Matt's Story

The Best Chance

Once given eight months to live, six-time lung-cancer survivor Matt Ellefson has been beating the disease for seven years and counting. Along with a healthy dose of faith and family support, he credits his genomic-based treatment strategy for helping him crush the odds and live to tell the tale.                      

Dad. Husband. Grandfather. Engineer. Athlete. Traveler. Patient. Believer. Advocate. Every one of these describes Matt Ellefson, but perhaps no moniker is more telling than “survivor.” It’s an achievement that lets him live life as all those other things—and above all, to inspire. From the moment he was diagnosed with late-stage cancer, Matt armed himself with tools that empowered him to navigate an extraordinary journey embracing personalized treatment to beat the odds. This is his story.

FINDING OUT: THE “C” WORD

Not long ago, you might have called Matt an everyman living in Sioux Falls, South Dakota. He was a successful engineer who lived healthily and loved to explore the world with his wife, Melissa, and five kids who spanned kindergarten to college. When he came down with what seemed like a cold in the fall of 2009, Matt, then in his mid-40s, wasn’t overly concerned. Maybe it was allergies, he thought, or a touch of sinus infection. The cough seemed routine, if nagging. Although he couldn’t shake it, he didn’t give it too much thought—until one morning in December when he woke up coughing blood. It was enough to get him to the doctor for some tests, but it still didn’t prepare him for what came next. Nothing prepares you for those words: Advanced lung cancer.

Matt didn’t smoke or live with smokers. He was active, fit, and ate well. By all accounts, he was doing everything right. It was an unfathomable diagnosis that became even more surreal when doctors told him he had eight months to live; with treatment, he had a five-year survival rate of less than five percent. “I was shocked,” he says. “I said, ‘no way. I was just at the gym yesterday.’ I was in denial. I just could not believe it. The first thing I did was pray. The first thing I said was, ‘God, you haven’t heard from me in awhile, but I really need you now.’”

DIGGING IN: AN EDUCATION

Despair isn’t Matt’s style. Instead, he did the only thing he knew how to do: He got to work. Together with his family, he spent hours upon frustrating hours researching his type of non-small–cell lung cancer. “You don’t get guidance,” he says. “There’s no trusted resource to go to. I really wanted to find a long-term lung cancer survivor, find out where that person went, what treatment was given. And I couldn’t find one.”

Figuring out a cancer treatment strategy is complicated. Blasting it with a toxic therapy like chemo has long been the standard, even with mixed results and the debilitating toll it takes on your body. But every day, scientists are learning more about the genomic causes of cancer and how to fight it. We now know, for instance, that a one-size-fits-all treatment is neither efficient nor effective for many cancer patients, particularly those with more advanced disease like Matt. We’ve learned that each person’s cancer is unique, and can be driven by certain genomic abnormalities—that is, alterations in specific genes that cause uncontrolled cell growth, which can lead to the formation of tumors. Once a genomic driver is identified, oncologists may be able to match it with a “targeted therapy,” if one exists for that genetic alteration. Targeted therapies zero in on genomic drivers to combat the cancer, and more of these therapies are being discovered each year.  Having your tumor sequenced can determine what its genomic drivers are and whether a targeted therapy or therapies are possible to knock out the drivers; problem is, scientists are still studying and discovering the intricacies of this biology—a field referred to as “precision medicine.” That’s where “whole genome sequencing,” comes in. Having your cancer’s entire genome mapped is like getting a copy of your cancer’s genetic blueprint, which is an invaluable tool to help determine the best treatment strategies as the field continues to unfold.

Matt tested negatively for two known genomic mutations associated with lung cancer at the time. But, he did qualify for a clinical trial aimed at his type of cancer, run by Houston’s MD Anderson Cancer Center, one of the best cancer treatment centers in the world. For five months, he lived with relatives in Houston, a plane ride away from his wife and kids, while enduring an aggressive treatment plan that included chemotherapy and radiation. He battled through the side effects and illnesses until he finally went into remission, though many of the other patients in the trial didn’t make it.

 

Matt had beaten his odds—for the first time. Around a year later, his scans detected a recurrence in the lymph nodes in his chest. “I was really disappointed,” Matt says, “but we just hunkered down and said, ‘let’s get after it.’”

SELF-ADVOCATING: NEW TREATMENT

It was in a waiting room at his oncologist’s office that Matt stumbled on potentially life-saving information. Scrolling through email on his phone while he waited to discuss his next treatment plan, he happened to catch a press release detailing a new FDA breakthrough drug, Xalkori (crizotinib), that targets the ALK gene mutation, which can drive his type of cancer. “I went into the appointment, and my doctor laid out the plan for a new chemo they were going to give me,” Matt says. “I said, ‘before we do that, I want to be tested for the ALK mutation.’” Biopsy surgery was performed to test the cancerous recurrent tumor for the mutation. The results were positive and with the agreement of his doctor, Matt flew to the University of Colorado, where they were pioneering ALK research for lung cancer and started on the new drug instead of the aggressive chemo.

