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Essential Thrombocythaemia

GreatAuntieP
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I'm 73 and newly diagnosed with this condition and awaiting a treatment plan. I'm pretty old but otherwise fit and active and in good health, apart  from the odd creaky joint, and have a healthy lifestyle. I understand this is a fairly rare condition. It would be good to share experiences with people already living with it. What are the treatments like? Do the symptoms get worse (I haven't really noticed any yet). It would be good to have some idea of what I might expect.

  • Hello GreatAuntieP

    I'm sorry to hear that you've recently been diagnosed with essential thrombocythemia. It's good to hear that you're currently otherwise fit and well, but it's understandable that you have questions about how this may impact your health in the future. 

    I've had a look through the forum and can't see that we currently have any other forum members active who are living with ET, but we do have a lot of older posts that you might find it helpful to read through. You can find those posts by typing essential thrombocythemia in the search box at the top of this page. 

    We have some information about ET on our website and as well as some information available on the Blood Cancer UK website. 

    If you'd like to talk things through with one of our nurses, you're welcome to call them on 0808 800 4040, Monday to Friday, 9am to 5pm (excluding bank holidays). I know they will be happy to listen and offer any advice, information and support they can. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hi, I noticed your post recently but could not respond as I am dealing with another illness at this time. I was diagnosed with essential thrombocythemia in March 2020. I am a  72 year old female. I suffered with excruciating pain in my feet and after numerous visits to the GP referred myself to.podiatry. Eventually was referred to hospital where I was diagnosed. Consultant said he had never seen someone who presented this illness in their feet. As soon as I was given 75mg of aspirin my feet were free from pain. I have been on hydroxycarbamide since then and have been absolutely fine. My platelet count is monitored regularly and medication altered if necessary. I hope this helps.

    M

  • Offline in reply to McLachlan

    Thank you for your reply, which is very helpful.  I'm sorry to hear you're having to deal with other problems as well. I managed to avoid the sore feet (mine itch, actually). In fact, I had no obvious symptoms at all and the problem was discovered in a routine blood test for something else. I have an appointment this week when I'll be told what my treatment is to be. I'm encouraged to hear that yours has been effective. I'm particularly concerned at the moment as I'm listed for hip replacement and can't be cleared for surgery until the platelets are under control. I'm hopeful that this can be as soon as possible as my platelet count isn't catastrophically high (around the 550's, I think).

    Good luck with your health issues. I suppose it's inevitable that bits of us start falling apart at our age!

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