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Hi, I was diagnosed with ET Jak2 just over a year ago, now looks like I have PV too. My main concern is the extreme fatigue. I never feel refreshed even after a good nights sleep and some days it is so debilitating. I’m having to stop driving some days...
firstly a bit of background. I have ET (Jak2+) and in February 2025 I was started on fortnight Besremi injections. in April I started a new part time job which stated some travel into London would be required to support volunteer led community sessions...
I’ve had a recent diagnosis. Are there others here who also have had this diagnosed? I’m struggling with life and am looking to see if anyone else can help?
Hi Everyone! hoping you’re all well and managing to cope with these horrible and hard days. I was recently (June 2025) diagnosed with Indolent Systemic Mastocytosis (ISM) after loads of test, including bone marrow biopsy! I am due to start the new...
Hi, and looking for help. Was Dx hormone receptor breast cancer, 5.5cm tumour Grade 3, in July. Right breast. Micromets in 1 node. Was prescribed Anastrazoke. Which worked. Cancer A SMX on 22/9, and histology on 7/10. Turns out only 70% of Cancer...
I am presently on Ruxolitinib and after a haematology appointment I have been asked to consider moving on to Momelotinib. Has anyone on here using it and can give any advice on it. Sorry not been on this forum for a while as I have had other health issues...
I was diagnosed with MDS in May 2025. Have been told no treatment yet as blood levels staying up. I attend Belfast hospital. I completed treatment for AML last year. I am well at the minute. Anyone in a similar situation. I find not getting treatment...
I was recently diagnosed with primary myelofibrosis after a positive Jak 2 test at GP surgery led to referral to haematology and bone marrow biopsy. I’ve just started hydroxycarbamide and the specialist will monitor my blood to check if it is helping...
Hi everyone I’m new to the group so I’m sorry if I’m posting this in the wrong place. My GP thinks I might have Thrombocytosis (he did mention Essential Thrombocytosis at one point). I’ve got a Clinical Haematology hospital appointment in November....
As someone who has been 'fobbed off' by GP's in the past only to go on to have a couple of major surgeries - not MPN related - I am very particular about asking questions at consultations with my haematologist. I thought one of the four 'gold standards...
