The Future of Follicular Lymphoma Treatment

About a month ago, I posted a link to a video series from OncLive called "The Evolving Landscape of Therapy for Follicular Lymphoma," which features interviews with two of my favorite Lymphoma Rock Stars -- Dr. Bruce Cheson and Dr. Anas Younes. OncLive does a lot of these video series -- they post a new video every four five days, so the series takes about a month to complete.

It looks like they're getting to the end of this one. It's been a really good series.

The last video is called "The Future of Treatment in Follicular Lymphoma." The good doctors discuss some particular treatments, and how they represent paths that the field might take. Dr. Cheson discusses some kinase inhibitors, for example.

But both doctors also focus on some different issues that are just as important. We would expect them to focus on different treatments and how they work and what we can expect from them. But both doctors also mention a critical part of the future of treatment -- the patient.

Dr. Younes describes the long-term nature of the disease, one that is slow-growing and will probably require multiple treatments over a lifetime. "It's an irritating disease...the anxiety and the inconvenience of coming back and forth for multiple treatments in a lifespan is not ideal."

First of all, I love that he calls Follicular Lymphoma "irritating." I think he's right. It's not that way at first. When we're diagnosed, it's terrifying. But for many of us, as we learn to live with it over time, it becomes....irritating. It's frustrating to not have any symptoms, but to have all the anxiety that comes with waiting for symptoms. I really like that word.

But more important, I love that Dr. Younes recognizes how important Quality of Life is for patients. His solution is a hope that we can eventually have initial treatments that will give us 15 years before we need a second treatment. That's a good, long stretch of time, where maybe we can put this irritating disease out of our heads for a while.

Dr. Cheson also recognizes the need to pay attention to patients' needs. He mentions a new treatment that might be better than one that is currently available, but is less toxic. But is it "better"?  Well, he says, "I think the major issue is the schedule of administration, which is 3 weeks in a row and then a week off. To do this indefinitely, you’re going to have problems with patient compliance."


Very interesting. Sometimes I hear researchers describe Follicular Lymphoma as a "chronic" disease (actually, Dr. Younes uses that word in this video). But if it's "chronic," that means it's going to keep coming back, like, say diabetes. And that means it will need to be treated constantly. And, as Dr. Cheson says, patients are going to have to be willing to keep up the treatment schedule that comes with a chronic disease.


Follicular Lymphoma is different from other cancers. I know all cancers are different, and even FL has a bunch of different sub-types that make the experience really different for all of us. But I really do believe that FL is different on an emotional and Quality of Life level. For a lot of us, we learn to live with this in ways that lots of other cancer patients don't have to deal with.

And so, "the future of treatment" needs to take that into account, as Dr. Younes and Dr. Cheson very helpfully point out.

Whether or not that is actually happening is a different story.

But the important thing is that we patients need to remember that we have a voice, and we need to remember to use it. That might mean being active in working with an individual doctor to come up with a treatment plan that meets our lifestyle goals, and not just one that has a the longest median Overall Survival.


But it also means being active in the lymphoma community when we can, making sure that patients' voices are heard in larger ways, so we have a role in shaping research plans. That's harder, of course, but those opportunities do exist.


Fo now, though, I'm thankful that influential voices like these two Rock Stars are reminding the lymphoma community that patient needs do matter.