I have been diagnosed with Pre Mylofibrosis I asked if it was Essential thrombocythemia ('ET') and the hospital said no I asked if it was MF they said no, it’s inbetween . This makes it difficult to explain for any forms I have to fill out does anyone else have this diagnoses, Thanks
1 Like
Hi @Littleone
It can’t be easy being in position you’re in. I was diagnosed with Myelofibrosis
Completing forms will be challenging and maybe you could speak with a Macmillan Benefits Advisor. They tend to be excellent in this area in my experience.
Cancer Research UK also have an excellent page on Myelofibrosis where they also talk about Pre Myelofibrosis a little bit
Link below
I have also included a link to the Macmillan Benefits Advisor page below in case that’s of help
Take care and do let us know how you’re getting on and ask questions when you need to.
1 Like
Hello @Littleone I identity with how you are feeling and I sympathise. When I was diagnosed in 1992 I was told that I had features of Essential thrombocythemia ('ET') and myelofibrosis and that it was difficult to classify the disease exactly. Obviously many years later a lot more is known about these conditions including specific gene mutations that can be relevant is some cases. Whenever I had to fill in forms I would say that I have been diagnosed with a Myeloproliferative neoplasms ('MPN') that has features of Essential thrombocythemia ('ET') and Myelofibrosis. I hope this helps and I wish you well. Incidentally about eight years ago, following another bone marrow biopsy I was told that my disease had transformed to myelofibrosis and I no longer had any features of Essential thrombocythemia ('ET'). Willow x
3 Likes
Hello again @Littleone, sounds like you’ve been diagnosed with a particularly rare type of Myeloproliferative neoplasms ('MPN'). No wonder it’s hard to explain, I’d find it hard to as well!
As dear @DuncanB and @Willow show from their own experiences with Myelofibrosis (‘MF’), it can show up very differently. I live with Polycythaemia vera ('PV') which is another of these Myeloproliferative neoplasms ('MPN') and maybe you’d like to read more about this group of blood disorders which tend to have similar and overlapping symptoms and treatments: Myeloproliferative neoplasms | Blood Cancer UK
As you said your diagnosis is described as in between Essential thrombocythemia ('ET') and MF I’d personally be tempted to read more about Essential thrombocythemia ('ET'), but do ask your specialists what diagnosis is best to read about. Myeloproliferative neoplasms ('MPN') are generally rare, from my non-medical understanding, so having one that is even more rare must make it difficult to find information.
You can also call the lovely Blood Cancer UK nurses as they can help explain the diagnosis. Give them a free call on 0808 2080 888.
Hope that helps @Littleone, please keep us posted about what you find out as I’m sure it’ll help future forum members with similarly rare diagnoses like you.
1 Like