Drug Trial for Castleman’s Gets Amazing Results

Carl Guenther routinely came to UAMS from Ohio to help pave the way for the newly FDA-approved drug to treat his Castleman’s disease.

May 12, 2014 | Carl Guenther was once told he had two years left to live. But a new drug treatment study led by UAMS has stretched that once-grim allotment into nine years and counting.

Guenther was about 30 when he noticed he sometimes felt unusually tired. He sweated a little more than normal, too, but he brushed off these seemingly minor complaints. After his first wife died from ovarian cancer in late 2004, Guenther, an Ohio resident, similarly dismissed his night sweats and weight loss as the after effects of stress and grief. He awoke one morning in June 2005 to discover the lymph nodes near his neck were swollen to the size of golf balls.

A biopsy of one of his lymph nodes showed he had a rare lymph node disorder called multicentric Castleman’s disease. The Ohio oncologist treating him told him that even with chemotherapy, Guenther had two years left.

Multicentric Castleman’s disease is a rare blood disorder in which lymphocytes, a type of a white blood cell, are over-produced, leading to enlarged lymph nodes. It also can affect lymphoid tissue of internal organs, causing the liver, spleen or other organs to enlarge. Infections, multisystem organ failure and malignancies, including malignant lymphoma, are common causes of death in patients with the disease.

Guenther didn’t take the news about Castleman’s passively. The night after receiving his diagnosis, he started researching the disease and looking for possible treatments. He discovered that a clinical trial of siltuximab, a new drug treatment for Castleman’s disease, was just beginning at UAMS overseen by Frits van Rhee, M.D., Ph.D., the nation’s foremost Castleman’s expert.

He emailed van Rhee, a College of Medicine professor and director of developmental and translational medicine, and was surprised to hear back from him within 15 minutes. Just a few weeks later, he became the third patient to enroll in the clinical trial.

“Of all the places in the United States for me to be involved in a clinical trial, I never would have thought Arkansas,” Guenther said. “We have the Ohio State University Comprehensive Cancer Center, which is a very good institution, but they couldn’t help me.”

The new drug worked very well for him. He felt no side effects from the treatment, and his symptoms went away. That alone would have been enough to motivate him every three weeks to make the 700-mile trip from home to Little Rock for drug infusion, but the care and people he found at UAMS and the Winthrop P. Rockefeller Cancer Institute made it even easier.

“It’s been a very positive experience at UAMS,” he said. “Every staff member, even the janitor who comes in while I’m getting treatment, they’re all polite, friendly. People in Arkansas are much friendlier than in Ohio. The nurses are fantastic. There’s not a lot of turnover and I’ve had the same nurses for years. That’s nice.”

The FDA recently approved the drug, called Sylvant and developed by Janssen Biotech Inc. of Horsham, Pennsylvania, making it the first FDA-approved treatment for Castleman’s.

“Carl’s case, and others like it, shows what a serious need there is for treatment options for patients with multicentric Castleman’s disease,” Van Rhee said. “With the FDA approval of Sylvant, physicians have a long-awaited treatment option for a group of patients who have been suffering with this chronic, serious and debilitating disease. Carl has been a great help in getting us to this point. His diligent compliance was a great asset in developing Sylvant.”

Unless a cure is found some day, Guenther expects to continue receiving the treatments for the rest of his life.

“I’m doing so well that most of the guys who have come down with me to Arkansas from Ohio can’t keep up with me,” he said. “I attribute that to the treatments. I haven’t felt this good for a long time, and I mean long before I was diagnosed.”

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