I am newly diagnosed with ET. Just taking aspirin until my first appointment in a month at MPN clinic, having seen haematologist twice and had numerous blood tests to confirm diagnosis. I am asymptomatic and otherwise very healthy, but in my early 60s. Cholesterol a little high, but not of concern as balance with good cholesterol ok. The specialist nurse said that I would probably be prescribed Hydroxycarbamide as I was in the higher risk group. I am concerned about the very small risk of this drug, in prolonged use, raising the chance of developing acute myeloid leukaemia and the nurse mentioned interferon. It would be good to hear from the horses mouth about experiences with either of these drugs.
thanks all!
Hi Flip and welcome to this corner of the Community……. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Group Title’ and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.
Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with ET in it so worth checking.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
