A Tough Battle Against Pancreatic Cancer
Note: This story orginally appeared in the St. Louis Post-Dispatch
How I Did It:
Woman Coaxes Insurance Company to Pay for Experimental Chemotherapy
By Cynthia Billhartz Gregorian
March 26, 2009 – Linda Gruchala began having mild stomachaches in April 2005. She ignored the pain at first, thinking it was stress related, because she was building a house and caring for her dying father.
But the pain grew worse. By August she had it round-the-clock.
"It was a dull ache," Gruchala said. "I wasn't sleeping well at night, and I was having a hard time concentrating during the day."
Her primary physician ran tests but couldn't find anything wrong. So Grachala made an appointment with a gastroenterologist who prescribed a colonoscopy and endoscopic ultrasound in September. The pain was so persistent that Gruchala went straight from her father's funeral, skipping his burial, so she could prepare for the colonoscopy the next day. Those tests also came back negative.
Gruchala's husband, Richard, told the gastroenterologist that his wife "is a tough gal" and asked if there weren't some other tests they could perform. The gastroenterologist recommended she see a doctor to get anti-anxiety drugs instead. But the drugs didn't help, either.
So the gastroenterologist finally prescribed a CT scan, which revealed a 3 1/2-inch tumor on the tail of her pancreas that had grown into her stomach and colon.
According to the American Cancer Society, only 20 percent of pancreatic cancer patients live up to a year after diagnosis and only a paltry 4 percent live five years or longer. It's the most deadly of all cancers.
Right away the Gruchalas began researching which medical centers in the country had the most success treating pancreatic cancer. They found that the Siteman Cancer Center at Barnes-Jewish Hospital ranked second after Johns Hopkins University in Baltimore.
Two days later, Gruchala had an appointment with Dr. David Linehan, a gastrointestinal surgeon at Siteman.
"He immediately gave me so much hope," Gruchala said. "He said I definitely should have surgery and that my chances were better than a lot of his patients, because the margins of my tumor were well-defined. He didn't think there were any major blood vessels or lymph nodes involved."
Linehan removed the tumor, half of her pancreas, 40 percent of her stomach and part of her colon. Then, to deter a recurrence, he and Dr. Benjamin Tan, a medical oncologist at Siteman, recommended an experimental regimen of chemotherapy and radiation.
Linehan said surgery won't help 80 percent of patients diagnosed with pancreatic cancer because it has usually metastasized. And of the 20 percent who have surgery, only 11 percent survive five years or longer.
The experimental treatment, which was developed by Dr. Vincent Picozzi, an oncologist at Virginia Mason Medical Center in Seattle, was showing promising results.
Patients were being given cisplatin, 5-FU and alpha interferon with radiotherapy.
INSURANCE WOULDN'T PAY
But Gruchala ran up against an obstacle.
"Insurance wanted to pay for standard treatment but not this combination of drugs because they were experimental for pancreatic cancer, and that's a clause in my insurance," Gruchala said.
The Gruchalas thought about paying for the costly treatment out of their own pocket. But her insurance told her that they also would not pay to treat any side-effects from the treatment. That included, Grachala said, potential health problems that turn up years from now.
Linehan said he is infuriated by this since current pancreatic cancer therapies have such a low success rate.
"I think it's terrible that these insurance companies won't pay for patients who want to be involved in studies," he said. "We desperately need novel treatments, and to deny them this treatment is criminal."
Gruchala began traditional treatment right away. She also began writing letters and making phone calls, appealing to her insurance company to pay for the treatment.
"I told them exactly what the treatment involved and explained that even though it's experimental for pancreatic cancer, (interferon, an immune stimulator) wasn't an experimental drug," she said. "I didn't want them to think it was a weird treatment where you run off to Mexico."
The drugs used in the experimental treatment, which include cisplatin and alpha interferon, have long been FDA approved for use in treating other forms of cancer. Just not in that combination and not for pancreatic cancer.
After several appeals over about six weeks, Grachala's insurance finally agreed to pay for the treatment "off-label" and not as part of the study.
Gruchala began a grueling six-week regimen of daily radiation treatments while chemotherapy was pumped into her body 24 hours a day. One day a week she would go to Siteman to get cisplatin; two other days, she'd get the alpha interferon.
After that, she took a four-week break, then received gemcitabine, a chemotherapy drug, once a week for six weeks.
Friends, she said, made a sign-up sheet to make meals for her and drive her to her appointments across the river.
"They'd sit and wait the entire morning then drive me home," she said. "That was an amazing thing for me. I always knew when I woke up there would be a friend waiting for me to take me to treatment. It kept my spirits up."
Linehan notes that of post-surgical patients who participated in the pancreatic cancer study at Washington University and other clinics nationwide, 41 percent were still alive three years after diagnosis. Survival rates at three years are about 20 percent for post-surgical patients who don't get interferon.
Those numbers, he said, appear to be dropping as those patients near the five-year survival mark but seem to be markedly higher than the 11 percent who typically survive five years without the experimental treatment.
Home: O'Fallon, Ill.
Occupation: School psychologist
What she did: Gruchala is defying odds as a 3 1/2-year pancreatic cancer survivor
How: By taking a proactive approach in getting experimental treatment and convincing her insurance to pay for it.
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