I'm fascinated by studies that ask whether or not Watching and Waiting is worth it for Follicular Lymphoma patients, even though they drive me crazy. It seems like these studies go back and forth with one another -- one will provide some evidence that Watching and Waiting is a better choice than being treated right away, and then a few months later, another study will say the opposite.
I don't think there is any right answer, but I keep reading them anyway, mostly because I want someone to tell me I was right to hold off on treatment for two years.
(Really, I don't need anyone to tell me I was right. I'm coming up on my 9 year diagnosiversary, and I'm still here. That's about as right as it gets. But I'd still like that decision to backed up by science, if that's possible.)
Since there doesn't seem to be any right answer to this question, I was pretty thrilled to see an ASH proposal that asked a different question: is there a better way to measure whether or not Watching and Waiting is an effective strategy?
The session is called "Intervention Versus Observation: What Is the Appropriate Endpoint? Assessment of Endpoints in Patients with Advanced Stage Follicular Lymphoma Who Are Initially Observed." Most research that compares the two options (watching and waiting vs. treating right away) by comparing Progression Free Survival or Time to First Next Treatment, these researchers suggest a better way to measure is Time to 2nd Treatment (TT2T).
Here's the logic: Imagine a trial that involves half of patients watching and waiting, and then measuring how long it takes to get to their first treatment. The other half involves patients getting Rituxan, and then measures how long it takes for them to get to their next treatment. Those two times are compared to see which approach works better.
But this is an unfair comparison. One group is measured by how long it takes to receive their first treatment, and the other is measured by how long it takes to receive their second treatment. What if we looked at that first (W & W) group and measured how long it took them to get to a second treatment?
More importantly, could TT2T be a replacement for measuring Overall Survival? In other words, studies that use that first treatment as a way of measuring success might be stopping their measurement too early. The big question with FL treatments is always "Dies this treatment improve Overall Survival (OS)?" Does TT2T give us a better idea (since it is measured over a longer period) of how well W & W might contribute to Overall Survival?
The answer, they say, is Yes. In a study of 264 FL patients, with a median follow up of almost 11 years, they found that the Time to First Treatment was 43.5 months -- just under 4 years. But the median Time to 2nd Treatment (TT2T) was 151.8 months -- almost 13 years. Median Overall Survival was not reached, so it will be more than 13 years. So the TT2T would seem to be a better measure of Overall Survival when comparing W & W with initial treatment.
The researchers think there needs to be more research before TT2T can be a replacement for OS, and I think there's some value on figuring out whether it can be (Overall Survival measures death by any cause at all, from cancer to heart attack to getting hit by a bus, while TT2T focuses only on how whether the lymphoma has progressed enough that treatment is necessary).
I like the statistics presented, too: 8 or 9 years is a long time between the first and second treatment, and it roughly follows the path that I seem to be on (2 years until first treatment, and almost seven years since and I still haven't needed a second one yet). My first treatment came exactly two years to the day from my diagnosis -- shouldn't that put me in that high risk group that needs treatment within 24 months? But my (not yet needed) second treatment puts me a very different group, one that has a slower-growing for of FL, and seemingly lower risk.
Mostly, I like that this gives us a different way to think about Watching and Waiting, and whether it is worth recommending as a strategy. In the end, that's an individual choice, one that involves an emotional assessment, and not just a scientific one. But it's ncie to have something else to add to the conversation.
I still feel like I made the right choice -- for me.
Before I go, a note about terminology: The researchers use the term "Observation" instead of"Watching and Waiting." I had someone comment a while ago suggesting we stop using the "and waiting" part of that, and just call it "Watching" -- essentially the same thing as "Observation" -- because the "waiting" part brings on unnecessary stress. I use the "W & W" term mostly because it's the term I've been using for almost 9 years, and switching might be confusing to some people. I also think the "and waiting" is kind of unavoidable. We don't just watch -- we expect something to happen. I certainly did. So I respect the idea of going by a different term for a very good reason, but I'm sticking with W & W. It's a more accurate reflection of own experience.