Revised IPSS for MDS

[Sally C]

Revised International Prognostic
Scoring System for MDS
The manuscript describing the Revised IPSS (IPSS-R) for MDS is available now at Blood Online (June 27, 2012). Under the aegis of the MDS Foundation, the International Working Group for Prognosis in MDS (IWG-PM) analyzed clinical features and outcome data from over 7000 patients and generated a method analyzing MDS patient prognosis more precisely than the initial IPSS.

http://www.mds-foundation.org/revise...ystem-for-mds/

[Greg H]

Hi All!

There's are links to a couple of neat IPSS-R calculators on the page that Sally has highlighted. A couple of words of caution:

1. Like the original IPSS, the values (blood counts, blasts, etc.) on which this revised IPSS are based are the values at the time of diagnosis -- not your current blood counts and BMB results.

2. Like the original IPSS, the prognostic table -- that is, the media number of months the folks in your category managed to live with MDS -- are based on folks who only got best supportive care -- i.e., transfusions -- but no Vidaza, Revlimid, etc.

So, go play with the calculator, but be careful about getting too excited (or, more likely, depressed) about the prognosis. If you are being treated, those numbers don't apply to you.

These prognostic models are important, because the help you and your doc decide what treatment is best for you. But they can be pretty hinky.

For example, I ran my numbers in the IPSS-R, based on the CBC I had the day I had my first BMB. I pulled a 4.5, intermediate risk score, with a median life expectancy of 3.0 years. Just for kicks, I ran my numbers from two weeks later, when I actually received the diagnosis. I pulled a 5.0, high risk, median life expectancy of about 1.6 years. (This was two years and four months ago.)

Why the difference? We all have experienced how our platelets, WBCs, and neutrophils bounce up and down with each visit. Mine bounced over that two week period just enough to put me on the other side of the break points the IPSS-R uses to add points to your score.

So, be careful not to get too hung up on your numbers.

Take care!

Greg

[Sally C]

Hey Greg,
Thanks for this information. I did not know this and those are certainly important points to keep in mind when looking at this. Am so glad you're so on the ball!
Sally