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Why Should Lung Cancer Patients Consider a Clinical Trial?

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Published on April 24, 2019

How can people learn about new lung cancer therapies? Why should patients consider a clinical trial? Lung cancer expert Dr. Lecia Sequist, from Harvard Medical School,and patient advocate Janet Freeman-Daily share research highlights from a recent lung cancer conference and explain how clinical trial participation and treatment developments are intertwined. The panel discusses advances in identifying and understanding genetic mutations in lung cancer patients, treatment research updates and clinical trial awareness. Watch now to find out more. 

The Living Well With Lung Cancer series is a Patient Empowerment Network program produced by Patient Power. We thank Celgene Corporation, Genentech, Helsinn and Novartis for their support. These organizations have no editorial control. Patient Power is solely responsible for program content.


Transcript | Why Should Lung Cancer Patients Consider a Clinical Trial?

So first of all, Janet, from your perspective as a patient, you go to the World Lung meeting, you go to some of the other meetings, what do you think are the big deals for patients?  Is it more genes being identified?  Is it having immunotherapy work for more people?  What are the big take-home messages we should review for people here? 

But I think one of the other big notes is it appears that immunotherapy may be working for small-cell lung cancer, which has not had a new treatment option in decades, so that is huge. 

However, in addition to treatments I would say the next big thing, and it's not too surprising I'm going to say this because this is what I talked at World Lung, but the fact that we have new patient groups forming around these driving oncogenes, we have enough patients who have been taking these targeted therapies enough, long enough and feeling good enough that they're becoming active as advocates.  And they want to learn more about their disease, so we now have a group for ROS1 called the ROS1ders, for EGFR, EGFR resisters, for ALK, called ALK Positive, or RET, called the RET Renegades, and a separate group for a subset called Exon 20 group for insertions or Exon 20 of HER2 and EGFR. 

And these patients groups are providing guidance to help patients find clinical trials, to help them understand their treatment, to deal with their side effects, to find experts, and we're also funding research.  So there are new research studies being funded by these patients, and the ROS1ders have actually created a study where we are making cancer models of our own rare cancer because researchers didn't have anything to study, and now they have more cells.  In fact, we've got, I think, four new cell lines in the past year and more in development. 

And we also have three patients who have donated to creating mouse models of ROS1, and they hopefully will be useful for us.  And they've already had two different publications on the subject.  And without it some of the ROS1 research couldn't be done, so we're very excited about that. 

So that then gives you the opportunity to try to understand them and a lot of aspects of their care and their biology more than you ever could because people are living, right?  So that chance for dialogue is really critical to understand how are we not just, yay, we have the medicines helping people live longer but what's going on, right? 

So these are some of the lessons I've learned from working with patients in various forums, and it's really very satisfying for me for sure. 

And having people be aware that clinical trials are not just a way to experiment on a patient but to really offer the patient cutting-edge treatment that they couldn't get outside of a trial and work together to bring new treatments to approval, that message is critical to get out to the public. 

Right.  As Janet said, there are people who can help you with the lung cancer groups she's rattled by, online groups.  There are all sorts of people who can help you, so I want you to—I hope our viewers will take advantage of that.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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