Steve Jobs: Many with his type of pancreatic cancer live for years

By Deborah Kotz, Globe Staff

When Apple founder Steve Jobs was diagnosed with pancreatic cancer in 2004, the iPhone was still three years away from being introduced and the iPad may have been just a glimmer of an idea in his imagination. Jobs, who died yesterday due to complications from the cancer, made enormous technological contributions in the seven years after he was diagnosed-- reluctantly stepping away from his company just six weeks ago.

Only 4 percent of the 44,000 patients diagnosed every year with pancreatic cancer survive for five years after their diagnosis, but Jobs had a rarer form of the cancer -- occurring in the endocrine glands that produce insulin -- which tends to be slower growing and less aggressive.

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The odds of getting a neuroendocrine pancreatic tumor, the kind Jobs had, are only 1 in 100,000. “It’s really a completely different kind of cancer,” said Dr. Matt Kulke, who directs the neuroendocrine tumor program at Dana Farber Cancer Institute. “Some people can live perfectly well with widespread disease for many years.”

That’s been the case with Kelly Li, a Needham mother of two who 14 years ago was diagnosed with the rare tumor that had metastasized to her liver. “I was 30 years old with a four-month-old, and I didn’t want to die,” Li told me.

Her husband, then a resident at Beth Israel Deaconess Medical Center, made sure she got state-of-the-art care, which at that time included very few drugs in the arsenal. “Earlier this year, two new drugs were approved for the treatment of this type of pancreatic cancer, and that was terribly exciting,” said Kelly’s husband Dr. Joseph Li, who’s director of Beth Israel’s hospital medicine program.

Kelly, who’s been on some form of chemotherapy since she was diagnosed, is currently taking one of the newly approved drugs, everolimus (Afinitor) as well as the cancer drug Avastin. She had a partial hip replacement four years ago for a bone metastasis and still has a spot on her liver.

But she’s also found ways of dealing with the disease that she prefers to view as a chronic condition rather than a death sentence. After her initial surgery to remove the pancreatic tumor, renown Harvard stress researcher Dr. Herbert Benson taught her how to relax her body through slow breathing techniques and meditation.

“I then enrolled in the Mind-Body Institute course for cancer patients to learn how to shut down my worries,” Kelly said. “The toughest thing for me with this diagnosis was the mental part. I didn’t want the disease to completely control what our family looks like.”

No question, though, cancer is a fundamental part of the family’s life. The Li’s two daughters, ages 7 and 14, have never known a mother who hasn’t had to give herself daily shots or go to Dana Farber for treatments. (Kulke is Kelly’s physician.)

Kelly’s husband and older daughter recently participated in the Boston Marathon 26.2 mile Jimmy Fund walk raising $12,000 for research on neuroendocrine tumors.

Kelly also participates in a weekly prayer group at her local church to get emotional support. “Several of us in the group are living with cancer, and whoever wants to be prayed for that week can come to the middle of the circle, while our pastor says her own prayer for that person,” Kelly said. “It’s been such a blessing to me.”

Whether prayer, dietary changes, or other complementary therapies help extend the lives of pancreatic cancer patients remain “areas of active research,” Kulke said.

Jobs purportedly tried radical diets, had a liver transplant, and traveled to Switzerland for experimental radiation treatments -- all in the desperate attempt to extend his own life as long as possible. And Kulke said it’s impossible to know whether these things made any difference.

Joseph Li said the answers lie in more funding for research organizations devoted to this rare cancer like The Caring for Carcinoid Foundation. “Jobs, he’s an example of a person who had a lot of means,” he said, “but at the end of day, he died of this disease.”

In the video above, Jobs talks about death and how he was told he had only three to six months to live after he was initially diagnosed with pancreatic cancer -- a diagnosis that was amended after a biopsy revealed the rarer form.

“Every day for the past 33 years, I’ve looked in the mirror and asked myself, if today were the last day of my life would I want to do what I am about to do today, and whenever the answer is no-- too many days in a row -- I know I need to change something,” Jobs said during the 2005 commencement speech at Stanford University. “Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life.”

Deborah Kotz can be reached at dkotz@globe.com. Follow her on Twitter @debkotz2.