mdcalc.com/international-pr...
I just came across this index online. Have others seen it? Is it accurate? I think it was created to give doctors an idea of risk level for determining treatment.
Of course I put in my numbers and came up high risk. Oh my heart be still!
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if you read the section at it that was pearls/ pitfalls-it expressly said the chart was developed BEFORE the advent of novel drugs like ibrutinib. dates are very important when looking at this stuff. many if not most articles either predate novel drugs or are their early years in trials
Most of us long termers would have gone a long time ago based on this chart! 🙄
Newdawn
Babs, you need to click on the tab that reads "pearls/pitfalls". It reads:
"Developed using patient data from before use of targeted agents such as ibrutinib and venetoclax, which are known to have greater efficacy in patients with TP53 alterations.
While treatment type was not an independent factor in the CLL-IPI, TP53 status was, and thus the use of novel agents may have an effect not currently measured in the CLL-IPI".
That's just another way of saying that index is outdated. Novel agents have really leveled the playing field for all types cll.
Most of us end up cobbling treatments together and it just doesn't help to stress too much over risk factors. Front line ibrutinib just by itself is taking most people out more than five years. By the time we get to five years out there will be new and improved inhibitors. The survival curve for cll gets better literally every year.
We are all at our best living proactively in the present and not projecting the future, other than to know that the history of cll treatment over the last thirty years has shown treatments are constantly getting better and extending our lives and quality of life.
I read somewhere (sorry cant remember where) that the IPI is to be updated with new data. I guess it's no good unless its accurate (!) but the Rai or Binet staging systems are also pretty vague imo
5 years for me Plan on Lliving longer sorry calculator Im cancerfree since January 2018
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