felt so long, and I didnt even have any symptons, so it was frustrating not being able to be active and do stuff.

    Do you mind my asking questions? I have so many at the moment, and am interested if anyone has has similar chalenges to me.

    Thank you for replying. Maybe you know how much it helps to find someone else with the same condition as you? :-)

    Very best wishes

    Fi x

  • FormerMember
    FormerMember in reply to FormerMember

    I too have just been diagnosed with ET but am much older than you.

    I hope MacMillan won't mind but could I recommend that you look at MPN Voice and their online support group at https://healthunlocked.com/ . You will find people there who also have ET and other associated MPN conditions and there is always someone around who is in a similar position as yourself.

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you i have had a look on the website .. how long have you had ET?

  • FormerMember
    FormerMember in reply to FormerMember

    Sorry, only just seen your response.

    I was diagnosed 6 weeks ago but from my symptoms, which are minor, I think I may have had ET for about 3 years.

  • FormerMember
    FormerMember in reply to FormerMember

    HI CassieSen

    What medication are you on. I've been put on Anagrelide and aspirin but getting headaches and palpation's.  Consultant said if I'm still getting them in 2 week's he'll changed my medication. X

  • FormerMember
    FormerMember in reply to FormerMember

    I'm on 75mg Aspirin and 500mg Hydroxycarbamide as I am over 60. I do get a very slight headache which I'm not used to as I've never suffered from them in the past. However, they're not really all that intrusive.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi CassieSen, last few weeks haven't been good, my diverticulitis has flared up which raised my platelets, consultant said Anagrelide will aggravate it. Headaches have eased off but plenty of palpitations. Hope all is ok with you x

  • FormerMember
    FormerMember in reply to FormerMember

    Hi I have just been diagnosed with ET