My Apologies

I started to write this as a comment, in response to a comment by Paul on my first ASCO post. But as I write it, I'm thinking I should probably put it here where it's easier to see.

Let's start with Paul's comment:

My Doctor over at the City of Hope near Arcadia, CA was saying CAR-T was a possible cure to follicular lymphoma should mine relapsed and highly encouraged me to go that route. Told him I do not want to be the experiment. In your last blog, you stated a 95% chance of FL returning. I was disheartened yesterday seeing this. Was hoping for better odds. I do hope that CAR-T ends up being a cure for FL at some point. I am encouraged that an oncologist says 20 years or more a person can live with FL. I'm still trying to see how. If first line on average last about 3-3.5 years, and 2nd lines and beyond usually are less effective, a person can be doused with so much toxicity not sure how they make it that long. Thank you for all the great information you provide.

Paul B. 

And now my response, because there are a things to reply to here.

Hi Paul.
First off, I should apologize to everyone. I didn't do a great job with that post. If you read Rodrigo's comment, you saw that I might have messed up the numbers (though I still think I read them correctly and they were revised before I published the post). And here, with the "95% return" comment -- I could have stated that better. Not a great post. Just too much of a rush job. Life has been getting in the way lately.

So let me refine what I said, and maybe add a little more detail.

I'll blame the abstract a little bit for this, because it's not very clear, though I'll blame myself most for not pointing out that it was unclear. The abstract says " We selected pts aged ≥18 years, with an initial FL diagnosis (ICD-9-CM: 202.0x; ICD-10-CM: C82.0x) between January 2011 and July 2020, who had received ≥1 line of therapy (LOT) for FL (follow-up ended September 2020)." Later on, it says "Most pts received up to 2 LOTs (n=2258 [94.8%])." (My emphasis, not the researchers'.)

That's two times saying the same thing, but in two different ways:

 Patients had greater than or equal to 1 line of therapy = Most patients received up to 2 lines of therapy  = most patients had either one or two rounds of treatment. 

As I read that, I took it to mean most patients had two lines of therapy. I'm less confident that the statistics say that, though I'm still not sure exactly how many patients had just one line of therapy. 

More importantly, to respond to Paul's concern, I think the sample of patients studied is skewed toward those who were diagnosed closer to 2010. That's important for a couple of reasons.

First, I think this is skewed because of the treatments being discussed. The most popular are fairly old school treatments: Benda, CHOP, Rituxan. There isn't much Obinutuzumab, and R-squared and CAR-T aren't even mentioned. Now, it's a necessary thing -- to collect as much data as possible, researchers have to go back a few years. But doing so gives equal weight to patients, treatments, and practices that are 10 years old. That matters -- the FDA has approved 14 treatments for FL since 2010. Each year of this study means looking at patients who had fewer treatment optionss available, and most treatments show some increase in effectiveness over what has already been available (others show better safety, or are completely new types of treatment).

So a retrospective study like this is going to have some limitations built in. As much as it claims to show "where we are" (and I used that language myself), it's more like "where we've been" -- not what's happening right now, but what happened 10 years ago, 9 years ago, 8 years ago, etc. That's not the same thing.

There are still plenty of patients getting B-R and R-CHOP, but more and more are getting CAR-T, Rituxan biosimilars, Obinutuzumab, and R-squared. I say that based on my sense of what's happening in online discussion groups, where patients describe their treatments. Ideally I'd have numbers from 2020 that showed all of that. I don't have them, and I don't think they're available yet.

But here's the point: treatments are getting better. More effective and safer. More Effective means more time between treatments, and possibly enough time that there is a cure, or an "effective cure" (a patient dies with the disease at same age as the general population's median life expectancy. And Safer means the toxicity from newer treatments is less than with something like traditional chemotherapy. 

The problem is, we can't really know how much more effective and how much more safe until its measured over time, say 10 years. And by that point, the data is in some ways outdated. 

As Dr. C, the lymphoma specialist that I saw many years ago, warned me back then: Anything you see online is already out of date. 

And one quick aside -- CAR-T might very well cure some people. That's another thing we'll need time to know for sure.

So, to sum all of this up: Paul, I absolutely understand your worries, and I'm sorry that the things I wrote contributed to them. That's never my goal. I like to think I'm am hopeful but realistic,but most of all accurate, and I've thrown away of dozens of posts that I started by never finished because I wasn't completely sure about what I was saying. I should have taken the time to be as clear and accurate as I can be. I owe you all that much.

At the same time, I do still think there's plenty to be hopeful about. The abstract shows Time to Next Treatment for first line treatments is a median of 79.4 months -- about 6.5 years. For 2nd and later lines, it's about 3 years. (That's much higher than the 3.5 years you're giving the first line treatment, Paul.)

And remember, that's the median, which means half will be lower than that, but half will be higher. I'll give myself as an examle of the "half will be higher" -- 11+ years from Rituxan. Plenty of others have gotten that and more from B-R, R-CHOP, and a whole lot of other treatments. 

And then there's median Overall Survival, which hasn't even been reached yet for this study. 

I don't know if all of this makes anyone feel better, but it makes me feel better to remind myself of these things, and to make sure I'm being clear. 

I'll have more from ASCO soon. Take care, everyone.