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Hi I was diagnosed with ET two weeks before my husband sadly passed away from lung cancer. And to be honest I’m not dealing very well with the ET thing. Does anyone know if ET can flare up as I’ve been really bad over the past few week and aren’t due...
Hi ... I have ET and the JAK2 mutation ... I have been going thru past threads and have picked up that fatigue and joint/bone pain are common side effects ... does anyone know if these from the ET, from the medication or both?
Hi ,was diagnoised with E.T from 2014 now aged 60 , platelets just keep getting higher at all times well ove 1210 am on asprin as at moment refusing treatment,as in the long run there is no cure,had bone marrow biopcy and there is scarring ...Consultant...
Hi, I am new to the community. I’ve been diagnosed with chromosome 5q deletion MDS with thrombocytopenia. I was happy to be told I am low risk with a good prognosis. I am aware that the deletion of a leg of chromosome 5 affects 40 genes and 150 million...
Hi I have ET (with CALR) mutation (November 2022) and following a bone marrow biopsy (January 2024) advised I had very early stages myelofibrosis. Due to early stages, being treated for ET with aspirin and hydroxycarbamide. My Haematologist informed...
I am 69. In Spring 2023, after a new tumour showed up on my back, under my right shoulder blade, I went to see my GP who sent me for various scans and XRs. Same time I complained about new back pains that started in pandemic, pains in legs, odd difficulty...
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 I'm new to this forum. I'm 65 and diagnosed with Myelofibrosis. I've been on Ruxolitinip. The only way forward for me is a bone marrow stem cell transplant and I'm very lucky that a very close donor match has been found After several delays, I am...
Hi there I’m reaching out to people with myleofibrosis. I was diagnosed with Mf 4 years ago and am taking Ruxolitinib. I am 67 years old. I would like to be in touch with others so I can share experiences. Best wishes Catherine
