Saturday, September 13, 2014

Clinical Trials for Follicular Lymphoma

Someone put a link to my last post (on Duvelisib) on the Magic NHL Forum. One of the responses came from Karl, who is President of Patients Against Lymphoma, the group that runs Karl is someone I have great respect for, so when he talks about lymphoma, I tend to listen.

Karl's comment was that the news about Duvelisib is "encouraging but also worrisome. The number of competing investigational products increases the challenge of not only getting initial approval but also learning how to best use each of those that achieve that milestone."

Does this mean we might have too many arrows in the Follicular Lymphoma quiver?

I don't think so. But it does mean that having so many might make it hard to test all of them well, figure out the right doses, determine the best combinations of new and old treatments to attack the disease in the right way, and do it all with patient safety in mind.

In other words, we don't necessarily need fewer treatments. What we need is...well, I'll go back to Karl's words: "We must increase the enrollment rate in trials commensurate with the rate of new study drugs ... and hopefully identify new ways to evaluate efficacy in a shorter time."

I think that second part, identifying new ways to evaluate efficiency in a shorter time, is kind of starting to happen. We've seen new processes from the FDA that are meant to get treatments to us more quickly -- Fast Tracking, Breakthrough Designation, and Accelerated Approval -- that are already having an impact on blood cancers.

But maybe more importantly -- and something more under our control as patients -- is that first thing, increasing enrollment in trials.

I've mentioned this before, and it's worth mentioning again, especially in light of Karl's comment about Duvelisib. Treatments don't mean much if they can't get tested, and there's no one who can test them but us, Follicular Lymphoma patients.

I think we have an advantage when it comes to clinical trials. We have lots to choose from, for one thing. And many of us, even at the time when we need treatment, might have a slow-growing enough course of disease that we can afford to be part of something that might not work. In other words, we'd have time to try something else if the trial didn't go the way we liked.And one final advantage -- most of us have the time to plan out our next steps. We can look into trials whenever we like, and know which might be appropriate for us if and when the time comes.

So whatever our hesitation, trials should be something that we at least talk about with our oncologists. As for myself, I have not yet been a part of a trial (I have only had one type of treatment so far), but I check in regularly to know what's out there, and what I might be qualified for.

How do I do it? Easy. Go to's page on clinical trials. It will not only give you a way to search for trials by disease, by location, etc. It will also give you advice about what to look for, questions to ask, and other important background info.

So, thank you Karl,for your thought-provoking comment about new treatments, and for the reminder that we all really need to think carefully about what our own role might be in making sure those arrows make it into our quivers.


Anonymous said...

Bob I had asked my onc if I am a candidate for trial but he refused saying if I am in remission I dont need one. I am not sure if this is true? Whats your take on that? By the way i like your posts so much they keep me well updated with the current info on our type of nhl.thanks.

Lymphomaniac said...

I guess he's right, technically -- if you're in remission, there's no need for treatment, and thus no need for a trial. I can see his point. Trials come and go, so there's no sense in thinking about one until you need one. I'd ask if he's OPEN to a trial, rather than if you're a candidate for one. He may not like giving up control over you if you have to go somewhere else for the trial. It's a conversation worth having, I think.
On the plus side, he must be happy with where you are, if he doesn't even want to talk about treatment right now. So hang on to that good news.

Anonymous said...

Am in a clinical trial right now for follicular that has transformed into DLBCL. Have been in and out of remission the past two years, but after the last relapse they suggested that I needed a break from chemo and an investigational drug might be a better choice. It is an enzyme blocker and there is no placebo. No side effects and I just have to take 3 pills a day. So far so good, but I won't know if it's working for another month.

They tell me that this stuff (CB-839) works great in mice, so I am hopeful it will work for me.

Lymphomaniac said...

From what I know about CB-839, I think you have a good chance of success. It's another in those recent types of treatments that try to cut off pathways that the cancer cells need to survive, rather than attacking the cancer cells directly, like chemo would.
Good luck with the treatment. And thanks from all of us for being a part of a trial that might help us in the future.