Found a nice video of a talk from the 2019 Great Debates and Updates in Hematologic Malignancies meeting. The video is called "Update on Upfront and Maintenance Therapy in Follicular Lymphoma," and the person speaking is Dr. John P. Leonard of Weill Cornell (and certified Follicular Lymphoma Rock Star).
The talk is aimed at other doctors -- you can tell that by the way Dr. Leonard speaks ("If you are considering certain treatments for your patients...."). It's also pretty thick -- lots of medical terminology.
Dr. Leonard's purpose is to discuss how he typically treats certain types of Follicular Lymphoma patients, and talks about his decisions in terms of recent clinical trials in FL. Sometimes he agrees with what the trail suggests an oncologist should do, and sometimes he doesn't.
I like looking at videos like this (or reading articles that do the same thing). It gives me a good sense of what a top FL doctor is thinking, and how recent research is influencing his decisions. It makes me feel like I'm up-to-date on what's happening with my disease.
He says he always looks at the information he has about the patients, and then divides them into three groups. He handles treatment decisions differently for those groups.
The first group is patients with limited stage or localized disease -- usually stage 1 or 2. For these patients, watching and waiting might be fine. There are some patients who could actually be cured with radiation. He comments on the idea of "curing" patients. He says his thinking on this is "evolving." He looks at a 10 year study of radiation versus CVP chemotherapy. The chemo patients had a better Progression Free Survival, but the Overall Survival was about the same for both groups. His personal approach tends to avoid chemo with this group: watch and wait when possible, try radiation when necessary, maybe try Rituxan. But he also tries not to put too much emphasis on a "cure." For some patients, they can get a "functional cure" -- not an actual cure, but also not needing treatment ever again, especially if they are older.
The second group is the advanced stage, low tumor burden group -- stage 3 or 4, but without symptoms. (This is pretty much where I was at diagnosis.) He likes Rituxan for this group (again, this is how I was treated.) Watching and waiting is an option, too. But like the first group, lots of treatments have different PFS, but the OS. In other words, more aggressive treatments might mean more time between treatments, but they won't make patients live longer overall. He talks about Maintenance with this group, too. The RESORT trial showed that, for patients who only had Rituxan as a treatment, Rituxan Maintenance (regularly scheduled doses of Rituxan after the first doses) doesn't help any more than just waiting until Rituxan is necessary.
He thinks watching and waiting is fine for this group, too, and he likes to take that approach, even for a little while, because he thinks it helps the patient get used to the idea of having a chronic cancer, one they may need to deal with for a long time. He avoids chemo if he can, though if a patient needs it, he certainly gives it -- and the patient is OK with the trade-offs that come with longer PFS.
For the third group, advanced stage, high tumor burden, he considers chemo. He usually goes with Bendmustine over CHOP -- same OS, but usually fewer side effects.
Again, the Maintenance issue comes up here, though the PRIMA trial found that Maintenance improves PFS but not OS (that is definitely a theme).
He also talk about the GALLIUM study, which looked at chemo + Rituxan versus chemo + Obinutuzumab, both followed by maintenance. No OS difference. The O group had longer PFS but the R group had fewer side effects.
He also discusses the RELEVANCE study, which looked at R-squared (Rituxan + Revlimid) versus R+chemo. This was the first study to show a non-chemo option doing as well as chemo. They had different side effects, so it's a matter of thinking about which option is based for each patient.
He also thinks that, for patients with fairly low risk, PET scans should be avoided as much as possible. An exam, or the patient's own noticing of symptoms, are just as effective, but without ther radiation.
Finally, Dr. Leonard thinks it's important to remember a "return to normalcy" -- because many of us will live with FL for a long time, it's good for us to have long periods of feeling and living "normally."
There are a lot of clinical trial results discussed here, and a lot of medical terms. In a lot of ways, they don't really matter. I mean, if you're a Cancer Nerd like me, sure, they matter, and it's fun watching the video while also typing notes and smiling when you realize that you know what he means when he uses a big word.
But more important are the general lessons that come out of this.
Like I said, Dr. Leonard is a Follicular Lymphoma Rock Star. And that's not just because he has a list of research publications in medical journals that would sink a small boat.
It's because, as he is talking to this group of doctors about research, he is constantly reminding them to think about their patients, talk to their patients, listen to their patients, and make decisions with their patients.
Follicular Lymphoma is frustrating in some ways because there is no "best" way to do things. we have lots of options. Many of them come down to Quality of Life. Do we want a treatment that will give us more time until the next treatment? And if we do, are we willing to put up with the side effects that come with it? That's a decision that we all have to make ourselves, but we can't make it without an honest, informed discussion with our doctor.
I like to think all doctors would be that way with their patients. And this is clearly a talk that's given to a bunch of clinicians, doctors who treat patients, rather than a bunch of researchers. But it's nice to hear a discussion of research where the speaker is always reminding other doctors about their patients. It's very Rock Star of him.
Thursday, April 18, 2019
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2 comments:
Hey Bob - I've been reading your blog on and off since last August, when I was diagnosed with FL at age 36 and was curious to hear others' stories. Thanks for your writing. I connected to this post especially because I am very fortunate that Dr. Leonard is actually my oncologist! He's really great, as you know. Because I'm grade 1-2, I haven't had any treatment yet - just "watching and waiting." I feel so grateful to have Dr. Leonard, who talked me through what the course of this could look like, as much as anyone can. His optimism and your story make me feel really fine about the whole thing. There are actually many days that I don't think about FL at all! When I do, I appreciate being able to read your blog. So thanks!
Hi Hannah. Wow -- 36. You beat me by 4 years. It took me a good 6 months to not think about it, so you're ahead of the game there, too.
I've never met Dr. Leonard, but he seems great. I'm glad to hear he's as good as he seems online.
Thanks for reading, and good luck with things. Keep us updated.
Bob
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