Participant story: Research restores hope

A journey back to health inspires the future for one Advocate Aurora Health clinical trial participant

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Patient hugged by physician.

“People tend to ask one another, ‘What has been your longest relationship?’ When I share that it’s with my oncologist, it often surprises them,” said Grishma Shah, research participant. “I consider it a blessing.”

Shah was just 16 years old when a desmoid tumor was discovered and she first met Pamela Kaiser, MD, oncologist and hematologist at Advocate Aurora Health.

While Shah received treatments for the tumor, including chemotherapy, radiation, surgery and postoperative rehabilitation therapies, school was put on hold. Despite missing out on her junior year of high school, determination and doubling up on courses brought Shah back on track and she graduated with her class.

During Shah’s freshman year of college, the tumor returned, forcing yet another break from school to undergo an amputation. After some time, Shah was able to resume her studies once she regained her health.

But at the age of 20, Shah suffered a third occurrence. This time, surgery was no longer an option and she began intravenous chemotherapy treatment for the second time.

An opportunity to participate in a clinical trial evaluating an investigational cancer drug became available six years following Shah’s initial diagnosis. “My family and I discussed what the possibilities might be and there was a feeling of hope,” Shah said. “We were very hopeful, and we decided to participate.”

Participation in the trial continued for 10 years with study visits every two to three months. Shah continued taking the oral chemotherapy drug for a total of 16 years. Dr. Kaiser, Shah’s oncologist, also served as an investigator of the trial for Advocate Lutheran General Hospital.

“Research offers patients novel therapies that may not be available as part of standard health care, which is especially important in rare diseases,” Dr. Kaiser said. “Clinical trials help to discover new treatments that increase patient survival and quality of life. They allow patients more options to treat their disease.”

Today, Shah adds cancer survivor to the list of identities that help describe her personal journey, along with artist and doctoral student.

“I constantly think about how the way we live our lives impacts our future generation and how researchers have impacted my life,” Shah said. “Now I want to do something to push that envelope forward and be a better human being because someone was a better human being for me.”

To learn more about Advocate Aurora’s research, visit aah.org/research

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About Advocate Aurora Research Institute

Advocate Aurora Research Institute is a not-for-profit, limited liability company of Advocate Aurora Health. Advocate Aurora has emerged as a national destination for patient-centered bench, translational and clinical research, and the Research Institute unifies the innovative research efforts throughout the health system. Advocate Aurora researchers focus on rapidly translating new discoveries from the scientist’s bench to the patient’s bedside and into the community we serve to improve options and outcomes that change not only the lives of individuals, but transform the health of populations.