Diagnosed with Pancreatic Cancer
In 2017, Allison Kuban had just returned from a week-long trip to France with her boyfriend when she started experiencing intense stomach pain, fatigue, and rapid weight loss.
After seeing several doctors, Allison was awaiting test results when her stomach pain became so severe that she went to the ER to be seen immediately. Doctors at the hospital initially suspected she had a form of endocrine cancer but weren’t sure. Two days later, on her 31st birthday, Allison found out she had Pancreatic cancer.
Allison sought out a second opinion who confirmed this diagnosis and determined her cancer was stage-4, since it had metastasized to her liver. She began a regimen of chemotherapy immediately, going for treatment every two weeks that she received through a port in her chest. Allison stayed on chemo for seven months, struggling with the side effects from the drugs, which left her drained physically and too sick to continue.
“Chemo was keeping everything stable, but the side effects were so severe,” Allison says. “I realized the chemo might actually kill me before the cancer did. I wanted a higher quality of life instead of just trying to extend it. I was willing to try anything.”
Finding a Clinical Trial
One of Allison’s doctors suggested sending a biopsy of her tumor to a lab for genetic testing. If the tests could find the genetic mutation that was causing her cancer, Allison could then be matched with the right medication to target the mutation. During this time, Allison continued with her chemo treatments.
Luckily, Allison’s testing identified her specific genetic mutation. By fate, a relative of Allison’s was at a seminar for pancreatic cancer and met a doctor who knew of an opening in a trial for her mutation at MD Anderson.
“Treatment totally changed for me in a matter of days,” Allison recalls. “I had been on infusions, which were switched to two pills in the morning and two pills at night. After three months, I did a staging scan and my tumors had shrunk by 38%. As of today, they have shrunk over 70%.”
Allison started the clinical trial in 2018 and has remained on it for five years. She visits MD Anderson for regular bloodwork and scans to monitor her cancer. Although she lives about an hour away from the hospital, the pharmaceutical company running the clinical trial reimburses all her travel expenses.
“I didn’t think much about cancer before my diagnosis and knew nothing about clinical trials. At the time, I was so sick that I leaned on my caregivers for help researching and finding resources. If anything, caregivers for patients are the ones who should be made familiar with clinical research and the different treatments available. When you’re the actual patient, you just want to get through it and keep yourself alive,” Allison says.
In reflection, Allison wishes she had known about clinical trials when she was first diagnosed. “I likely would not have opted to do chemo if I knew there was an alternative option for me. Without my doctor, I likely wouldn’t have even done the genetic testing. Now, I tell everyone I know about it.”
Advocacy Work & Advice
After her initial diagnosis, Allison began getting involved with support groups through her hospital and other pancreatic cancer organizations. As an advocate for pancreatic cancer, she has also recently published a book about her experience and treatment, Like A Needle In A Haystack: My Survival from Stage-4 Pancreatic Cancer.
To other patients considering a clinical trial, Allison advises them to stay positive, and keep searching for a trial that is the right fit for them. Even if a study you participate in doesn’t work, your data is helping advance research to fight and cure diseases. “The traditional form of treatment with stage-4 cancer is chemotherapy, and doctors often don’t advise taking risks since you don’t have a lot of time,” Allison says. “For me that risk was worth it, and it could be for you too.”
Additional Resources:
https://pancan.org/
Read Allison’s book, available on Amazon here.
To search for medical conditions in a specific location, visit our Search Clinical Trials page.
To stay informed about clinical trials, visit our Resources page.
For volunteer opportunities with CISCRP, visit our Volunteer page.
Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org