Within three months, Matt felt so good he ran his first half marathon—an unimaginable accomplishment had he not asked to be tested for the ALK alteration and started taking the targeted medication. The drug doesn’t cure cancer; rather, it’s part of a treatment strategy that allows Matt to beat each cancer flare-up—he’s had six recurrences since his original diagnosis—and maintain a quality of life that seemed impossible when he first received the eight-month death sentence.

Ultimately, Matt changed the course of his treatment, and his life, by insisting he get tested. It might seem odd that the burden fell on the patient, rather than the provider, to present the option. It’s largely because there’s simply too much information, progressing at too quickly a pace, for any one person—doctor or patient—to be on top of it all. “The cancer care in America is the best in the world…but the system is broken,” Matt says. “If it happens at the top-rated  cancer center, just think what happens at other smaller community cancer centers where 85 percent of America’s patients are treated.”

In short, most patients aren’t getting treatment strategies that are personalized to their specific cancers. Even the most talented medical providers like Matt’s don’t have everything at their fingertips at all times, nor can they recommend the newest targeted cancer treatments if they don’t know a patient has a genomic alteration to target. Getting tested is a key way to narrow your pool of treatment options to the best available for your specific cancer—but many people don’t even know to ask. “Often times people are drowning in information but starving for knowledge,” Matt says. “It’s too much. It’s overwhelming. It contradicts itself.”

GETTING PERSONAL: VIECURE’S SOLUTION

In an ideal world, both the patient and the doctor would know exactly what genomic alteration is driving the cancer, and they’d be able to thoroughly explore all therapy options to target that blip and fight the cancer right off the bat.

VieCure makes this scenario a reality for patients like Matt who struggle, after diagnosis, through a veritable ocean of information, options, and resources—a haphazard process made all the more foggy by the challenges of home internet research combined with lingering shock and anxiety. VieCure’s software and cloud-based technology harnesses the knowledge of world-renowned cancer experts to help patients and physicians in creating a personalized strategy to beat cancer. VieCure’s physician platform, VCurePrecision™, is a first-of-its-kind cognitive computing platform that offers the tools and curated scientific knowledge that incorporates evidence-based standard of care approved by leading organizations including the NCCN and ASCO as well as the latest in genomic science the doctor needs to administer and customize the treatments.

The key: knowing the genomic profile of your cancer. “The level of care that I’m receiving really turned the corner in a big way when I had a complete genomic testing done of my tissue,” Matt says. “I did have a complete genomic profile built of all 300+ genes. The best way to be treated as a cancer patient today is not so much to look at it as your next treatment plan; it’s more of a treatment strategy. That involves finding out exactly what’s driving your cancer. You really need to know that; you can’t just go in with a trial-and-error approach of: ‘we’re going to pick this medicine because it works in the highest percentage of patients, so we’re going to try that on you first.’…You can’t fight any enemy until you know who the enemy is. This is the same way with cancer: until you know exactly what’s driving that cancer, how can you fight it? How can you attack it? You can’t.” 

STILL FIGHTING: SURVIVE IT

Matt’s targeted treatment strategy allowed him to attack a handful of tumors that appeared every year or so after his original diagnosis. It was manageable, until March 2016 when he learned that 30 new tumors had invaded his lung, along with three blood clots and a collapsed lung. That’s when they knew his body had become resistant to the drug. But, that targeted therapy gave him years of his life that no one expected him to have—long enough for the FDA to approve a new medication, Alecensa (alectinib), that also targets the ALK mutation. Once again, knowing exactly which genomic alteration drives his cancer allowed him to easily switch therapies to the most effective drug available and continue to battle.

Along the way, Matt, now 54, became more than a self-advocate. Drawing from his struggles in navigating the complexities of cancer treatment, Matt founded SURVIVEiT® to provide cancer patients and their families with a hub of knowledge, hope, resources, and a mechanism to rate cancer care.  SURVIVEiT® was developed to make the journey more approachable. As a cancer community support system, SURVIVEiT® embodies a mission similar to and in tandem with VieCure’s: to empower cancer patients with the tools they need to be proactive, to educate themselves, to make informed decisions, and to get the best treatment possible for each person and her/his unique circumstances. “You can—with the right technology, the right doctors, the right attitude, the right guidance—you can live with cancer and you can beat cancer,” Matt says. “That’s huge. People need to know that. The problem is, people don’t know how to get to that, to find those doctors, to get to that level of care. I want to show people that there are long-term survivors that have taken the bull by the horns and acted as captains of their own ship to steer that ship right though the storm.”

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