Plainfield pancreatic cancer patients face tough odds, lack of research funding

PLAINFIELD – Margaret Stachon was headed in Monday to her biweekly chemotherapy session before her doctor, Sonia Baweja, recommended a break from the treatment during their pretherapy checkup.

Baweja told Stachon her platelet counts were a little low, which was her body’s way of telling her to take it easy on the radiation.

Stachon, a 79-year-old Plainfield resident and patient at Edward Cancer Center, is entering the eighth month since her pancreatic cancer diagnosis. She has responded well to chemotherapy.

“She still cleans and mops the floor,” said Stachon’s daughter, Clara Gleason.

Gleason and her father, Andy, and daughter, Sara, joined her mother in the checkup.

“I don’t feel bad after the treatments,” Stachon said. “I’d love to go back to work.”

The good progress puts Stachon in the fortunate minority of pancreatic cancer patients.

“Someone once said, ‘Pancreatic cancer gives oncology a bad name,’ ” said Dr. Lawrence Schilder, medical director for oncology at the University of Chicago Medicine Comprehensive Cancer Center at Silver Cross Hospital.

Schilder was talking about pancreatic cancer’s reputation for not responding well to cancer drugs. It has confounded the world’s oncologists on how it’s formed, what causes it and how to effectively treat it.

But research has to be appropriately funded to get those answers. And pancreatic cancer hasn’t received the same support other cancers get, despite November being dedicated to awareness of the disease.

Deadly cancer

According to data provided by the Pancreatic Cancer Action Network, pancreatic cancer is the fourth-leading cause of cancer-related deaths in the United States, and is on track to become the second-leading cause by 2020.

It has a five-year survival rate of 7 percent, and about 72 percent of patients will die in the first year. In 2015, almost 50,000 people will be diagnosed and just over 40,000 will die.

The grim numbers are part of the reason oncologists suggest patients and their families not research the disease, Schilder said.

“In that conversation, [the oncologist] did say to us, ‘Don’t go home and search the Internet. It isn’t going to help you,’ ” said Nora Campos, a Plainfield resident who six years ago lost her 45-year-old husband, Javier Campos, to pancreatic cancer.

Dr. Sanjiv Modi, a medical oncologist at Joliet Oncology-Hematology Associates, said there are a few credible organizations patients can go to for information, including the American Society of Clinical Oncology, National Comprehensive Cancer Network and ClinicalTrials.gov.

Javier’s story is similar to those of many diagnosed with the disease. He woke up one day in June and wasn’t feeling well. When Nora saw him, he was jaundiced.

They went to their doctor, then the emergency room, where they were notified of a late-stage tumor in his pancreas.

“We both knew the second they said that, even without biopsy or staging, it was bad,” Nora Campos said.

Javier pushed through chemotherapy. But after seven months of fighting, the Marine veteran felt so sick the couple and their two daughters made the tough decision to put Javier in hospice care.

He died nine months after being diagnosed.

Treatment

Part of what makes pancreatic cancer so quick and deadly is the location of the pancreas within the body.

“It’s an organ in a relatively hidden place,” said Dr. Alexander Hantel, director of medical oncology at Edward Cancer Center. “We’re rarely able to find it early because there’s no outside symptoms. It’s also in a bad spot in the body because several critical blood vessels run right past it.”

Hantel, who specializes in hematology and oncology, said most patients come in with late-stage inoperable cancer.

Modi said the best treatment is to attack it early on. But there isn’t a good screening tool. Detection is often achieved by looking for symptoms such as diabetes or jaundice.

Since 1990, trends in cancer rates have gone down for almost every type of cancer except for pancreatic and liver cancers, according to American Cancer Society data.

About 15 years ago, cytarabine was the only known drug that had an effect on pancreatic cancer patients. But that effect mostly helped patients feel better until they died, Schilder said.

Three years ago, a breakthrough led to a combination of drugs increasing response rates from 9 percent to 32 percent, Schilder said.

“Developments are coming from the immunotherapy room,” Schilder said. “We may have played out our hand of chemotherapy, but we can add another pillar to the treatment.”

Hantel said science has not led to a lot of clues and treatments, but that may be beginning to change with laboratory results showing genetic clues to pancreatic cancer that could help find better treatments.

Funding research

“Compared to breast cancer research, it gets a very small percent of the funding,” Hantel said. “I’m not saying breast cancer doesn’t need funding. But pancreatic has a lot of catching up to do.”

In fiscal 2013, the National Cancer Institute's breast cancer research investment totaled $559.2 million. Pancreatic cancer research investment was $101.9 million. Prostate cancer received $255.6 million.

Hantel suggested one reason for the disparity was that pancreatic cancer “doesn’t have a political constituency.” It attacks men, women, children, middle-aged adults and seniors.

“It’s uniquely aggressive and refractory to treatment,” Hantel said.

That’s why Nora Campos chose to do something about it after her husband died.

She went to a local affiliate meeting of the Pancreatic Cancer Action Network in Plainfield and found her calling.

Now she is the co-advocacy chairwoman of the network in Illinois. Her oldest daughter is the advocacy chairwoman for Indiana.

Nora Campos and Plainfield volunteer Melissa Kline, whose father is battling pancreatic cancer, have recently spurred resolutions in Plainfield, Joliet and the state proclaiming Nov. 13 as Pancreatic Cancer Awareness Day.

For Kline, the fight is at home, where the hospice social worker left her job to take care of her father, Simon Nackovic.

At the end of January 2014, on a Wednesday, Nackovic started to have some stomach issues. By Saturday morning, he was in intensive care dealing with jaundice and heart problems.

Nackovic finished cargoplaten treatment in February, but was reintroduced to the chemotherapy drug after his pancreatic tumor spread to the liver.

“His quality of life is definitely different now,” Kline said. “He gave up driving. He is appreciative a lot. He sees things a lot differently. I know he’s really tired.”

Her father’s struggle is why Kline decided to actively advocate for awareness.

“To have a disease that is so deadly and affects so many people, and it’s still not funded for much research, that’s unacceptable,” Kline said.

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PANCREATIC CANCER FAST FACTS

• Fourth leading cause of cancer-related death in the U.S.

• Five-year survival rate of 7 percent

• Estimated 48,960 people will be diagnosed with pancreatic cancer in 2015

• Estimated 40,560 people will die from it in 2015

• About 72 percent die within first year of diagnosis

• New cases will more than double by 2030

• Risk factors include: smoking, family history, obesity and diabetes

• May cause vague symptoms, pain, weight loss, jaundice, loss of appetite, nausea, changes in stool, diabetes

• Surgery only possible in 15 percent of patients with pancreatic tumors

Source: Pancreatic Cancer Action Network