I finally had my diagnosis of Essential thrombocythemia (ET) last week and don’t quite know what to think of it all!
The haematologist has suggested 2 medications to choose from - hydroxycarbamide or interferon alpha. I’m already taking aspirin.
Bone marrow biopsy was yesterday and was much less horrible than I imagined it would be - feel like I’ve been kicked by a horse today, though!
Also waiting for an ultrasound of abdomen because I’ve been feeling some fullness.
There are so many things to think about - I’m healthy, I don’t get ill and as a nurse I’m used to treating, rather than being treated!
I’m really interested in hearing the experiences of others, especially their journey and changes in symptoms over time
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Gosh a lot has been happening to you @HelRol.
You say that you are a nurse and I wonder if that is helping you or not now that you are the treated and not the treater?
I know this is not easy but perhaps try to just take it a day at a time.
I hope others will be able to share their experiences for you
I also attach the Blood Cancer UK details on Essential thrombocythemia (ET)
Essential thrombocythaemia | Blood Cancer UK
Please do let us know how you get on and really look after yourself.
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Hello @HelRol - welcome - glad you have found the forum and can find some support - it’s good to touch base with others in similar situations and helps when you have received a diagnosis doesn’t it. I am also someone with Essential thrombocythemia (ET) for me diagnosed 19 years ago when in my early 40s! I can see your consultant is doing all the “normal” checks before starting or discussing treatment with a BMB (I smiled at your description kicked by a horse very accurate!!) and an abdominal ultrasound, sometimes a chest X-ray is done too. I’ve had both the treatments you mention, they are the first line treatments for Essential thrombocythemia (ET) in the UK, both very effective with about same levels of side effects which are hugely individual to each patient. I had 13 years on Hydroxy from diagnosis (I was quite poorly when diagnosed so needed treatment from the get go) which then stopped working so had five years on Pegasys interferon which didn’t go too well for me long term although worked well for the actual Essential thrombocythemia (ET) so last year I was put back on Hydroxy which works well again at a far lower dose than before - so treatment can vary being adjusted and tweaked over time - when and if you need treatment the team can discuss what’s best for you, it’s usual to be checked ea h 12 weeks ongoing. Let us know how you get on and any other questions you have, all the best
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Hello @HelRol
Welcome to the club….one that no one really wants to be part off.
I was diagnosed last year and currently on aspirin. Due to see a consultant again in the next couple of months. I know next year he wants me to go on hydra but I’m not happy about that so will be discussing my opinions.
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