Pancreatic cancer chat room

Local group leads U.S. fight for pancreatic cancer research

Local group leads U.S. fight for pancreatic cancer research . Mulling it over, stressfully

Paula Kim only wanted to find some information about her father's killer.

Diagnosed with pancreatic cancer on the last day of 1997, Daniel Kim died in March 1998.

Paula Kim turned to the Internet for help as her father was dying, posting questions in a medical chat room run by Maryland's Johns Hopkins University. It wasthere that Kim, then a Rancho Palos Verdes resident, found a kindred spirit in another Southern California woman, Pamela Acosta Marquardt.

Those first conversations expanded to include others, leading to the inevitable "we ought to do something."

They knew what they wanted to do: raise awareness and, more importantly, the level of research dollars spenton pancreatic cancer.

Acosta Marquardt suggested a fund-raising event.

Working quickly, they put together a November 1998 black-tie dinner and auctionin Beverly Hills. The e-mailing activists nevermet in person until the night before the event, which turned out to be a smashing success, raising $120,000.

By early the next year, they officially formed a nonprofit advocacy group, the Pancreatic Cancer Action Network and, shortly after, opened a Torrance office for the nationally focused organization.

"We realized that the only way to make adifference at all is to start out with what we had, which was nothing, and to work together," said Kim, a general contractor who was working in construction consulting at the time she co-founded the group.

For the first 15 months, it was all volunteer. Two years ago, the organizationhad one paid staffer. In July the group moved its office to El Segundo and now has 10 full-time paid staffers. The staff pursues the group's mission of helping pancreatic cancer patients and their families by providing information and lobbying for research funds.

Cancer of the pancreas is a quick killer. Life expectancy after diagnosis of metastasis -- the spread to another part of the body -- is three to six months. According to the group, the cancer's 99 percent mortality rate is the highest of any cancer. More than 30,000 people are expected to be diagnosed this year in the United States.

Kim said the young group's role is like the hub in a wheel of spokes, bringing together patients, researchers, funding sources and others to make things happen.

As the first advocacy group for the disease, there's been a lot of groundbreaking to do.

"Before we went to Washington, D.C., in 1999, nobody had ever set foot in that town to talk about pancreatic cancer and the needs of the patient," Kim said.

The Pancreatic Cancer Action Network -- called PanCAN for short -- has a national agenda, and just happens to be based in the South Bay. It works on many levelsto help bring about grass-roots organizing around the country. It also serves as a vital resource for newly diagnosed patients and their loved ones.

Executive Director Julie Flesh man said people who call the American Cancer Society or the National Cancer Institute to ask about pancreatic cancer are directed to PanCAN.

PanCAN then providesindividualized packets of information and lists of doctors in their area who have worked with pancreatic cancer. The group also has information on clinical trials that a newly diagnosed patient might be seeking.

In 1999, the National Cancer Institute designated $17.5 million for pancreatic cancer research, Fleshman said. As a comparison, breast cancer research received $800 million.

Things are going in the right direction for PanCAN. In 2001, NCI directed $27.5 million for pancreatic cancer.

The medical research community is very receptive to PanCAN's efforts, Fleshman said.

"These are doctors and researchers who are very passionate about what they are doing, and are very excited to havesomeone on the sidelines cheering for them," Fleshman said. One of the primary goals of such research is to develop an early detection tool, akin to the mammogram for breast cancer or the PSA test for prostate cancer.

The more people who have their cancer detected earlier, the more who would beeligible for poten tially life-saving surgery. At present, only about 20 percent of patients are eligible, Fleshman said.

PanCAN has named November, the month of its annual black tie fund- raiser, as pancreatic cancer awareness month, and is working on Congress to get an official designation.

For more information, visit the group's Web site at www.pan can.org, or e-mail info@pan can.org, or call 877-272-6226.

Mulling itover, stressfully

Having an emotional argument or just mulling over such a fracas in your head can be hard on the heart.

A recent study has led research ers to believe that the blood- pressure raising fights with spousescan be more heart-disease- provoking than running marathons.

Just thinking about stressful, but nonemotional events like running take less of a toll in terms of blood pressure than sitting around remembering how mad you were about some recent confrontation.

Researchers came to their conclusions after doing an experiment in which subjects were exposed to stressful events, either emotional or nonemotional.

The scientists were trying to look at thelingering effects of a single stressful event on blood pressure. The effects of long-term, ongoing stress are well known for contributing to the risk of heart disease. In their experiments, the scientists at University of California, Irvine were able to counteract some of the stressful effects of rumination about stress by distracting subjectsimmediately after their stressing experiences, preventing them from lingering on the issue.

They found that people who are prone to stewing over arguments would benefit from some sort of social support system that prevents the rumination. Send comments to Lee.Peterson@daily breeze.com or to Medical Notebook, the Daily Breeze, 5215 Torrance Blvd., Torrance, CA 90503-4077.