A Statistic of One: Fighting Pancreatic Cancer, Fighting for Research

More than two years ago, Joe Grasso was told he was going to die. But his treatment at Morristown Memorial Hospital has him hopeful he's still got quality time left.

After digestive problems and severe weight loss sapped Grasso's strength, doctors discovered he had Stage 4 pancreatic cancer; the prognosis was predictably grim. Most with Stage 4 pancreatic cancer have about 3 to 6 months to live. He knew he might not have long.

"I was very fatalistic when I found out," he said, seated in the dining room of his mother's Ridgewood home. "Things like this do happen in life. 'Why not me?' I said."

Grasso had a premonition something was wrong weeks prior to the discovery of the cancerous cells. Over breakfast with his wife he said, "Life is just too good right now, everything is just going too nicely. Something's around the corner.

"And when it came around the corner it was no surprise to me," he said.

Certainly wrestling with a typhoon of emotions and worry, Grasso said he wouldn't let the weight allow him to become downtrodden. "Some might just put their head on the pillow and give up, but that's not me."

"I can't see a price not paying to be able to be engaged in life and to be able to be productive."

The Diagnosis and Treatment

By the time Grasso's doctors diagnosed him, the tumors from his pancreas had metastasized and spread to his lungs. He'd had digestive problems and lost roughly 20 lbs. of weight within several months, two of the more common symptoms of the disease. Other patients frequently complain of severe back and abdominal pain, and jaundice often triggers a diagnosis. By the point those symptoms are apparent, the disease has already reached advanced stages. It did for Grasso.

Currently, no early detection system has been developed, partially because the pancreas is so deep in the abdomen and the symptoms are just so vague.

"The top priority at this point is to come up with some means of early detection," Grasso said.

"That will save almost as many lives as a cure. We have an early detection for almost every high-morality cancer–breast cancer, prostate cancer, lung cancer. 1 in 75 in this country will contract pancreatic cancer, and when they find out it will be too late."

Something needs to be done, he says.

30 Years and Little Progress

Typically, there are a few standard traditional treatments for pancreatic cancer. The Whipple procedure–named after a Columbia Presbyterian doctor who'd developed the procedure decades ago–essentially redirects the digestive system. Surgeons then remove the cancerous portion of the organ or the organ entirely. This option can only be used in a minority of patients due to the tumors often not being 'localized' and thus, inoperable. There's also radiation treatment combined with chemotherapy, which has seen a modest increase in survival expectancy, but typically not greatly.

Such treatment options have made little progress in 30 years, Grasso said, and the grim statistics bear it out: pancreatic cancer is the fourth leading cause of cancer death in the United States. Seventy-six percent f patients will die in the first 12 months of diagnosis, and the five-year survival rate is less than 5 percent.

Despite the statistics, pancreatic cancer is the most under-funded among leading cancer killers, Grasso said. It gets less than 2 percent of the National Cancer Institute's annual research budget. And according to the Pancreatic Cancer Action Network, the disease is on the rise.

There appear to be hereditary links, particularly with a significantly a higher rate of incidence with African Americans and Ashkenazi Jews; smoking (Grasso said he smoked briefly in his 20s; he also had an aunt die of pancreatic cancer–she lived a few months after diagnosis) and possible links to alcohol. Each link though remains just that–a mere link. There is still little understanding of what causes the disease, and there's certainly no cure. There isn't likely to be one on the near horizon either. Not yet, anyway.

Now 63, Grasso says he's come to terms with his own mortality, and he says he's hopeful to make it another year, but breakthrough research is allowing Grasso a longer lease on life.

New Research, New Hope

Grasso's currently on what's known as the GTX regimen, developed by Dr. Robert Fine of Columbia Presbyterian Hospital. A combination of three chemotherapies–Gemzar, Taxotere and Xeloda–in a particular pattern, at a certain level, and in a certain sequence, this regimen has brought life expectancy to roughly three years, a stark contrast to the half-year prognosis that has been the norm.

Grasso's doctor, Dr. Stephen Schreibman at Morristown Memorial Hospital, implements Fine's research in a clinical setting. "Most of my pancreatic cancer patients are on the regimen," he said.

