Catching falling stars

A trio who met in a chat room about pancreatic cancer harnesses celebrity star power to rein in the killer, whose victims include Jack Benny, Dizzy Gillespie, Margaret Mead, Juliet Prowse, Henry Mancini and Donna Reed.
by Brian Simon
Published August 22, 2002

Julie Fleshman was a law and MBA student at the University of Santa Clara in 1999 when her father went to his doctor complaining of stomach pain. The doctor sent her father home with a package of Tums.
The pain didn’t subside. Maybe it was gallstones, he was told. A CT scan revealed nothing out of the ordinary. Then one day Fleshman’s father awoke jaundiced. The diagnosis was clear: Inoperable pancreatic cancer. He was dead four months later at the age of 52.
“I couldn’t believe there were no treatments,” Fleshman said.
During this time Palos Verdes resident Paula Kim, Rancho Cucamonga resident Pamela Acosta and Washington D.C. resident Terry Lierman also had parents suffering for pancreatic cancer. In the course of researching the disease, the three met in a John Hopkins University web site.
Like Fleshman, they were alarmed to discover how little help was available for the disease’s victims. The three teamed up to found PanCAN (Pancreatic Cancer Action Network). Working over the Internet, they planned a black tie gala in Beverly Hills to raise funds for pancreatic cancer research. It attracted over 400 guests and raised $120,000.
The following year Fleshman completed her law and MBA studies and then forewent a lucrative legal career to become the executive director of PanCAN. Last month, she coordinated the fast growing organization’s move from its original location in Torrance to the Rosecrans corridor in El Segundo.
Almost certain death
By the end of this year over 30,000 Americans will be diagnosed with pancreatic cancer. Of that number, over 29,000 will die from the disease. But despite a 99 percent mortality rate, the fourth leading cause of cancer deaths receives little national attention and the least amount of federal funding of any cancer. PanCAN hopes to change that.
PanCAN’s chief goals are to focus national attention on finding a cure and to increase research funding for pancreatic cancer.
One approach to increasing awareness about the disease has been to publicize its best known victims, among them: comedienne Jack Benny, actor Michael Landon, composer Henry Mancini, anthropologist Margaret Mead, dancer Juliet Prowse, author Irving Wallace and Cardinal Joseph Bernardin.
Its efforts have begun to pay off.
“When we started, we were getting $17 million per year. The estimate for 2003 is $27.5 million,” she said. PanCAN continually lobbies Congressional Representatives, scientists and other cancer groups. It has also established a Patient and Liaison Services (PALS) network — a one-stop center for patients, their families and health care professionals to offer information about the disease, and to learn about prevention programs, early detection and treatment options.
Early this year, two separate researchers reported that they had isolated a gene predisposed to pancreatic cancer. And just two weeks ago a University of Michigan report indicated that aspirin might reduce pancreatic cancer rates by as much as 43 percent.
The pancreas is a six-inch-long gland that lies in the upper abdomen and is responsible for producing a fluid that aids in digestion, and insulin,, which enables the body to use sugars and store fats. Its cancer has few early warning signs (heartburn, lower back pain and digestive problems are most common, but are also symptomatic of many other ailments). Once the tumor spreads to other organs the patient is typically at death’s door. The cause of the malady is unclear, though smokers are believed to be at higher risk. Most of the victims are over 50 years of age. Patients are usually told they will live only three to six more months following diagnosis.
There have been no significant medical breakthroughs. Only two FDA-approved drugs are on the shelves, neither of them a cure. Gemzar, approved in 1996, and 5FU (around since the early ‘70s) can improve the quality of life for certain patients. But despite the bleak prospects Fleshman remains upbeat.
Finding inspiration
“Our message is one of hope, that there are options available, there is education and these patients aren’t alone,” she said. “And there are survivors out there — miracle patients living with the disease.”
One such patient is Joy McCully, of Manhattan Beach. The 59-year-old was diagnosed in October 1999. She initially visited her doctor complaining of severe upper abdominal pain. As with Fleshman’s father, heartburn was thought to be the reason. But McCully began to lose weight and, after three months, a CT scan revealed the worst. Fortunately, McCully was among the 20 percent of pancreatic cancer patients eligible for the Whipple procedure — a complicated surgery that removes a portion of the pancreas. Her cancer had not spread to other her organs, allowing for the surgery.
McCully underwent a battery of radiation and chemotherapy treatments in 2000 and her blood count or “markers” returned to normal levels. But the cancer came back in January. She goes to UCLA for chemotherapy every week and is scheduled to continue for another four to six months.
McCully’s weight, normally 130 pounds, is down to 107 and she has lost her hair. But she says she is doing well. “I feel fairly good most of the time,” she said. “When I feel bad it’s due to the chemo. I’m a bit tired, but it’s a good excuse to take naps.”
McCully recently moved to Manhattan from the Palo Alto area to be closer to her daughter, who also resides in Manhattan. She travels frequently and visits friends. And she is a stone’s throw from a number of favorite local eateries.
“The reason I moved to downtown Manhattan Beach was to walk to food — that’s a primary thing in my life,” she said.
McCully is in frequent contact with PanCAN and has agreed to contribute to an upcoming book about pancreatic cancer. She attended the organization’s now annual “Evening With the Stars” fundraiser in Beverly Hills last November and has become an inspiration for other patients.
“The support has been just unbelievable,” she said. “When you’ve had an illness like this and see so many people and children worse off, it’s hard to feel sorry for yourself. I was a real estate agent for 15 years and my mother had just died when I was diagnosed. It was like being given permission to stop working. I’ve had a wonderful life ever since, except for being sick. I’m lucky to be here.”
In addition to local staff, volunteers across the country are offering their time and energy to further the cause. Team Hope, as it is referred to, now has 38 affiliates, up from just three in 2000.
The volunteers have arranged walk/runs, golf tournaments, dinners and other fundraisers. And thanks to a growing number of individual and corporate donations PanCAN is able to pay its employees and maintain its new 3,000-square-foot El Segundo office.
“We are contacted everyday by passionate people who want to do something in their community,” stated Fleshman. “It’s the willing, but unwilling fraternity...”
This year’s “an Evening with the Stars” will be held Saturday, Nov. 9 at the Beverly Hilton Hotel. HBO director Robert Wuhl will be honored with the Hack Benny Humanitarian Award. Benny died of pancreatic cancer in 1974. Tickets are $300.
For more information about PanCAN, call 725-0025 or visit Their office is located at 2221 Rosecrans Ave., Suite 131.