Experimental cancer drug helps Charlotte man who ‘should have died’

Three years ago, Christopher Lawing thought he was dying.

At 39, the Charlotte museum executive was diagnosed with advanced kidney cancer. His tumors continued to grow despite treatment.

But just as he’d run out of options, a promising new clinical trial opened at Carolinas HealthCare System.

Instead of imagining his funeral, he became the first patient – of an eventual 147 at 16 medical centers – to enroll in the trial. On Feb. 21, 2012, he received his first infusion of experimental immunotherapy, a drug aimed at harnessing his body’s immune system to fight the cancer.

Nobody quite expected what happened next: His tumors shrank. And three years later, they haven’t grown back.

“I should have died in the early summer of 2012,” said Lawing, now 43.

Although he volunteered to be a “guinea pig,” hoping the new drug would extend his life, recovery hasn’t been without problems. He’s coping with new medical problems, including insulin-dependent diabetes, caused by the treatment that saved his life.

And yet, he’s managing, with multiple medicines and the support of his care team at Levine Cancer Institute, where he returns every 21 days for infusions of the drug. He continues to work at the Bechtler Museum of Modern Art, volunteer as music director at his church and savor life with a new one-day-at-a-time attitude.

Nationally, Lawing is one of a growing number of patients with advanced cancer – so-called “super survivors” – whose lives have been extended by immunotherapy drugs after traditional treatments failed. In the Charlotte area, other multiyear survivors have received immunotherapy drugs through trials led by Dr. John Powderly at Carolina BioOncology Institute in Huntersville.

The drug that extended Lawing’s life is still considered experimental for kidney cancer, but in recent months it received “accelerated” approval from the Food and Drug Administration for treatment of melanoma and lung cancer. The results are making this an exciting time in cancer research.

Before immunotherapy, “there’s nothing else in the world that would have shown that kind of benefit,” said Lawing’s oncologist, Dr. Asim Amin, co-director of immunotherapy at Levine Cancer Institute.

Devastating news

It was Jan. 18, 2011, when Lawing drove himself to the emergency department because he was passing “copious amounts of blood” in his urine.

After ordering tests, a doctor came to Lawing’s bedside about 3 a.m. and told him he had a large tumor in his left kidney. It measured 8.5 centimeters, about the size of a softball.

Lawing remembers feeling “gobsmacked.” A Charlotte native and graduate of Myers Park High and UNC-Chapel Hill, he had always been healthy and hadn’t expected anything so serious.

His mother, Nell Lawing, who went with her son to the hospital, recalls dropping her head. She hoped he wouldn’t notice as her tears dropped to the floor.

A week later, surgeons removed Lawing’s kidney and told him they “got it all.” But by summer a new CT scan revealed three large tumors in his liver. The cancer had spread, meaning it was now Stage IV, the worst.

Lawing searched the Internet. He read the words “incurable and terminal.” To find the best doctor, he contacted M.D. Anderson Cancer Center in Houston. He was told he didn’t need to travel because there was an “expert immunologist” – Amin – in Charlotte.

At their first meeting, Aug. 8, 2011, Lawing spent a couple of hours with Amin. They reviewed his latest scan. Dark spots, signifying cancer, took up almost half of Lawing’s liver.

Advanced kidney cancer doesn’t respond well to standard chemotherapy, Amin explained. “The likelihood of that having any meaningful response was miniscule.”

Amin described the emerging field of immunotherapy and how it differs from standard treatment. Chemotherapy, radiation and drugs that target genetic mutations take direct aim at the cancer. But immunotherapy works to unlock a “checkpoint” on the immune system so the body’s killer T cells can attack the cancer.

Despite exciting research prospects, Amin had no immunotherapy drug to offer Lawing on the day they met. Lawing had become so weak he could barely walk. Amin prescribed a couple of standard treatments, but they didn’t work. Lawing still had what Amin called “marked progression of disease.”

Praying for a cure

By then, a year had passed since Lawing’s diagnosis, and he was more scared than ever. “If I had six months, I was lucky,” he said.

Amin had hinted that he might have something else to offer soon. But Lawing wasn’t sure he would live long enough. He began to think about his funeral. Who would be there? What would they say?

In early February 2012, Amin brought good news. He had just gotten approval to offer a Phase I clinical trial of an immunotherapy drug, called nivolumab, for patients with kidney cancer that had spread.

