Unique multidisciplinary group provides comprehensive support in battle against cutaneous T-cell lymphoma

Steven Stoll has seen many medical specialists over the years in his fight against cutaneous T-cell lymphoma, a type of non-Hodgkin's lymphoma that appears initially in the skin. But it wasn't until recently that his treatment truly--and literally--came together.

"I began having symptoms three or four years before October 1998, when the condition was diagnosed by specialists in the Holden Comprehensive Cancer Center with The University of Iowa," said Stoll, 57, a retired steam fitter from Madrid, Iowa. "I was told that early detection of this disease is very difficult, as it is quite similar to some non-cancerous conditions involving the skin."

To control the disease, which originally manifested in dry, reddish patches and plaques on his legs, Stoll began undergoing PUVA treatments--a combination of psoralen (P) and long-wave ultraviolet radiation (UVA)--at McFarland Clinic PC in Ames, Iowa. "The ultraviolet treatments were something I had twice a week for a half hour each time. It was like being in a vertical tanning booth," Stoll recalled.

By the fall of 2001, Stoll had developed a more aggressive manifestation of cutaneous T-cell lymphoma. "The lesions were no longer responding to the PUVA treatments," said Kathy Cook, M.D., Stoll's physician at McFarland Clinic and a graduate of the UI Hospitals and Clinics dermatology residency program.

Cook referred Stoll back to UI Hospitals and Clinics, where he became one of the first patients to be seen in the Cutaneous Lymphoma Clinic, a subspecialty clinic organized by Warren Piette, M.D., professor of dermatology, and Brian Link, M.D., a specialist in hematology, oncology and blood and marrow transplantation.

"This is a very new, experimental clinic that brings together specialists with several areas of lymphoma expertise, including radiation therapists, oncologists who treat lymphomas, a dermatologist, and hematopathologists," Piette said. "We're trying to offer hope for patients and physicians who deal with this difficult disease by gathering all the experts we need around one table."

Link said, "Cutaneous (skin) lymphoma manifestations are often seen by dermatologists, while systemic (involving other bodily systems) manifestations are generally seen by medical oncologists. Since lymphomas can behave so uniquely in various organs, it's important to bring specialists together to share different opinions and perspectives."

Piette acknowledges that success has been fleeting in the fight against cutaneous T-cell lymphoma, as the disease often goes undiagnosed for too long and then doesn't respond to treatment in its latter stages. "Slow-moving lymphomas tend to putter along, but when they go bad, they go really bad. They are very difficult to treat, and we ultimately run out of therapies if the disease becomes too aggressive."

One of the Cutaneous Lymphoma Clinic's goals is to discover a better way to treat patients early so they don't have to worry about the latter stages. In advanced cases, "Our strategy is to prolong remissions, and perhaps find a way to cure the aggressive end of the disease," Piette said.

After several years of seeing specialists individually, all major decisions about Stoll's treatment are now being made through the Clinic. A few months ago he received total body electron beam irradiation from John Buatti, M.D., professor and head of the Department of Radiation Oncology. This treatment produced considerable clearing, but when Stoll developed new tumors, Link began chemotherapy and later offered enrollment in a study of CpG 7909, a biologic agent believed to enhance the immune system.

"I feel very good, and I can't think of another place I'd rather be," Stoll said. "They're bringing the best minds together to work on my care."

For more information, patients may call UI Health Access and ask for the Department of Dermatology. For consultation and referral, physicians should call UI Consult.

Steven Stoll's treatment for cutaneous T-cell lymphoma was managed by Brian Link, M.D. (left) and Warren Piette, M.D.