South Carolina strong: Fighting lung cancer through a clinical trial

If you live in Murrells Inlet, chances are you know, or at least know of, David “Matt” Dellinger, better known to his friends as “Phat Matt.” Born and raised in Myrtle Beach, Matt is a familiar face in South Carolina – the guy who seems to know everyone and has spent countless hours fishing the Lowcountry rivers and lakes he loves. Whether he is on the water, at a local store or lending a hand in the community, Matt has built a reputation as someone who shows up, helps out and brings people together. His roots run deep, and so does his circle of friends and family.

That strong sense of community became a lifeline when, at just 47 years old, Matt’s world was turned upside down with a diagnosis no one saw coming: advanced lung cancer.

Lung cancer diagnosis

His wife, Rachel, still remembers the day that changed everything. On Dec. 14, 2021, she received a frantic call from Matt saying he was being taken in for testing. Rachel, who works at a hospital trauma center herself, dropped everything, asked her colleagues to man the desk and rushed over.

“He told me what the doctor said, and I started making calls immediately,” she recalled. “He said he might not get in because the doctors had 100 patients waiting. I said, ‘He’ll be number one today!’”

Before his visit, Matt had been struggling with fatigue and occasionally coughing up blood. Doctors initially dismissed it as a nasal problem and prescribed antibiotics. Even when symptoms persisted, he was told he was not a candidate for cancer screening. His lungs looked clear, he had no family history of cancer and had never smoked.

But symptoms persisted, and something was clearly wrong. His pulmonologist eventually ordered bloodwork and imaging. A thoracentesis drew two liters of fluid from the cavity around his lungs – all of it blood.

“I realized I had a truck full of gas, a boat full of gas and this dog wanting to go for a ride. I told Rachel I was taking Millie out. And she was like ‘Yes, go!’ That day, I realized the only thing stopping me was in my mind. And I haven’t looked back since.”

Matt Dellinger

Things moved quickly from there. Matt went from that initial test to a biopsy in 13 days. Along the way, he had a PET scan, an MRI and three more thoracenteses. Finally, the biopsy confirmed a harrowing diagnosis: a tumor in the lower lobe of his left lung.

“It was shocking,” Rachel said. “There was nothing about him that pointed to cancer.”

With a diagnosis in hand, Matt started chemotherapy at a local hospital right away. That prolonged treatment was accompanied by several hospital stays. Two years in, he was treated with the drug amivantamab, also known as Rybrevant, a targeted therapy used to treat non-small cell lung cancer caused by a specific gene change. Matt made it through only half an hour of the seven-hour infusion, having been given a full week’s dose in a single sitting. He started losing consciousness and shaking uncontrollably – so incapacitated that it took the medical team over two hours to stabilize him.

Matt described that time as an emotional rollercoaster that nearly broke him. Memories of friends who had died from lung cancer deepened his despair.

“I thought my life was over. For the first six months, it was ‘poor me.’ I woke up crying almost every day and hardly got out of bed.”

It was his dog, Millie, who nudged him toward a turning point. One morning, as she lay across his chest, something shifted that helped him to reclaim hope.

“I realized I had a truck full of gas, a boat full of gas and this dog wanting to go for a ride. I told Rachel I was taking Millie out. And she was like ‘Yes, go!’ That day, I realized the only thing stopping me was in my mind. And I haven’t looked back since.”

The cancer spreads

But too soon after, another blow came. Matt began showing concerning symptoms, forgetting simple things, moving and talking differently and generally not acting like himself.

As his constant companion, Rachel knew something was wrong. The couple shares a close, almost unspoken way of communicating, and Rachel noticed the subtle changes – even when Matt did not.

“When he looked at me and talked to me, something in his eyes was different. His body language and mannerisms were completely off,” she said. “I’m with him 24/7. I know his normal. This wasn’t it.”

She pressed doctors for more testing. Eventually, an MRI revealed crushing news: a tumor in his brain.

“I don’t back down,” Rachel said. “If I hadn’t pushed, it would have been missed. That’s why I fight – because I know him better than anyone.”

 

Matt needed brain surgery – and knew he wanted it to happen at MUSC. That surgery was a craniotomy followed by Gamma Knife radiation. First, neurosurgeon William Vandergrift, M.D., operated to remove the tumor. Then, neurosurgeon Istvan Takacs, M.D., and radiation oncologist Charlotte Rivers, M.D., went after the remaining spots with Gamma Knife radiation. Throughout, he was monitored by neuro-oncologist Scott Lindhorst, M.D.