Ten years ago, Schreibman had been working as a general oncologist with Sloan Kettering when someone told him that a doctor had a novel treatment that had been working against pancreatic cancer.

"My reaction was, 'That's impossible! Nothing works for pancreatic cancer,'" he said.

But it has. And the results have been startling.

"The average survival of patients with pancreatic cancer is 3-6 months irrespective of what you do," Schreibman said. "Most patients fit into that category because it's usually spread to the liver and is inoperable…but the median rate of survival with this regimen in our treatment of metastatic cancer is 14.7 months."

Schreibman has been collaborating with Dr. Fine for the better part of a decade, testing Fine's research. "We–Dr. Fine and I–feel that we really can offer a treatment that is effective, that improves survival and increase the quality of life for these patients."

He also stressed that research funding is critically needed.

"I just hope that programs like this will increase funding. It's only through research in the laboratory that we will find new agents and new combinations. Our goal is to keep people like Joe alive long enough to benefit from Dr. Fine's new research."

The Future of Funding

While the advancement of the cancer for many reaches Stage 4, the research level is still at Stage 1. Given the prevalence of the cancer and the high and quick mortality rate, Grasso said procuring funding is still unbelievably challenging. Given the statistics, that may surprise you. Why then? Well, it's a dark numbers game.

"Pancreatic cancer patients just aren't living long enough to advocate," Grasso said.

He continued: "So few people survive. Unlike breast cancer or AIDS where there are thousands of people who can march in the street, advocate, blog, and legislate in some cases, we don't have as large or as loud a voice. That's why it's so vital that more funding for research be allotted."

Undeterred, Grasso and others, notably the Pancreatic Cancer Action Network (PanCan), an organization Grasso works closely with, are helping advocate for the disease, promoting awareness, new and innovative treatment procedures, and the need for legislative action. And it may finally be getting somewhere.

The Pancreatic Cancer Research and Education Act (H.R. 3320, sponsored by Rhode Island Democrat Sheldon Whitehouse) in the House of Representatives, if enacted, would for the first time ever specifically allocate research dollars to pancreatic cancer.

The bill has been introduced to committee, but is still in the early stages of the legislative process. Grasso and PanCan are urging that people lobby to their Congressmen to support the bill and have it quickly signed into legislation. (Scott Garrett, who represents the New Jersey's 5th district, previously co-sponsored a similar previous bill, but has yet to co-sponsor this incarnation.)

Possible Links in Research to Other Cancers

Although no one is sure how far along Fine is in his research with regard to a cure, Schreibman said that the study of pancreatic cancer "is an exciting one" because the cancerous cells are not only aggressive, but there may be genetic links to other cancers.

"The genetic aspect is interesting," Schreibman said.

"There's an association between breast, ovarian, and pancreatic cancer. It's not uncommon to see patients who have such a strong family history; in those patients we're looking for a gene–the 'Brach' gene, as it's called–seen in breast and ovarian cancer."

"It's an exciting aspect of it because if we can find those patients who have the gene that caused the cancer, the same in breast and ovarian cancer, Dr. Fine has devised a regiment for those patients."

According to Schreibman, the regiment has an 80% response rate, though it's far too early for them to know what the survival rate is.

"The more people you have looking over the greater amount of time, the greater you're like to find the ultimate combination to stop the disease in its tracks."

But without funding, the likelihood continued progress is found grows slimmer.

"We're at where breast cancer was at in the 1930's," Grasso said. People once thought that cancer was a death sentence, that there was simply nothing that could be done. But with research, that idea has changed and there are now early detection procedures in place.

"I have a feeling that I have another year," he said.

"All of us who have the disease are always hoping for more...I'm a statistic of one, as they say. The statistics you see don't apply to every individual. I don't know how much time I have."

For now, Grasso plans on spending as much time as he can advocating and spending time with his family, particularly his five grandchildren.

"I am so energized by my interaction with them," he said.

"I'm sure that helps. That alone doesn't do it but I think the fact that I'm so engaged in life; that I've got good doctors who's advice I'm following; and just statistical luck."

With more funding and awareness, Grasso's hoping others don't have to even be a statistic of one.