Primary Myelofibrosis

Hello all. In 2005 i was given a diagnosis of Primary Myelofibrosis and Myeloproliferation. This was by BMB. During the last year i have seen a different consultant haematologist who requested blood work, ultrasound scan and then a BMB.
The results all are good. The result of the BMB shows nothing that would be able to give any diagnosis of Myelofibrosis.
I have had no treatment apart from Danazol to control itch which is now being controlled by Dermovate.
I am triple negative for driver mutations and a second recent testing for secondary genetic mutations has also come back negative for all.
I’ve lived my life around Myelofibrosis for 18 years and now i’m being told i don’t have it and there are no answers as to why apart from i could be a phenomenon.
Is there anyone at all who has experienced this? My head hurts from trying to figure is all out :sleepy:


Good morning @AngelaC and welcome to the forum.
Wow, what a story - I can only imagine all the thoughts and emotions running around your mind. To think that a diagnosis that you had 18 years ago is no longer - it’s so much to comprehend!
I have copied in @BloodCancerUK_Nurses as they will have the knowledge to discuss this with you and ask the right questions.
Also, don’t forget the support line is there if you would like to talk it through (0808 2080 888)
Please take care X


Thank you so much for your response Nichola. I don’t know where i fit in any more. I don’t have a blood cancer yet here i am asking for help. Survivors guilt for all those i talked to but have now gone. Still walking in public wearing a mask just in case. Stillsafeguarding myself. Still wondering ‘when will the decline start’ The list is endless.


All normal responses so don’t be hard on yourself.
Feeling like your not sure where you belong comes when you get a partial remission it’s where I found myself at my first Stem cell transplant
My beautiful soul sister who had myeloma made me promise to live my life to the full for me and her and I’m doing exactly that.

I’m sure your forever welcome here blood cancer or not after 18 years you still need the support and I think we should all safe guard ourselves to however we feel at the time

Your starting a new normal and that will take some time to digest and gain some confidence
You got this :slight_smile:


Hello @AngelaC
I am so glad you have taken the time to post on the Forum.
To be honest I am stuck for words, and had to read your post about three times to take it in, so I can’t imagine what you are going through at the moment. I am so sorry to hear that this has happened to you.
I am sure you have many questions (as would your Consultant, after getting the genetics back). You would have had many blood tests over the years, so were they always normal, or did you have abnormal counts?

Do you feel strong enough to begin an investigation to find out how this happened? May I ask if you have moved and are at a different hospital now, were your notes not passed on? If you are or if you aren’t, all of your medical records have to be kept as a legal requirement for 25 years. You could ask your PALS team to help with this, or even your GP, if you have a good relationship with them.

I fully appreciate that this would have come as a total shock to you, and no wonder your head hurts, such a lot to process and accept, but please do call the support line if you ever want to talk about it.
Do whatever feels right for you now, if you want to seek answers, get the help to do that. If you want to stay connected to the BC community, do that too. You are going to need support in some form for the coming days/weeks, please just ask. There is lots of great support here on the Forum, and through our Support Services team, just let us know what you need.
Take care, go gently and take each day at a time.
Best wishes,


Oh @AngelaC wow, I just do not know what to say and you have been given brilliant responses by others.
I just cannot imagine your rollercoaster of thoughts and emotions and every one of them is so valid.
We certainly are complex beings.
In a weird way you have suffered a bereavement of something that you certainly did not want that changed your whole being and lifestyle.
It would also bring up a lot to me having to tell people close to me.
I bet your head hurts, look after and be very kind to yourself and you are always part of our forum family and if you would like to talk to someone the Blood Cancer UK support line is there for you.

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