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How Are Lung Cancer Patients With Rare Mutations Making a Difference in Research?

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Published on March 14, 2019

Why is the patient perspective vital for progress in clinical research? How are patients helping to drive lung cancer research forward? Lung cancer expert Dr. Lecia Sequist, from Harvard Medical School,and patient advocate Janet Freeman-Daily, a stage IV lung cancer survivor with a ROS1 mutation, discuss how healthcare providers and patients are collaborating to expand the body of knowledge on cancer genetics, testing and treatment. Janet also shares how the course of her treatment changed after the discovery of the ROS1 mutation in lung cancer patients. Watch now to learn more about patient participation in cancer care. 

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.

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Transcript | How Are Lung Cancer Patients With Rare Mutations Making a Difference in Research?

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.

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.

Andrew Schorr:

There are a lot of different topics out there that patients can share their background and perspectives on. I think one of my more favorite things is running into Dr. Jean Kooey(sp?) who created the drug that I'm on and that Marisa started with and that Marisa then took next.  She's the lead chemist on those designs, and we ran into her at the poster session at ASCO, and she got to meet the patients that her drug, which was a really big deal for her.  And we're all kind of awestruck, fan girl, oh, my God.  

But looking at the tumor is important, and then actually important is getting patients to the right trials.  You're not going to be able to prove that something works if you can only find one patient with that mutation.  You really have to reach all over the country and sometimes all over the world to find patients specifically for a situation.  And that's one area where patient advocacy groups have been extremely helpful helping bring patients together with the trials that fit their situation.  

So what I would tell people is it's really important to keep track of the research and to stay on top of the new developments.  And so the patient communities are really good at that, because you might find a new option that didn't exist when you were first diagnosed.  

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.