The Follicular Lymphoma Foundation has posted the video of its second webinar on their web page. The webinar is called "How Close Are We to Curing Follicular Lymphoma?"
It's definitely worth watching. And I'll spare you the suspense for an answer -- we're on the right path, but not really close. As in, we're at least a few years away.
The webinar features Dr. Mitchell Smith, who is the Chief Medical Officer for the FLF, along with Dr. Loretta Nastoupil from MD Anderson. At one point, they are interviewed by Nicky Greenhalgh, who founded the Living with Follicular Lymphoma group on Facebook (I know some of you are members of the group, as am I.)
As the speakers acknowledge, it's kind of difficult to determine if or when FL is "cured." It's not like other cancers, where very often, someone who has been in remission for 5 years is considered cured. With FL, many patients get 5 or more years of remission, but then have the very slow-growing disease show up again. So traditional notions of "cure" don't really apply.
Some oncologists (including the two speakers) refer to "functional cure" for FL. This means a patient might still have the disease, or still has a chance of it returning, but lives a normal life expectancy with a decent quality of life, and dies with the disease rather than from it. It's not hard to imagine -- a 65 year old person in the U.S. is diagnosed with Follicular Lymphoma (let's say grade 1, stage 3 for this example). Didn't know she had it. She watches and waits for two years, then has R-Bendamustine and gets 10 years of remission. Some nodes pop up, but not enough to treat, and stays that way for 2 years. So that's 2 years + 10 years + 2 years = 14 years living with the disease. 65 years old + 14 years = 79 years. Just about a normal life expectancy.
Was she cured? No. Did she live with the disease in such a way that she might as well have been? Some would say Yes.
Of course, I say this as someone who has gone 13 years without treatment. I've never had a clean scan -- there has always been a little disease luring about. So I don't consider myself cured, and I expect that at some point, I'll need treatment again. I am nowhere close to a "normal" life span, but I expect to love that long, at least.
The speakers identify some of the things that make a cure so difficult. One big issue is the lack of "patient-specific tools." Because FL is so heterogeneous -- it's almost like a different disease for each patient -- it's hard to think of one thing that will result in a cure. It's more likely that we'll have a bunch of different treatments that result in long-term remissions for different patients. What works for me might not work for you.
But for that to happen, we need to identify biomarkers -- a gene or a protein that can be targeted with a specific treatment. But different patients will have different biomarkers, so one treatment won't work for everyone. Researchers are having a really hard time identifying those biomarkers. But they're making some improvements.
Another problem is figuring out why FL keeps coming back. Is it because some cells are missed by treatments, but they are too small to see on a PET scan? (Maybe a liquid biopsy will help with that, but we don't have an accurate one ready yet.) Or is it that all of the cells are wiped away by treatment, but there is some mechanism that is untouched by treatment that causes new cancer cells to form later? Obviously, knowing the answer to that question will help with a cure.
So, an interesting webinar. It raises more question than it answers, really, but it does give a good sense of which questions we still need to know more about. And that's not a bad thing.
If you can find 45 minutes for the webinar, it's worth the time. Aimed at patients, so it's fairly easy to understand.
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