1: Most, if not nearly all the data is retrospective.
2: Dr. Wierda and many others are refining algorithms that will weight the many variables to better predict our future including such helpful information as the expected time to first treatment or our chances of a durable remission or ultimately our chances to live long and prosper.
3: The markers predict for groups, not individuals, but that doesn't mean we should be therapeutic nihilist and ignore what our FISH tests tell us about what options improve our odds.
4: Bad prognostics are not in themselves an indication for treatment (outside a clinical trial).
5: Good prognostics doesn't always mean that our CLL will be a non-event.
6: New prognostic factors are being discovered all the time, but few will be of much clinical import.
Here is the second part of my interview with Dr. Wierda from ASCO 2013.
I will let him fill in the details on all these topics and other aspects of this moving target.
Again my thanks to my friends at Patient Power for sharing the work and supporting the effort to get the important news about CLL from ASCO out and available to all those of us who need it to inform our choices about how we handle our disease. Check in on their website on a regular basis as Andrew Schorr is frequently update his informative site.
In fairness, I must add that other researchers have published data supporting a possible relationship between Notch1 and Richter's Transformation (or Syndrome),
I quote from a letter in the British Journal of Haematology, 2012, 158, 415–429
"NOTCH1 mutations were associated with a ~5·8-fold increase in the crude hazard of transformation into a clonally related RS (Richter's Syndrome) "
This is from an editorial from haematologica | 2012; 97(3)
"In fact, the first studies reported a high frequency of
NOTCH1 mutations in .... disease progression towards transformation into Richter’s syndrome."Now this is not the same level of evidence as in a full article, and as such might not pass mustard for Dr. Wierda and others as proofpositiveof the correlation, but it convinced me that it is worthy of further study.
There is just too much data out there for anyone of us to be aware of it all.
And that's OK.
