A year ago, Keith Rohleder, 54, had a softball sized tumor on his calf and purple and brown spots on his body. He didn’t know about clinical trials when he was diagnosed with BPDCN, a rare blood cancer.

Doctors gave him a prognosis of living 12 to 22 months and suggested he prepare for death. But Rohleder and his wife, Patricia, weren’t giving up.

A friend suggested contacting The Leukemia & Lymphoma Society (LLS). That’s how the couple, who live in Maryland, found out about clinical trials for his disease. His wife says he didn’t hesitate to get started.

“He said, ‘If I can’t save myself, I can save others,’” she says.

Rohleder did a clinical trial at the Dana-Farber Cancer Institute in Boston. After three treatments, his cancer went into remission. A few months later, he completed a full stem transplant, using his sister’s stem cells. He’s now six months into a yearlong treatment.

“The theory is that I’m supposed to be on the way to full recovery,” says Rohleder, who’s monitoring his condition daily and is grateful for his second chance at life with his wife and two adult sons.

New Treatments

According to the National Institutes of Health, clinical trials are research studies “aimed at evaluating a medical, surgical, or behavioral intervention.” Trials are the primary way researchers find out if new treatments, including drugs and medical devices, are safe and effective.

“Without clinical trials, there would be no new treatments,” says nurse Alissa Gentile, LLS Director of Clinical Trial Services, who heads up the LLS Clinical Trial Support Center.

Still not enough patients are participating.

Gentile, who helped the Rohleders find clinical trials, says only three to five percent of U.S. cancer patients get involved in clinical trials. She and others in the field hope to increase those numbers.

“Through the LLS Clinical Trial Support Center, the majority of eligible patients enter into one or more clinical trials,” Gentile says, noting she and her colleagues work with patients and families throughout the process.

While patients are often hesitant at first, Gentile reminds them clinical trials are safe and regulated.

“Not all trials can cure people but they can definitely extend and provide people with a better quality of life,” she says.

Hope

Rohleder praises the cancer treatment advances made by clinical trials, knowing it will benefit the next generation of patients.

“Now we have really good technology and some very good physicians and now there is hope,” he says. “Hope is always good.”

He advises other patients to be “robust” in trying clinical trials.

“Trust in it,” he says. “Be strong and accept the outcome.”