Donna Gustafson: Finding Hope With a Personalized Cancer Vaccine After a Pancreatic Cancer Diagnosis

At 65, Donna Gustafson was enjoying the life she and her husband, Ed, had built together over more than five decades of marriage. Surrounded by their three daughters and growing family of grandchildren, Donna split her time between Lavallette, New Jersey, and Delray Beach, Florida.

In December 2019, Donna and Ed traveled to Sydney, Australia, to spend time with their daughter and her family. After a grueling 22-hour flight, Donna felt unusually fatigued but assumed it was simply jet lag. A day or two after arriving, she developed jaundice. Believing she was dehydrated, she went to a local emergency room where she received devastating news.

“They told me that I had pancreatic cancer,” Donna recalled. “I was shocked. Prior to this, I was completely healthy.” When she asked about her odds, the physician told her the survival rate for people with pancreatic cancer was in the single digits. She would later learn that her pancreatic cancer was stage IIB.

Donna and Ed immediately returned to the United States. Donna was still en route home when her daughters sprang into action. “I have three amazing daughters. They are true warriors and they went into battle mode,” Donna said. They researched specialists, explored available treatment options, and secured an appointment with pancreatic cancer expert Dr. Eileen O’Reilly at Memorial Sloan Kettering Cancer Center (MSK) in New York City.

During her consultation, Donna learned that she was eligible for a phase I clinical trial led by MSK evaluating a personalized cancer vaccine called autogene cevumeran. Unlike vaccines designed to prevent disease, this therapeutic vaccine would be created using information from Donna’s tumor to train her immune system to find and kill cancer cells. The decision was easy. “Pancreatic cancer is often a death sentence. I knew that statistically, the odds were against me,” Donna said. “The choice was a no-brainer. They were handing us hope.”

Ten days later, Donna underwent a Whipple procedure, a major surgery commonly used to remove pancreatic tumors. In February 2020, as she began the clinical trial, the COVID-19 pandemic swept through New York City. Donna and her family, who had temporarily relocated to be near MSK, eventually had to continue part of her treatment closer to home at an MSK satellite location in Monmouth County, New Jersey.

Donna was the first patient to receive this vaccine for pancreatic cancer. She received vaccine treatments weekly for 8 weeks before starting 11 rounds of chemotherapy given every other week. She received a final vaccine dose after completing chemotherapy. The vaccine caused very few side effects. “I felt absolutely nothing the first couple of treatments. I was concerned, ‘Is this working?’” she recalled. “But they reassured me that it was.” Chemotherapy proved more difficult, but Donna leaned on support from her husband, daughters, extended family, and care team. “It was difficult,” she said, “But it was doable. We just kept putting one foot in front of the other.”

Donna’s response to the vaccine was extraordinary. It has now been more than 6 years since her treatment. Donna has no evidence of disease, and her body continues to show a strong immune response.

Donna’s life today looks remarkably similar to the one she enjoyed before cancer. She still undergoes follow-up imaging once a year but has no dietary restrictions or physical limitations. Since her treatment, Donna has celebrated her 50th wedding anniversary and welcomed two more grandchildren. She has also traveled to Sicily, hiked Mount Etna, and fulfilled a longtime dream of skydiving. “Once you’re given time, you realize how precious it is,” she said. “For me and my family, this has been nothing short of a miracle.”

Donna hopes her experience will help others appreciate the lifesaving potential of therapeutic cancer vaccines. “I don’t believe I’d be here today if it wasn’t for this vaccine,” she said. She also encourages eligible patients to consider participating in clinical trials. “If anyone is lucky enough to qualify for one of these trials, I would strongly encourage them to,” she said. “You have nothing to lose and hope to gain.”

Donna’s experience shows the transformative potential of cancer research. It also underscores the need for sustained investment to accelerate progress against pancreatic cancer, a disease that has historically had very few effective treatment options. “When I looked at the statistics 7 years ago, there really wasn’t a good story out there,” she said. “Now, there is such hope. We need the funding. We need the research to bring this to the public and make it available to everyone.”