Hello! I am 37 and have had PV for 11 years along with Budd-chiari syndrome. I recently got diagnosed with a small bowel neuroendocrine tumour too. I am currently in dabigitran 150mg a day, aspirin 75, peg interferon once a week and recently started ruxolitinib...
Hi, I would like to share with everyone the journey my Mother and myself have been through over the last 16yrs. It started on Christmas day 2008 when I decided to take my dog (Bayley) for a walk along with my partner prior to tucking into our Christmas...
Hi Everyone My condition has progressed from a Sweets Syndrome diagnosis in November last, to suspected Myelodysplasia diagnosis in February, and now I have my care transferred to the main cancer centre in Belfast. Seemingly the Sweets/MDS is quite...
Hi all, I’ve been reading some of the posts for support and I thought I would post. I saw haematologist yesterday and had further bloods done, waiting for Jak2 Exon 12, CALR, MPL screening for 6 weeks? following a consistently raised Red blood cell...
Hi all, My mum was diagnosed with myelofibrosis several years ago now, after it progressed from polycythemia rubra vera. Her condition has gradually worsened, and in late summer last year (2024) the medication she was on (ruxolitinib) stopped working...
My husband had myelodysplastic syndrome from age 59 and kept pretty well until December 2023 age 72, when he became very unwell with overwhelming fatigue, loss of strength and mobility, night sweats. He was finally given a bone marrow biopsy in June 2024...
Hi, I have been treated for the past year with venesections (every 2 - 4 weeks) and aspirin but my haemoglobin/haematocrit just won't come down. I have headaches, fatigue and drenching night sweats (every night having to change the sheets) as well as...
Hi Everyone just joined this group today I’ve been living with ET since I was diagnosed in 1999 I have become more anxious about it during Covid since only have telephone consultations with Haematology now instead of face to face. My main symptoms are...
Following on from my earlier post I'm still awaiting a Haematology appointment and results of Jak2 and erythropoetin blood test, over a week now! Two questions Is it normal to be on an ordinary referral to Haematology for Polycythaemia Vera or should...
Hi, I've just joined the community and would like to introduce myself. I was diagnosed with myelofibrosis in 2021. I had donated blood since I was 18 but in my 50's I started getting rejected because my haemoglobin was low. A blood test showed that...
