still not sure if et is progressing to mf, bloods ok apart from slightly low hb,but its been up and down for 3 years ,so going for a repeat bmb,and take it from there.
Hi all, I’m new here just seeking a bit of support and advice. I’ll give you a brief summary my dad was diagnosed with CMML (leukaemia) in late 2018 with the AXL gene. He had a successful bone marrow transplant in 2019 along with 7 months of chemotherapy...
Hi, Today I was told by the consultant that my many blood tests have revealed I have MPN, probable MF but awaiting bone marrow biopsy to confirm. I feel so lost and confused. I have been suffering daily headaches and swollen lymph node in my neck...
Hi, I was recently diagnosed with secondary MF (Myelofibrosis) after a bone marrow biopsy. It was thought I had ET at first due to my platelet levels, but turns out its MF. My diagnosis was a long, hard and painful process. At the age of 13...
Hello has anyone had bad pain and how was it dealt with? I have been on morphine as the pain is so bad but does radiation therapy help?
I was told today that there’s a possibility that I have ET. To rule it out they’re doing more bloods tests that are going to take 2 months to get the results. Then they may have to do a bone marrow biopsy to rule it out. How do you cope with the stress...
I was diagnosed with MDS on 9/6/22 and it has knocked me for six i suffer with fibromyalgia thyroid and other things tiredness had been put down to those unfortunately I am unable to get cured from this and have been told it’s treatable not curable...
Hello to other pvs Was diagnosed with pv at end of March, so am new to the world of MPN. Have had weekly venesections as well as being on hydroxycarbamide. My levels are now down and haven't had to h ave a venesection for 12 weeks now. Fortunately...
Hi guys just joined the support group. I have polycythemia for 18 years. It’s only now that I can see it’s classified as a cancer. Would love to chat with others to share experiences i have severe side effects which have developed over the years. I...
Hello my husband has just been diagnosed with ET Calr type 1. He is 35 fit and healthy. He had just went in for a blood test and his platelets were high so got referred to Haematology. They advised he is low risk so doesn’t need to take Aspirin but we...
