I have just been diagnosed with myleofibrosis and was told that 15 years ago when I had a clot removed from my neck was probably due to Essential Thrombocythaemia ('ET') because on my notes at the time says thick blood give asprin and that was it..so watch and wait happened only no one was watching.
I recently moved and my new GP was concerned that I have never been followed up so she did some blood test. Next thing I know I am sitting in an office being told I have Myelofibrosis ('MF' or 'PMF') and JAX2 positive and also Blast positive and now high risk is my score…I am still on just asprin but going back in October for a long chat and how we are going to move forward. I have no symptoms as yet. But I have to say I am just numb at the moment and yes I did Google and wished I hadn’t..
Not sure what I am looking for on here but know I need something.
I’m sorry to read that you have been diagnosed with Myelofibrosis. It will be a shock to have received this news.
I was diagnosed with Myelofibrosis back in 2023 and had a Bone Marrow Transplant thanks to an anonymous donor in April 2025.
On a positive note there are treatment options out there that can definitely help with managing your condition. There’s even one of the forum members @Willow who has being living with Myelofibrosis for nearly 34 years.
I was asked in the day I got my diagnosis whether I wanted to go forward for a potential Bone Marrow Transplant. I and my wife said yes immediately.
The challenge was getting my Blast Count to a level where the Transplant became an option and my Myelofibrosis actually progressed to Acute myeloid leukaemia ('AML').
Eventually about 16 months post diagnosis I got the point where I was admitted for Transplant.
16 months on I’m doing well.
I know it’s tempting to Google. I did too. What’s important is to go to good sources for information
Cancer Research UK and MacMillan are also great sites to check out.
If you wanted to speak to someone the wonderful @BloodCancerUK-SupportTeam are an excellent source of support.
Here is a link to their page with details of how to get in touch
I hope this reply helps. You will find that here on the forum you’re part of a community of people who are really supportive and totally understand the realities of living with blood cancer.
I was diagnosed in 2023 with post Polycythaemia vera ('PV') Myleofibrosis, intermediate risk group 1. I have been treated under a clinical trial which worked for me and I continue on the same medication post trial.
Another couple of resources which I have found useful
Myeloproliferative neoplasms ('MPN') Voice
Leukemia Care - they have an online Myelofibrosis ('MF' or 'PMF') support group which only has a small number of attendees not surprising given the rarity of Myelofibrosis ('MF' or 'PMF').
Hello @Chris.64 and welcome to this forum although you would probably rather not be here. However I trust you will find it a helpful and supportive place where you can share and say honestly how you feel and find others who truly understand.
Just to correct @DuncanB I have lived with an Myeloproliferative neoplasms ('MPN') that originally had features of Myelofibrosis and Essential Thrombocythaemia ('ET') for coming up to 34 years. I was in my early thirties at the time and it was hard to classify my disease, I was told. Obviously a lot more is known about these conditions now and in 2018 I had a further bone marrow biopsy and was told that I no longer had any features of Essential Thrombocythaemia ('ET') and it was 100% Myelofibrosis. I won’t pretend the journey has been easy and the first drug I was given is not generally used these days and was very harsh, causing me long term problems that I am still living with. The treatments are much more targeted now that the genes that have become faulty can be identified. The faulty gene in my case is CALR and not JAK2 like yourself.
I don’t want to bombard you with information but I am happy to share my own patient experience at any time. Obviously I am not a doctor so what I share is just from my personal perspective. What I have learnt is that myelofibrosis is a variable condition and no two patients are going to be exactly the same. Wishing you the best and thinking of you. Willow x
Please don’t worry @DuncanB. The hot weather here down south of the UK is making my brain not function as well as usual!! I guess it’s cooler where you are. Willow x
I can see you have already connected with some of our forum members with the same diagnosis who have offered great advice and support.
Thank goodness for your new GP. At least now you are being monitored. However, that must have been a real shock.
Haven’t we all googled when we know it’s not a good idea. You just want to find out as much as you can but sometimes what you read can be scary,
Make sure you write down any questions you have for you next appointment. It really helps to focus at the appointment and come out with all the information you need.
Please take good care of yourself. It’s early days. I remember that numb feeling following diagnosis and I was up and down for quite a while X
