What are the stages of myelofibrosis

[Richinspirit]

My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching him closely for the next few months and has not yet prescribed any treatment. She gave us an information pamphlet to read, which we found very useful, but having read through a few posts on this site, I am seeing references to stage 2 and stage3 myelofibrosis. Consultant didn't mention what stage he is at - so do I need to check this out or is ignorance the best way forward......

[Sivasi]

HelloI can't give you any useful guidance, I'm afraid, but I'm in exactly the same situation as your husband (post ET Myelofibrosis, recently confirmed). I asked my consultant about the long-term prognosis and she was very vague. I don't know if she genuinely doesn't know or if she's reluctant to tell me. Personally, I'D prefer to know which stage I'm at

[Richinspirit in reply to Sivasi]

Thank you Sivasi - I agree, we would like to know too.

[Scaredy_cat]

prognosis can be estimatedes From dissolve and similar calculations. Eg qxmd.com/calculate/calculat...

[Richinspirit in reply to Scaredy_cat]

Sorry - I don’t understand your reply.

[Scaredy_cat in reply to Scaredy_cat]

I don't know anything about stages of MF but there are various scoring methods to estimate the median lifespan after diagnosis of MF. The link I gave you was to one of those methods. I found it useful to know how much longer I was likely to live. At first it was 13 years and as I was 69 that seemed ok but then it changed to 9 and eventually 3 which did not seem OK.

[Richinspirit in reply to Scaredy_cat]

Thank you for replying again…… my head is all over the place and I didn’t take the time to read the link you sent me. It is appreciated!

[Mufftreacs]

I am 83, live in Australia and recently progressed from ET to MF. My consultant said I could have a test to see how far it had progressed but the results would take several weeks. This was suggested just in case I wanted to get my house in order. I was horrified at the thought and said I would rather just enjoy each day as it comes. I am doing just this and feel reasonably well at the moment. For me it is better not to be constantly thinking about time running out and to enjoy each day as it comes.

There obviously is a test available if you request it and wish to know.

Wishing you all the best,

Katie

[Richinspirit in reply to Mufftreacs]

Thank you Katie - very best wishes!

[Goose2023]

I am 78 and diagnosed MF after a bone marrow biopsy...my stage is 4 ...and they gave me 12 months....that was 2 years ago....I am still going strong with only minor issues.....no two people exhibit the same symptoms so a prognosis is not a good idea...it is based on a score for symptons...reason doctor was vague.....just take it as it comes and keep up with latest treatments and also clinical trials