Hi All ... I was diagnosed with ET, late last year ... my bone marrow over produces Platelets due to me having the JAK2 genetic mutation. I started Hydroxycarbamide treatment at the beginning of January, and after a month, platelet count has reduced ... So going forward, will be tested on a regular basis to determine the optimum dose. So far, touch wood, no side effects from the meds. I am still rowing, cycling and walking with the emphasis on "take it easy!!!" ... I start slowly, and when I have warmed up, I back-off a bit, and I have my pace …
Hi againAJP57 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.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
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….. 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.
