Cause of Death in Follicular Lymphoma

First post of the new year.

I've been sitting on an article for over a month, trying to decide how to comment on it, or if I even wanted to.

But I decided it's probably as good an article about Follicular Lymphoma -- and my approach to being a patient -- as I'm ever going to find. So here goes.

The article was published in The Journal of Clinical Oncology, and it's called "Cause of Death in Follicular Lymphoma in the First Decade of the Rituximab Era: A Pooled Analysis of French and US Cohorts."

Death. Ugh. I don't like to talk about death.

But I think there's some good news (along with the bad news that always comes from talking about death) in this study. That's why it seems fitting -- nothing is ever completely positive or negative when it comes to FL, and I always end up looking at the positive.

The study looked at two groups of patients (734 from France and 920 from the United States), and examined how many of them died within 10 years of diagnosis, and what the causes of death were. They found about an 80% Overall Survival rate for the two groups combined. The causes of death were: Lymphoma (10% of the group), causes related to treatments (3%), other cancers (about 3%), other causes (2%), and unknown causes (3%).

I've rounded those numbers, because if I said "10.3%" instead of "10%" or "2.9%" instead of "3%" then it would all seem much more specific and thus more real and we'd all get hung up on numbers. And I don't want that to happen. Doctors and researchers can carry numbers out to multiple decimal points if they like. We're patients. We have other issues to think about.

(And if you still need to remind yourself about why statistics don't matter, look here.)

The authors of the study take two lessons from all of this: First, it's a problem that so many FL patients die from lymphoma. (This includes transformed FL and EFS24 patients -- those who had immunochemotherapy but whose FL returned within 24 months). Overall Survival has increased, say the authors, but 10% is just too high. In fact, right after the article came out, the talk on Twitter among FL experts was that they needed to do a better job at getting that figure down.

The second takeaway is that the 3.0% treatment-related causes is also too high. These include, for example, infections related to treatment because of a weakened immune system, or heart damage. They call for less toxic treatments that won't do more damage than they are helping with. (I think researchers are working hard on this.)

Now, as a patient, I know my first reaction to seeing this study, and those numbers, and some of the commentary, is to focus on the negative. And that is completely understandable. I remember seeing some survival statistics a couple of weeks after I was diagnosed and getting hit very hard emotionally by them.

But I'm always an optimist, as many of you know, and I see lots of reason for hope in this study. Look beyond the title -- anything with "Death" and "Follicular Lymphoma" so close together is going to put you in a mood to look for the negative. So force yourself to look at the positive:

First, the reaction of the Lymphoma community is great. Experts looked at this study, and their first reaction was not "Hey -- Overall Survival is up. We're doing a pretty good job." No, the reaction was, "Not good enough. we need to try harder." Remember that -- good things are coming. These folks are relentless.

Second, Overall Survival for 10 years is about 80%. Do you know what it was when I was diagnosed in 2008? Well, neither do I. But it was a lot lower than 80% -- low enough to put me into a deep depression for two weeks. OS is getting higher.

I think it's easy to focus on the 20%. Don't forget the 80% -- it's 4 times higher than the "bad" number.

Third, in some ways, this study doesn't tell us much of anything new. People who transform are at higher risk of a lower OS. We knew that. Same with EFS24 patients. We knew that, too. Most of us are fortunate enough to be in the 80%. For those who unfortunately are not, there is greater awareness in the last few years that this population needs to be watched carefully and treated as soon as possible. More needs to be done to help them, but awareness is a good first step.

I'm sure some of you have heard the phrase "Follicular Lymphoma is something that people usually die with, no from." I think that study bears this out -- 90% of people with FL will die of other causes. FL is not a good thing, but it remains treatable and manageable for many of us.

So there you have it -- first post of the new year. It sums up my experience as a Follicular Lymphoma patient pretty well. Good news along with the bad. Hope for the future. And a wish that we all hang on tight, take a deep breath, and try not to be overwhelmed by things that seem bad.

I'm looking forward to a good year. I hope you all are, too.