Follicular Lymphoma: Changes in the Treatment Landscape

Thanks to William, who sent me the link to an hour-long video from OncLive. I thought it was a compilation of some shorter videos, and I was going to ignore it, but I'm glad William alerted me to it. It features some great Lymphoma specialists, and is worth watching.

The video is aimed at oncologists, to give them a sense of the state of the art when it comes to treating Follicular Lymphoma. It's called "Follicular Lymphoma: Changes in the Treatment Landscape," and it features Dr. Bruce Cheson of the Georgetown Lombardi Comprehensive Cancer Center, Dr. Nathan Fowler of MD Anderson Cancer Center, and Dr. Anas Younes of Memorial Sloan Kettering Cancer Center.

That's some serious Lymphoma Rock Star stuff.

[I might go back to my idea from a few years ago of creating trading cards with Lymphoma Rock Stars on them. You'll get a free pack with every Rituxan infusion. Trade with your friends!]

The Rock Star Doctors cover a lot. From my perspective as a Cancer Nerd, it's all fascinating to me. Their subject is how treatments are changing, so they go into a lot about specific treatments, and the clinical trials that they were involved in, so it can kind of technical. But I'm OK with that.

Aside from being Cancer Nerd, though, I'm also a cancer patient, and that's different. It's one thing to gaze lovingly at a video, and another to think about how it all affects my actual life as someone with Follicular Lymphoma.

So these are the things that stood out for me as a patient:

First, they open the discussion by talking about some of the "scoring systems" that are used to measure prognosis. these are things like FLIPI and FLIPI-m7. The problem with these scoring systems, as they point out, is that they tell us a lot about groups of patients (they were created by looking at data from large groups), but don't say anything about individual patients.

Sometimes, as patients, we look at "scores" like FLIPI, and the numbers seem so definite, that we assume they will predict our futures. They won't. They can't. It's just not what they are meant to do. I'm happy that these three make that point -- and I hope that message gets through to oncologists who may use those numbers without explaining their significance to patients.

Another topic that thrilled me as a patient was their discussion of Subcutaneous Rituxan. All of them were thrilled with the amount of time that subcutaneous Rituxan cuts out from the patient's visit. It can go from about 6 hours (roughly how long my first Rituxan infusion took) to about 10 minutes. That's a huge improvement on Quality of Life. Dr. Cheson asked an important question -- how accepted will this be? He hinted that some doctors might stick with the IV version if Rituxan, because it might generate more revenue. That would be pretty horrible, putting profits ahead of patients. It's great that this discussion was being aimed at working oncologists. I think some of them can use the reminder that our Quality of Life matters, especially if some of us will be living with FL for years and years.

I'm happy that the good doctors made that point to lots of other doctors who might watch.

Another interesting exchange: the possibility of a cure. Dr. Fowler first brings this up, and Dr. Cheson asks if he "used the 'C' word" (and then makes it clear that it was he who has encouraged Dr. Fowler to think in those terms). The two are clearly more open to the idea of an eventual cure for FL than Dr. Younes, as least at this point.

But I like that, too -- that mix of optimism from Fowler and Cheson, balanced with a little skepticism from Younes. I think that's about the right mix -- 2/3 optimism about our future and all the great stuff that is happening in the FL treatment landscape, with 1/3 reminind ourselves that there's a long way to go.

Which isn't to say that Fowler and Cheson are blindly optimistic, or that Younes isn't also enthusiastic about things. Because there is plenty enthusiasm and plenty of realism from all three of them.

In fact, one of the really great things about the video (I'm speaking as a Cancer Nerd again) is the way they consider the many clinical trials and treatments that they look at -- with enthusiasm and realism. They're all hopeful about the future, but they know there's a way to go. These treatments are going to help a lot of people, but we're not there yet.

Another Cancer Nerd thrill for me: at the end of the discussion, they discuss how the community can try to prioritize certain treatments or combinations of treatments. there are, for example, a fairly large number of BTK inhibitors. It's an excellent target, but maybe putting resources into other targets would be good, too. There's certainly a patient aspect to this as well -- there are only so many patients who are willing to participate in trials, so a better focus would be more more efficient. Also, doing more to consider the safety of some combinations would also be good. And for that matter, maybe greater incentives for patients to participate in trials would help a lot.

[And for my CAR-T friends, going back to a discussion we had a few weeks ago in the comments -- certainly seems like CAR-T is going to be focused on patients who have had 4 or 5 previous treatments already. Cost and toxicity are the issues for now, though maybe that will change.]

So, once again, this is really great video, with some Rock Star panelists. (I'm too much of a Fanboy, I know, but this was like watching Glengarry Glen Ross or Doubt -- a bunch of Oscar winners and nominees doing their thing.)