Pancreatic cancer kills nearly everyone who gets it. And quickly: Death typically follows diagnosis by less than a year.
The disease takes its victims so fast they do not have time to help raise funds. Research funding lags far behind that of many other cancer research programs.
Elaine Chastain discovered all these truths within days of her diagnosis.
"It seemed like they were talking about somebody else," said Chastain, 62. "But when it really soaked in that they were talking about me, I guess my first reaction was that no human could tell me when I was going to die. I thought, why should I plan on dying immediately when that may not be the Lord's plan? I had to continue living, rather than preparing to die."
Chastain entered the emergency room at a Fort Worth hospital on Feb. 8, 2003, with stomach pain: "It felt like a knife going through me."
Doctors gave her pain medication and ran tests. When Chastain went to her doctor March 10, she was told she had pancreatic cancer and that, with treatment, she might live nine months.
The tumor had split and traveled to other areas. The disease was too advanced for surgery or radiation therapy. Chastain was placed on the chemotherapy cocktail GTX and responded well.
"The doctors have been pretty amazed that I am in as good a condition as I am," she said. "Some people are afraid of the chemotherapy. You'd hear stories about the cure being worse than the disease. Now they have so many medicines to counteract the side effects. I didn't have any of the problems that I thought I might have."
But after more than 18 months of no tumor growth, the tumors began growing and spreading again. Chastain took her final chemotherapy last November.
"On rough days, I hold onto God and ask Him to hold us tight," Chastain said. "He's my friend, not my enemy. I have a feeling that He's just as heartbroken about my illness as I am."
Pancreatic cancer is the fourth-leading cause of cancer death in the United States, according to the American Cancer Society.
There were an estimated 32,180 new cases in the United States in 2005 and 31,800 deaths, according to the National Cancer Institute.
In June 2004, a firm based in Cambridge, Mass., began testing a vaccine in cooperation with the National Cancer Institute. The trials by Therion Biologics Corp. were based on earlier tests that showed a 12 percent increase in one-year survival rates of pancreatic cancer victims. Still, most of the people in the earlier studies died quickly, as did most of those on chemotherapy and those who underwent surgery.
"We don't find this cancer until it's pretty advanced," said Dr. Mark Redrow, clinical oncologist on staff at Harris Methodist Fort Worth hospital. "Cancers have the ability to become resistant to multiple drugs. You can get down to 1,000 cancer cells, and when they grow back they are resistant to the chemo."
Therion's researchers concluded that the best way to kill the disease was to use the vaccinia virus (used to fight smallpox) to train the immune system to attack the cancer cells. It has fewer side effects than traditional chemotherapies, and subjects who developed an immune response did live slightly longer, said Dr.
Thomas J. Schuetz, Therion's chief medical officer.
The work created hope. Another year might bring another breakthrough therapy to test.
"The medical need of those with pancreatic cancer has got to be the highest in all medical oncology," Schuetz said. "Most patients understand their prognosis and their limited treatment options. But some of the people in our studies have lived longer."
Pancreatic cancer sufferers are often surprised by the limited research funding and treatment options.
"A lot of funding is a result of public awareness," said Rod Page, director of research for the Center for Cancer and Blood Disorders in Fort Worth, a vaccine trial site. "When you have survivors, those people are out there to raise awareness and ...
research dollars for that particular type of cancer. When everyone from that cancer dies, you don't have those survivors."
With more research dollars, investigators might be able to look into ways to test for the disease earlier, or for genetic therapies.
"We need to find something new that hasn't been invented to treat this disease," Redrow said. "Because it might help people with other cancers as well."
In January, Chastain was one of about 250 patients in the United States accepted for the vaccine trial. But after two months she dropped out. The therapy wasn't working; the tumors were growing and all her cancer markers were up.
Chastain was offered chemotherapy that had been successful with colon cancer patients but decided against it. It might have extended her life six weeks, Chastain said.
"I felt like I'd be spending my energy fighting the side effects," she said. "And it was not really giving me any additional time to speak of."
On Wednesday, Chastain was at home, suffering from pain, nausea and fever. After living more than a year longer than the experts had predicted, Chastain decided that she did not want to die at the hospital. Her husband was checking into hospice care.
"At this point, each day is a miracle," Chastain said. "This is a wonderful celebration of life. My regret is what I'm leaving behind: my family, my husband, not what I'm facing. What I'm facing is nothing." ONLINE:||| www.pancan.org, Pancreatic Cancer Action Network; www.cancer.gov, National Cancer Institute. Mitch Mitchell, (817) 390-7420 mitchmitchell@star-telegram.com