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How Can KRAS Patients Get Involved and Learn More?

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Published on September 17, 2020

Getting Involved in KRAS Lung Cancer Advocacy

How can KRAS lung cancer patients empower themselves and learn more about their specific lung cancer? How does advocacy actually help lung cancer researchers too?

Watch as Terri Conneran, patient advocate and founder of the KRAS Kickers Support Group, talks to lung cancer experts Dr. Jyoti Patel from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and Dr. Jessica Lin from Harvard Medical School on this important topic.

This is Part 2 of a 3-part series. Watch all segments in the series below:

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Transcript | How Can KRAS Patients Get Involved and Learn More?

How Do KRAS Patients Stay Informed?

Terri Conneran: 

We all try and stay informed. And when you find out you have something undruggable and you want to do the best that you can. And so we become, we as a community, have to kind of go out there and learn what we need to know about it. How can we kind of keep track of how personalized, how precision medicine it becomes without becoming oncologists? I mean, we obviously need to turn to our doctors. Okay. And that's why we have amazing people like you. 

Dr. Lin: 

So I was just going to say events like this are so important. Patient forums, talks that you can attend where you can kind of have the presenters highlight the important concepts to remember, and then patient advocacy groups and support groups. I cannot emphasize enough their value in not just augmenting your knowledge base, but also in finding and supporting each other. For the other oncogenes where targeted therapies made their way earlier in that Dr. Patel mentioned like EGFR, ROS1, there have been patient groups around for a while where really, I think it ended up being a tremendously valuable source of information for all of the patients that are newly diagnosed, particularly patients who may be out in the community where they might not have as easy time accessing these patient forums or know about these opportunities for learning. And so I think groups like KRAS Kickers and events like this are so helpful. 

Dr. Patel: 

I really wanted to sort of echo what Dr. Lin was saying. Not only is it helpful for patients to learn from each other, but it's become a huge resource as patient advocacy for researchers, right? Patients have been so generous with tissue and information, and so we're able to band together a huge number of patients to ask questions. Again, when you look at the pie, it might be a small number of people, but 2% of patients with lung cancer with a particular mutation ends up being quite a crowd, right. And we're able to work with advocacy groups, I think, to further the science. So it's, we're together. I mean, it's very much a codependency that I think is very constructive. 

So I think this idea of truly personalizing therapy is so important. And to me, that's been exciting not only in finding targets and rational drug combinations, but I think the piece that has been sort of our golden grail in lung cancer now that we have multiple therapies is really having a better understanding of when to escalate and deescalate therapy. So that means that right now our approach often is the kitchen sink and, and see what happens with like combinations of chemotherapy and immunotherapy, but are there patients that we may be able to do less treatment for because we're able to detect what their cancer is doing in real time. So blood biopsies now, are something in which we can understand functionally how well we're shutting down tumors and for people who may not respond to one therapy, can we escalate treatment? And so these ideas of what can we do, that's functional rather than just sort of everyone gets four cycles of this, then six cycles of this. Is there a way longitudinally that we can decrease toxicity and increase cure rates by having a sort of more dynamic feedback loop? 

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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