Life expectancy with MF

[Cja1956]

Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At that time, the hematologist I saw gave me a life expectancy of a median of 9.3 years from my diagnosis of MF in 2019. Since I’m not really a math person, I’m not sure what to make of that. Can anyone shed light what that means?

[LucyGeering]

Hello Cja1956,

I hope you're doing well. I also have post-ET MF, and like you my MF was graded as intermediate 1 when it was confirmed with a BMB in 2020. I have also tested positive for the JAK2 mutation. When I was diagnosed with MF my consultant told me that life expectancy with treatment was approx. 13 years from diagnosis. I was 40 when my MF was diagnosed and am nearly 42 now, so that would bring me to 53.

From what I understand a median prognosis of 9.3 years would be an average prognosis, calculated using a number of other MF patients' life spans from diagnosis. Is this what you were asking?

All best wishes,

Lucy

[Scaredy_cat in reply to LucyGeering]

I've been through this type of reasoning. I too was diagnosed with post ET MF last year and as my platelets at that time were over 100, I too got a prognosis of 14 years. A few weeks later my platelets dropped to c 70 so my prognosis was suddenly 3-4 years... I lost 10 years in a few weeks! I don't think so! Now my platelets are above 100 I've supposedly gained more years! I found this scary and amusing at the same time. As you are relatively young the speed of how the disease deveops matters as you may want to consider a stem cell transplant

[ainslie in reply to Scaredy_cat]

This sounds a bit odd to say the least, I doubt a proper expert would give a prognosis like that , I personally know several people with PV for 30 years and still going well, and heard of 40 years and I know people with MF still going well at 20 years and heard of some at 30+ Years , a prognosis of course depends what stage the disease is at especially with MF but I have heard of so many who have outlived the prognosis by decades. Unless people are very Unwell I think most experts would be reluctant to give a how many years left number. It’s also worth remembering as someone else on here mentioned these stats are going back decades, treatments are now much better since then and are moving fast now , who knows we may have much better treatments or even cures in 5 or ten years. We have to be realistic of course but in the meantime enjoy now.

[cmc_ufl]

Median and average (AKA mean) are similar, but different. In your case, we are talking about median.

In this case, the median refers to the following: out of the entire population of JAK2+ post ET-MF patients, the patient with the life expectancy exactly in the middle of the group would be 9.3 years. In other words, exactly half the group would have a life expectancy longer than 9.3 years, and exactly half would have a life expectancy shorter than 9.3 years.

[Cja1956 in reply to cmc_ufl]

Thank you.

[Louise1961]

Keep in mind also that a lot of mpn patients are older and therefore would have a shorter life expectancy at diagnosis anyway . I am no mathematician but it’s seems logical that older patients at diagnosis would have a shorter survival time post diagnosis than younger patients.

Hope this doesn’t offend anyone!

[tracey13]

My husband's consultant doesn't believe in life expectancy he said medication has come a long way . There's people on this forum had blood cancers for over 40-50 years and back then when they were diagnosed the treatment wasn't available like it is now.

My husband has had PV for 7 years and post PV MF now for three years so there's 10 years . He's 50 this year is is doing brilliant.

Tracey

[Ticotopia]

Best not to look at those predictions and just live life. Nobody knows what their life expectancy is. Also remember new medicines and treatment are evolving.

[Jsb45]

Cja1956The median number is the number in a middle of a set of numbers. It is NOT the average. Take for example this set of numbers 1, 2, 5, 6, 7, 8, 12, 15, 16, 17, the Average or mean is 8.9 however the median is 7.5 is the number in the middle of the series of numbers. The median has nothing to do with the value of the numbers just their place in the sequence. Unfortunately, many people use mean and median interchangeably when they are not.

Some statisticians believe the median is a more accurate representation than the mean and vice a versa.

I have taken the philosophy that I will do each day what I can to keep myself healthy without it running my life. Jak2+ with PV for four-plus years diagnosed at 58.

I am sure you'll beat the numbers!

[Cja1956]

Thanks, everyone, for your uplifting and informative comments. My regular hematologist didn’t want to give me a number but when I was referred to another specialist, she was the one that put down that number. I’ll be 66 in couple of days and a median of 9.3 years kind of scared me. But I will live every day up to my fullest and try not to worry about it.Thanks again.

[Magentas in reply to Cja1956]

Glad to hear you sounding okay about it after all the comments, that’s the way :)And I wish you a very happy birthday, Cindy! 🥰