Taking Back Control

Matt Ellefson on Precision Medicine in Lung Cancer

By Lisa Brockway, Apr 10th, 2017

Nearly eight years ago, Matt Ellefson got a cough. It seemed normal, but it wouldn’t go away. A visit to his doctor revealed the worst: Matt had lung cancer. Not only that – it was advanced. He didn’t have much time to figure out what to do.

But Matt is not one to lay down when challenged. He did extensive research and – after nearly giving up because trying to find the best in cancer care was so frustrating – located a clinical trial at MD Anderson in Houston. If it worked, it would be worth the trip from his home in Sioux Falls, SD. And it did work…for a while.

When his cancer recurred, Matt knew he would have to be aggressive. His oncologist was looking at putting him on another chemo protocol, but in his research Matt had read about precision medicine, and he requested to have surgery to have some tissue removed and tested for gene mutations. Through this testing, it was determined that an ALK rearrangement was driving Matt’s lung cancer. He immediately started on a treatment for that particular type of lung cancer, and felt so good that within two weeks he started training for his first half marathon. He ran it three months later.

His lung cancer has come back several more times, and he’s now on a drug that’s been made available to him through compassionate use. He remains remarkably positive for someone who has been through so much, and has dedicated his life to improving the lives of others who have been diagnosed with lung cancer. He’s narrowed in on providing support during the time shortly after diagnosis, and has become focused on how he could make life easier for patients during that short but critical first 72 hours. Patients are in shock, and understandably, they’re not prepared with what questions to ask, how to talk to their employers, or even how to talk to their family about their diagnosis. But in this moment of shock, patients need to be working with their oncologist to map out a plan.

Inspired by his experience as a patient, in 2013, Matt started an organization called SURVIVEiT, the world’s first and only cancer care rating resource – essentially the Yelp of cancer. He’s also a part of the Precision Medicine for Me initiative, which is a project started by a group of respected patient organizations, advocates, startups (including Antidote), and industry leaders that is devoted to patients getting the best possible care, starting with the knowledge, hope, and action they can take right now.

“Precision medicine means knowing exactly what is driving your cancer. You don’t know how to attack an enemy until you know what that enemy is. First you need to do some diagnostics – in the case of cancer, you need to have your tumor tissue tested. This is happening at a really small percentage of hospitals.” Precision Medicine for Me aims to raise awareness and provide access to crucial tumor testing. Matt’s tissue was not tested when he was first diagnosed – despite being treated at one of the best cancer centers in the country, he found out about testing from other patients, and he had to fight for it. And that shouldn’t happen to any patient. “One of the worst sins is having the ability to help someone and not,” he said, in reference to hospitals that do not routinely offer tumor testing to lung cancer patients. “We have an imperfect system, but what patients can do is take back control.”

Matt also urges patients not to shy away from getting involved in research or considering a clinical trial. “A lot of people are afraid because of the stigma,” he says, or are concerned about receiving a placebo. He emphasizes that at the very least, cancer patients in trials receive standard of care. He says, “oftentimes if you have late disease, I believe a clinical trial is the best place you can be….You shouldn’t be afraid to enroll.”

To hear more of Matt’s story, check out this fantastic interview by our friends at Patient Power.

You can learn more about Matt and find a clinical trial that’s right for you quickly and easily at www.surviveit.org. You can learn more about precision medicine at www.precision-medicine.me.

 

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