Hi I had a look at the NEJM pape Maz posted , and here is a direct link to the MPN Personalised Risk Calculator. It is, at the moment, the best there is. The more data you have about your MPN, the more accurate the risk assessment is.
I’m so glad that researchers are now using the info about us all to create systems that we can use to get moe of a handle on out individual situations.
Just input what available data I’ve got on my ET. Quite pleased with results- but I don’t know if I have any ‘passenger mutations,’ so I have to be cautious.
Hi. I’m having signal probs at the moment, so you might get a half finished reply I started a few minutes ago.
Passenger mutations: a speaker at the London forum last year explained them as the ones that aren’t driver mutations. Its a rather feeble joke. But geneticist can be like that: hedgehog genes were named after sonic the hedgehog, an early video game character.
If you ask your haematologist next time you see them they might be able to go through your results with you and explain whats what. That’s what I’ve asked mine to do.
Very interesting, but which data should be used? My wife's data has been all over the place. He has been as low as 50 and as high as 109 white cells as high as 45 and as low as 1.5 platelets 2000 and a low of 60. As she now has no spleen, there is not a box for that. So very interesting but very confusing too.
I agree: its not that clear. My take is that you use the latest readings you have. I also find it confusing that the hb levels in my case went crashing down when i started rux, and came up a bit when EPO was added to the mix. The other oddity is thst, as with all the scorng systems, survival time is measured from the date of diagnosis. But at least this system gives a confidnce likit (error measure) for the survival time.
Thanks Rachel - very interesting. If nothing else it confirms my concerns about how little I (and my hemo team) know about my passenger mutations and other factors that can influence my outcomes. My diagnosis was simply ET with JAK2+ (via a DNA test) and raised platelets - no BMB - and my hemo consultant still refuses to call it cancer!
But there is always a bright side - my ET seems to be under control apart from the fatigue, and my prognosis from this model is better than i expected even without ET ........ oh, and the sun has just burst through the clouds - what more can you want?
Good oh. Mine was better than I’d thought too. But the sooner we all get, as a matter of routine, all the info we need for us and our doctors to make the best MPN related decisions , the better. And having enough data to populate the fields of the calculator would be a start.
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Study shows more Driver Mutations in General Population
