Real World Outcomes for Older Patients with FL

I'm way behind on my Follicular Lymphoma reading.

Almost a month ago, the medical journal Blood Neoplasia published an article called "Real-world treatment patterns and clinical outcomes in patients with follicular lymphoma: A SEER-Medicare analysis." It's very interesting, and I want to share some thoughts about it with you.

The article looks at "older" patients, meaning at least 65 years old. That's an interesting definition for "older," but we'll talk about that another time. 

The study looked at data from the SEER database. SEER (Surveillance, Epidemiology, and End Results)  is a massive database of information about cancer patients in the United States. When a patient is diagnosed, their oncologist enters information about their diagnosis, treatment, and outcomes, and researchers can use this database to do retrospective studies -- that is, looking back at patients from the past. I think those two things are important to keep in mind -- the information has to be entered by doctors (which might limit what is in there), and it looks at the past, which might not tell us much of anything about the future. A patient who was diagnosed 17 years ago (like me) had fewer options than one diagnosed a year ago (like many of you). The study covered patients who were diagnosed between 2000 and 2017. That's significant.

The study looked at two things -- the treatment pattern that the patients with FL received (what kind of treatment, how many treatments) and the outcomes (especially how long they lived). The 13,423 patients in the study were all at least 65 years old when they were diagnosed, with the median age being 76 (meaning half were older than 76 and half were younger). The median follow-up was 57 months (just under 5 years).

The researchers found that 38% of the patients in the study never needed treatment, watching and waiting for the entire time they were being studied. So 62% had at least one round of treatment.Of those, 23% had two or more treatments, 9% had three or more, and 4% had four or more. Chemoimmunotherapy (something like R-CHOP or R-Bendamustine) was the most common treatment. This is not surprising, given that non-chemo treatments became much more widely available after 2017 (things like CAR-T, bispecifics, R-squared, and even some inhibitors). 

Maybe most important (from my perspective as a patient) is this sentence: "Survival rates increased significantly over time."

For patients diagnosed between 2000 and 2005, the median Overall Survival was 65.4 months (about 5.5 years). For those diagnosed between 2006 and 2011, it was 83.9 months (just about 7 years). And for those diagnosed between 2012 and 2017, the median was not reached. That means that at least half of those patients were still alive when they did the study, since you need to find a half-way point to calculate a median. 

And keep in mind, too, that these were "older" patients, with a median age of 76. So if half of them were 76 or older, and were living for at least 7 years (or, to age 83), that puts them right in line with the median life span in the U.S. In fact, it's actually better than the current life span in the U.S. by about 5 years. 

That's all very good news.

It's important, too, to point out that the patients in the study who received more treatments had a lower OS than those who only received one treatment. That makes sense -- one treatment likely meant a less-aggressive version of FL. And patients who were POD24, meaning they had immunochemotherapy but had their disease return within 24 months, also had a lower OS. And patients who were diagnosed on the older end of the scale, or who had advanced FL stage, or who had a high comorbidity index at diagnosis (that is, had lots of other health problems) also had a lower median OS.

All of that said, this is an excellent reminder that numbers don't matter. Statistics tell the story of a large group of people, not of any individual patient. And statistics that are 25 years old (when this study began) don't tell us much about people who were diagnosed yesterday. The treatment options available today are so much better than they were back then -- more effective, more safe, just more of them. As someone who has been following all of this for 17 years, I can tell you -- the advances in cancer treatment are astounding.

So the lessons from all of this are clear to me, and it's the same lesson that I've known since I first started really thinking about statistics. The first lesson is -- don't pay attention to statistics. It's too easy to get into your head that numbers are destiny, and if you read that the Overall Survival for some group that you belong to is a certain number, then that must be your destiny. It isn't. It's the median number for a group from the past and has nothing to do with you. You're better off just not even thinking about statistics.

But I also know that patients are a certain way, myself included, and we're going to look at statistics. So if you are so inclined, then go back up to that statistic above. You know, the one that says older patients with FL have a median life span that is in line with the general population in the U.S. Pay attention to that one.

And if you are younger than 65, know that this kind of research keeps pointing out that same thing, no matter what the age of the patients is that are being studied. Taken as a whole, patients with Follicular Lymphoma have a life span that is close to the general population. That doesn't say anything about any individuals, but if you're going to go around reading statistics that don't have anything to do with you, then at least be wise enough to pay attention to the positive ones.