Immunotherapy Clinical Trial Leads to NED Status: Vivian Seiler’s Cancer Story

Vivian Seiler When Vivian Seiler was diagnosed with stage 3C clear cell ovarian cancer in April 2016, she was 52 years old with no prior health issues or family history of cancer.

“I was extremely fatigued, I had bloating and I felt I could barely eat,” Vivian explained. “I literally felt that way for about a month, but it got bad quickly. All my periods were always very regular in my life and I had this heavy period.”

Vivian recalled going to three different doctors over the course of three weeks, until an ER doctor referred her to a gynecologic oncologist. Once she was diagnosed with ovarian cancer, Vivian had debulking surgery—to remove as much of the tumor as possible—and started frontline chemotherapy three weeks later.

Vivian was initially supposed to have six cycles of chemo, but after four cycles she noticed that her abdomen was as distended as it was when she was first diagnosed. “At this point we knew frontline was not working for me. I had to get weekly paracentesis procedures where they would drain 2.5-3 liters of cancerous fluid out of me,” she said. “My husband and I decided to try for a clinical trial to see if something that was experimental would help me as we didn’t feel we had many options. We figured I could always go back on a standard chemo later if the trial didn’t work.”

With the help of her gynecologic oncologist, Vivian found an immunotherapy basket trial, which tests the effect of one drug on a single mutation in a variety of tumor types at the same time.

“The trial included people with clear cell lung cancer, clear cell kidney cancer—they were looking across different cancers for this trial,” said Vivian. “It’s a very good thing for patients to ask their oncologist, to see if there are clinical trials across other cancers.”

Vivian traveled from her home in suburban Philadelphia to Fox Chase Cancer Center to participate in the clinical trial. “I am an advocate for clinical trials—you are monitored so closely,” she said. “I just felt like they were watching me so closely if there was an adverse effect, they would know it and they’d be right on it.”

Within six weeks of receiving the clinical trial drugs, Vivian was able to stop having the paracentesis procedures. Within nine months of receiving the new drugs she was declared to have No Evidence of Disease (NED) and has remained NED for two years.

Vivian did have to discontinue the clinical trial after 11 months after she developed an autoimmune disorder called polymyalgia rheumatica, which is an arthritic condition that affects the entire body. She was on steroids for two years to manage the symptoms of PMR, but now at the age of 55 she no longer takes them.

“I’m grateful that I’m still NED,” Vivian said. “I long to have my old, strong, healthy body back but am trying to accept my new normal which is pain from the arthritis and overall fatigue. I hope to travel as much as possible, hike, bike and kayak when I feel up to it!”

If you’re considering participating in a clinical trial, learn more about the process, objectives and how to find a clinical trial that most closely matches your needs.