Now in 5th year of treatment for Essential thrombocythemia - medication is hydroxicarbamide. Would be interested to learn how people are finding this condition is developing over a period of years & what physiological effects are noticeable . In my...
I was diagnosed with ICUS about three years ago. I know I am lucky to not have been diagnosed with MDS or leukemia yet, but I feel like it's in my future. Has anyone had a similar experience and if so, how long did it take for it to progress? Thanks!
Hi there. I was diagnosed with ET in 2019 but for some reason I’m just joining this group now. My bloods have been fairly stable since 2020 (my 3 monthly consultation is on Tuesday so fingers crossed for me), and I’ve had a variety of symptoms that have...
Hi, It’s been a while since I posted about a possible PV diagnosis and got some really helpful replies here. It’s all quite a mystery as I don’t have a JAK2 mutation but my bone marrow biopsy was positive and I have undetectable EPO so apparently satisfy...
Hello everyone Today is my first day on the forum, I have recently been diagnosed with Myelofybrosis, I have just started treatment today to help with symptoms, unfortunately there is no cure so it’s taking me some time to process and come to terms with...
Is anyone aware of side effects from Retacrit subcutaneous injections, I’m just three weeks into treatment and looking for phased return to work following myloe dysplasia diagnosis. I’m sleeping badly but the shock of the diagnosis is still making life...
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 ...
Hi everyone, I've not posted for a while, some people (a select couple) know why. However I have just been informed that Dave Myers of the hairy bikers has lost his fight against cancer. I first met him on one of my bucket list must dos in Belfast when...
Hi everyone, We’ve launched our annual survey for 2024! We want to hear what you think about the Online Community. The survey should take around 15 minutes to complete. The survey is anonymous. Please complete our survey here. This survey is designed...
I have had ET for 21 years now and I wondered if there was any body else, who has had it for so long? I have been on Hydroxocarbamide all the time I have had the diagnosis, and suddenly my platelets have shot up to 900, the Heamotology Department has...
