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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.

  • Hi MarkedOut,

    Welcome to Cancer Chat. I'm glad you've found the forum and I hope that it can be helpful for you.

    I'm not sure how much you've discussed these points with your doctor/specialist as yet, but they will be best placed to advise in terms of understanding what to potentially expect, so do be sure to talk things through with them and to ask any questions you have.

    You are also welcome to speak to one of our nurses if you would like to. You can reach them on freephone 0808 800 4040 - Monday-Friday, 9-5.

    Aside from this, hopefully you'll get some more replies to your post here soon. You can also have a browse or search of the forum if you'd like to find other discussions and people to connect with, if you would like to.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • 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

  • Offline in reply to annie123

    Thanks Annie - I have registered with mpnvoice and it is useful.  Thank you.  Great that your friend's husband got a HSCT and is in remission.  I hope he continues to be in remission.  M

  • Offline in reply to Moderator Ben

    Thanks Ben.  I am seeing my consultant in mid May so will be sure to have a long list of questions prepared.  Thank you.  M

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