Follicular Lymphoma Life Expectancy

Here's a nice follow-up on  my last post about there being cause for optimism for FL patients:

An article published in the British Journal of Haematology a few days ago says that FL patients who have a Complete Response at 30 months have the same life expectancy as the general population.

The title of the article is pretty much what I just wrote: "Life Expectancy of Follicular Lymphoma Patients in Complete Response at 30 Months is Similar to That of the Spanish General Population."

The Researchers were interested in the idea of CR30. A couple of years ago, researchers found that if  a patient had a Complete Response to treatment that lasted for 30 years, they wouldn't need to wait until half the patients' disease got worse so they could measure a media PFS. Having to wait only 30 months instead of several years means that a treatment might get approved more quickly.

Now, on to the study that was published a few days ago. These researchers wanted to see if CR30 could be used to say something about life expectancy. In other words, could having Complete Response at 30 months predict life expectancy.

They seem to think that, Yes, it can. Patients in Spain who had a Complete Response 30 months after their first treatment (Immunochemotherapy) ended up with the same life expectancy as people who didn't have FL.

To me, this is a very hopeful thing.

When I was diagnosed, I read that the Overall Survival for FL patients was 8 to 10 years. As someone diagnosed at 40, if my life expectancy was in line with the general population, it would be closer to 40 years (give a take a few years -- I wouldn't really care about the exact number at that point).

That's pretty awesome.

Now, there are some important things worth thinking about.

First, this is a statistical study. That is, it looks at a large group of people, not at individuals. I like to tell people who get sad at Overall Survival numbers that a statistic says nothing about an individual. An OS of 8-10 years doesn't mean I'll die in 10 years (says the guy who is alive 11 years after reading that).

That's true of the flip side, too -- none of us is guaranteed to meet the statistical life expectancy. According to the U.S. Social Security Administration, a male born on my birthday has a life expectancy of 32 years or so. Could be more, could be less. None of us knows, of course.

But another thing to consider -- this study looked only at FL patients who had Immunochemotherapy -- some kind of chemo plus (like maybe R-CHOP or Bendamustine and Obinutuzumab). It doesn't say anything about patients who had a CR and had only Rituxan, or had a stem cell transplant, or had R-squared. It alos doesn't say anything about people (like me!) who had a Partial Response at 30 months (a PR with only Rituxan).Again, that doesn't mean those people (like me!) won't have a long life. It just means they weren't part of this statistical group.

The important thing -- the hopeful thing -- is that a full, long life is possible for those of us with Follicular Lymphoma.

It's an easy thing to think when you hear the words "I have cancer" -- to think you'll never see your kids grow up, or you'll never get to do the things you wanted to do.

The word "cancer" does that -- it shuts down minds, and it shuts down possibilities.

But a study like this reminds us that there are no guarantees. No good ones, but no bad ones, either.

So even someone like me -- not someone who was part of this study group -- might very well live as long as I would have if I hadn't gotten that diagnosis a little more than 11 years ago.

That's a great thing.  Hang on to that. Hang on to hope.