Patient Power has a new video interview with Dr. John Leonard from Weill Cornell Medicine. Dr. Leonard is asked about important Lymphoma research reported at ASCO and the European Hematology Association's annual meeting. It's about 20 minutes long, and worth the time.
Some highlights (in my opinion):
The big news in Follicular Lymphoma research these days is the RELEVANCE study, which looked at how R-Squared (Rituxan plus Lenalidomide/Revlimid) compared to Rituxan plus chemotherapy. As Dr. Leonard points out, the trial tried to measure superiority -- in other words, the researchers hoped to show that R-squared was better than R-chemo. In the end it did not, but it did seem to show that R-squared had about the same effectiveness as R-chemo, with different side effects.R-squared seems to be a good alternative to R-chemo. (The Lymphoma community seems hopeful about all of this, though they recognize that the trial did not meet its endpoint.)
What came next is a great example of why I like Patient Power so much. Dr. Leonard was interviewed by Andrew Schorr, Patient Power founder, and a 20+ years survivor of CLL, another slow-growing blood cancer.
Schorr asked about expenses. Chemo is often over and done with after a period of weeks or months. But some newer treatments are taken daily as pills, and over time, they can be more expensive than chemo. Dr. Leonard recognized that it's a major issue. I've heard the phrase "financial toxicity" to describe this -- when researchers give the results of a trial they are required to report on physical toxicity -- the side effects that come with the treatment. But we rarely hear about the financial side effects. I love that Andrew Schorr brought that up.
Schorr also asked about CAR-T, one of the other topics that Lymphoma folks have been excited about lately. Dr. Leonard pointed out that, right now, only acute Lymphomas have seen trial results (though these include aggressive Transformed FL). He thinks they are very helpful for some patients (they have certainly been helpful for Ben and for William's wife -- I've mentioned them before, and you can read about their experiences and more on CAR-T at the CAR-T and Follicular Lymphoma Blog.
Despite their successes, Dr. Leonard tells his patients that about 1/3 of people who take CAR-T have a durable response, lasting more than a year. Another 1/3 have a shorter response, less than a year. And about 1/3 don't have a response. And he also makes clear that there are some potentially serious side effects. And, more importantly, he considers this the "1.0 version" of CAR-T, and thinks it will keep improving as researchers learn more about it.
Schorr then asks Dr. Leonard what he would tell a brand new FL patient if the patient asked if he was hopeful about the future.
Dr. Leonard, I am happy to say, is very hopeful about our future. He has seen outcomes improve over the last few years, and we still haven't seen long-term results for some more recently approved treatments. He expects things will keep getting better for us (and he encourages us to pay attention to clinical trials to see if there are any that might be appropriate for us, and move us all along).
Finally, Schorr asked what kinds of questions a new patients should ask an oncologist. Dr. Leomard has some good advice, including asking about what the goals of the treatment might be.
I encourage you to watch the whole video to see what else he has to say.
Thursday, June 28, 2018
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