Just been diagnosed with Essential thrombocythemia (ET), my consultant seemed very positive as my platelets are only slightly above normal, don’t want to worry family and friends at this stage so hope I can confide in this forum, just on aspirin at the moment with the possibility of being put on hydroxycarbamide, does anyone take this? Any side effects?
2 Likes
Good evening @Julie52, and welcome to the club that 1) you probably didn’t know existed and, 2) that you almost certainly had no desire to become a member of!
I am (now) a 60 y/o male who was diagnosed with Essential thrombocythemia (ET) back in 2018, following on from my (to date!) 1st heart attack 6 months earlier.
I am on a variety of medications for my heart, including aspirin, and also on Hydroxycarbamide capsules, currently 3 per week, as well as a Besremi injection every 4 weeks.
Other forum members will agree that we are all different and the effects, and side effects, will have differing impacts on our lives.
I “suffer” with fatigue a great deal, but how much of that is down to the Essential thrombocythemia (ET), the treatment I am on for that, my heart medication or simply my (according to my lovely daughters!) “incredibly advanced age”, who can tell. I do know that my comorbidities don’t help the situation, especially with the damage that my heart attack caused, destroying approximately 20% of my heart, according to my cardiologist.
The best advice I can offer is to take each day as it comes, only Google reputable sites, such as this one, along with the NHS, Macmillan and Rarecan.
Any questions that you think of, write down for when you see/speak to your consultant and, if possible, have someone with you when you are at your appointments to either write down or remember the answers given.
As always, take care, stay safe, be kind to yourself and keep in smiling.
Best wishes,
Jimbo165
2 Likes
Good morning @Julie52
Welcome to the forum, and thank you for taking time to place your post.
I’m sorry to learn about your circumstance, but it sounds like you are being well cared for by your GP / medical experts. I cannot relate directly to your circumstance as I have a different condition my self, but I can relate to not wanting to worry family or friends, as my diagnoses was only towards late April this year and I did struggle a little, wondering who to tell forst and how to do it. My experience has been that family and friends wanted to hear all about things and they have formed an amazing element of my larger support structure. Beyond that, and as you elude to in your post, this forum is a great pace to confide with others, some of whom have not dissimilar circumstance and can share their experiences to date with you, much like @Jimbo165 has.
You may find the post in the forum - Newly diagnosed with ET - General chat - Blood Cancer UK Online Community Forum - a good place to visit as again there are people who have the same condition and have recently been diagnosed with Essential thrombocythemia (ET).
Beyond the above don’t forget you can speak confidentially with our support services team for information and support on 0808 2080 888
Do take good care of yourself and do feel free to post in the forum at any time, it would be lovely to hear how you are getting on.
Kind regards
Mike.
3 Likes
Thanks for that Jimbo165, have to say it was a bit of a shock, but having read more about it I don’t feel quite as worried, thanks for your kind words it’s good to know you don’t have to go it alone 
2 Likes
Thanks Mike I’m feeling much more positive having read the posts on this forum, still can’t believe it as I’m feeling fine, so grateful for my GP and Consultant persisting with blood tests, dread to think what would have happened had it gone undiagnosed!
3 Likes
Hi my name is Colin and been living with this condition for 7 years now , taking Hydroxicarbomide and have no real side effects so far .
1 Like
Hi Colin that’s good to know thanks 
1 Like