Dr. Anthony Mato of Memorial Sloan Kettering in NYC has been an early champion of CLL Society’s effort to educate patients about why it is so important to Test Before Treat™.
Over the past years, Dr. Mato has presented discouraging real world data on the dismal state of prognostic and predictive testing for CLL patients.
I wrote this introduction to Prognostic and Predictive Tests and When Should I do them for my CLL? that I highly recommend that every chronic lymphocytic leukemia patient read before making any treatment decisions.
The hope was that the number of CLL patients (pts) being properly assessed was improving, but at the American Society of Hematology Annual Meeting and Exhibition or ASH 2020, his latest real-world data was deemed significant enough to earn one of the prestigious twelve oral clinical CLL sessions at the meeting. Maybe that was because he was going to tell the hematologist in the virtual audience that things are not getting better and as a result, patients are the big losers.
Here are the take-aways:
- The Inform registry enrolled with 1461 pts: 855 (59%) previously untreated and 606 (41%) relapsed/refractory (R/R) pts.
- Community-based practices enrolled 93% of pts
- FISH testing was performed in 28% (n=415) of pts and was more frequent in previously untreated vs relapsed/refractory (R/R) pts (33% vs 21%) though we know that FISH often changes for the worse with treatment.
- TP53 mutation testing was performed in only 11% (n=162) of pts.
- IGHV mutational status testing was performed in 12% (n=171) of pts (previously untreated: 13%; R/R 10%).
It gets worse, but it may be slowly improving.
- Of 100 pts with del(17p), 59% received ibrutinib, but 28% were given chemo-immunotherapy (CIT), a treatment that is not going to work.
- Of 43 pts with TP53 mutation where we know for sure that chemo is ineffective, yet more than one in five patients were given toxic and useless therapies.
- The only encouraging news is that the proportion of pts with del(17p) and/or TP53 mutation receiving CIT decreased over time (2016–2018), although sample size was small.
- Of 121 pts with unmutated IGHV where again chemo-based treatments have proven to be inferior to novel agents, still almost two out of every five patients still received chemo.
Conclusions
We have our work cut out for us. Too many patients are not getting proper testing to guide their therapy and worst large numbers are getting inappropriate chemotherapy even after testing is done. They are getting treatments that are not only mostly useless, but also toxic both in the short and long term.
That is why we push our readers to get an expert on their team who know how and when to test you and what the tests mean for your care.
That is also why we urge you to read and download our one pager on Test Before Treat™ and take it to your doctor.
There you learn:
del (17p) or TP53 mutation or IgHV (AKA IgVH) unmutated = No chemotherapy
That’s why we say Smart Patients Get Smart Care.
We just wish all community hematologists would learn this too.
The attention that Dr. Mato’s oral presentation at ASH 2020 should help.
In our interview we talk about why he thinks the situation is not improving and what we can do to help.
There is a lot more to learn than just the highlights I presented here. Our ZOOM interview from a virtual ASH 2020 goes deeper and broader:
And Dr. Mato’s ASH abstract has more detailed data, especially in treatment: Real-World Prognostic Biomarker Testing, Treatment Patterns and Dosing Among 1461 Patients (pts) with Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL / SLL) from the informCLL Prospective Observational Registry.
Thanks for reading.
Stay strong, we are all in this together.
Brian Koffman MDCM (retired)
EVP and CMO CLL Society
