Dr. Stephen Bigelsen: An 8-Year Survivor’s Insights on Pancreatic Cancer Care & Treatment

Contributing Writer
Julia Brabant
December, 2024

Diagnosed: July 2016
Current Status: Currently cancer free

In 2016, Dr. Stephen Bigelsen faced a grim prognosis: Stage 4 pancreatic cancer, a diagnosis that leaves many with little hope. A physician himself, Stephen confronted the challenge head-on, recognizing that survival often requires relying on more than conventional medical care alone. In addition to traditional medical treatments, Dr. Bigelsen tried a series of science- and research-backed experimental options, and now, eight years later, he serves as living proof of the power of combining traditional medical care with innovative and evidence-based experimental therapies.

Stephen’s experience with pancreatic cancer began in the summer of 2016, when he developed mild symptoms that, as a physician, he knew better than to ignore. Dark urine and an ongoing stomachache worried Stephen, and he also had elevated CA-19-9 levels (his were 11,000 units per milliliter, while 0 – 37 units per milliliter is typical), which can indicate the presence of tumors in some people.

It turned out Stephen had Stage 4 metastatic pancreatic cancer, meaning the cancer had spread beyond the pancreas to other parts of the body. While Stephen’s existing medical knowledge had him assuming he’d likely die within six months, his wife, Nancy, refused to accept that. Instead, she got down to business, researching top pancreatic cancer programs around the country and getting Stephen in front of physicians at three major cancer centers.

“She really saved my life,” said Stephen, of Nancy’s efforts. “She did all the work and got on the phone, calling everyone she knew.”

Within a few weeks of his diagnosis, Stephen had secured opinions from all three institutions, all of which agreed he had few, if any options.  As a result, and in consultation with his care team, Stephen decided his only real opportunity was to try experimental treatments.

He took an experimental test to help determine what type of chemotherapy drugs might be most effective given his specific cancer profile. There were also two experimental prescription medications currently in clinical trials at the time, and Stephen was able to access and take them without actually joining the trials.

The first experimental drug was originally used to treat malaria, while the second, initially used by kidney dialysis patients, was essentially a modified form of Vitamin D.

Both proved remarkably effective, and together, they worked to suppress his cancer, keeping Stehpen cancer-free for almost a decade. Yet, by 2023, Stephen’s CA-19-9 levels were rising again. While elevated CA 19-9 levels don’t always indicate cancer, Stephen knew from his first battle with the disease that, in his case, they were a reliable warning sign.

A CAT scan confirmed Stephen’s suspicions, leading doctors to diagnose him with a Stage 1 recurrence of cancer on the tail of his pancreas. This time around, he caught the cancer early enough for it to be treatable with surgery, so he had a distal pancreatectomy in 2023. The seven-hour procedure was a difficult one, and the cancer had destroyed some of Stephen’s veins, so it required the help of vascular surgeons, too.

The operation was a success, and Stephen once again found himself cancer-free in the aftermath. Since then, he has remained cancer-free and now takes an experimental cancer vaccine designed to reduce the likelihood of another recurrence. This cutting-edge treatment serves two purposes: first, it offers hope for prolonging his remission, and second, it helps advance scientific understanding of pancreatic cancer prevention.

Initially, Stephen was able to access the cancer vaccine through the Food & Drug Administration’s “Compassionate Use” program, which gives some patients with serious or life-threatening diseases a chance to take experimental medications not yet approved by the FDA. However, the FDA then made the vaccine part of a “basket” or “bucket” clinical trial, meaning the trial screened patients to determine their eligibility.

While Stephen no longer qualified for the vaccine, he decided to finance it himself and continues to take it to this day. He also takes several “repurposed” drugs, meaning researchers initially developed them to treat other conditions, to boost his chances of avoiding a recurrence. These include a blood pressure medication and a natural supplement sometimes used to treat skin conditions and niacin deficiencies.

Making an Argument for Experimental Medicine, Treatment

Stephen’s professional background, coupled with his experience as an eight-year pancreatic cancer survivor, has given him a unique and knowledgeable perspective on the importance of innovative treatments – and the challenges many people with cancer face in securing them. He emphasizes that patients should only consider experimental treatments backed by thorough scientific research, as unproven therapies can waste time and resources without offering any real benefit to patients.

“Everything I do is supported by medical research and is in clinical trials for cancer,” he said. “Follow the science, not the hype!”

Stephen also encourages everyone facing a pancreatic cancer diagnosis to consider clinical trials – including those offered by institutions other than the ones where they’re currently receiving care.

“I believe everyone with pancreatic cancer should be in a clinical trial,” he said. “There are some really good treatments being investigated. While we don’t know for sure if they’ll work, preliminary evidence looks good.”

For those who are unable to qualify for clinical trials (this is often true among those who’ve already started chemotherapy), Stephen recommends trying to get trial medications outside of the trial, whether through the FDA’s Compassionate Use program or alternative means.

“They wouldn’t perform these trials unless they thought the odds of success were worth the effort,” he said. “Treatments in clinical trials are always a better option than treatments that are not in trials.”

However, Stephen cautions against trying experimental treatments in lieu of traditional medical treatment.

“If you’re doing something additional, make sure it’s in addition to what your experts are advising – not instead of,” Stephen said.

Expanding Advocacy Efforts

While Stephen advocates for trying experimental treatments in addition to those recommended by medical professionals, he also has other advice for patients, many of whom contact him from around the globe after finding his name and story online.

While Stephen recognizes that every patient’s situation is different, he does share some of the same sentiments with many of the people with whom he speaks. For example, he urges people facing pancreatic cancer to see not just general oncologists, but oncologists who specialize in pancreatic cancer.

In addition to speaking with people with pancreatic cancer one-on-one, Stephen also makes public appearances every couple of years, sharing his own success story with the disease.

“A big part of what I do is just getting the word out there that there is hope,” he said. “Take it from somebody who initially had no hope; I certainly didn’t start off with any eight years ago.”

Stephen also partners with several cancer foundations and researchers, helping them secure grants to fund research and help repurpose existing drugs for use among pancreatic cancer patients.

“When you use old drugs for a new purpose, there’s no profit to be made,” he said. “For research with no profit incentive to move forward, it has to be supported by donations and cancer foundations.”

Finally, Stephen urges people fighting cancer to make an effort to reduce their stress levels, something he has prioritized since his own diagnosis in 2016.

“Little things don’t bother me like they used to; I’m just thankful for everything I have. I’ve learned to enjoy life more, and I have a big focus on giving back now and helping other people as best I can,” he said. “I feel like my life was saved for a reason – I got a second opportunity at life for a reason, and I don’t want to waste it.”

Stephen continues to monitor his condition closely, having regular scans and bloodwork to catch any potential issues early and make the most of his second chance at life.

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