Are FL Patients Being Cured? (And Should That Be a Goal?)

I've been watching a series of videos published earlier this month from 2019 Lymphoma and Myeloma conference tat took place last November in New York.  (The videos are new, though the content is almost 6 months old.)

One video has intrigued me. It has the kind of generic title "Panel Discussion on Follicular Lymphoma," though the video itself seems to be from a symposium at the comference called "Moving Forward in the Treatment of Relapsed/Refractory Follicular Lymphoma." The participants aren't listed in the video description, but there is a link to the program that lists them as Drs. Carla Casulo, Bruce Cheson, Richard I. Fisher, Thomas M. Habermann, Peter Martin, and Craig S. Sauter. Kind of a Lymphoma Rock Star panel.

Because this short video (8 minutes) is part of a larger event, it isn't as focused as some others I have seen. It starts with a question from the audience, but after a couple of minutes, the moderator moves on to a couple of things. First, he asks the audience (which is made up of oncologists) to raise their hands if they think chemotherapy has a role in the treatment of Follicular Lymphoma. (To be clear: he means traditional chemotherapy -- CHOP, CVP, Bendmustine.) The question is even asked because so many non-chemo treatments have become available in the last few years.

Interestingly, most of them thought there was still a place for chemo in Follicular Lymphoma (something that upset Dr. Cheson). [For what it's worth, this non-doctor Cancer Nerd thinks so, too. Maybe some day we'll live in a world without chemo, but it still seems pretty useful right now for aggressive FL.]

The  the panel turns to a different question: If we hope to cure FL, should we stop encouraging watching and waiting?

It's an interesting question, and maybe a strange one to ask (linking cure and watch and wait), but I guess the basic idea is, we can't cure anyone if we don't treat them.

The answers were also interesting. One panelist asked how we defined "cure," and pointed out that the assumption behind the question is that treating early is more likely to lad to a cure (and, at the same time, holding off on treatment means a cure is less likely). He points out that the assumption is wrong -- many people have probably had FL for years before diagnosis, so it's impossible to tel what "early" treatment is. He also thinks seeking a cure might not even be the best strategy right now.

Another panelist though that thinking about "cure" that way was "limiting our thinking." As he says, 5 years after diagnosis, 80% of people with FL are still alive. And there is a 19 year median Overall Survival for a group of patients who are usually diagnosed in their mid-60's, then many people will die of something else -- meaning we can probably consider them "cured" of their FL.

[Before I move on, let me emphasize that: this lymphoma expert says we probably have a median Overall Survival of about 19 years for Follicular Lymphoma patients. When I was diagnosed 12 years ago, it was considered 8-10 years. Just take a minute to enjoy that statistic. He doesn't give a source for it, but it's in line with a lot of other things I have read.]

Another points out that early treatment does not mean longer OS. The benefit of treatment seems to come at relapse, not with initial treatment. Their first treatment, or watching and waiting, seems to have the same Overall Survival. About 20% of patients didn't need treatment even at 10 years.

Another panelist thinks the most important thing to do in making a difference is to focus on EFS24 and transformed patients. Until they can be identified and treated successfully, then we really can't talk about "cure."

Finally, the last panelist point out that a presentation at ASH last year showed that DNA tests found that as mnay as 80% of ling-term patients (those around for 20 years after diagnosis) found no trace of FL DNA, and so maybe this could be a tool to determine whether or not they could be considered "cured."

Lots to unpack there.

If this panel is representative of the field, then there are some lymphoma researchers who think we aren't ready to even think about whether or not Follicular Lymphoma can be cured, or if it's even a good goal for FL as a whole.

Others think there are some FL patients who have been cured, but we aren't ready to say the disease is "curable" for everyone.

And others think there is a significant enough number of FL patients who have lived long enough, waiting for the FL to return, and never seeing that day come, that maybe we can consider them as being cured.

Personally (again, for what it's worth from a non-doctor), I'm a little hesitant to think that a cure is a label we should be using. Until we find a treatment (or more than one treatment) that provides a very long-term remission, I don't think I can psychologically allow myself to believe it won't ever come back. And I say this as someone who hasn't needed treatment in 10 years.

But I am very happy to look again at that 19 year Overall Survival, and to think about my own experience, and the experience of many, many others, and be happy to know that we are in a place where there are lots of treatments available to us, and lots more being developed, that offer the chance to live longer lives than people who came before us. Whether the future brings us treatments that "cure" us, or that allow us to live long lives with a good quality of life, I'm happy either way.

And I think we're moving ahead with that, a little more al the time.