Hi,
I got diagnosed with MF in April 2024,I’ve had a transplant and have recovered without too much trouble.
If anyone here has been recently diagnosed,I’d be happy to share my experience and tell you things that that the hospital dont to prepare you for your journey. Obviously your journey will be different but there are things that are generic.
Stay strong.
Hi @Landys3 and welcome to the forum.
I too was diagnosed with Myelofibrosis in October 2023.
Had a transplant April 2025. First 4 months post transplant tough.
Now doing well at this point
Still take things a day at a time and so grateful a donor was found for me.
Lost both my older siblings to other cancers in 2005 and 2016 so really grateful to have a second chance at life
Hi @Landys3, thank you for offering to help others facing a transplant. I was diagnosed with Myelofibrosis in April 2024, 12 years after my Polycythemia diagnosis. Ruxolitinib has reduced my spleen size and my blood levels are good. So an appointment to discuss a stem cell transplant was a bit unexpected. I’m struggling to get my head round making a decision if I should go ahead now. How did you make your decision to go ahead with your transplant?
Hello there @Parkiec, just wanted to welcome you to the forum. I’m glad you’ve found others here living with Myelofibrosis (‘MF’), I’m sure you’ll receive helpful responses.
I live with Polycythaemia vera ('PV') and am aware it can progress to MF and even Acute myeloid leukaemia ('AML'), so thank you for joining the forum as it’s already helping me—I’m so pleased to know you lived with Polycythaemia vera ('PV') for so long, that is my hope. If you have any tips you’d like to share, I’m all ears!
I’ll add the Blood Cancer UK information about MF here in case you haven’t seen it: Myelofibrosis (MF) | Blood Cancer UK
Perhaps you might like to find others around the forum sharing their experiences of stem cell transplants? You can look using the search box at the top or Related Topics below. Here’s a thread full of people with varied experiences: Awaiting or considering or had a stem cell transplant, a place to share here
Do please let us know how you get on @Parkiec.
Hi @Parkiec
Sounds like you might be on a similar path to me as issues with Spleen.
I was diagnosed with Myelofibrosis in October 2023.
Against all the odds I had a Bone Marrow Transplant in April 2025 and currently doing well.
I know you specifically asked @Landys3 for their thoughts around the decision to go ahead or not and hope you don’t mind me adding my decision making.
Factors I took into account:
When I went for what was known as the gloom and doom chat and was told everything that could go wrong over a 90 minute period I was exhausted at the end of it.
One thing the Consultant said at the end of that chat was that it’s the toughest thing you can go through that wasn’t surgical.
The Transplant itself was as tough as I expected and a bit more.
Recovery very challenging too.
Slowly but surely I got better walking more and more each day. 11 months post transplant I’m back walking similar steps to what I was doing pre transplant.
I’m also exercising each morning.
I’ve had moments in the early stages post discharge when I wondered if I would get back to walking any distance again.
Resilience and mindset is hugely important and I believe that helped me a lot.
Hope that helps you with your decision making and gives you some honest insight
Hi Parkiec,
Good news about your spleen,not so much about the STC.
I was having weekly blood transfusions and my consultant told me that they could carry on with that but my health would deteriorate or have a STC and have a better quality of life.To me this was a no brainer.
Hope this helps,any other questions, feel free to ask.
Good luck and stay strong.
Hi Duncan,
So glad it’s worked well for you and you are getting back to where you were. Of course I don’t mind you sharing your thoughts. All support gratefully received.
I had the 90 minute chat a week ago and it was tough to hear and certainly gave me lots to think about and discuss with my husband.
I have my next appointment at the end of April to find out if they have found a donor and any clinical trials I might be suitable for.
Thank you for your honesty, really appreciate it.
Hi @Duncan
With regards to what worked for me living with Polycythaemia vera ('PV'). I make sure I am always hydrated, drinking plenty of water and always carrying some with me. I take my 75mg aspirin every morning after breakfast. I haven’t cracked the fatigue but I watch for the signs and slow down, 8 hours sleep an essential. I was also super strict in booking blood tests and venesections. Happy to answer any questions about my experience.
I fortunately had my wife note taking during the chat @Parkiec and that certainly helped as she pretty much captured everything that was said.
She wrote so much that she had to get another pen out part way through as first one ran out of ink.
My chat happened January 2024 and shortly after my blast count increased so I was told it had progressed to Acute myeloid leukaemia ('AML').
Rather than going for a potential transplant in March 2024 I was in hospitalhaving intensive chemotherapy for 6 weeks which didn’t have an impact.
When called back to Transplant centre at end of 2024 I was sure that they were going to explain why it wasn’t possible.
After listening to me and how I was coping the Lead Consultant said I’d like to recommend you for Transplant.
We all knew it was last throw of the dice.
I then had a long 3 and a half months where I had to keep healthy and hope my Bone Marrow Biopsy results didn’t change.
The Transplant itself is just like a blood transfusion. It’s the chemotherapy leading up to Transplant day that flattens you.