Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024.
It all started when I began to feel lethargic and very tired, I had no inspiration to do anything.
I was a taxi driver and was only managing to work one or two days a week.
My wife prompted me to go to my local GP to get checked over and maybe get help with what we thought was depression.
After bloods were taken and a quick examination I was later told I was anaemic, I also had a hardened prostrate.
I was referred to a urologist at my local hospital who after examining me, said she felt a palpable mass in my stomach, which I now know was my enlarged spleen (a classic sign of having MF)
The urologist organised for me to have scans, from which I was referred to haematology.
By this time I was very lethargic and breathless and sometimes falling down on the spot because my legs wouldn't keep me up.
After giving many different blood samples at haematology I was told my haemoglobin was at 66 which apparently is very low. I needed an immediate blood transfusion.
On my next consultation with the haemotologist and further blood tests, I was told that I had Myelofibrosis, a rare form of bone marrow cancer. He said it was terminal but treatable. My lights were knocked in of course, I wasn't expecting anything of the sort.
I was prescribed ruxolitinib (Jakafi) to try and get my spleen down. It was huge, stretching across my stomach. I had put the swollen gut down to having IBS. I also know now that I've had the swollen stomach for at least a year before I was diagnosed, always putting it down to IBS.
From this point on I was receiving a blood transfusion every week, with my haemoglobin level hovering between 70 and 80.
After six months of transfusions every week, I began to think I was becoming transfusion dependent.. which isn't really a good sign.
The ruxolitinib wasn't working and my spleen was getting larger.
I was then (miraculously) put onto a team of haemotologists at a top hospital in my area. I'll not mention the hospitals or doctors names, I'm not sure where I stand on that.
Cutting a very long story short, I was put forward for a stem cell transplant and was waiting a good match from doners around the world. The doctors and professors assured me they would find a doner from the bank, which gave me lots of hope. It was my only choice being given one to two years, even months if we don't go ahead. Of course it was a none brainer. I felt privileged they were taking me under their wing at my age.
Sure enough, by February they had found a doner 10/10 match...unbelievable. My own two sons would have only been 50% or slightly more.
A date for the transplant was set... 7th February. In the meantime I would need a week of radiation treatment followed by being admitted into an isolation cubicle on a special transplant ward for an intense chemotherapy course. This would last a week. It knocked me for six. So much so I can't remember the doctors telling me my kidneys were failing and the transplant might have to be postponed. My family told me of all the anguish they were going through, not knowing when and if another doner would be available. I was none of the wiser.
The doctors kept me and my kidneys monitored and just two days before my scheduled transplant date the doctors gave me the good news that my kidneys were on the mend and the transplant is going ahead. (which is basically very much like having a blood transfusion) and only takes a few hours.
After another week or so I was back home which is good going apparently. Two weeks later I was re admitted with the virus
C -diff. I was put into an isolated cubicle as the condition is contagious and my immunity system was nil. While getting treat for C diff and other tests they told my I also had GVHD graft, versus, host, disease. 40 to 50 % of transplant patients can get gvhd.
It started off by attacking my skin, with a red blotchy rash all over my body which then began to peel off, especially the palms of my hands and the soles of my feet. I spent two weeks in quarantine and further re admissions with C diff and other viruses. I was re admitted with C diff again with other viruses and bacteria attacking my gut.
The GVHD is now in my gut and I can't put sny weight on, being 9 and a half stone at the moment.. I'm normally 12 and a half.
Anyways I'm back home at the moment, enjoying every good day that comes along.
Sorry for the rambling
Has any one else with Myelofibrosis suffered a large spleen months before diagnosis?
Where there any symptoms of Myelofibrosis similar to mine before diagnosis? Anyone in a similar situation?
Thanks
Gary
Just wanted to share my Primary Myelofibrosis journey so far…….
All about me and my Myelofibrosis
Recently diagnosed with Primary Myelofibrosis
Vitamin D and immune cells stimulate bone marrow disease (Myelofibrosis)
Jakafi - Chronic Myelofibrosis