Phase I clinical trials aren’t intended to cure anyone, just to find the right dosage of a new drug or combination of drugs. The studies usually include only a small number of patients whose cancer is so advanced they don’t really benefit. But the results provide the basis for larger studies that compare the new therapy to standard treatment.

Lawing prayed for a cure, but realistically, he figured he would be contributing to research that would help others, if not himself.

Scan shows a surprise

Lawing’s first infusion took about four hours on Feb. 21, 2012. He tried to relax, checking emails on his iPad and napping in a recliner as the drug dripped into his veins.

That evening, Lawing began experiencing unbearable pain in his abdomen, a side effect of the medication. He returned to the hospital the next day. He was there for a week, then home and back again for five days, before doctors got the pain under control.

Six weeks later, a scan showed the dark spots on his liver had shrunk.

“We saw that and said, ‘This is pretty cool. Something is happening,’” Amin said in his typically understated manner. “This doesn’t happen in kidney cancer.”

When Amin compares the scans, April 2012 to February 2015, he still sees a few dark spots. But he thinks they’re just scar tissue.

“These results are extremely, extremely encouraging,” Amin said.

Results reported

As Lawing’s tumors shrank, his pain lessened. But he developed other problems.

He was diagnosed with high blood pressure, thyroid disease and colitis, all caused by the treatment. He had to take medicines for anxiety, insomnia and joint pain. And all his hair, even his eyebrows and eyelashes, turned stark white.

Lawing looked and felt like a much older man. Extreme fatigue meant that sometimes he could work for only a few hours a day. “You take for granted the energy it takes to get out of bed or walk across the room,” he said.

By the time he got colitis in January 2014, he’d been on the trial for nearly two years. With that additional complication, Amin made a change, dropping one drug, but keeping Lawing on nivolumab.

Lawing got stronger and discontinued medicine for pain and nausea. He was able to start working from the office more.

Since then, the FDA has approved nivolumab for melanoma and for a type of lung cancer. Other Phase I trials continue in Charlotte, both through Levine Cancer Institute and Powderly’s clinic in Huntersville.

Rolling with the punches

Early this year, Lawing was diagnosed with Type 1 diabetes, another side effect of his treatment. He became completely dependent upon insulin, four injections each day.

“You trade one disease for another,” said Lawing, who at one time took 30 pills a day. “I am in a constant state of therapy.”

Because of the diabetes, he limits the carbohydrates he eats and monitors his glucose level by pricking his fingers for blood at least seven times a day.

“Christopher’s definitely in charge of his health,” said Lawing’s partner, Matthew Robbins. “He doesn’t allow himself to get sucked down in negativity. He faces challenges head on.”

As long as Lawing can tolerate the side effects, he’ll continue getting nivolumab infusions every 21 days. He’s gotten to know his caregivers so well that he asks about their children by name. Nurses know that he likes to have a Diet Coke, a pillow and a warmed blanket before settling in for the four-hour process.

“He’s one of our favorites,” said nurse Cori Fappiano.

Living with guilt

Lawing is proud to call himself a “chronic survivor.” His natural hair color returned, except for the still-white lashes at the corner of his left eye, a mysterious leftover and reminder of all he’s been through.

But surviving has brought non-medical complications as well. At one point, Lawing began feeling guilty for being alive. He made friends with other patients in the infusion room. But not all of them responded as well as he did. Some dropped out because side effects became intolerable, or their cancers progressed.

“They started passing away, and I was recovering,” Lawing said. “Why am I the lucky one?”

At the same time, Lawing “lost a sense of purpose. … What was I doing if I wasn’t fighting cancer anymore?”

With help from a therapist, he’s moving forward. He admits to having “scan anxiety” before he gets a new one every 12 weeks. But he tries to face cancer matter-of-factly.

“I live my life the same way I lived it before,” he said. “I do things as they come instead of ticking off things I want to do before I die. I just take it as it comes.”

Lawing’s February scan revealed some new dark spots, raising questions about whether his cancer might have returned. He and Amin agreed to “watch and wait” until the next scan, in May. In the days before, Lawing had trouble sleeping and developed stomach aches.

But on May 12, his scan showed practically no change. Now he can relax until August.

This story was originally published May 16, 2015 at 4:38 PM with the headline "Experimental cancer drug helps Charlotte man who ‘should have died’."