Revolutionary Genetic Profiling Paves the Way for Breakthrough Clinical Trials
A Journey Through Stage IV Pancreatic Cancer: One Woman’s Story of Hope and Resilience
In January 2021, at the age of 61, I found myself facing an unexpected and life-altering diagnosis: stage IV pancreatic adenocarcinoma. The fatigue I had attributed to aging suddenly transformed into a relentless pain, prompting a visit to the doctor. An ultrasound revealed a mass on my liver, and further scans confirmed the alarming presence of tumors on my pancreas.
Seeking Better Treatment Options
After receiving my diagnosis, it became clear that the cancer had metastasized, making surgery impossible. The local treatment options were limited to chemotherapy, which felt inadequate for my situation. Residing in rural southeastern Ohio, I recognized the urgent need for a more aggressive approach.
Transitioning to Advanced Care
Determined to explore my options, I turned to The James at The Ohio State University Comprehensive Cancer Center in Columbus. Here, I underwent treatment with gemcitabine and Abraxane. Unfortunately, after over ten months, the results were disappointing; the tumors had only slightly diminished. The side effects were challenging, leading me to consider a clinical trial when Abraxane became unavailable.
Genetic Testing Uncovers Hope
A pivotal moment in my journey came when the doctors at The James conducted genetic profiling on my tumor. The results revealed a rare NRG1 fusion, a genetic mutation that, while associated with cancer growth, is also linked to potential treatments currently being tested. This discovery was both uplifting and daunting.
To further investigate my options, I submitted my case to an independent virtual tumor board through Cancer Commons. Their analysis, which included my genetic test results, suggested a promising clinical trial targeting the NRG1 fusion.
Finding the Right Trial
I soon learned about Dr. Mohammed Najeeb Al Hallak, who was leading a clinical trial for MCLA-128 (also known as zenocutuzumab) at the Barbara Ann Karmanos Cancer Institute in Detroit. Despite the over 300-mile distance from home, Karmanos stood out as the nearest hospital offering the trial, which boasted an impressive 250 active studies.
Committing to the Clinical Trial
In December 2021, I enrolled in Dr. Al Hallak’s trial. My husband, John, and I embarked on bi-weekly trips to Detroit, where I received the experimental drug intravenously. To ease our financial burden, Merus, the company behind zenocutuzumab, generously reimbursed our travel expenses. Thankfully, I experienced no adverse side effects from the treatment.
Recently, zenocutuzumab received Breakthrough Therapy designation from the FDA, a significant step toward its potential approval for patients like me with NRG1+ fusions.
Celebrating Positive Outcomes
By February 2022, my PET scan results were nothing short of miraculous: no visible tumors. Subsequent scans confirmed the absence of any signs of metastatic disease. After completing a year and a half of the trial, I remain optimistic about my future. The success of my treatment has filled me with hope for many more joyful years alongside my husband.
Empowering Others Facing Cancer
I urge anyone diagnosed with pancreatic cancer to pursue genetic profiling of their tumors and actively seek out clinical trials tailored to their unique circumstances. Resources from organizations like Let’s Win and the Pancreatic Cancer Action Network (PanCAN) can be invaluable in navigating available options.
The Road Ahead
For me, participating in clinical trials represented my best chance for survival. If my current trial doesn’t yield lasting results, I will seek out another opportunity. I am grateful to have contributed to research that could lead to a cure for pancreatic cancer.
As I approach the two-and-a-half-year mark since my diagnosis, I feel blessed to be cancer-free and in good health. My heartfelt thanks go to Cancer Commons for their invaluable support and to Dr. Al Hallak and the dedicated team at Karmanos Cancer Institute for their exceptional care and the chance to participate in a groundbreaking trial tailored to my needs.
