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Promise and Progress - Pioneering Patients

Promise & Progress: Special Issue Bloomberg - Kimmel Institute for Cancer Immunotherapy
Issue No. 2016

Pioneering Patients

Date: March 23, 2016

Thomas Kotula

‘I Don’t Feel Like I Have Cancer’

Thomas Kotula, a patient with melanoma being treated by Evan Lipson, is receiving a combination of two immune checkpoint inhibitors, anti-PD-1 and anti-CTLA-4. He comes to the Kimmel Cancer Center every two weeks for the hourlong infusion.

“He was in pretty rough shape the first time I saw him,” says Lipson.  Kotula’s melanoma had spread, including a softball-size tumor in his thigh that made it difficult to walk. By his third treatment, the tumors began to get smaller. A year later they have shrunk by more than half.  The clinical trial he is on, headed by melanoma expert William Sharfman, calls for two years of treatment.

“A major focus of our research involves understanding how to safely and effectively use these new immune-based medications in as many patients as possible,” says Lipson. “One of the potential advantages of immune therapy is that once the immune system is activated, it can keep cancer at bay for long periods of time.”

Kotula, a husband, father of six, and grandfather of nine, says he came to the Kimmel Cancer Center for a second opinion at the encouragement of his children.  His doctor at a community hospital near his home recommended surgery. Lipson had to deliver the bad news to Kotula that surgery would be of little value because the cancer had spread, but he offered him an opportunity to participate in Sharfman’s immune therapy trial.

Kotula has experience relatively mild side effects from treatment, including a rash and some thyroid issues, says Lipson. He and his cancer immunology collaborators are working to better understand how to encourage the immune system to attack only tumors and leave other parts of the body alone.

“He’s living his life,” says cancer immunology nurse Trish Brothers. “Immune therapy has offered real hope to Mr. Kotula, both in terms of combating his cancer and allowing him to avoid some of the debilitating side effects often associated with traditional cancer treatments.”

“I’m so glad I came here. I can’t say enough about these doctors and nurses. They are like family,” says Kotula. “What a difference from a year ago. I don’t even feel like I have cancer.”

Gene Ogle

‘I Beat Pancreatic Cancer’

When Gene Ogle’s doctor told him he had pancreatic cancer, his first question was: “How long do I have to live?” Ogle was just 54 years old when he got the news, and his thoughts immediately turned to his father, who died of the same disease 30 years earlier at 63. Although many years had passed, his memory was clear.  “My father died two months after he was diagnosed. My knowledge was that it was incurable and killed quickly.”

Ogle’s doctor told him that there had been many advances since his father’s diagnosis, and specifically referred to discoveries at the Johns Hopkins Kimmel Cancer Center.  He decided to make an appointment at its Skip Viragh Center for Pancreas Cancer Clinical Research and Patient Care.

Despite the diagnosis, there was some good news. His cancer was not as advanced as his father’s, and he was a candidate for a Whipple procedure, a complex pancreatic cancer surgery perfected at Johns Hopkins. At the appointment research nurse Carol Judkins also talked to him about a clinical trial testing the benefits of giving a pancreatic cancer vaccine before surgery. 

The pancreatic vaccine, developed by Elizabeth Jaffee, supercharged the immune system, drawing cancer-attacking killer T cells to pancreatic tumors. Jaffee had laboratory evidence that giving the vaccine before surgery gave the immune system a step up on the cancer and might help it get at microscopic cancer cells that could cause the cancer to spread. She was working with two young clinical investigators, Dung Le and Lei Zheng, to explore whether earlier use of the vaccine would provide a clinical advantage.

Ogle was well aware of the high rate of pancreatic cancer spread and recurrence. As an engineer, he is a numbers guy. He recalled a survival chart he saw around the time of his surgery.  “It peaked at one year and went down after that. Less than 5 percent of people survived past five years.” says Ogle.

“Enrolling in the vaccine trial was an easy decision for me,” says Ogle. “I still had no hope that I would survive, but I thought if I participated in the vaccine study, I might be able to help doctors move that survival curve far beyond five percent.”

That was nearly six years go, and contrary to the statistics and his own personal predictions, Ogle is alive and doing well. It’s been almost four years since his final vaccination. His cancer isn’t gone, but it’s not growing. With the boost from the vaccine, his immune system appears to be keeping it in check. “I’m still here, and I want to be a message of hope to others,” he says.

Ogle fully expected to become a pancreatic statistic, but not a positive one.  “My perspective is changing,” he says. He is certain the wonderful care he received, including surgery, chemotherapy, radiation therapy, and particularly the pancreatic cancer vaccine, allowed him to beat the odds. “I’m so proud to be a part of these studies. It’s a huge honor,” says Ogle. “Everyone who took care of me—from the receptionist to the nurses and doctors—was top-notch. They all had so much compassion.”

Over the last six years, Ogle estimates that he’s made the 270-mile trip from his home in Roanoke, Virginia, to the Kimmel Cancer Center at least 100 times. There were other comprehensive cancer centers and some good community hospitals much closer to his home. In fact, many of his relatives and friends questioned his choice to travel so far. “I did my research before I made a decision, and Johns Hopkins came up on top,” says Ogle. “I have never regretted that decision—not one time.”

Ogle recently celebrated his 60th birthday, a milestone he never expected to reach. He is also spending time with three grandchildren, two of whom were born after his diagnosis. “I am so thankful that I lived to see them. I didn’t think I would,” he says “I’m beating this disease. That’s a message people need to hear.”

He wants everyone to understand the power and the value of research. “A lot of progress has been made, but there is still a long way to go,” he says. “That’s the only way we’re going to permanently move that survival curve.”