Interesting research from ASH on Overall Survival, one year after diagnosis: If things are quiet after one year, you're in pretty good shape.
Researchers wanted to know how important 12 Month Event Free Survival (EFS12) was in predicting Overall Survival (OS). In other words, if a Follicular Lymphoma patient went 12 months from diagnosis without needing treatment, having the disease behave more aggressively, or relapsing, would that be an indication that they had a better chance at longer Overall Survival? The quick answer is, yes, is does indicate that.
The researchers (from the Mayo Clinic and the University of Iowa) looked at 936 FL patients treated between 2002 and 2010, and then at another 153 from Lyon, France. They looked only at patients with grade 1, 2, or 3a Follicular Lymphoma -- no one with B symptoms, transformed lymphoma, or DLBCL. (That's important -- these tend to be the least aggressive stages of Follicular Lymphoma, though about 23% had other factors that made them "high risk" on a FLIPI scale.)
The results: Overall, patients with Follicular Lymphoma had a lower Overall Survival than the general population, no matter what stage they were diagnosed at. But patients who had an Event (progression of disease, relapse, need for treatment) within 12 months after diagnosis had a much lower Overall Survival.
This study is pretty interesting, but it requires a whole bunch of comments:
First, in a way, it isn't surprising: No events in 12 months indicates a fairly slow-growing variety of Follicular Lymphoma. For patients who maintain that slow growth (and I include myself), improved OS just makes sense. Assuming that slow growth stays.
Second, not everyone maintains that slow growth. As much as I'd love to think that things will always stay this way, I also know that there's no indication that slow growth at first means slow growth forever. Something like Transformation is unpredictable. It happens to people with more aggressive FL, and it happens to people who have gone years without treatment.
I think that's important to remember. Don't get cocky, Indolent Lymphoma People.
Third, this research looks at people who were diagnosed, in some cases, over 10 years ago. The world of Follicular Lymphoma is changing. The stats look at patients that were mostly treated with chemo + Rituxan, straight Rituxan, or Watch and Wait. Any of those approaches might be mostly off the table in a few years, given the pretty rapid development of targeted therapies like various inhibitors. There's the chance that those treatments change the game in huge ways, and that they halt the kind of aggressive disease growth that this research assumes is happening. No guarantees there, either, but it's worth remembering.
Fourth -- and maybe this is important enough that it should have been First -- statistics are numbers, not people. Particularly with such an unpredictable disease as Follicular Lymphoma, an Event within 12 months ultimately means nothing for an individual. This research describes trends, not guarantees. And they are historical trends at that -- stuff that happened to other people in the past.
We always look to what happened in the past, I know, when we're trying to predict the future. And really, that's mostly we have to go on. But this is a good reminder to keep the focus on what each of us has to deal with now, what is available to us now. No sense in worrying over what happened to someone else 10 years ago (or bragging about it, either.)