Linda Boyed has always been extremely active – her career as a neuro occupational therapist was physically demanding and she exercised faithfully. So in early 2017, when she couldn’t shake a feeling of extreme fatigue, she just chalked it up to getting older or perhaps being a little worn down. She had just returned from hiking, snorkeling and generally adventuring her way across Hawaii with her husband and son.
Then one day, her skin suddenly turned yellow. Testing led to a diagnosis of intrahepatic cholangiocarcinoma, a type of cancer that forms in the bile ducts, slender tubes that connect the gallbladder, liver and small intestine. Even more shocking – her oncologist told her he could “make her comfortable,” suggesting hospice care and no treatment. She was 52 years old.
Linda and her husband agreed: They weren’t going to accept that path without a second opinion, which she received at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James), central Ohio’s only National Cancer Institute-designated comprehensive cancer center.
Because her bile duct cancer had spread to other parts of her body, surgery was not an option. The standard chemotherapy treatments available offered her limited effectiveness and had stopped working on her cancer. Clinical trials seemed like her best hope.
“I wanted an oncologist who would be aggressive about giving me my best shot at cancer control. I didn’t want to be made ‘comfortable’ – that was never my mindset. I found that in Dr. Sameek Roychowdhury at the OSUCCC – James,” recalls Linda.
Dr. Roychowdhury suggested genomic testing to look for molecular targets in Linda’s cancer that would make her a candidate for targeted therapy, drug therapies that target specific cancer-causing mutations. This type of care is known as precision cancer medicine, which allows oncologists to match patients with therapies based on a specific, targetable genetic mutation that exists in their tumors versus treating the disease with systemic chemotherapy regimens that are more likely to produce side effects that would impact her quality of life.
Through this testing, Linda learned she had a FGFR (fibroblast growth factor receptors) fusion mutation, which is difficult to detect with the current genomic tests available. Dr. Roychowdhury’s lab team specializes in “fusions” and developed a subspecialized new genomic test – called OSU-SpARKFuse – that has improved detection of these unique mutations. The research was supported by funding from the Pelotonia Idea Grant Program, which has provided support to more than 300 research projects at the OSUCCC – James with funds raised through the annual cycling event.
Dr. Roychowdhury’s team has five different clinical trials for FGFR and has helped the OSUCCC – James emerge with nationally recognized expertise for FGFR therapies, diagnostics, and biology. Lynda is now receiving one of those drugs (infigratinib) every two weeks. Her cancer is not “cured,” but it has stopped advancing.
“Cancer dramatically changed my life, but I have an improved quality of life now because of this targeted therapy,” says Linda. “I have a trusting spirit and I try to look at the positive. This therapy has allowed me to spend quality time with the people I love. I know I am not in control of everything, but I am hopeful for the future in the advancements being made through research.”
Linda says she spends most of her free time these days with friends and family. She enjoys listening to live music, reading, swimming and a good shopping or Netflix binge when the mood strikes her.
Boyed said she now tries to think about her cancer as a chronic disease – something that can be controlled but perhaps never cured.
“I choose to be joyful. If I can help someone else by participating in a clinical trial – even if it doesn’t cure my cancer – I want to do what I can. I believe we were put on this earth to help each other,” she said.
This, she says, is why she also consented to participate in a Body Donation for Cancer Research study led by Dr. Roychowdhury’s team to investigate cancer treatment resistance after death.
In May 2019, Linda watched her son graduate from Olentangy High School and looks forward to seeing him excel in the next chapter of his life as a student at The Ohio State University.