I’ve just been told I have ET and a enlarged spleen. It looks as though I may have had it since 2019. is that why I feel so unwell? I’m completely exhausted constantly but don’t see the doc until end of January
my daughter has recently been diagnosed with ET and JAK2 mutation at 20yrs. it seems this is very rare at her age and as her mum I really do want to understand more. if anyone has any advice I would be most grateful. we are awaiting bone marrow biopsy...
Hello, I was diagnosed with Myelofibrosis a year ago after having had Polycethemia for 26years and taking Hydroxycarbamide to keep it under control which enabled me to lead a normal life enjoying long distance walking. Then in Feb 2019 I developed severe...
is anyone on the watch and wait approach ,and how long for thanks
I was diagnosed in 2019 with ET. Once the platelets got down to reasonable numbers things were ok until last year I noticed them rising again, slowly, and then in 3 months they took a significant spike (up 100). I'm now getting 6 weekly bloods and the...
Hello, I am supporting my dad who is 73 and recently diagnosed with MF through what has already been a long journey and looking for information/ advice about next steps. He is a complicated and inspirational case having gone through various different...
Hi, I’m a 52 year old man with successfully treated high grade bladder cancer and now the beginnings of prostate cancer (which doesn’t yet need treatment). I’ve been feeling really exhausted recently which is unlike me as I am very active - run marathons...
Hi all, Just wondering if there’s any others here with experience of MDS/MPN Overlap Syndromes. i was first seen for this condition at the start of the pandemic, however, as it is so rare it took 3 bone marrow biopsies to get a diagnosis. My biggest...
My husband has MDS AND P53 cromozone We were given the devastating news this Thursday the transplant has not worked and there is nothing else they can do does anyone know of any trials we could sign upto if anyone can help please let me know
Hydroxycarbamide causing Peeling skin, body and legs. Lots of flecks everyday. Having to vacuum the bed every day and flecks get everywhere and cover other clothes and carpets. Is this usual? I have not used this site before so I hope I'm in the right...
