ASCO: Real World Treatment Patterns for Follicular Lymphoma

The ASCO conference starts in a few days, and I'm lucky enough to be able to attend (online), but I've been making my way through the abstracts so I can figure out which sessions will be worth attending.

But I did find one that I can write about without attending the actual session live. And I think it's a good one to begin with. ASCO presentations tell us a lot about our possible future; this one looks at where we are right now.

It's called "Real-world treatment patterns and outcomes in patients with follicular lymphoma in the United States."

The reason I find this so interesting is because it looks at our immediate past -- how Follicular Lymphoma patients have actually been treated over the last 10 years or so. We've seen so many exciting treatments go through clinical trials -- how many of them actually end up in patients' bodies?

The study looked at electronic records for patients from 280 cancer centers in the United States who received treatment between January 2011 and July 2020. The researchers looked at the records of 2383 patients (they didn't count patients with grade 3b and a few other special situations), and measured a whole bunch of things about treatment type and the success of the treatment. And this is important: they didn't count patients who didn't receive any treatment yet, so it doesn't measure active watch-and-waiters.

In that group (and it's a pretty large group), the median age at diagnosis was 66 years old -- very much in line with what we've always known about FL. (I was diagnosed at 40, making me an outlier.) 77.5% of the group had low-grade FL, meaning grade 1 or 2. Again, not a surprise, in my experience. And 75% had advanced stage FL (stage 3 or 4, again not a surprise). 

About 95% of patients in the study had received 2 or more treatments. I think that's important to note. I was told from the start that FL was something that would likely come back at some point (and I'm still assuming it will for me, even though it's been 11 years since I needed treatment). I hope that brings a little comfort to people who relapse -- 95% of the time, it's going to happen. It's probably good to be prepared for it, emotionally, and in terms of a treatment plan. 

As for which treatment were most common, these are the percentage of patients who received these treatments at some point, whether as first, second, or later treatments:

Rituxan + Bendamustine: 52.7%

Rituxan only: 34.1%

R-CHOP: 20.3%

R-CVP: 7.2%

Obinutuzumab + Bendmustine: 3.2%. 

Once again, none of this is surprising to me, given that the study started looking at patients from 2011. Obinutuzumab really started picking up as a Rituxan alternative in the last couple of years, for example, and Rituxan has been around so long (since 1997) that most doctors are probably just in the habit of using it, so they will continue to do so.

 In fact, that attitude probably explains a lot of treatment decisions.

 As for patients who receive a 3rd treatment, it is more common for newer treatments to be used at that point:

R-Squared (or Obinutuzumab + Lenalidomide): 2.3% overall and 19.2% of 3rd line treatments

Inhibitors of all kinds: 1.6% overall, 21.6% of third-line treatments.

Again, to me, this is not surprising. I do like to look at videos and articles from oncologists who talk about how they typically treat FL patients (like this one from a couple of weeks ago), and that pattern holds -- for a fairly aggressive FL, try R-B first, reserving R-CHOP for possible transformation. Then maybe try a different imunochemo, and then try one of the new non-chemo alternatives like those above.

So, as I said, I think this is interesting because it tells us where we are right now -- what kinds of patterns there are in the way FL patients are treated. A lot of that is influenced by things like NCCN guidelines, which make recommendations for treatment patterns. In my experience (having had 5 oncologists myself, and talking to many of you), it seems like a generalist oncologist is likely to follow NCCN guidelines pretty closely, while a lymphoma specialist seems more likely to try something a little different, and maybe recommend a clinical trial. That's not true of every oncologist, but it does seem to be a pattern. My guess is that the same holds true in other countries -- a national health service will recommend a certain pattern of treatments.

 I think if it's possible, it's worth getting a second opinion from a specialist after an oncologist has made a treatment recommendation. It seems to me that there are still some treatments out there (like RadioImmunoTherapy) that don't get much use, but which could be very effective for some patients. A specialist is likely to know if you are one of those patients.

It's also important to remember that is is a retrospective study -- literally a "looking backwards" study that covers almost 10 years. Newer treatments like inhibitors, R-Squared, and CAR-T (which isn't even mentioned) are all very new, and might very well become more popular in the next few years.

So here are the lessons (from me, a non-doctor who reads a lot about cancer):

Get second opinions when you can, from lymphoma specialists. They will know what is available and who it might be best for.

Participate in clinical trials when you can. New treatments and treatment combinations won't get used unless there is data to show how effective they are, and data will only come from clinical trials. If you have the option, give it serious consideration.

Finally, stay informed. The whole idea behind this blog is that it's important to stay informed -- that's why I write, to keep myself informed. I'm not a doctor, and you shouldn't take anything I say as medical advice. What I do hope is that you'll know enough to be able to have a good conversation with your doctor. You'll be able to ask the right questions. You'll be able to say, "I understand why you are recommending that, but what about this instead?" 

So that's where we are right now. I'm looking forward to more ASCO, so I can learn about where we might be going from here.