Monday, November 30, 2015

ASH: Life Expectancy for Follicular Lymphoma

Another review of an abstract from ASH.

This one is for a session called "Life Expectancy in Follicular Lymphoma Is Mainly Determined By Response to First Line Treatment: A Long-Term Survey of 597 Patients."It looks at 597 FL patients from two centers in Italy, and when the title says "long-term," it means just that: the patients were treated between 1976 and 2012.

Let me give an important reminder before we go any further: the world of Follicular Lymphoma research was very, very different in 1976. How different? Well, Rituxan was approved in 1997 and is made from mice. Some treatments approved in 1976 were made from brontosauruses.

Seriously, though, things were very different in the "Pre-Rituxan Era," and it's important to keep that in mind. As my old pal Dr. C told me a long time ago, anything you read online about Follicular Lymphoma is already out of date. And any study that looks at patients from 1976 to 2012 isn't taking into account any of the awesome new stuff that is in the development pipeline right now. So anything good that you hear, expect it to be even better. And anything bad that you hear, assume they are working on making that better, too.

Now, on to the research:

As the title says, in looking at these nearly 600 patients, the researchers found that one big factor in Overall Survival was how well patients responded to their first treatment. Patients who were fully refractory (that is, they didn't respond at all to their first treatment) had a median Overall Survival of just 2.7 years. Those with early progressive disease (that is, they responded to treatment at first, but the disease came back soon after) had a slightly better Overall Survival of 5 years.

For those who responded well to their first treatment, the median Overall Survival is 32.6 years. That's pretty dang good.

A couple of comments about those low numbers, in case anyone is in a panic:
First, remember that Overall Survival measures survival from any cause, not just FL. That includes heart attacks, snake bites, and being crushed by dinosaurs when trying to get cell samples.
Second, remember too that it's a MEDIAN Overall Survival. that means half of the patients in that sample had an OS of less than 2.7 (or 5) years, but half had an OS of MORE than that number. It could have been 2.8 years, or it could have been 28 years.
Remember that statistics like this don't predict what will happen to any individual. They are most useful in figuring out trends and deciding how to deal with those trends. In this case, the researchers think that these numbers mean researchers need to do a better job of figuring out which patients will be refractory to treatment and coming up with strategies to deal with that immediately.
(And I think it's possible that they already have. Some recent research seems to show that people who relapse very early on might need to be considered a different sub-group of FL.)

Now, for that group that responded well to their first treatment and has a median Overall Survival of 32 years: the same warnings apply for them. Median means half are on each side of that number, and there are other factors in the research that show how all of that plays out. For example, patients over 60 have a much lower OS than those younger than 60. And patients who had Rituxan have a higher OS than those who don't. And patients with bone marrow involvement have a lower OS than those without it.

But even those numbers don't say anything about individual patients.

Here's my take on it all: Like I said at the beginning of this post, there is a lot that has happened since 1976 that we should be happy about. The high OS numbers for some patients show us that. I remember looking at Wikipedia's Follicular Lymphoma entry when I was diagnosed in 2008 and seeing the median OS at 8-10 years. We're at 3 or 4 times that now, according to this research. (That 2008 number was probably a lot lower than it should have been, but still -- things are improving.)

And even those low numbers, while scary, need to be taken the right way. We are learning more and more about how FL works, on a genetic scale. In other words, researchers are identifying the tiniest bits of our cells that are out of whack and causing our disease to behave the way it does. Every day we get a little closer to being to able to pinpoint which treatments are likely to work with which out-of-whack cell pieces. And in the meantime, we have more treatments to try, more arrows in our quiver (thanks again, Dr. C) if that first treatment does fail. A heck of a lot more than we had in 1976, for sure. (Heck -- Rituxan was still 20 years away back then.). So all is not lost.

Lots of hope here, folks.


MJ Adamucci said...

Thank you for posting this. i am a 12 year survivor who was treated with RChop.
I still worry about relapse, but info likes this puts it in perspective for me.
Much appreciated

Lymphomaniac said...

MJ, Twelve years is pretty impressive. Congratulations. Amazing how the worry never really goes away completely, isn't it? But I'm glad the post eased your mind, even just a little. Take care.

Anonymous said...


For "they responded to treatment at first, but the disease came back soon after" was the soon after 6 months or less?

Lymphomaniac said...

Yes -- "within 6 months" was the language they used.