Mary’s Clinical Trial Decision

By D’Ann George, PhD, Medical Writer

Mary Ferrara Naimo remembers the day when her oncologist at Memorial Sloan Kettering Cancer Center, Dr. Chung-Han Lee, talked to her and her husband, Al, about a clinical trial for a novel therapy in kidney cancer. After their discussion, Dr. Lee left the couple alone to decide whether or not Naimo should enroll.

“It was a lot of paperwork to read,” Naimo remembers. “Four or five pages. And at the bottom, the last thing, of course, is that you can die from the treatment.” 

Diagnosed with stage one clear cell renal cell carcinoma (ccRCC) a year earlier, in 2015, Naimo had undergone a nephrectomy to remove her kidney at her regional hospital. After the procedure, the surgeon drew an image of her kidney cancer on a whiteboard, trying to reassure her.  

While it’s not outside the recommended time frame for someone with stage one kidney cancer to have a follow up appointment up to one year post-surgery – the National Comprehensive Cancer Network guidelines give a range of of three months to one year for follow up after surgery for stage one ccRCC – Naimo found the waiting nerve wracking. Friends and neighbors in her hometown of Northvale, New Jersey began telling her stories about their cancers and those of other people. She began to feel that cancer was everywhere.

The wait felt strange for another reason too: Naimo didn’t feel sick and never had. She had discovered the cancer only when an X-ray for an unrelated broken rib revealed a tumor at the edge of one of her kidneys. And she went to the emergency room for the rib only because a nurse at the school where she worked urged her to get it checked out.

Naimo soon pushed her cancer – and her fears – out of her mind to focus on her life. Her son was getting married in Pennsylvania but having a reception in Delaware, and she was active in organizing both events. She continued to teach American and World history at Holy Angels, an all-girls parochial high school. “It was a crazy time in my life,” she said.

When her scheduled follow-up scan came around, Naimo learned that her cancer had unfortunately metastasized. Within two weeks, she began a course of Sutent, this time under the care of Lee. At the time, in 2016, Sutent was the standard therapy for someone with metastatic ccRCC.  

For a year and a half, Sutent kept her disease at bay, but her cancer spread again, which is how she found herself poring over a stack of paperwork that represented a clinical trial for people, like her, who had progressed on the standard therapy for metastatic ccRCC.

For Naimo, the decision to join a trial was easy. “[Dr. Lee] was so positive and I felt so good that there was another treatment available. He told me that there was a good possibility that this could make a difference in my life.” 

The only side effect she experienced was diarrhea, which her team managed successfully with medication and diet. “I couldn’t eat certain foods, you know, acidic foods. Like tomato sauce. Not easy since I’m Italian,” she said.

One of the most trying aspects of participating in the trial was not toxicity but the commute into New York City.

“Getting up early in the morning, driving into New York City, in the dark – it wasn’t so bad in the summertime, but in the winter it was pretty tough because you’d go in the dark and come home in the dark, you know. And the FDR [highway] is not low pressure at 6:00 at night,” she said.

When the trial ended in 2019, Naimo felt as though a significant part of her social life had ended too. She had enjoyed going out to lunch in the city with her husband – sometimes they had dinner as well. And she felt cared for by the clinical research team that managed her trial. Once a nurse had even brought her a cup of tea, just because she looked like she needed one.

Now Naimo gets her scans done 15 minutes from her house and communicates with Dr. Lee through televisits, allowing her to spend more time with her four rescue dogs and a brand new granddaughter, born in December of 2022.