Actionable Tips From a Lung Cancer Survivor

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Leading lung cancer patient advocate Matt Ellefson of SURVIVIEiT® joins Dr. Alex Spira of Virginia Cancer Specialists and Dr. Bruce Johnson of Dana-Farber Cancer Institute to share his passion and tips for making sure patients advocate for themselves from the start. 

This lung cancer webinar was a SURVIVEiT® program produced in association with US Oncology NetworkVirginia Cancer Specialists and the Precision Medicine for Me initiative and produced by Patient Power. The program was sponsored by SURVIVEiT, a non-profit patient organization, through educational grants they received from Celgene, AbbVie, Foundation Medicine, Novartis and Guardant Health with additional support from Viviphi.

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Transcript

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:

Matt, so, we talked about testing. We talked about trials. You have a lot of wisdom, as you’ve lived with this over the years. And we’ll ask Don, too. What are some pointers that you would say to people as this science is changing? Is it immunotherapy? Is it these mutations? ALK? EGFR? BRAF may show up, and there are other ones that Dr. Spira said they’re identifying, and all the ones that Dr. Johnson said they’re testing for so many more for the future. So, wherever you are, if you’re in Sioux Falls, Iowa—Sioux Falls, South Dakota. If you’re in Carlsbad, California, where I live. If you’re in Philadelphia, where I am now, what should people—what kind of discussions should they be having with their doctor? 

Matt Ellefson:   

I think, Andrew, that’s a great question. And I think first and foremost, people need to ask to have their tissue tested for genomic sequencing, genomic profiling, whatever you want to call it—it’s the same thing – to find out just what is driving their cancer, if possible.

Because it’s really hard. It doesn’t matter what we’re doing. We can’t fight an enemy until we know what the enemy is. And once we understand what it is that’s driving the cancer—and sometimes, I realize sometimes you aren’t gonna be able to find that out. But I think in most cases, they do identify something. And that provides that patient with the opportunity to get on a drug therapy that is tailored just for them. And it’s what precision medicine is all about, as opposed to when I was initially diagnosed, they were still treating patients with different chemotherapy infusions, and it’s not that those aren’t affected. Those can be. But that again is kind of a broad-based approach based on the amount of patients that respond to that type of chemotherapy for that particular type of cancer.

Whereas now, when we go into precision medicine and we’re talking about genomic profiling, genomic sequencing, we can target just exactly what it is. And then oftentimes, if some other gene abnormalities show up, the doctors and the researchers will know really what pathway is contributing to the most to this cancer, and what genes are on this pathway that can also affect it in some way. And that is—to me, that is critical, because if you get on the wrong therapy right away—well, it doesn’t matter when it is. If you’re on the wrong therapy—therapies take a hard toll on your body. They really do. And over time, a patient or a human being can only—we can only tolerate so much. And our body just—our organs and everything just kind of get worn out. 

So it’s really important that you do that immediately right away. And if you are a patient that hasn’t had genomic sequencing, and you’ve been diagnosed with cancer for a couple of years now, it’s not too late for you to ask to have that sequencing done. And I would urge everybody to do that. The second thing I would urge people to do is get a second opinion in an academic research center. And the reason why I say that is there are so many community cancer centers around America that have great doctors. They’re doing great work, but they just don’t have the tools that some of these big academic research centers have. And they don’t see the caseload. They don’t see the amount of patients that some of these larger academic research centers have. And so, you need that experience from your medical team, especially if you have kind of a tough situation.

If you’re a patient that has a genome normality that only occurs in 5 percent of lung cancers, then it’s not gonna be seen very often by these community cancer centers. And some of the bigger cancer centers see more of that, and they know how to deal with it better. So it’s worth—to me, I think that it’s worth every penny you spend on getting a second opinion and really having another team look at your case really thoroughly, a team of experts. And then hopefully, they can put together a protocol to you. They can collaborate with your doctor at home, at your community cancer center. And you can go home and have that treatment administered and delivered to you in your hometown.

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. 


Page last updated on August 7, 2017