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Prefibrotic myelofibrosis

GillianDM
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Hi, my name is Gillian. I am 64 years old and have been diagnosed recently with prefibrotic myelofibrosis. I am feeling totally overwhelmed at the moment and very isolated. ( I have recently moved to Scotland and have no friends here). I feel like a ticking time bomb waiting for this to progress even though I know it may be years. 

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    Hi Gillian,

    A very warm welcome to our forum.

    I am sorry to hear that you have recently received a diagnosis of  prefibrotic myelofibrosis and can understand how you feel at present. This must be particularly overwhelming, when you haven't yet had time to make new friends in Scotland. Can I ask what part of Scotland you are now living in? There are cancer support centres dotted throughout the country and you might find it helpful to join one of these.

    I do not know much about this type of cancer, other than the fact that the disease can be progressive and the rate of progression can vary. I understand that some people never progress to overt primary myelofibrosis, so, there's still a chance that you might be one of the lucky ones.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi Gillian

    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

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