Follicular Lymphoma: Curable?

I've been kind of chewing on an article for a while, partly because it's kind of technical, and partly because I'm still not sure how I feel about what it's saying.

The article is "Curability of Advanced Indolent or Low-Grade Follicular Lymphomas: Time for a New Paradigm?" by Dr. Fernando Cabanillas, published in the Journal of Clinical Oncology earlier this year.

Dr. Cabanillas starts by saying that NHL experts have accepted a particular paradigm (that is, a particular way of seeing things) for a very long time: aggressive lymphomas are curable, and indolent lymphomas (like Follicular) are not. And, he says, maybe it's time to rethink that way of seeing things.

Paradigms are important. They way we look at things shapes the way we approach them. It's a kind of prejudice, in a way: if you think all Irish are drunks, you'll lock up your liquor cabinet when they come to visit. But the problem is, you end up missing out on some nice blarney and Guiness stew.

Bad analogy, even if it's timely. But the point is, if you see Follicular as incurable, then maybe your research focuses only on extending responses, or decreasing toxicity -- something other than finding an actual cure.

And this is exactly what Dr. Cabanillas wants NHL experts to rethink: the limitations that come from assuming Follicular Lymphoma is incurable.

Right now, aggressive lymphomas like DLBCL are considered "cured" if the patient does not suffer a relapse within 2 years. About 95% of the time, this hold true: make it two years, and you are most likely in the clear.

However, if we apply that same criterion to Follicular Lymphoma, we're going to be disappointed. Even if a patient goes beyond 2 years (someone like, say, me), there's no guarantee that the lymphoma is "cured."  Quite the opposite -- most likely, it's coming back. Maybe in 2 years. Maybe in 5 years. Maybe sooner or maybe later. 2 years means nothing.

So one of the things Dr. Cabanillas suggests is, maybe be stop comparing Follicular and other indolent lymphomas to their aggressive cousins. Maybe 2 years shouldn't be the "cured" cut off. or 5 years. Maybe we need to say it's 10.

He offers some statistics that suggest that stem cell transplants or high dose chemotherapy just might result in a long-term cure. The problem is, no one looks at survival statistics long enough to really know.

It's an intriguing article. I'm all for looking at things in new ways. But it still kind of bothers me.

I guess it's because this seems like kind of a high-stakes approach to things. What I mean is, the kinds of treatments that result in a possible cure are highly aggressive, with potentially bad side effects. And the cure is possible -- people do get allo transplants and still suffer relapses.

Is it worth it? Is it better to manage instead -- living for years while watching and waiting, getting Rituxan, trying Bendamustine or some other less toxic treatment, and living with it for years? Does the potential lifestyle setback justify the reward?

I wish I had an answer. It's the central dilemma for Follicular Lymphoma, given our lack of a clear path for treatment.

So I guess my wish is that an article like this keeps researchers focused on a cure. I'm sure not going to reject one when it happens. But I'm not convinced it's here yet. I need more than a manipulation of numbers. I don't regret my treatment decisions, and I look forward to being able to make more decisions over the years.