As I wrote in my last post, I have been looking for commentary from Lymphoma experts on the 15 year follow-up of FL patients who received CHOP. The researchers are suggesting that 42% of patients in the study were cured. I've been looking at Twitter/X, where there is usually a decent amount of commentary about Lymphoma, as well as in all of the google alerts I usually get.
There really hasn't been a whole lot of commentary. Most of what I have seen has been repeating the results of the study, rather than giving an opinion on it. One of the very few comments I have seen came from Dr. Mitchell Smith, the Chief Medical Officer for the Follicular Lymphoma Foundation. In a Facebook post from the FLF, he was quoted as saying:
"These findings are encouraging and confirm that some patients have very long-term remission after treatment. The challenge remains that we cannot yet predict which patients will be in this group. Follicular lymphoma is a complex cancer, and many patients live with the disease for many years with different treatment approaches. Studies like this help us better understand long-term outcomes while reinforcing the importance of continued research."
The response is measured. It is positive and recognizes the importance of the research, but also makes it clear that there is more work to be done. The more I think about the study, the more this reaction makes sense. We've always known that some treatments give some patients very long remissions, not just CHOP. As I mentioned in the comments last week, I know a few people who have had RIT and are still in remission over 20 years later. That can be true for Stem Cell Transplants as well. And while I have never technically been in remission (I've never had a completely clear scan), I've been living with the disease for 16 years without needing another treatment, after I had six rounds of Rituxan.
What's different here is that this research looks closely at a group of people who received the same treatment. A story about one person in remission is an anecdote, not a research study. This research is large enough, long enough, and rigorous enough, to have its authors dare to use the word "cure." But there is still work to be done, as Dr. Smith says.
Overall, I'd say there is reason to celebrate, but not to rest. It reminds me a little of the scene from the movie Elf (one of my family's favorites). Santa returns from delivering toys and says to the elves "We had another successful year!" The elves cheer, and Santa says, "And now it's time to start getting ready for next year!" The elves immediately go back to work. Worth celebrating, but there's work to be done.
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Speaking of the Follicular Lymphoma Foundation, they have started a new series on their blog called "Science Simplified." In a series of posts, they will discuss some current research in FL in ways that make it easy to understand. Their latest is called "Who Needs Treatment and When?" It discusses some of the research at this year's ASH conference, focusing on GELF criteria. GELF is a French group, Group d'Etude des Lymphomes Folliculaires. In 1997, they proposed a set of criteria for when FL needs to be treated, and when a patient can watch and wait. The FLF blog post discusses an ASH presentation that examines the GELF criteria and how doctors make decisions about when to begin treatment.
You Cancer Nerds will enjoy reading about research. And the rest of you (especially those of you who are watching and waiting) might enjoy reading about the practical implications of the research.
More to come soon. Thanks for reading.
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