Hello. Has anybody else signed up for the Walk of Light for Blood Cancer UK on 25 March? My goal is to do 25k by the 25 March. I’m not sure how other ET folk cope with the fatigue (I know some don’t struggle as much as others), but I can’t manage a lot...
I was called up for just a routine health check by my GP surgery for my 50th Birthday. Oh what a Birthday present I got.....I had a para protein in my blood so was sent for further blood tests. I then had a phone call to see a haematologist in my local...
Hello so I was diagnosed with Essential thrombocythemia in roughly around 2017. I was 21 years old then. I started with having just aspirin for about 2 year then I went onto hydroxycarbamide for the rest of the time. I stopped taking that in September...
Two years my watch and wait is over. Today the results from second BMB. Persistent fibrosis with additional mutant genes, doc said there are many still to be discovered, plus badly misshapen platelets. Red blood cells too low,. Ruxolitinib is being...
Hi Wife signed us up to the gym Just wondering if weights etc are ok .not to go mad but just to keep in shape .Trying to get an answer out of a consultant ,registrar is nigh on impossible. Was diagnosed with PV in 2021 have interferon 1weekly .Just seeing...
Hi, I have just been diagnosed with MPN and had a bone marrow biopsy three days ago to find out whether it is ET or PV. Just coming to terms with diagnosis. Am currently taking aspirin and very grateful for the NHS who acted quickly from the initial blood...
Hello, I’m new here and I’ve just received this diagnosis. It was only discovered following a private health check where my haemoglobin was 241 - range should be 115-155, I’m told and my haematocrit was .75 - ideal number is .5. Fast forward to an emergency...
I was diagnosed with MDS out of the blue 3 months ago after a blood test, two days later I was admitted to hospital for emergency blood transfusion, I am 72 yrs old, fit and enjoyed a good social life and enjoyed my travelling. Weekly injections have...
Hi there I’m hoping someone can offer a bit of advice my 25 year old has just got a jak2 positive result and been diagnosed with ET doctors are saying it’s very rare in his age group so much stuff online my main question is what are the long term complications...
Hi glyndale Only saw your post in Ask a Nurse now , apologies. I am in a similar situation. I have had ET for 13 years (believe it!) and recently had a BM biopsy which has placed me with low intermediate MF (as of October 2022). The story of my medical...
