I have a friend whose husband was diagnosed with myelofibrosis approx 10 years ago, she said that because it is quite a rare type of blood cancer, they had alot of difficulty finding information on it.

She said the website:  mpnvoice.org.uk was a good source of information with regard the condition.

Her husband was on medication for a number of years and managed to get on a clinical trial, which worked well.  Then he had a stem cell transplant,  which has worked and 2 years on he is still clear from it.  Yes, there is a chance that it may come back, but at the moment it is looking very positive!

As Jolamine says, you may well be one of the lucky ones that dont go on to develop the full blown disease, although I can understand that just living with that possibility must be very hard to cope with.

I hope that you get some information that helps you deal with this.

Best wishes

Annie

I have a friend whose husband was diagnosed with myelofibrosis approx 10 years ago, she said that because it is quite a rare type of blood cancer, they had alot of difficulty finding information on it.

She said the website:  mpnvoice.org.uk was a good source of information with regard the condition.

Her husband was on medication for a number of years and managed to get on a clinical trial, which worked well.  Then he had a stem cell transplant,  which has worked and 2 years on he is still clear from it.  Yes, there is a chance that it may come back, but at the moment it is looking very positive!

As Jolamine says, you may well be one of the lucky ones that dont go on to develop the full blown disease, although I can understand that just living with that possibility must be very hard to cope with.

I hope that you get some information that helps you deal with this.

Best wishes

Annie