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Diagnosed Aug 23 with ET but after recent biopsy diagnosis changed to myelofibrosis

MarkedOut
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Hi.  First post after receiving new diagnosis yesterday.  54 year old male, reasonably healthy other than MF.  Most difficult thing I am finding is the uncertainty of the prognosis.  It's really hard to get a feel for life expectancy given I am younger than the average of those diagnosed and I don't have any significant symptoms other than fatigue.  Spleen size is 12cm but I don't know what it measured before I was diagnosed but it's now at the maximum of normal.  I have three grown up children 22/25/28 and I am keen to be around to see them settled and I'd like to think I will get a chance to become a grand parent.  I am classed as Intermediate risk on MIPPS7 v2 which seems to suggest a median survival of about 8 years but I have also read that, at my age, 11 years might be more accurate.  Any tips on getting a better prognosis would be welcome as well as understanding how quality of life might change so I can plan out the future years to ensure I get the most out of them and do everything I can to make things good for my family.  Thanks and glad this forum exists.

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  • Hi Markedout

    I have a friend whose husband was diagnosed with MF 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. I believe he was also early 50's when diagnosed.

    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 approx 2 years he had a stem cell transplant,  which has worked and 2 years on he is still in remission. Yes, there is a chance that it may come back, but at the moment it is looking very positive!

    I hope that you get some information that helps.

    Best wishes

    Annie

Reply

  • Hi Markedout

    I have a friend whose husband was diagnosed with MF 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. I believe he was also early 50's when diagnosed.

    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 approx 2 years he had a stem cell transplant,  which has worked and 2 years on he is still in remission. Yes, there is a chance that it may come back, but at the moment it is looking very positive!

    I hope that you get some information that helps.

    Best wishes

    Annie

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