Essential Thrombocythaemia: Hi, I have just... - Leukaemia CARE

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Essential Thrombocythaemia

Snowking profile image
4 Replies

Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET

The courses of treatment offered to me are Hydroxycarbamide and Pegasys. I would like to ask if anyone else has the same condition and if they are taking one of the mentioned drugs and if so how do you find taking it and what if any reactions do you have from taking it.

Many thanks.

4 Replies
LightOfErendil profile image

hi there. Yes, I have ET. I’m sorry you’ve had that diagnosis- a bit of a shock isn’t it? I was diagnosed in 2019 (I’m 64) and have been on hydroxycarbamide since then. I take it with my evening meal. Initially I got small mouth ulcers but after a few months that stopped. For a while I was getting spells of diarrhoea from the drug but I have meds for that. I do have terrible fatigue but nobody knows whether that’s from the disease or the drug or a bit of both. My platelets got to normal in about 6 months taking the meds. I’m also on daily aspirin.

A warning - be really careful about being in the sun a lot. I got a terrible weird rash which was linked to the condition.

But everyone is different so you might not get anything at all. The main thing is to do what works for you in terms of resting etc. It takes a while to come to terms with it all and I find it so frustrating that I can’t do what I used to be able to do.

Good luck!

Snowking profile image
Snowking in reply to LightOfErendil

Thank you so much for your reply i'm sorry to hear you have ET, your comments have helped me to understand a little more about the drug and it's good to hear you're able to get on with your life without much problems, i wish you the very best going forward.

2003UK profile image

Hi , a warm welcome to the site, the site I bet you wished that you didn't have to be part of, I have a different blood cancer but I bet that I share your feelings of shock and disbelief at our diagnosis.

What I would say is that you are likely to be in shock so be very kind to yourself and give yourself time. Please do use Leukaemia Care's support line and services.

Also a handy hint to write everything down like your symptoms, medications, medical history and also any questions you want answers too. No question is silly, and medical people often talk a medical language so do ask for clarification if you need to.

Look after yourself, I was diagnosed with a different blood cancer and I am still here 18 yrs on and life is good.

Snowking profile image
Snowking in reply to 2003UK

Thanks for your words of advice and I'm so pleased to hear your doing so well. My condition has just come out of the blue and I'm still trying to come to terms with it but I'm not worried and I'm sure the specialist know what they're doing so i have to trust them, i just don't like the thought of the side effects the medication can give. I was given the option of two treatments a tablet or injection after reading up on both i think the tablets would be better for me.

Best wishes

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