Recent diagnosis of MF

I am 66 just about to retire and I suddenly got a diagnosis of Myelofibrosis from a random blood test and then confirmed by a marrow biopsy.

I am very fit and lived a very healthy lifestyle so of course was shocked and disappointed.

In fact I have been very self pitying (in tears a lot of the time) and it was very emotional telling my wife and also work place.

I swing to realising I am lucky not to have had this while I was younger with my career and young children to feeling anger, self pitying and disappointment.

I still sometimes can’t believe how my life can change in literally 2 weeks.

However I want to be positive and see it as another challenge maybe helping the rest of the cancer community ( I have been a teacher helping SEN children)

Even though I was a teacher I am going to try and continue to be a part time teaching assistant also I want to continue travelling, exercise and Andean/Art but all depends on my energy levels.

Life has change drastically but I intend to grasp my new life and remain positive :grin:

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Hello @Joncorry and a warm welcome to this really supportive forum.

I was sorry to read about your diagnosis. It must have come as a shock.

Like you I was diagnosed with Myelofibrosis out of the blue in October 2023 aged 59.

I went along to see my GP to ask about my belly button sitting a bit funny.

GP said never mind about belly button, what’s going on with your side.

Blood test call back that evening from GP to say Haematology Team thought it was Myelofibrosis.

More Blood tests and Bone Marrow Biopsy a few days later. Confirmed diagnosis 2 weeks later and started inpatient treatment 6 days later.

Several different chemotherapy regimes some low intensity and some high intensity.

Actually a combination of Venetoclax and Azacitidine that got me to the point where I was offered a Stem Cell Transplant.

Had Transplant in April 2025 thanks to an anonymous donor. Now 17 months post transplant and doing well at present.

Another forum member with Myelofibrosis diagnosis @SCcoop also had a Transplant in June 2026.

There are others on the forum living with Myelofibrosis for many years including @Willow who was first diagnosed over 30 years ago.

Hopefully there’s a clear plan going forward and do feel free to ask questions. None of us can offer medical advice but can share experiences.

Hope that helps and take care

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Thanks for the reply and advice Duncan.

My shock and self pitying did turn to rage but now I want to be proactive and adapt.

Might even join some support groups or do some cancer fundraising

It’s certainly a weird club to suddenly be in!

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No problem @Joncorry and just know that it’s okay not to be okay with your diagnosis at times. Everyone deals with it differently.

If you have a Maggies Centre near you, they are a great source of support and hold many events some of which are online.

And if you want to talk to someone from the @BloodCancerUK-SupportTeam you can reach out to them by phone or email.

I’ve included a link with all the details below

Take care and do keep us posted on how things are going

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Hello there @Joncorry, welcome to the forum from one survivor of Myeloproliferative neoplasms ('MPN') to another. I’m really so glad you found us here, and I see dear @DuncanB has already greeted you with his kindly wisdom—do take Duncan’s advice!

You know, so much of what you’ve shared is spot-on and very familiar to me, having been diagnosed with a closely related type of myeloid blood cancer called Polycythaemia vera ('PV') in 2023. I went from being active and healthy to suddenly needing chemotherapy and phlebotomy, and your description of feeling such strong emotions has been hard for me too.

If I might offer my experience that living with Myeloproliferative neoplasms ('Myeloproliferative neoplasms ('MPN')') can also quickly become rather routine once treatments stabilise things, I hope that gives you a little hope that this difficult phase after diagnosis will likely pass. I find it kind of incredible that my blood cell numbers are all normal and I can function healthily while living with blood cancer, all thanks to taking my daily medicines working as intended! Amazing science :star_struck:

For now, let yourself feel it all I’d say as it’s a lot to take in, to say the least. While you take in this big news and the medical language and information, I’d say let this all sink in and take your time. What could be more emotional than a cancer diagnosis?! I hope you have loved ones with whom you can share how you really feel.

After diagnosis for me it felt a bit like grief for my former self, and like other types of loss it gradually became a bit less raw as time passed and I processed my anger and sadness about it all. Learning more about living with Myeloproliferative neoplasms ('MPN') helped a lot. Finding others on the forum living well with Myeloproliferative neoplasms ('MPN') also gives me a lovely boost to this day, and you’ll soon see there are many of us around the forum with these rare blood disorders. It’s not so lonely when we can reach out to others right here!

I’ll share the great Blood Cancer UK information about Myelofibrosis ('MF' or 'PMF') here for your reference: Myelofibrosis (MF) | Blood Cancer UK

Here is MPNVoice that specialises in Myeloproliferative neoplasms ('MPN'), and they also hold conferences (“patients’ forums”) which may be of interest to you as an educator: https://www.mpnvoice.org.uk

I think you’re wise to play it by ear for now in terms of work as our energy levels can indeed be affected by living with Myeloproliferative neoplasms ('MPN'). Something like 80 % of people with blood cancer unfortunately experience cancer-related fatigue (CRF) so you might find the following useful for finding ways to improve your energy level: Fatigue | Blood Cancer UK and Tiredness (fatigue) and cancer | Macmillan Cancer Support

Dear @DuncanB has shared the contact information for the lovely Blood Cancer UK nurses and I would urge you to give them a free call with any medical queries or for further resources on 0808 2080 888.

Hope that helps a little to get you settled into the forum, please know you are not alone with your diagnosis and any treatments you may be offered, and please do reach out to others here. We’re a friendly bunch, even through the fatigue!

Keep us posted about how you get on please @Joncorry, I’ll keep an eye out for your posts.

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Hi. Same as, I went to work one day and couldn’t climb a ladder, surgery told me to get a blood test, hospital phoned me tgat afternoon and told me to get there sharp style.5 months later I had a Stem cell transplant, discharged just as I hit retirement age ( whoopee). That was nearly 2 years ago and I’m living just about an ordinary life.What nobody will tell you is the mental side of things, so watch out for that as your old self will be gone and you have to come to terns with the new you. Stay strong and good luck.

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