Frankenstein Lymphoma: Can It Be Cured?

This is kind of a follow-up to my recent post on the ViPOR trial, but not exactly a follow-up, because I'm going to talk about something from a couple of months ago.

Dr. Bruce Cheson wrote a piece for the ASCO Post a couple of months ago called "Releasing Follicular Lymphoma From the Curse of Frankenstein."

If you've been reading this blog for a while, you know I'm fond of Dr. Cheson. I've never met him, but I've read plenty of what he's written and watched plenty of the videos he's made. He's smart and funny, and he's very hopeful about Follicular Lymphoma and its future. As an FL patient, I really appreciate that.

That hopefulness is the point of the "Frankenstein" article. He wrote it because the ASCO Post editor had read that Dr. Cheson had mentioned the possibility of a cure for FL, and challenged Dr. Cheson to defend that possibility.

Dr. Cheson says he has a number of patients who have received treatments that have put them in remission for more than 10 years -- maybe enough to consider them cured.

(For the record, it's been 10 years since I was diagnosed, 8 years since treatment with Rituxan, and while I'd love to think of myself as cured, I've never had a completely clean scan. Bummer. But I'm still going strong anyway....)

The next step, he says, if to release FL from the Frankenstein approach. As he describes it: "Lovely nose from here, great heart from there, sturdy arms from elsewhere, decent torso, very good brain. But, when you stitch them all together, the result is reminiscent of a line by Dr. Victor -Frankenstein from the classic eponymous novel: 'How can I describe my emotions at this catastrophe, or how delineate the wretch whom with such infinite pains and care I had endeavoured to form?^'."
   He's seen it done with different combinations of traditional chemotherapy, and now he's seeing it done with non-chemo agents like inhibitors and monoclonal antibodies. Like with the Frankenstein monster, we take good things and try to combine them into something better. Sometimes that works a little, sometimes it doesn't work at all, and sometimes the combo just makes things worse.

That's where the ViPOR follow-up comes in. Five agents combined into one treatment. Will it save us all? Or will it be a monster?

For Dr. Cheson, the road to a cure will come with more knowledge and a smarter, more deliberate approach. There are a lot of combinations that are possible from the agents that are already approved and close to being approved. Too many, really. He gives us the math: if you take just 8 agents and combine them with one another in pairs, you have 36 treatments. Combine each of those 8 in triplets, testing combinations of 3 at a time, and you have 84 combinations.

In some ways, that's kind of cool -- 84 possible things to try. For a patient, that could be a hopeful thing.

But Dr. Cheson's point is less hopeful -- that's 84 combinations that have to be tested, and that means recruiting patients for trials and hoping for the right combo (and hoping to avoid the monsters).

He thinks a cure will come when we know more about biomarkers and other genetic clues that will cut down on the guessing. We'll be able to predict the right combinations and do less guessing. Fewer possible treatments, but fewer monsters, too.

So what does this mean for us as Follicular Lymphoma patients?

Well, first, there isn't much we can do to figure out the right combinations -- that's going to need to come from researchers.

But we can participate in clinical trials when we have the chance to. Especially trials that seem to have more of a basis that "Hey, let's try this combo!" Not that I'm completely against that approach, but with limited resources, at some point we need to have good reasons for running and choosing which trials to support.

Second, as I have written before, the idea of combining agents makes a lot of sense to me. Cancer is sneaky, and if we can attack in different ways, maybe we can cut off some of its escape routes. Obviously, Dr. Cheson sees this as a promising path to a cure.

But that doesn't mean it's the only path. RIT and CAR-T are two examples of approaches that don't require multiple agents in combinations like ViPOR, and they may not be the only ones to come in the next few years. The path to a cure might not even be in our sites yet.

The bigger point is, as much as we need to rely on researchers to do most of the work for us, we can still do our part by staying informed and being open to clinical trials to help test out new, promising agents.

No one is saying there's a cure for us all just yet. But there's no reason to give up hope, either.