Sara’s Story

Childhood

Sara was born in Madison, Wisconsin, on January 7, 1967. She had a full and joyous childhood with her beloved parents, Karen and Dr. Harry Roth, who instilled a profound sense of family in Sara and her younger sister, Julie. Only 22 months apart, Sara and Julie grew up not only as sisters, but as best friends with many cherished and shared friendships. Sara greatly enjoyed school, art, and playing tennis.

Education And Career

Sara was a voracious reader, with a nearly photographic memory. She went on to study political science at the University of Wisconsin–Madison and later received her law degree from DePaul University in Chicago.

After law school, Sara became a distinguished State’s Attorney in Chicago, a very fine lawyer who approached every case with a sense of justice, fairness, and understanding. She considered becoming a judge, but Sara knew her life’s work was to be with her family.

Family

In 1992, Sara attended a friend’s wedding where she ran into a college friend, Jeff Schottenstein. The following week, Jeff invited Sara to the Third Coast coffee shop in Chicago for their first date, where she graciously crushed Jeff at Trivial Pursuit. Sara’s family said that Jeff made her sparkle.

Jeff was taken with Sara’s warmth, kindness, intelligence, authenticity, delightful nature, and beauty. Sara was modest, easygoing, and understated with a world-class sense of humor—funny, smart, dry, playful, and teasing. Jeff admired how Sara paid close attention to the good in people and treated everyone the same, with respect and attention.

Sara and Jeff were married in Chicago in 1999, and settled in San Francisco. In 2002, their son Adam was born, followed by their daughter Abby in 2004, and their son Danny in 2008. Sara was made to be a mother. It was her passion and her calling, and she shone in the role.

"As a mother, Sara was patient, kind and fun. She was madly in love with our children and filled our home with warmth and laughter."

Diagnosis

SARA AND JEFF HOPED THAT THE DETAILS OF SARA’S CANCER JOURNEY COULD BENEFIT OTHER PATIENTS AND THEIR FAMILIES.

In early 2014, routine blood work discovered that Sara was iron deficient, a common finding in women her age. Sara had always taken excellent care of herself and had no other symptoms. It was an unimaginable shock when, on October 17, 2014, an endoscopy procedure identified gastric cancer. Sara was only 47 years old.

Sara and Jeff prayed that surgery could be curative. They were devastated to soon learn that the cancer had already advanced outside of the stomach, and that surgery was not an option. The five-year survival rate for advanced gastric cancer is only 5 percent.

Sara and Jeff committed with all their hearts to finding some way for Sara to achieve long-term survival despite the grave statistics. They were shocked to learn how few approved treatments existed for gastric cancer and how poorly gastric cancer research was supported relative to other cancer types. They resolved to identify and help develop new, hopeful treatment options for Sara and other gastric cancer patients.

Sara’s parents, Harry and Karen, moved from Madison to San Francisco to support Sara and help with their grandchildren while Sara and Jeff immersed themselves in treatment and research. Sara’s sister, Julie, traveled back and forth from her home in Chicago to be with her beloved sister.

Treatment

Sara received her first treatment of traditional chemotherapy, including a platinum-based drug and fluorouracil, at Stanford University on October 30, 2014. It was an emotional and surreal experience. Soon, a monoclonal antibody, Cyramza, was added to her treatment. In March of 2015, her disease remained stable, but Sara’s body required a break from the toll of chemotherapy.

Sara pivoted to the immunotherapy drug Keytruda, approved only for melanoma at that time, while continuing to receive Cyramza. An initial exciting response seen in her lab markers reversed quickly, and in June Sara’s scan showed disease progression for the first time.

A new platinum-based chemo drug and fluorouracil (FOLFOX) were started with continued Keytruda and Cyramza treatments. That fall, Sara’s scans showed that the cancer was responding well to treatment, but a break from chemo was again necessary.

Sara turned to the more aggressive experimental immunotherapy combination, Ipilimumab and Nivolumab. The hopeful treatment that has helped many patients caused difficult side effects and delivered no benefit for Sara.

By the beginning of 2016, Sara’s cancer was advancing again. She began yet another chemo regimen consisting of irinotecan and fluorouracil (FOLFIRI) and resumed Keytruda. The melanoma drug Trametinib was later added based on a new mutation identified in Sara’s tumor, with no benefit.

In the spring of 2016, with the disease continuing its advance, Sara and Jeff planned a trip to Germany to receive a new, hopeful investigational medication for gastric cancer referred to as IMAB365 (now known as zolbetuximab). Unfortunately, due to Sara’s continued loss of strength, the trip was cancelled. The only viable option to receive this medicine was to find a way to import the drug to the United States for the first time.

The German company’s kind founders worked tirelessly with the devoted, compassionate medical team at Marin Cancer Care and a selfless, dedicated FDA consultant who processed an emergency Investigational New Drug (IND) application for Sara. Sara and Jeff were elated to learn the drug had made it safely to California. The passion of this extraordinary group to help Sara remains powerfully moving to Sara’s family.

On May 4, 2016, Sara received an infusion of IMAB365 delivered in combination with chemotherapy. Sadly, Sara experienced an adverse reaction to the hopeful drug during treatment and required emergency hospitalization for a week. After being discharged from the hospital, Sara made the courageous decision that it was time for treatment to come to an end.

Sara had carefully weighed the risks and benefits of each of her past 33 rounds of treatment, 18 of which were considered experimental, over the prior 19 months. Along the way, she and Jeff closely researched and considered other options including a surgery known as HIPEC (Hyperthermic Intraperitoneal Chemotherapy) that involves applying heated chemotherapy in the abdomen during surgery, as well as a promising immunotherapy treatment known as TILS (tumor infiltrating lymphocytes) at the National Cancer Institute.

The Schottensteins also co-sponsored research at Duke University to validate a glioblastoma treatment utilizing the polio virus for gastric patients. They pursued the development of a personalized vaccine with a biotechnology company. And they pushed to open a clinical trial at Stanford for gastric cancer patients combining Keytruda with an IDO1 inhibitor, another immunotherapy drug.

Jeff and Sara Schottenstein with Dr. Bass
Sara, Jeff and Adam Bass, MD of the Dana-Farber Cancer Institute, Boston.

Sara had been cared for by the world-class doctors and nurses at Stanford, the University of California, San Francisco, Dana-Farber Cancer Institute, Smith Integrative Oncology, and Marin Cancer Care. She and Jeff had consulted with Duke, Johns Hopkins University, MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center, University of Pittsburgh, University of Southern California, and University of California, Los Angeles, and worked closely with private consultants Sagely Health, the Weinberg Group, and PinnacleCare Health Advisors.

There was a sense of comfort in knowing that nothing had been missed, and a profound sense of gratitude for the rare kindness Sara received at every step of the way from “Team Sara” consisting of doctors, scientists, nurses, consultants, biotechnologists, philanthropists, family, and friends.

Finding Peace

Sara spent a beautiful, loving summer in 2016 at home in Tiburon with Jeff, their wonderful children, Harry, Karen, Julie and their family dog, Cheryl. Aunts, uncles, cousins and friends visited. Sara enjoyed good meals, movies and backgammon. There was no suffering.

On August 5, 2016, Sara died the way she had lived—with wisdom, gratitude, and peacefulness—surrounded by the people who loved her with all of their hearts. She was filled with the hope that the research projects she and Jeff had initiated might benefit other gastric cancer patients.

The Sara Schottenstein Foundation is driven by Sara’s inspirational life and spirit, and her dream of finding a cure for gastric cancer.

Sara's Story: A Legacy of Hope
for Gastric Cancer Patients