Allyson Pile: Accessing a Clinical Trial for Stage IV Medullary Thyroid Cancer During the Pandemic
For Allyson Pile, it was scary to receive an advanced-stage cancer diagnosis at the age of 29 and participate in a clinical trial for an experimental therapeutic. But confronting the pandemic lockdown and social isolation needed to keep her safe was terrifying.
“I am an extrovert. I get my fuel, my joy, and my energy from people,” Allie explained. “After my surgery, I spent about nine months home, away from everyone. It broke my spirit to have everything that makes me happy torn away because I was immune compromised…it was excruciating.”
Just as her life was returning to some normalcy, the COVID-19 pandemic hit in the United States and the Tujunga neighborhood of Los Angeles, California, where Allie lives with her mother.
Allie was initially diagnosed in 2018. During her boxing workouts with a friend, she felt the strap of her sports bra scraping over a bump on her neck. Allie ignored it until her friend became concerned and took her to an urgent care center to have it checked.
Later that day, they were at work when Allie got a call back from the urgent care center asking her to come back for some scans.
“I think I knew this was pretty serious,” she said. “I ended up going to my mom’s office at YMCA and tried to pretend everything was fine. She just asked how I was doing, and I broke down.”
Allie’s family is close-knit, and her bond with her younger sister Audrey is particularly strong. Her mother and sister were with her when her doctor told her she had cancer.
“I remember feeling my sister and her presence in that moment,” she said. “I watched my mom tear up and I don’t remember the last time I had seen that happen. But the biggest part I remember was my sister. And just knowing this is going to change everything.”
And everything changed.
It took time to confirm the diagnosis because medullary thyroid cancer is rare, especially for someone as young as Allie. During the surgery to remove the cancer, Allie’s team found that the cancer had spread. She had stage IV disease.
Deborah J. Wong, MD, PhD, has been Allie’s oncologist since she was initially diagnosed.
“Allie started on the clinical trial a year before the pandemic lockdown,” Dr. Wong said.
When the lockdown hit, however, everything was thrown into chaos. The clinical trial procedures required in-person testing, which made it challenging to keep Allie and others in the clinical trial, as well as all other patients, safe from COVID-19 on the large UCLA medical campus.
After the initial scramble, Dr. Wong and Allie’s team performed most of her assessments via telehealth visits and moved required scans and tests to a smaller, less crowded satellite campus closer to Allie’s home.
“Our research team worked very hard to get the drugs shipped directly to Allie in a safe way that maintained all the clinical trial regulations and safeguards,” Dr. Wong said.
“Even when cancer patients are surrounded by family and friends, it can be very lonely,” she said. “Allie is a young woman going through a serious diagnosis and treatment. Her life path is so vastly different than any of her peers, and so, apart from the pandemic, it can be really difficult.”
In October 2021, for the first time in about 18 months, Allie was able to have an in-person visit with Dr. Wong. Unfortunately, scans had shown that one of Allie’s tumors was growing again and the visit was to decide the next steps of her treatment.
“When she told me to come in, I knew that something was amuck,” Allie said.
Despite this setback, Allie believes that research has made an important difference in the quality of her life.
“For someone with her whole life in front of her, I had all these plans and dreams, and they all came to a screeching halt,” Allie said. “But because of the research that’s been done, I get to live. And I remember I could be in a wheelchair, or in a hospital bed for good, or getting chemo for eight hours a day. It just could look very different than it does for me because of the research that’s been done.”