ASH: Are FL Patients Being Cured?

OK, I'm finally getting to the link that Jacqeuline sent a few days ago, with a press release about an ASH presentation. Drug companies and universities send out press releases after the conference when they think they have something to brag about that cancer news sites might want to to share.

This one is certainly going to get people talking.

The presentation is called "Long-Term Follow-up of Follicular Lymphoma (FL) Patients (pts) Demonstrating Undetectable Minimal Residual Disease (MRD) Using a Next-Generation Based DNA Assay: Support for FL As a Curable Disease."

If you look again at the last line of the title, you can see why Jacqueline (and the researchers) are excited: "Support for FL As a Curable Disease."

So here's the deal. As I'm sure we all know, Follicular Lymphoma is considered an incurable disease. There are some circumstances where FL might be cured (see below), but for the most part, we're stuck with it. How the disease behaves is a different matter, and there's a wide range of behaviors: for some of us, it's really aggressive, and a patient might need treatment within a couple of years of having chemo. For others, it can grow slowly over years and years, and treatment might never be necessary. And then there are hundreds of variations in between.

But whatever little (or big) quirks our individual disease gives us, we all pretty much live with the idea that we either have active FL, or it's probably coming back at some point.

This research asks you to rethink that idea.

The study involved 60 patients. All of them had received treatment that had put them in clinical remission (meaning there were no signs of relapse in a blood test, a physical exam, etc.). The patients received a pretty wide range of  treatments -- R-CHOP, B + R, RIT, Stem cell transplant, double MAB (Rituxan plus another monoclonal antibody). There weren't any that received just Rituxan in this study (which would have been very interesting to me, as someone in that situation.)

The 60 patients had their biopsy samples looked at -- that is, the samples that were taken before they were treated -- and had the samples put through a new type of analysis that can identify changes in the genes that are related to FL. The analysis allows the researchers to identify MRD, or Minimal Residual Disease -- the changes in genes that remain even after the cells look like they're all cancer free. (See the Leonard List post for more on why MRD is becoming more important.)

After treatment, and after patients were said to be in clinical remission, another sample was taken so the FL-related genes could be analyzed again. The idea is, we have a good idea of some of the genes that get messed up when a patient has Follicular Lymphoma. Because certain genes do things like control when a cell is supposed to die, a messed up gene can keep a cell alive, and that's when you get cancer. So a test that can look at those genes can basically tell you if they're still messed up, so even if a patient seems to be in remission, the cancer might come back later (like we assume it will do with the incurable FL). Everything might be OK for now, but those genes that keep cells alive forever are still there, waiting to be jerks.

But what this test found was that some of those genes, two years after getting treatment, were back to normal. They aren't waiting around to tell the cells to stop dying at some later time. No MRD.

There were 43 patients whose samples were analyzed after treatment, and 38 of them did not show any genetic evidence of disease.

If there are no genetic mutations hanging around in the cells, can we say that these patients have been cured?

Maybe.

The researchers are optimistic, but also caution that this study involved a pretty small number of patients, and a fairly short follow-up. The lead researcher calls it an "important first step."

And it's important to be clear -- this study isn't about a new treatment that might cure FL. It's about a way of letting patients know, two years after treatment, that they don't have any evidence of disease. It's more about being able to lift that emotional weight off of us. We all learn to live with the idea that the FL will probably come back. This way of testing can maybe give patients some peace of mind.

The idea of FL being curable has always kind of floated around as a possibility. Lymphoma Superstar Dr. Bruce Cheson, who is on the team for this research, is always holding out hope that there may be a cure for FL. There is some evidence that patients with stage 1 or 2 FL might be cured with radiation. And Dr. Cheson and others sometimes talk about a "functional cure" -- a treatment can give a long enough remission that a patient dies of old age before they need another treatment (so the FL wasn't officially cured, but the patient lived a cancer-free life, so maybe that's the same thing). CAR-T and maybe some other newer treatments might be able to use the body's immune system in such a way that it can permanently fight off the disease, so even if FL is present, it's held in check.

So we may be very well be on the path to a cure.

Or at least on a path where we can live as if the FL is cured.

One final thought. If the most important thing to come out of this research is that the emotional burden of incurable disease might be lifted, I'm not sure that's going to happen.

I've talked to enough cancer patients -- people with cancers other than FL -- to know that even after years in remission, there's always that little nagging in the back of their minds that the cancer might come back. I'm not sure a test that showed no MRD would get rid of that feeling. Especially for someone ike me who has already lived with it for 12 years.

But maybe a test like this can show that there really are some patients who are being cured, and we just haven't known it yet. Maybe we can go from labeling this an incurable disease to one where we can say "some patients may be cured." So it might not help a cynical old FL patient like me, but people in the near future might have some of that emotional burden taken off of them, even just a little bit.

Even a little extra hope is a very good thing.