Myelofibrosis diagnosis - Grade 3 at diagnosis

Recent diagnosis
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Hi everyone,

Recently, I’ve been diagnosed with Myelofibrosis, (and JAk2 mutation) after a portal vein thrombosis that extended into superior mesenteric vein and splenic vein - previously totally healthy, 48 year old (or so I thought, lol!). My bloods are normal, and I don’t have any symptoms (apart from enlarged spleen, partially as a consequence of a splenic infarct, but not only). But, interestingly, my Fibrosis came back as Grade 3 after the bone marrow biopsy, which was a touch surprising. Wondering if anyone else had that grade on diagnosis, or whilst not having other symptoms (apart from clotting), Ben

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Hello there @BenAnderson, welcome to the forum at what must be a concerning time. That thrombosis sounds horrible, I hope you’re well into recovering from that. I’m a similar age to you and had a clotting event many years ago and can appreciate how they affect our energy afterwards, let alone how scary it all is!

From my non-medical understanding, I’d say you’ve come to the right place as there are many other forum members who have the JAK2 gene mutation and live with Myeloproliferative neoplasms ('MPN') like Myelofibrosis (‘MF’), Polycythaemia vera ('PV') and Essential thrombocythemia ('ET').

I know of a few members who have shared their experiences of MF that I hope will comment, perhaps @DuncanB might have some words of wisdom? No pressure it not Duncan.

In 2023 I was diagnosed with Polycythaemia vera ('PV') and I happen to have the same gene mutation as you Ben. Apparently JAK2 gene mutations are often linked to Myeloproliferative neoplasms ('MPN'). Perhaps you’d like to read the great Blood Cancer UK information about MPNs and specifically MF: Myelofibrosis (MF) | Blood Cancer UK

Just wanted to say that I’m glad to read your bloods are normal, that’s what I look for after all the CBCs I need to have with Polycythaemia vera ('PV'). Having no symptoms is also a really good sign—my haematologist likes to remind me that having no symptoms and blood cells in their normal ranges with a blood cancer is the best I can hope for. It might be worth bearing in mind that many living with Myeloproliferative neoplasms ('MPN') have to tolerate developing literally irritating symptoms like pruritis.

We forum members can’t discuss the medical side of each other’s diagnoses as they’re so unique to each of us, and it might be hard to find someone with the exact same set of circumstances with these rare blood disorders.

However, I would suggest calling the Blood Cancer UK nurses. They are specialists in blood cancers like ours and are lovely, their number is 0808 2080 888.

Do let us know how you get on @BenAnderson, and perhaps when you have the headspace for it you could have a further look around the forum using the search box as you’ll soon find others living with MF.

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Hi @BenAnderson and welcome to the forum.

I’m reaching out after another great post from @Duncan

I was diagnosed October 2023 with Myelofibrosis. Intermediate 2 was my grading at that time.

At time of diagnosis I was 59.

Like you fit and healthy at time of diagnosis. I had gone to GP as my belly button was looking odd. GP said never mind about belly button what’s going on with left side of your body.

Suspected enlarged spleen did bloods and came back to me later in day to say Haematology concerned about bloods.

Blasts at time of diagnosis between 10 and 15%. Spleen was 24cm.

Admitted couple of weeks later when biopsy confirmed things.

Started on Azacitidine with daily injections for 7 days then 21 days recovery time.

Also on Ruxolitinib tablet each day which was targeting spleen. It’s a JAK2 inhibitor.

After 3 cycles blast count increased to over 20% so then classified as Acute myeloid leukaemia ('AML').

Into hospital again for high intensity chemotherapy Flag-ida in the hope of reducing blasts.

Sadly didn’t produce result expected.

Then put on Azacitidine and Venetoclax as well as Ruxolitinib.

Against all the odds it waa this that got me to a point where a Bone Marrow Transplant was an option and an anonymous donor was found by Anthony Nolan.

Had my transplant April 2025. Not long past one year anniversary and doing well at this point.

Hopefully this post helps. A lot of detail but what I found is that it’s good to have some knowledge from trusted sources to facilitate discussion with your clinical team.

Take care and keep us informed on how things progress

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Hi @DuncanB Having been diagnosed a year ago with MF having had Thrombocythemia with Jak2 positive gene for 10 years prior. I too have recently been told a suitable Donor has been found. Going through mixed emotions at the moment from excitement, being humbled and scared too. I start my week of intensive Chemo at beginning of June (via outpatient appts) Then hospitalised 7 days later for 6 weeks after transplant. Do you have any tips or advice on how to cope with the bad days during this process? I understand everyone is different and has their own coping mechanisms.

@Scoop

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Hi @SCcoop

Great news that a donor has been found for you. It’s an amazing gift and gratitude doesn’t seem anywhere near enough to express my feelings.

Happy to share my experience.

I was told pre admission to expect 5 to 6 weeks in hospital. Ended up being 9 due to a number of issues along the way.

Throughout that time I never had any worries as the clinical team on the ward were amazing.

In terms of coping strategies I decided just to do everything that was asked of me, accept that there were going to be good and bad days.

It’s surprising just how quickly you get into the routine. Knowing when breakfast will arrive, drug round, observations, Consultant round.

Wife visiting, meal ordering and evening video call.

And of course a fair bit of sleeping too.

