Clinical Trial: Keto Diet and Copanlisib

Someone on the Follicular Lymphoma Facebook group posted a bunch of FL links this morning, and this one caught my eye:  Some very prestigious cancer centers in New York are conducting a clinical trial involving Follicular Lymphoma patients and ketogenic diets. 

Lots to comment on here.

Let me begin (since it seems appropriate here) by reminding you that I am not an oncologist, or a cancer scientist, or a medical or science professional of any kind. I'm a Follicular Lymphoma patient who had been reading about FL for over 13 years. My opinions are just opinions, though I like to think that they are informed by science.

I know some of you are interested in Keto diets, and in general in how the things we eat can affect our cancer. (I'm not on a ketogenic diet, but I think this is a decent introduction -- gets at the basics and points out the potential bad parts, too. So let me say here that I don't know of any study that shows that FL patients can definitively help themselves by eating certain foods, at least in terms of keeping our cancer in check or making it go away after we've been diagnosed. There are plenty of theories about why certain foods might help (turmeric, broccoli, blueberries, whatever), but no large, controlled studies that show benefits. There are lots of individual patients who say they have eaten certain foods, and remained cancer-free, but one person's experience doesn't mean much, because there are too many other factors that might have been contributing. 

(If you want to look at one person's experience, look at mine -- every week or two, I go to a hot dog stand in my town, eat a hot dog and french fries and a large diet soda, and sometime I dip my fries in fake cheese sauce. It's all delicious and it makes me happy and the owner sits with me sometimes and tells me funny stories. If you want your FL to stay away for 13 years, eat hot dogs and fries and fake cheese every two weeks. You're welcome.)

But really, what I would love to see is some kind of controlled study that does just that. And unfortunately, there aren't many out there. In 2007, there was a really cool-sounding study where they asked FL patients to take a bunch of different supplements, but I never saw anything about the outcomes, so I assume there were no results worth reporting. I think that happens a lot. Researchers aren't interested in publicizing the stuff that didn't work -- which is too bad, because there's a lot to learn from failure, too. 

Anyway, back to this trial. As far as I can tell, the trial is based on an old idea about cancer and sugar. As I'm sure you've heard, cancer cells feast on sugar. This is the basis of PET scans -- you are given a sugary drink, and the scan shows which cells are eating the sugar most quickly. Cancer cells like to eat sugar.

Now, some folks have turned that around incorrectly, and say that eating sugar is the way to feed cancer cells, and the way to kill cancer cells is to starve them of any sugar. The problem with this is, that's not how the body works. Our bodies are amazing machines, and they find ways to create sugar out of other materials, if there is no easy sugar supply available. Cancer cells operate the same way. They'll find a way to get sugar, even if you've given up cookies and ice cream.  That's what they do. They always seem to find a new way to survive, even when we cut off their usual way of surviving. 

(By the way, that Hot Dog place I love so much? The owner's sister opened an ice cream shop next door. After my hot dog, I usually get some ice cream.)

So cutting off sugar won't kill off cancer cells. They'll find a way to survive.

However -- limiting sugar while taking a PI3K inhibitor? That's a slightly different thing.

There has been research that shows that PI3K inhibitors increase blood sugar, causing an increase in insulin, which decreases the effectiveness of the inhibitor. (Remember that PI3K is an enzyme that is part of a long chain of events that keep a lymphoma cell alive.)  If there was a way to decrease blood sugar, and thus decrease insulin, in patients receiving a PI3K inhibitor, then maybe the treatment will work better. All of this was discovered in a study involving mice. The next step is to try it in humans.

And that's where this trial comes in. Patients receiving Copanlisib will also be put on a ketogenic diet, which is higher in fat and lower in carbohydrates that the typical diet. Fewer carbs means lower blood sugar and less insulin produced. 

To be clear about a couple of things:

This trial is not testing whether limiting sugar will stop cancer. It's about a specific treatment and how a specific diet can help make it more effective.

I'm also not suggesting that anyone eat bad food all the time. We should all eat healthily -- lots of fruits and vegetables, whole grains, limit meat and sugar and alcohol. That's good for our general health. But I also think a hot dog and ice cream every now and then in not a bad thing. Every now and then.

I think the trial is great, and if anyone is in a position to join, I hope you'll consider it. And if it were possible to construct a decent trial involving diet and FL, I hope someone gives it a try. There are some challenges to a trial like that, but I think we'd all be better off knowing how much (and in what ways) the food we eat affects our lives as cancer patients.