Like just about any grandmother, the most important thing in Sue Alvarez’s life was her grandchildren. A mother of three, she was a grandmother to five – her “babies,” as she called them, were the loves of her life.
What might surprise you, though, is that at 60 years old, the second most important thing to Sue was her phone. More specifically, the calendar on her phone.
“I have to keep that calendar updated all of the time. There are people I haven’t seen in a while, so I have to check in and see if it’s time for us to meet for lunch,” she said.
Connecting with friends for a meal, having her “babies” over for a sleepover at grandma’s house, or even a trip to Las Vegas – it was all in that calendar. And for Sue, who was in a six-year fight with Stage 4 ovarian cancer, keeping up with those plans was everything because stage 4 cancer isn’t usually curable.
“It’s about being able to enjoy my kids and my grandkids and my friends. If I sat at home and did nothing, that’s not a good quality of life. My quality of life is being able to have a life,” she said.
The first ovarian cancer diagnosis
Sue was feeling abdominal pain in March 2012, and she thought it might have something to do with having her gallbladder removed a few months before that. To be safe, she made an appointment with her gynecologist.
“I wasn’t sure what was going on, but I just knew that something wasn’t right,” Sue said.
The doctor said she had a cyst on her one of her ovaries. And because of that, they wanted to see her for a follow-up in three weeks.
Sue was bloated and in a lot of discomfort, so she didn’t wait three weeks – the cyst had burst. It was at this point that Sue was referred to Dr. Deanna Teoh, a gynecologic oncologist, who works at Regions Hospital.
“I heard the word oncologist, and I thought, ‘Well, that can’t be good,’” she recalled.
Sue had emergency surgery and started chemotherapy for ovarian cancer at Regions in April 2012. In August, she was cancer-free.
“I was in remission; there was no evidence of disease,” she said.
A cancer journey that spans over six years
Over the next six years, the even-numbered years turned out to be the bad ones. Cancer returned in February 2014, so Sue started chemotherapy and again went into remission. Then in February 2016, the cancer came back for a third time.
“Dr. Teoh concluded that this time, the chemo I was on was making me sicker and it wasn’t working,” Sue recalled. “She said, ‘How about a trial?’ and I said, ‘I don’t want to go travel all the way to the University of Minnesota.’”
Sue was not aware that Regions had created its own Early Phase Clinical Trial program in late 2015. Nor did she know that the type of trial she would join was not available anywhere in the Midwest other than Regions.
“I’ve got to be at Regions,” Sue said. “I feel comfortable here. And that’s very important.”
Joining an ovarian cancer clinical trial
Sue met with Arek Dudek, MD, in March 2016. Dr. Dudek determined that the right fit for Sue was an immunotherapy trial.
What is immunotherapy for ovarian cancer?
Immunotherapy can be used to treat a variety of cancers. It doesn’t fight tumors or cancer directly. Instead, it engages your own immune system to fight the cancer.
What was Sue’s experience like as part of a clinical trial?
“I had been so sick. It had come to a point where I truly thought, ‘This is it.’ But then I got better,” Sue said.
Within three months, her tumors had shrunk by more than 30%. And over the seven months that she was on the trial, she saw shrinkage of as much as 65%.
“It was absolutely exciting,” says Dr. Dudek. “It’s great to see patients like Sue have their cancer controlled with limited side effects over many, many months so that they can maintain usual activities of a normal life.”
Sue did suffer a few side effects from the trial, including a minor rash. But it didn’t stop her from filling up her calendar. She traveled, enjoyed time with her grandchildren and continued to make plans with her friends – all things she hadn’t been able to do with standard treatment.
“I felt good on the trial. At first, I was super worried because the chemo I had been on had kicked my butt. I remembered having those bad side effects,” Sue said. “One of my biggest concerns was that I didn’t want to feel bad. I’ve got to have a quality of life. I’ve just got to.”
Paying it forward
Stage 4 cancer is invasive and aggressive, and in the fall of 2017, one of Sue’s lymph nodes was no longer responding to the trial. So, Dr. Dudek and his team found a new study in November 2017, and she stayed in the study until May 2018 when her cancer progressed. She died on May 23, 2018.
Sue appreciated Dr. Dudek and all of the time that she was able to add to her calendar thanks to the care she received and the trials she was a part of at Regions Hospital. Dr. Dudek absolutely believes Sue’s involvement in the trial will help others.
“It’s a balance of not only trying to help the patient, but also moving the science forward,” he says. “Because of the work that is being done, because of people like Sue, I believe there will be even better therapies in the future.”
Early Phase Clinical Trials (EPCTs) are experimental tests of medications or other therapies that have the potential to be beneficial for patients whose disease has worsened despite standard therapies. EPCTs are experimental and allow us to test new therapies at a stage of development when we don't know whether they are beneficial or not, and haven't characterized their toxicities fully. Not all therapies tested in EPCTs turn out to be beneficial and some may ultimately be harmful. We deeply admire and are so thankful for generations of patients, like Sue Alvarez, who agree to participate in EPCTs and advance our knowledge of what works to improve longevity and quality of life for those who come after them.