Recently diagnosed with Myelofybrosis

Hello everyone :wave: Just wanted to introduce myself to the group, I’m Tracy :wave: I have just been diagnosed with Myelofybrosis one of the Myeloproliferative neoplasms (MPN) cancers, I also have Lupus which I was diagnosed with 10 years ago, as a mum of a beautiful 12 year old boy my immediate thought when I heard my diagnosis was panic for him :disappointed: Due to the rarity of this cancer I feel quite alone and scared to be honest of what’s ahead of me, I was so glad to find this support group as I will definately need you all during my journey :heart: Any advice at this stage would be greatly appreciated :pray: I haven’t yet received a risk category for my cancer but I know there is no cure, I have a second bone marrow biopsy on Monday to look forward to before I hear which risk category I’m in :scream: Thank you in advance for any advice x


Hi @TracyS74,
I am so pleased you have found us too. I hope you are doing okay today?

This must’ve came to you as a shock to you. Therefore it’s completely understandable to feel scared and have lots of anxieties around what this means for you.
I’m certain you will meet lots of others living with MF who may be able to share their own experiences with you & support you along the way, but I also wanted to let you know that if you ever need to talk anything through you are always very welcome to call our support line at any point- Blood cancer information and support by phone and email | Blood Cancer UK.

In case it is useful in any way we have some really great information for those newly diagnosed here- I’ve just been told I have blood cancer | Blood Cancer UK.
As you have rightly said Tracy, Myeloproliferative neoplasms (MPN)’s are one of the rarer groups of blood cancer which we appreciate can make it feel all even more isolating so do keep in touch with us.

Take good care, Lauran


Hi, I was diagnosed with Myelofibrosis in the summer of 2023. I did have Polycthemia prior to this.

I am in risk group 2 which means I was not entitled to receive Ruxolitinib which is one of the usual treatments.

I joined the Fedora clinical trial and just about to complete 6 months of treatment. There has been much improvement in the symptoms I was experiencing. My worst symptoms were unexpected weight loss and fatigue, I also had most of the other symptoms common for the disease.

Following your bone marrow biopsy your consultant should able to decide if you need treatment.

Good luck and let us now how you get on.


Hey :wave: Thank you so much for taking the time to share your story, it’s great to know that there is someone else out there who has a similar experience to me! I’m planned to start treatment of Ruxolitinib on 19/3, I’ve got my second bone marrow biopsy this Monday as they couldn’t get any aspiration fluid from my first likely due to scarring :pensive: I’m not sure which risk group I’m in there was that much information given to me at my consultation last week :see_no_evil: I think because I already have Lupus (diagnosed 10 years ago) that has thrown some curve balls :joy: I think the biggest fear I have is the life limiting part of this illness so scared when I read online approx years for each of the risk categories :see_no_evil: I’m hoping to read and hear about peoples stories who have gone on to thrive past those statistics :crossed_fingers: #thereisalwayshope :rainbow:


I am so glad that you have have found us @TracyS74 and already found someone else with a similar diagnosis, You are now part of our forum family so you are never alone.
We might all have different diagnosis on here but I have noticed we often share similar fears, thoughts, feelings and practicalities.
I have another blood cancer but when I was originally diagnosed the internet said I had a 5-10 year prognosis and that was 20 yrs ago.
You say you have another bone marrow biopsy coming up perhaps tell the medical team if you are anxious, or want pain relief etc do ask as the more relaxed you are the better.
Just give yourself time to come to terms with your diagnosis and please do keep posting I find this forum is the one place where I can be really honest about what it is like to be me,
Please do keep posting and be kind to yourself


Prognosis is something to go through with your consultant as what you read on the internet is not always the most reliable. My consultant told me the median time for living with the disease and at my age of 63 it seemed to be a reasonable time. I did bring forward my planned retirement from next year to this year as a result. It has taken me some time to come to terms with everything, I now have.

Have you got the Blood Cancer book on MPNs which is worth a read and the Myeloproliferative neoplasms (MPN) voice website has a few stories from idividuals with the disease.

Good luck with your bone marrow biopsy, let is know how you get on. I am also having one this week and an ultrasound scan to measure my spleen.


Hi @Jonpd good to hear from you with your great response
Please do let us know about your bone marrow biopsy and ultrasound.
Look after yourself

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I do indeed have the Myeloproliferative neoplasms (MPN) book I’m making my way through it, Good luck with your biopsy and scan :crossed_fingers: Thanks to both of you for taking time to comment, I really appreciate it :heart:


You’re certainly not alone @TracyS74. I too have Myelofibriosis, diagnosed just as the pandemic reared its head in late 2019 and treated with low dose aspirin and peg interferon ever since. I just had a Haematology appointment and pleased to say everything is stable, so I keep ticking along for the moment. My main symptom is fatigue which has forced some modification of duties at work that I’m far from happy about on a personal level, yet also grateful for as it has made a difference. Other than a little joint pain from time to time, I do pretty well all things considered.

Good luck with your bone marrow biopsy, have to say the staff were wonderful on the day I had mine. Kept me chatting away to distract me from what was going on behind me!


Great to hear from you again @CosmicHobo and that things are stable with you. in my book ‘stable’ is good.
Keep looking after yourself and posting


Thanks Erica, yes stable is as good as it gets really! Hope you’re well. :slight_smile:

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Having my bone marrow biopsy and ultrasound scan tomorrow. It was postponed from last month as they miscalculated the time equirements of the clinical trial.

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Hi @Jonpd I will think about you tomorrow.
Take lots of care of yourself and please do let us know how you get on

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