Lung Cancer Survivor

Helping Leads to Healing

Matt Ellefson was happily married with five children and a successful career when he developed an ordinary cough. It was late 2009, and he chalked it up to living in South Dakota at that time of the year — until he began coughing up blood. Within 48 hours, Matt, a fit and otherwise healthy nonsmoker in his 40s, learned he had late-stage lung cancer. Experimental therapies, unwavering support and a desire to give back have helped Matt manage the serious disease and lead a purpose-driven life.

 

In the fall of 2009, what I considered to be a regular cough quickly turned out to be life-threatening. My doctor told me I had late-stage lung cancer, and the prognosis was grim. With no treatment, I had about eight months to live. With treatment, I was looking at a five percent chance of living five years. Deciding whether to fight was never on the table. I’ve always had a fighting spirit, and I knew I had no time to waste.

Immediately, my wife, brother-in-law and I sat down with three laptops. We took the “divide and conquer” approach and “Googled” everything we could about lung cancer. We each took a topic, but the more research we did, the more confused we became. We lived in South Dakota, and I knew I’d have to travel to find the best treatment center. My goal was to find where the best research was being done. I’m also a person of great faith. Together, my research and prayer led me to the hospital I chose.

On December 31, 2009, I received an official diagnosis of Stage IIIB non-small cell lung cancer. It was throughout my chest and had spread to many lymph nodes. After the medical team reviewed my case, they suggested a clinical trial. The seven-week trial consisted of chemotherapy once a week, radiation every day, and an experimental drug taken every day. After a month off, I had a triple dose of chemotherapy. That was difficult, and I was hospitalized. After another month off, I had another triple dose of chemotherapy and was hospitalized again. I finished treatment in May 2010. It was a slow healing process, but I recovered and was cancer-free for a year.

The cancer recurred in a lymph node in my neck in August 2011. I was at my doctor’s office, waiting to discuss how to treat the recurrence. He was running behind, so I was checking e-mails on my phone when I received an e-mail alert about an FDA approval of a new drug targeting the ALK rearrangement. When the doctor was ready for me, I was a little annoyed because I wanted to keep reading. He told me he’d like to start another chemotherapy treatment, but I said I wanted to be tested for the ALK gene. I had surgery to get the tissue sample and found out I was ALK-positive. I began the treatment immediately, and I went into full remission. Within two weeks, I began training for my first half-marathon, which I ran in February 2012. I’ve also cycled in several 100-mile events.

I stayed on that successful treatment for 54 months. I had a few recurrences, which we spot-treated with stereotactic radiation therapy. My family was fantastic and supportive. When something occurred with my cancer, my wife and I talked with the kids about it to make sure they heard it from us first. But, in general, we didn’t dwell on it. I was enjoying a great quality of life.

After my initial diagnosis, my work perspective changed, and I didn’t want to be a part of the competitive business world any longer. Instead, I wanted to make the world a better place by making a difference in other people’s lives. I looked back at the struggles I had when I was first diagnosed. To be my own best advocate, I knew I needed to be educated, but it was difficult to do because I didn’t know where to start. In 2013 I founded SURVIVEiT, an online community made up of cancer survivors, doctors, experts and allies that brings together best-in-class cancer care resources and makes them easy to find.

Early on, I discovered that talking with other survivors helped both them and me. There is something very powerful about hearing from others who are beating the odds against cancer. You find that connection because they just get it. At SURVIVEiT, we believe the best way to get through your worst of times is by helping others get through theirs.

 

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