Hello ChrisAnnSen,

A very welcome to our forum and sorry to hear you have just been diagnosed with essential thrombocythaemia. We have some information on ET on our website which you can read here and I hope it will be useful to you. You are so right though - these medical terms are not only difficult to spell but a real mouthful to pronounce :D .

You have joined the right forum though and as it happens, we have another active thread on ET started by [@AndrewF]‍ - you can read it here and feel free to respond if you wish. There are many other members on that thread who mention taking hydroxycarbamide like for example [@forwardocho]‍ or [@Imaged69]‍. 

I hope you will get to talk to others here who are, as you say, in the same boat as you as it helps to share stories and experiences.

Best wishes,

Lucie, Cancer Chat Moderator

Thanks for the info - I will look at those links carefully.

I looked for a way to be informed if anyone responded to my post and couldn't find it - but obviously it is automatic - what an excellent idea.

Thanks so much for your welcome.

This is an ancient thread underlining the fact that I have had ET since January 2017. I can happily confirmthat it has made very little difference to my way of life.

I'm still taking 75g aspirin daily although I do ensure that it is the gastro-resistant ones not the soluble ones prescribed by the GP - so I buy them over the counter at Boots, but they are very cheap so not a problem. I'm also currently taking 12 x 500mg hydroxycarbamide (also known as hydroxy-hydrea) per week with no real side-effects except that my platelets have come down to the acceptable level.  I do ensure that during the summer I wear factor 50 whenever out in the sun and also long or ¾-sleeved tops and long trousers (simply, to save having to slather the suncream everywhere).

There is another website which is purely for people who have an MPN (myeloproliferative neoplasm) ie ET, PV or MF.  Confused? You will find all the information you need at http://www.mpnvoice.org.uk and its associated forum at  https://healthunlocked.com/  - MPN Voice Community. 

With our rare form of cancer it is good to have as much contact with fellow ET'ers as possible which helps to remove the feeling of isolation.

Just wanted to say "hello".  I don't know anything about ET and one of the benefits of this website (for me, not the people who are diagnosed) is that I learn so much - not only about the illnesses but also about the amazing people who post here.    Thank you for being part of this.  Annie

Ive recently been diagnosed with ET and ive been on  hydroxycarbamide, anyone else on these capsuls?  Been on them since January 2019.