Clinical Trials for Follicular Lymphoma

Someone put a link to my last post (on Duvelisib) on the Lymphoma.com/Web Magic NHL Forum. One of the responses came from Karl, who is President of Patients Against Lymphoma, the group that runs Lymphomation.org. 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 Lymphomation.org'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.