New to the group today with this rare type of cancer diagnosed since last October. I've been on hrdroxycarbomide since then with double dose for three out of seven days. Feeling fatigue and starting to get pins and needles in hands and feet, which...
Hello everyone. I was diagnosed with polycythemia Vera 11 years ago. Fortunately I had 9 years where it had very little impact on my daily life. 2 years ago the symptoms worsened, the itchy skin was there alot and was unbearable. Was on hydroxyurea, a...
Hi everyone, I’m new to the group and wanted to introduce myself. I'm Marcus and I was diagnosed with Polycythaemia Vera when I was around 16–17 years old, back in 1989. Over those early years I had numerous treatments, including radioactive phosphorus...
Good evening, I was diagnosed with ET 3 years ago and since then just been taking a asprin a day but my platelet level has risen every month and now my hematologist wants me to start doing weekly injections. Is anyone else taking these and what should...
Hi i’m new to this diagnosis in December 25 started on Hydroxycarbamide 500mg! I dont know what to say I just feel a little lost
Hi Fate has decided that I should get a dose of Myelofibrosis, came as a bit of a shock but hey ho. I'm post transplant (1year) If there is anyone who is awaiting treatment,I'd be happy to shatmre my experience,tell you what you mightneed,what will...
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...
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...
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...
