A Young Father Opts for Clinical Research When Standard of Care is “Not Acceptable”

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A Young Father Opts for Clinical Research When Standard of Care is “Not Acceptable”

By Shelly Reese

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Like any father of a newborn and a toddler, T.J. Sharpe assumed his fatigue was due to sleepless nights. So when a sudden high fever sent him to the emergency room in August 2012 he was blindsided by the diagnosis: his cancer had come back.

Twelve years earlier T.J. had had a stage 1B melanoma removed from his chest. The procedure had gone well, and T.J. had been careful about his sun exposure ever since. But the health scare he thought was behind him was back with a vengeance: his cancer had metastasized. Scans showed he had spots on his lungs, tumors in his liver and spleen, and a large mass on his small intestine, which was causing internal bleeding.

T.J. spent 16 days in the hospital and had the tumor surgically removed, but when the oncologist spoke grimly about what he might expect from standard of care treatments, the young father decided it was time to chart a new course.

“He told my wife he’d be surprised if I was around in two years,” recalls T.J. “Standard of care was not acceptable. I needed something that was going to give me the best chance of a long-term response. I wanted a chance to see my kids grow up. To see them go to college and get married.”

T.J. and his wife, Jen, sought four more medical opinions, ultimately settling on an experimental immunotherapy treatment at Moffitt Cancer Center in Tampa. The family rented a house nearby so T.J. could undergo the new regimen, which involved a combination of immunotherapy and tumor-infiltrating lymphocyte (TIL) harvested from a tumor on his lung. The trial was a challenge: T.J. developed diverticulitis, which required a colostomy, and ultimately he did not respond to treatment.

“I was the first to try this, and I was the first to fail it.”

With the help of a friend at the Melanoma International Foundation, T.J. found a new trial at Holy Cross Hospital just miles from his home in Ft. Lauderdale and it was accepting new participants.

Although the local cancer center did not have Moffitt’s size or reputation, “They had the drug, which meant we could started right away, and we could move home,” says T.J. “That was important. It was a decision not to let our lives be completely run by my diagnosis and treatment.”

Soon after T.J. received his first dose of Merck’s lambrolizumab, an investigational antibody therapy later renamed pembrolizumab. His reaction was profound and almost immediate. Within a matter of weeks his tumors had shrunk by half.

Today T.J. blogs for the Philadelphia Inquirer’s web site about his experience. Every three weeks he continues to undergo a 30-minute infusion treatment of pembrolizumab, which has since earned FDA approval. Since starting the trial he has experienced occasional fatigue and nausea, small patches of vitiligo (a loss of skin pigmentation) and a painful case of shingles. Despite the side effects, he says he generally feels better than he’s felt in years.

Best of all, at 41 he’s able to live his life the way he wants.

“I coach both kids’ soccer teams,” he says happily. “Four and a half years ago if you had told me, ‘You are going to end up spending your time running from field A to field B with a bag of soccer balls.’ I would have thought, ‘That’s a pretty good ending to the story.’”

Throughout his journey T.J. has had to make difficult choices, first in rejecting standard-of-care therapy and later in deciding to leave a highly regarded cancer center. Researching his options, seeking additional opinions and doing his homework enabled him to make the right decisions, he says.

“To anyone with a serious diagnosis I would say, ‘Be your own advocate.’ It sounds cliché, but ultimately the decisions on treatment are yours alone to make. You will consult with very smart doctors, but your health is yours and yours only,” he says. “An informed patient that has been able to get more than one opinion and understands the diagnosis knows what their options are and can make the right decision for them.”

 

 

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