Deadly skin cancer just now being studied

The deadliest form of skin cancer is a little-studied type you've probably never heard of. After he died, Martin Whatley's classic rock 'n' roll guitar became his last weapon against it.

Whatley's widow carefully pulled the pristine 1964 Fender Stratocaster from under their bed and put it up for auction on eBay, pledging half the proceeds for Merkel cell carcinoma research and the rest to pay his medical bills. She knew scientists were having little luck finding money to study a killer so rare that few doctors even recognize it.

"It's one thing to give a donation. But I was thinking if I did it on eBay, so many people saw eBay, maybe it would make some people out there think about bumps that they had," and seek help sooner, says Dana Martin Whatley of Austin, Texas.

She wound up donating $15,000 last year to the University of Washington, where Merkel cell authority Dr. Paul Nghiem is collecting samples of patients' tumors to unravel genes that fuel the cancer.

Merkel cell carcinoma provides a glimpse of the desperate intersection of research dollars and the suffering wrought by rare diseases.

It's a cancer only recognized as distinct from melanoma about 15 years ago. Diagnoses have tripled to about 1,500 a year.

The first sign is a painless bump, often reddish to purple, that can resemble a benign cyst. But Merkel cell carcinoma spreads rapidly once that bump appears. A third of patients die in three years.

Yet there have been no well-controlled studies of the best treatment. Intense radiation is key -- unlike melanoma, Merkel cell carcinoma seems unusually radiation-sensitive, says Nghiem. There is no evidence that adding chemotherapy helps.

In January, University of Pittsburgh scientists announced they'd discovered a previously unknown virus lurking inside Merkel cell tumors, which might be the cancer's trigger.

"If we'd had funding, we could have done this easily five years ago," says lead researcher Dr. Patrick Moore.

For two decades, Merkel cell research has depended on small pilot grants and family fundraising like Whatley's, says Nghiem. Last week, he won what is believed the disease's biggest research grant to date, $840,000 from the American Cancer Society.

Meanwhile, a small fraternity of Merkel cell patients has banded together to push education and to urge patients to donate tumor-tissue samples to Nghiem's lab.

"There's just not an awareness of this at all," says Keith Boyer, 72, of Burlington, Iowa, whose Merkel cell hasn't returned since radiation two years ago.