My Husband has Mylofibrosis. He has had the cancer for a number of years. He is now at the stage where his haemoglobin is very low and has to have blood transfusions every 2 weeks. For the last 2-3 months he has trouble eating normally and has lost alot...
Hi All, My mother was diagnosed with Plasmacytoma 3 years ago, which in turn has brought on Poems syndrome. She takes Lenalidomide and is on a 3 week on / 1 week off cycle. During her 'rest' week she experiences awful side effects - nausea, peripheral...
Hi everyone I think I have PV. A high red cell count was noted when I had a thyroid procedure about 4 years ago and suggested "keep an eye on it". It has recurred ever since when ever I've had a full blood count. I finally insisted last year that I...
I was diagnosed with Essential thrombocythaemia via genetic testing in August last year and since then have been trying to get a handle on my symptoms from both ET and the ME I've been diagnosed with since covid. I'm absolutely exhausted all the time...
Hi everyone, Throughout 2023 I noticed some changes to my health and I was diagnosed with Polycythaemia vera (PV) last November after having a TIA the previous month. On Hydroxycarbamide daily and other tablets for high blood pressure. Having a few issues...
Hi all I’ve just been diagnosed by GP with polycythemia and sent urgent referral to haematology at royal Liverpool hospital. It’s been a whirlwind week since being told and was just wondering if anyone can chat about their first appointment and to give...
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, 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...