I didn’t watch TV or even read but had music on Spotify which I listened to morning and evening.

The chats with the chap who took meal orders and the housekeeper who cleaned the room were great sources of support.

They are not clinical but great at advising on meal choices and in touch with outside world.

I had a few wonderful Healthcare Assistants who chatted away as well as dealing calmly with those less pleasant things you tend to encounter.

Physio was great too.

There’s no right or wrong way to deal with things but interacting and being interested in the staffs life helped.

Expect your resilience to be tested for sure but be reassured that there are protocols for everything.

Hope that helps

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Thank you so much for this info @DuncanB. It has calmed a few nerves.
Yes, its a real gift from someone anonymous, which really is humbling.
I too have an amazing clinical team. My faith and trust in them doing what they do best has always been 100%
I will certainly go into this with an open mind and a positive attitude.
I have an amazing hubby and 2 daughters for additional support behind me, to keep me on track when I need it!
Hope you continue to progress and can now look forward to enjoying your life.

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Hi @SCcoop

Glad what I shared calmed some nerves.

Excellent news that you also have a great clinical team who you trust so much.

Having an amazing hubby and 2 daughters will help.

My wife was brilliant support from day 1 and even now 1 year on post transplant

You will need your hubby and daughters so much when you’re discharged.

We don’t have kids but we formed a little bubble with my wife’s best friend who was her bridesmaid when we got married

She’s an elderly care nurse with 40+ years experience and so immediately stays away if she’s got any sniffles or even a patient who’s had an infection..

Good luck and feel free to reach out with any questions

Always happy to help

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@DuncanB Thank you so much.
I will be celebrating my 70th birthday whilst in hospital. So it will be a birthday to remember! :blush:

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Hey - just a note to say a huge thank you for the replies @Duncan @DuncanB

And thanks for sharing experiences of stem cell transplant - good to hear, as my consultant is referring me to the transplant centre (consultant said this was just to get me in the system, and begin the matching process, but said it would be a long way off). I hope things go well for you @SCcoop , and hearing about other experiences is positive for you. It’s lovely you have support around you. I must admit that strangely the whole thing has been very positive so far - life enhancing in many ways, as friends and family have been so kind!

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@BenAnderson Its taken about a year to find me a suitable donor. But I have to say the care and support I have had from my clinical team, family and friends has been amazing. I have always stayed positive. Hope your journey is as positive too.

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It definitely will be a birthday to remember @SCcoop

My wife had her birthday while I was in for my transplant last year.

One of the brilliant Healthcare Assistants I referred to above brought in a whole bunch of crafting materials so I could make a card for her.

Took me days to do and finished card looked like something a kid in nursery would bring home.

She did appreciate it though.

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It really is a pleasure @BenAnderson

My donor was found pretty quickly and if my blast counts hadn’t increased so much, I suspect I would have had my transplant about a year earlier than I did.

Definitely worth getting in the system as process takes time and finding donor is just one, albeit very important part of the jigsaw.

Think a diagnosis changes a lot of things. I know for me I learned to focus on the here and now and enjoy the simple things in life.

Take care

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@DuncanB that made me giggle :rofl: But I am sure it would have been the best birthday card she would have received :heart:

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Hello again @SCcoop, I’m really glad to read a suitable donor was found for you. You said before that there were a few matches, so it’s great one was deemed most suitable. Really chuffed for you. I’m really glad you’ve reached out to dear @DuncanB for tips, he’s so knowledgeable about stem cell transplants and of course his own experiences are priceless. If you’d like further ideas of how others have got on with similar transplants and/or medicines prior to and during the transplant then the search box at the top is a good place to start, using terms you’d like to read more about such as ‘stem cell transplant’ or ‘myelofibrosis’ or the names of the medicines you’ll be taking. Duncan’s tips really are calming, aren’t they?!

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You’re very welcome @BenAnderson, I’m really sorry you’re going through this at all so am glad to offer any support. Apologies for the delayed response, just back from camping with no signal. I see dear @DuncanB has shared his wisdom as ever (thanks Duncan!), and like I suggested previously to you and @SCcoop you could also use the search box at the top for finer searches, for example the names of medicines or other aspects you’d like to know more about from forum member perspectives.

Don’t forget you can speak to the Blood Cancer UK nurses with all your queries, practical or medical, on 0808 2080 888. You can also ask them to put you in touch with the clinical trials team at BCUK who also really know their stuff, I’ll tag the @ClinicalTrialsSupportService here in case they’d like to greet you too @BenAnderson.

I’d say keep doing what you’re doing Ben learning what you can and this will start to make a little more sense, but do ask for support from loved ones so you don’t have to shoulder this alone. May I ask if you have loved ones who can accompany you to appointments for moral support and to help taking notes? At this early stage I would say be pleasantly assertive asking your specialists to repeat themselves and use plain language so you can take in what is being explained more easily. There’s a lot of acronyms with blood disorders, as I’m sure you’re already finding!

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@Duncan thank you for the info. Yes, a few matches, also a few disappointments along the way. But it’s good that things have come good in the end. @DuncanB is a mind of information and I have found the info so useful. Infact this forum group is so positive.

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Aww that’s great @SCcoop, I agree it really is positive here. Glad to read you could take the disappointments with the positives, that will hopefully stand you in good stead with all these ups and downs we experience!