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ET Newbie

Hubcap1962
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Hi there, I'm Ivan and in mid-December I was confirmed as having ET which was one heck of a shock, (merry xmas!). I had gone to my GP with a sore toe which I thought was early arthritis or gout. The GP was very thorough and eventually referred me after what seemed an endless round of blood tests - for a sore toe? Really? The hospital staff were very helpful and understanding, offering plenty of encouragment and advice. I'm getting used to the idea now. I am so pleased to find this forum and other ETs (if that's what we are).

Luckily I'm classed as a low risk at the moment (54, non smoker or drinker). As I've learned more about ET it has explained the toe (obviously :) ) but also an increase in 'visual' or silent migraines - so while I'd rather not be in this position, I know what's been behind a few things that had been getting me down in recent years.

Anyway, I don't know if anyone knows, but as there is a risk to damaging my bone marrow, is donating some now a possibility to use in the future when mine becomes knackered beyond the point of usefulness?

Ivan.

 

  • Hello Ivan,

    I am one of the enquiry nurses and have been asked by our moderator Steph to take a look at your post in case we could add anything.

    I can follow the logic of your idea to store some of your bone marrow for the future. I think the problem would be that the stored bone marrow would still be able to make too many thrombocytes (platelets) so you would still have the disease.

    When people have bone marrow transplants for blood cancers they need to have treatment beforehand to reduce the disease in their bone marrow. This sort of treatment can be quite harsh so it isn’t undertaken lightly. 

    Occasionally if someone develops bone marrow damage (myelofibrosis) as a result of ET (essential thrombocythaemia), they may be able to have a bone marrow transplant, but this is with someone else’s healthy bone marrow. This treatment is hard going and not without risks so it isn’t used unless it is really needed. I think the thing to bear in mind is that the chances are you will never develop myelofibrosis and so won’t need to be treated for it.

    It may be worth knowing about another charity called MPN (Myeloproliferative Neoplasms) Voice. (MPN is an umbrella terms for several blood conditions including ET). You can take a look at their website here .

    Take care

    Julia 

  • Offline in reply to CRUK Nurse Julia

    Thank you for your time Julia, good to get your comments on my random thought.

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