Adrienne Skinner: Living Life to the Fullest Thanks to Research

Age: 60Larchmont, New York

I was diagnosed with metastatic ampullary cancer in February 2013. After 13 months of various chemotherapies, none of which kept the cancer at bay for more than a few months, my oncologist told me that my best hope for a good outcome was a clinical trial testing an immunotherapy called pembrolizumab (Keytruda). After 2 1/2 months, the cancer was gone. I’m back to living my life as a busy working single mother of four daughters. I play tennis, I do yoga, and I’m enjoying planning my eldest daughter’s wedding.

My journey with cancer really began 12 years ago, when one of my sisters, who was 46 at the time, was found to have Lynch syndrome. Because Lynch syndrome is an inherited condition many of our family members underwent genetic testing. It turns out that my mother passed on the genetic mutation that causes Lynch syndrome to me and my sister and that I have passed it on to three of my four daughters.

Lynch syndrome dramatically increases the risk of many types of cancer. So, once I knew I had the condition, I was proactive about my health. I had a full hysterectomy to prevent gynecological cancers, I had a colonoscopy annually to check for polyps and colorectal cancer, and I had an endoscopy every other year to check for signs of other digestive tract cancers.

In my mind, it was a matter of when, not if, I would develop cancer. So, when routine blood tests showed my liver enzymes were off the charts and scans revealed a tumor blocking the bile duct and the pancreatic duct, the pragmatist in me came to the fore.

I set about finding the best medical care possible. After interviewing three surgeons, I chose to have the procedure at Memorial Sloan Kettering Cancer Center in New York. Unfortunately, it was not possible for my surgeon to complete the planned procedure because during the operation he saw that the cancer had spread to my liver. I had stage IV disease.

At this point, chemotherapy was my only option. The first chemotherapy I received was brutal. It made me so sick that I couldn’t even sip water and after two weeks my oncologist, Dr. Eileen O’Reilly, had to switch me to a different chemo regimen. After about five months of this, the cancer started growing again and we had to switch to another chemotherapy.

Less than six months later, Dr. O’Reilly told me we needed to look for alternative treatments because the chemotherapy had stopped working again and the chances that more chemotherapy would solve the problem were slim.

During the year I had been under Dr. O’Reilly’s care, genetic testing of my cancer had shown that it was MSI high, so she recommended that I try and enroll in a clinical trial testing an immunotherapy in people like me who had cancer that was MSI high. The trial was being conducted at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore.

At first it seemed that I might not be eligible for the trial because my liver enzyme levels were fluctuating wildly. However, they agreed to enroll me and I received my first dose of pembrolizumab on April 15, 2014. An endoscopy at the end of July 2014 showed that the main tumor was gone. In fact, the doctor who performed the endoscopy said: “If somebody hadn’t told me you had ampullary cancer I wouldn’t have known because there is nothing there.”

It was a miracle.

I continued to receive pembrolizumab through the trial for 2 years. Given that I have Lynch syndrome it seemed like a good insurance policy for me. It’s been more than 15 months since my last treatment and I’m still cancer free.

I still have regular follow-up scans for the ampullary cancer and I still continue to have annual colonoscopies and endoscopies because of the Lynch syndrome. My philosophy is to not waste time worrying about these things; life is too precious. Ampullary cancer was supposed to be a death sentence, but I’m alive thanks to the treatment I received through the clinical trial. I’m forever grateful to everyone who made this possible – the doctors, researchers, pharmaceutical companies, and people who funded the trial and the underlying research.

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