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Essential thrombocythemia

Angiemac
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Not sure if I'm posting in the right forum but have been taking oral chemotherapy for over 3 years now - thinking it was to reduce my high platelets to avoid  Strokes etc. Have only just found out that this is a type of blood cancer... I see my haematologist every 3 months for a check up - cancer was never mentioned, my own gp thinks it's possible that I couldn't have taken it in when I was told overv3 years ago. There have been 4 different haematologists at the hospital in the time I've been there. I'm seeing her in 2 weeks, hopefully she can explain more to me. All I know is I'm very frightened - can anyone help me please. Thankyou so much.

  • Offline in reply to Fizzytodd

    Hi Claire

    Is this just England? Nothing yet in Scotland. I don't have the type of ET which causes clotting so hopefully not at risk, relatively speaking. I'll ring hospital tomorrow to check. 
     

    Fiona 

  • Offline in reply to Fizzytodd

    Thank you for that , I wonder why I didn't get a letter? I am on x 1000 of hydroxycarbomide and aspirin , also allopurinol? 
    oh well will still carry on shielding 

    thanks again 

    Jane

  • Offline in reply to Fizzytodd

    Ah ok, thanks. Stay safe x 

  • Offline in reply to DoubleF
    Hi Jane/Chauntel (DoubleF and everyone else) I have not had a letter, but like you am on Hydroxycarbamide, Aspirin and take Allopurinol. Also have to have heart medication, because the first ET drug I was put on 20 years ago, gave me heart failure, from which obviously I have mostly recovered, although heart at low end of normal and am on blood pressure drugs as well. I have been isolating since the beginning. My regular consultant haematologist appointment was done by phone as my platelet count is very regular - checked every 4 months. I have not been out of my front gate and my daughters, both involved with essential work, have virtually forbidden me to go any further! I am so glad I matter so much to them that they want to keep me safe. They are concerned that the current relative 'freedom' will create a second wave. So my thoughts are - if it is possible to stay home and not go out at all, that is the safest action and I don't need a letter telling me this!! Time for another cuppa! Stay safe and well. x
  • Offline in reply to chauntel

    Hi Jane

    I mucked up logging in the first time, so have replied to your post on DoubleF's post - hope you see it. Maureen

  • Offline in reply to DoubleF

    Dear all 

    I got my shield letter beginning of April due to anagralide medication and also diagnosed asthmatic with prevention inhalers. My mother who I care for also got shield recommended letter from gp   three weeks later that's a slightly different from scot gov shield letter. Basically all on recommendations via your haematology consultant or gp doctor who knows your underlying health condition

     

    Week 9 in big brother and counting 

  • Offline in reply to NM9309

    Hi all,

    I work in heathcare and had been working fro home some of the time and going into work others depending on need based on the fact that I'm young(ish!), no other co-morbidities ans not actively being treated at the moment.  All in all, I felt that made me lower risk.  I certainly didn't receive a sheilding letter at the outset.

    However, when the hypercoagulopathy issues started to emerge, I spoke with the Haematology team and their advice was that if I should work from home if I can and follow the letter of the government's then advice.  They did give me a sheilding letter covering me until mid-June just in case I should need it to convince my managers, but thankfully they've been very understanding and are happy for me to remain working from home.  Had a telephone consultation last week and they've said to carry on as I am.

    Whilst I'm still not sheilding in the true sense, I've not left the house further than the garden for over a week now to try to limit my contact with others as far as possible.  Also taking all the ususal hand-washing precautions, etc.

    Strange times.

     

  • Offline in reply to MaureenV

    Hi Maureen , thanks for that reply , it was as if I had written it !  I
    will carry on isolating until I feel safe .

    take care all of you and let common sense prevail x

  • Offline in reply to chauntel

    Hi 

    I'm new to this forum. I was diagnosed last Summer and started on my chemo in November when my platelets reached nearly 700. Last test they were 417. I used to get a lot of retinal migraines but since being on the chemo I have not had any. I do not know anyone with this condition so it is good to be able to speak with other people. I don't get nose bleeds as such, but there is often blood in my tissue when I blow my nose. Is this normal as the doctors don't seem to be concerned about this.

    take care everyone and stay safe.

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