The most recent issue of the journal Blood includes an important article called "Outcomes of Transformed Follicular Lymphoma in the Modern Era: A Report from the National LymphoCare Study (NLCS)." Transformation, for those of you who are new to this, is the process that sometimes happens to Follicular Lymphoma, where it transforms from a nice, slow-growing indolent disease to a not nice, fast-growing aggressive disease.
The article shows us the most up-to-date information we have on transformation in Follicular Lymphoma -- the thing that many of us fear most about our disease.
The reason we fear transformation so much is that it has always had a low survival rate -- just 1 or 2 years. So let's get to the first bit of good news from this article -- the Overall Survival rate for patients with transformed FL is about 5 years. That's a darn good jump.
So now that the most important news is out there, let's step back a little and look at the study. It is part of the very large National LymphoCare Study, which looked at data from almost 2700 FL patients from 2004 to 2007. The study is observational -- they didn't give any specific treatment, but instead kept track of what happened to all of these patients and how well they did.
For this study on transformation, researchers looked at 2652 patients, and followed up with them for more than 6 years. They found that 14.3% of the patients had transformed.
(A quick comment on this: 14% is on the low end of the estimates that have been thrown out there. I've seen numbers in a bunch of places that say anywhere from 12% to 50% of FL patients will transform. So the 14% number is comforting, though I'm not convinced that it's the last word on transformation rates.)
Another interesting bit of information: patients who received treatment right away had a transformation rate of 13.4%. Patients who were first observed (that is, did some watching and waiting for more than 90 days) had a transformation rate of 17.8%.
(As a watch-and-waiter, I should have a reaction to that number, and I do. But it's a pretty mild reaction. I don't see a 4% difference as all that significant, though I think it is statistically significant. It's still better than the 30% or 50% rate I see other places.)
Interestingly, though, while the transformation rate was a little higher for patients who were observed, there was no difference between the two groups in Overall Survival. So a watch-and-waiter might have a little higher chance of transforming, but the outcome wasn't any different than someone who received treatment right away.
Also interesting -- patients who received only chemotherapy, without Rituxan (that is, CVP or CHOP instead of R-CVP or R-CHOP) had a transformation rate of 18.3%, even higher than the watch-and-waiters. Fascinating.
There's more in the article, and it's worth a look, if you like that kind of thing.
So what does all of this mean?
Well, in my humble opinion, the increase in Overall Survival from 1 or 2 years to 5 years is a big deal. Given when the information was collected (2004 to 2007), it seems like maybe Rituxan is responsible for that jump (?). That's completely speculation from a non-expert, but that's about the time Rituxan use was really in full swing.
And while I said this was the most up-to-date information we have about transformation, it's important to look at those dates again -- it was collected almost 10 years ago. That doesn't make it less valid. Collection ended in 2007, then there was a follow-up period of almost 7 years (2013-2014), then the article was written and peer reviewed, so here we are in August 2015. That's a carefully researched and written article, and we should be grateful for that. But it also means that it doesn't account for any treatments that have become available more recently -- Bendamustine, Revlemid and R-squared, RadioImmuno Therapy, Ibrutinib, Idelalisib, all kinds of inhibitors. We won't know for a while what kind of long-term effect these treatments might have on transformation, but I'm willing to put my hope into thinking the effect will be positive. Things could be even better than we think right now.
And finally, as for the various statistics on rates of transformation for each initial treatment type -- the differences seem so slight to me (4 or 5% between the best and the worst) that I can't imagine making a treatment decision based on that. And no one is suggesting we should. I certainly don't regret my decision to watch-and-wait, and neither should you -- or whatever decision you made back then.
The bottom line is, the study gives us some reason to be optimistic about transformation. It's still a scary thing, but it's looking better -- lower transformation rates, and higher survival rates. So let's focus on that and hope that future studies bring us even better news.
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3 comments:
Loving all the positive news you are reporting. Please keep posting!
Hi Bob
Great news !
There is one thing I always asked myself about the definition of watch and wait, and its implication on outcomes.
Watch and wait is generally delaying treatment to the point in time, when the clinical situation makes it necessary to treat.
I know its a simplification, but its a rough description of what it is. If the clinical situation is advanced to that point at first diagnosis, treatment starts immediatly. The only difference to the watch and waiters, which have obviously been diagnosed a bit earlier, is a time period they have been observed without treatment. If siagnosis is too late, than one could say, that makes the difference of outcome. But what is too late ?
What is the meaning of 90 days watching and waiting in such a context ?
What about someone whe has watched and waited for 60 days ? The only difference to the 120 watch and waiter was the time. But the process of Lymphoma growth in the 60 days difference between the two, would have been the same. One knowing it, and the other not yet for the difference of the 60 days.
Why in general to watch and wait is another story, that is clear. Because there is no benefit in immediate treatment.
Best regards
Tom
Tom, I hear what you're saying -- diagnosis is kind of an arbitrary starting point. In some ways, we're all watching and waiting, but don't know it. The unknown w and w point began when our lymphoma started, even though we didn't know it yet. So any studies that make comparisons between watching and waiting and beginning treatment immediately are kind of working on a false basis in the first place.
It's interesting -- now that you have me thinking about it, I'm not I've seen too many studies that, like this one, even put a limit of what counts as watching and waiting, and what counts as "immediate treatment." Saying "less than 90 days" is kind of unusual.
But I suppose they need to have some kind of starting point, especially when the whole observation vs treatment issue is still so controversial, with no real solid evidence that shows one is better than the other.
The most important thing is being comfortable with whatever decision you make.
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