Newly diagnosed with ET

Recent diagnosis
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Hello, my name is Trish and I have just been diagnosed with Essential thrombocythemia ('ET'). I have had high blood platelets for at least two years but was only referred to a haematologist last year. Although I waited 8 months for an appointment, following genetic tests my Essential thrombocythemia ('ET') has now been confirmed and I am now in the system. I’ve been taking low dose aspirin for about 6 weeks. Prior to taking it, I’d been experiencing extreme burning pains in the soles of my feet, to the extent that it was painful to walk around the house in bare feet or socks, and the pain would wake me in the night. Within a few hours of starting the aspirin, the pain disappeared like magic, which has been a huge relief! I will shortly be starting hydroxycarbamide and would appreciate insights from other people in the forum who take it. There seems to be a very long list of potential side effects although I know these can vary from person to person- but I do feel quite nervous about it. I am 71 and my latest platelet count was 620. I think my age puts me in the high risk category although I do have a healthy diet and lifestyle.To date I haven’t had any thrombosis issues. I suffer from fatigue, especially when walking but find using the bikes and other equipment in the gym (3 to 4 times a week) lets me exercise without getting too exhausted. The diagnosis wasn’t a big surprise to me, I’d done a lot of research (I was a librarian!) but nevertheless I do feel a bit scared by all this. One strange thing is that my brother died age 22 from chronic myeloid leukaemia- clearly there’s no actual link between my condition and his but just on a personal level it feels strange that 2 siblings should have diseases involving MPNs . Anyway, any advice or comments would be most welcome!

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Hello @PatriciaBetsy

Thank you for taking time to send in your post, and welcome to the forum.

Im sorry to learn about your diagnosis.

I’m sure receiving the diagnosis was scary, I know when i got my Chronic lymphocytic leukaemia ('CLL') diagnosis I was very scared and confused and lots of other emotions, and I’m confident you have lots of questions

It goes without saying, your medical experts are the first and best point of contact all be it we have trained nurses on the forum and on the phone who are able to communicate with you and provide medical sound information. I am the other forum support volunteers cannot give you medical advice.

I’m also confident you will find others on the forum in not dissimilar circumstance who will communicate with you.

You may find the link Newly diagnosed with ET - #8 by Modesigns and Essential Thrombocythemia good places of information where others have posted their comments and experiences to date.

If you prefer, please remember, you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.

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Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.

I do hop you let us know how things go

Kind regards

Mike

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