“They were awesome,” Matt said of the surgical and Gamma Knife teams. “Every time they walked into the room, they asked, ‘Where was the last place you went fishing?’ They told me they’d have me healthy to go catch some red fish. I didn’t need a second opinion. I knew when I left there, I was in good hands.”

But surgery came at a cost. To prepare his body for the invasive procedures, he had to go off lung cancer treatment for three months and then another three months for recovery. During the time he was off chemotherapy, his once localized cancer spread “like wildfire,” moving into his other lung, lymph nodes and even throughout his liver. He also developed two more tumors in his brain. Traditional chemotherapy was no longer an option.

“The doctors told me that chemo was out because it doesn’t penetrate the liver or the brain,” Matt said.

Options were running thin. Because his tumor carried a rare genetic mutation, common drugs like Keytruda – used successfully to treat lung cancer in many patients – would not work.

“That’s when they sent me to MUSC Hollings Cancer Center for a clinical trial drug specific to my cancer type,” Matt said. “I didn’t have much of a choice – it was my last chance.”

Choosing a clinical trial

As it turned out, another hospital offered Matt the same clinical trial when he was first diagnosed, but he turned it down.

“I didn’t want to be a guinea pig,” he said. “I didn’t know what a clinical trial was, and no one really explained it to me. No one told me it was a successful medicine. And when I said I wasn’t interested, the conversation was over; there was no follow-up. If I’d been more informed, I might have started on the trial much earlier.”

As the cancer spread and traditional treatments failed, the trial became his lifeline. Matt’s oncologist at Hollings, Mariam Alexander, M.D., Ph.D., explained that the drug, tailored to his rare genetic mutation, had a promising track record – minimal side effects and patients living longer than expected. The clinical trial that Matt is a part of is a multi-center study evaluating the efficacy and tolerability of the new drug in patients with non-small cell lung cancer resulting from a specific mutation in the epidermal growth factor receptor gene.

“When I joined the clinical trial, I put my faith in MUSC. I felt very comfortable and confident taking it based on what the oncologist said. I’m glad I gave it a chance because it’s what’s keeping me here today.”

“I didn’t know what a clinical trial was, and no one really explained it to me. ... If I’d been more informed, I might have started on the trial much earlier.”

Matt Dellinger

More than a year later, Matt continues to take the trial medication every three weeks and get regular scans and blood tests. Alexander told him he will stay on the medication “until it doesn’t work anymore,” meaning the tumors start growing or spreading again.

So far, the results have been encouraging: The spot on his brain has not grown in months, and recent scans showed that the medicine is still doing its job in keeping the lung cancer stable. Those results and the high level of support he received throughout treatment have made him an advocate for clinical trials.

Having received care at several hospitals before coming to MUSC, some of which Matt described as impersonal or disorganized, he appreciates the high level of care he receives so close to home. Matt emphasized his gratitude for his care team, praising their communication and describing them as “unbelievable.” He singled out Alexander, as well as physician assistant Eleanor Hardy, who checked on him every day during a recent COVID-19 diagnosis.

“And everyone in between,” added Rachel. “Everyone at Hollings has been truly so wonderful. From scheduling to radiology to labs, the various care teams he sees are all connected. I don’t have to remind them of anything. When we walk in, they know exactly who we are.”

A relentless advocate and supportive community

Matt insists that making it through such a harrowing medical journey is thanks to Rachel. Through it all, she has been his fiercest advocate – managing appointments, chasing test results, pushing against delays and keeping his doctors informed.

“She’s the main reason I’m still here,” he said.

“I’ve been so active in his care; he has no idea what’s going on,” Rachel added, laughing. “He has no idea when his appointments are. He just goes when I tell him. He manages cancer, and I manage him.”

That journey has been full of setbacks – misdiagnoses, surgeries, frightening side effects, hospital stays, oncologist transitions, to name a few. Matt even had to close his boat repair shop because he was unable to work anymore. All of that pushed him close to his breaking point more than once. But each time, he and Rachel regrouped and pressed forward.

“When we first met, I was going through a tough time,” Rachel said. “And he told me, ‘It’s something we’ll grow through.’ That’s been our motto ever since. We keep growing together.”

Matt has also drawn strength from the community he has given so much to. A local benefit thrown by a friend brought a record-breaking crowd as neighbors, friends and residents from across the state came out to show their support and raise over $100,000. For Matt and Rachel, that level of support reinforced just how much the community cares.

“I’ve learned that cancer doesn’t just affect me. It’s my family, my friends, all kinds of stuff,” Matt said.

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