survival rates and damn statistics

I had read this awhile ago and could not remember where i had seen it. i ran across it again accidently tonight.

so i copied the quotation. Survival rates are only done once every 5 years. so if new therapies are found within that 5 year period-they would not be in statistics-the quotation will be below

It is important to remember that statistics on the survival rates for people with leukemia are an estimate. The estimate comes from annual data based on the number of people with these types of leukemia in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.

[DriedSeaweed]

Kaplan-Meier curves are always frustrating to look at. Since we all die eventually they can only go down!

Probably the first thing we all looked at after diagnosis. Our hearts sank with the slope we associated our markers with. Even though we know it does not represent us as individuals I am sure others are like me and still come to that conclusion in the moment of interpretation.

All old news. But until we see newer and newer curves...

[AussieNeil Administrator]

I'd say the delay in survival rate statistics is worse than that for CLL, because:

1) Watch and wait means there's a delay in actually treating newly diagnosed with new drugs

2) You aren't going to see any improvement in the life expectancy of those that never need treatment (about a third of us) from new drugs (Sadly we may still have a shorter life expectancy despite not needing treatment, due to our higher risk of death from infections and secondary cancers). Everyone is up to date with their non-live vaccinations I hope? healthunlocked.com/cllsuppo...

The survival rate in the USA at 5 years for the period 2009 to 2015 for CLL was 85.1%.

seer.cancer.gov/statfacts/h...

That figure will be barely influenced by the 60% of IgHV mutated folk achieving long remissions from FCR (approaching 20 years for early trial participants), because FCR only gained FDA approval in February 2010! The percentage of those treated will be a small percentage of the overall population due to (1) and the fact that FCR is not recommended for those over 65. Remember, the median age at diagnosis is 70 and from the same SEER statistics, seer.cancer.gov/statfacts/h... 67% are over 65 and 89% over 55. Perhaps 75% needing treatment would be older than 65, but these folk do well on Ibrutinib, which was only approved by the FDA for CLL treatment in February 2014!

So per your second paragraph, neither FCR or Ibrutinib will have influenced the published CLL 5 year survival statistics. It will be a long time before we see the influence of the newer, non-chemo drugs, but meanwhile we are hopefully enjoying living longer! Remember that it will take a while for the statistics to be collated, analysed and published, so we'll need to wait a few more years yet to see the latest update on 5 year survival times.

(Yes, I appreciate that in the USA, doctors can treat patients off label, but how much is that practice going to influence survival statistics?)

Neil