Eighteen years ago, Lori, a real estate agent in Vermont, was diagnosed with medullary thyroid cancer and was treated with a thyroidectomy to remove her thyroid. Fifteen years later—one week before her planned wedding—she got a nerve-wracking call from her primary care doctor. She had been monitoring Lori over the years for any indication of a recurrence, and now she was asking her to come back in for more tests after labs showed an alarming spike in her levels of calcitonin, a hormone made by the thyroid. After a retest and imaging to confirm, it was revealed that her cancer had returned and spread throughout her body, with spots in her breast, lungs, bones, and brain. Her disease was classified as stage IV, aggressive and non-curable.
“As we sat there listening to what my PCP had to share, my first thought was, ‘My poor fiancé has lost his first wife to pancreatic cancer… I don’t want to drag him through that ordeal again,’” Lori shares. “One of the first conversations I had with him after leaving the doctor’s office that day was whether we go forward with the wedding; do we go forward with a life together? To which he emphatically answered, ‘We go on, we are in this together. I am not going anywhere.’”
Lori quickly began treatment with chemotherapy and radiation to try to reduce the cancer spreading throughout her body. For several months, she maintained an exhausting treatment regimen, which took a toll on her both mentally and physically. A petite person her whole life, Lori was then down to a mere 97 pounds.
Lori’s team in Vermont decided to consult clinicians at Dana-Farber Cancer Institute to see what clinical trials may be beneficial for treating her cancer, while improving her quality of life. In her first trial, the cancer unfortunately bypassed the drug within a short period of time. It was also then revealed that the disease had spread to her liver. Another trial looked promising, offering a possible targeted therapy for the RET gene she carried. That one was near full at the time, and the company that was directing it wasn’t taking on patients that were as far advanced with the disease as Lori. But Dana-Farber’s Patricia McHugh, BSN, RN, OCN, MPA, a research nurse, put in a call to the pharmaceutical company and made the case to get Lori into the trial sharing insight into her health status despite her diagnosis: She was still highly functional, working full time, and fully cognitive. The drug company agreed and she received the last available spot in the new trial.
It was that phone call and advocacy from her nurse, Patty, that got Lori access to the new LOXO 292 drug that dramatically reduced the cancer throughout her body, even eradicating some areas of disease entirely. Equally important, the trial, medication, and advocacy by her care team has given Lori back something incredibly near to the quality of life she enjoyed previously. She works, has traveled, and she lives a full and happy life with her husband. While her disease is still not curable, the drug is slowing its progression remarkably. “I feel like I am a walking miracle,” Lori says, and she continues to do all she can to educate, advocate, and be a source of hope, particularly to other patients.
Lori’s trial drug, LOXO 292, met FDA approval for human trials in record time because initial successes were so profound compared to the only other therapies available for her disease at the time, chemotherapy and radiation. Once the drug was fully approved, Lori had the option to drop out of the trial and receive her treatments routinely from a provider closer to her home in Vermont. While the convenience was tempting, she has remained in the trial at Dana-Farber and travels back and forth to Boston willingly so she can continue to be monitored, allowing the research teams to follow and learn from her unique case. It’s another meaningful way she has found to give back. In her own words, “this drug has given me life and I see every day as a blessing.”