Karl Vollstedt learned that he had multiple myeloma about four years ago. He had no idea he was sick, but his doctor discovered it through blood tests at an annual physical.

"When you hear that you have three to five years to live, it's devastating for the first couple of months," Vollstedt says. "But, you have to get above it emotionally."

To do that, he has focused his attention on educating himself and others about multiple myeloma and its management. He is also rallying people to the cause of myeloma research.

Vollstedt says his myeloma is in the "smoldering," least aggressive stage (as opposed to the "aggressive" or "raging" stages) and he feels great. That has allowed the retired 3M manager to become a leader among myeloma survivors in the greater Twin Cities region. Vollstedt, who lives in Hastings, formed a multiple myeloma support group consisting of people from eastern Minnesota and western Wisconsin and they gather monthly.

"It's not a real pleasant outlook," he says of myeloma. "There are a lot of emotional stories and they're hard to hear, so we strive to keep the meetings informative and positive. We've turned it into an educational support group.

"Education," he says, "is a substitute for emotion."

Vollstedt maintains that coping with cancer is much less frightening if one understands the disease—how it works, how it is treated, and how researchers are tackling the problem. He has found the International Myeloma Foundation (IMF)—an organization dedicated to improving the quality of life of myeloma patients while working toward prevention and cure—to be an important resource for support and information. Through the IMF, Vollstedt became acquainted with University of Minnesota Cancer Center researcher Brian Van Ness, Ph.D., whose research focuses on genetics and myeloma. The support group subsequently toured Van Ness' molecular genetics laboratory at the University.

Vollstedt's attitude illustrates the way many patients have changed their view of cancer. Increasingly, cancer patients live with the disease for many years, and while they wait for a cure, they have learned they must seek out care that will minimize its spread, the side effects of treatment, and the complications of the disease. Cancer patients have subsequently become more involved in making decisions about their own care.

Vollstedt has several suggestions for taking charge. "You need to keep track of everything you do," he says. "It's trial and error with cancer drugs, so you have to understand the drugs, their side effects, and ask a lot of questions. And, you shouldn't hesitate to get a second opinion."

While actively engaged in the present, Vollstedt also looks to the future—through research. He encourages myeloma patients to submit a sample of their DNA to Bank on a Cure and encourages them to foster awareness of this lesser-known cancer.

"People with myeloma must spread the word about this disease," Vollstedt says.

He backs his talk with financial support for Van Ness' research.

"Brian's work will help all of us," he says. "But it all costs money. That's why I'll do anything to help solicit funds for research. There's so much research going on with myeloma. It's a good feeling to know that things are being done that will help you."

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This story was originally published in the University of Minnesota Cancer Center 2007 Annual Report.