In 2009 Melinda was a paramedic, wife, and mother of 6 when she began experiencing discomfort, which she initially attributed to the hectic nature of her job. However after discussing her symptoms during a routine check-up her doctor decided to order an ultrasound. It was at this time that a mass was found on her liver. Then on December 1, 2009 Melinda was diagnosed with Intrahepatic Cholangiocarcinoma.
Cholangiocarcinoma, otherwise known as bile duct cancer, is not only rare but difficult to treat. The main form of treatment for patients is often surgery. Initially Melinda was told the tumor was confined to her liver so, a mere 20 days after her diagnosis, she underwent a procedure to have two-thirds of her liver removed. Just a year later, the cancer spread to her lungs. Melinda was now a stage 4 terminal cancer patient.
It was at this time that she took a more active role to learn about her options. Her doctor suggested a clinical trial. Unfortunately she soon found out that, although the drug would have been provided free of charge during the trial, her health insurance would not cover the costs of the trial’s standard care, such as blood work and scans. In June of 2010 Melinda went forward with a treatment plan that involved chemotherapy. Her first round lasted a period of 6 months. During this time, her cancer spread back to her liver, and she continued treatment for another 6 months. Ultimately, as her symptoms grew worse, she decided to stop chemo. Melinda recalls, “It was a hard decision because I didn’t want my children to think I just gave up. But my quality of life was just so bad.”
At that point Melinda mostly stopped looking for clinical trials. She found that while there were active trials, many involved chemo. However upon speaking with her oncologist she became aware of a clinical trial in Maryland at the National Cancer Institute. The month-long trial was federally funded and involved surgery and adoptive cell therapy. Melinda enrolled in the trial in March of 2012. She relates the remarkable change she experienced upon completion of the trial. “Before the trial I had so many tumors on my lungs that I couldn’t walk without coughing. But after the trial I started feeling so much better.” Remarkably she was the first person in the trial to have a positive response.
Melinda spent the next 18 months with no other treatments. But over time, tumors started growing again. At this time researchers decided to take a different approach using one of her T cells. Months later she reported feeling much more active. Melinda spent the next 3 years without treatment until ultimately having to undergo surgery to remove tumors on her right lung. Although not officially able to declare herself in remission, she credits her survival to clinical research.
Often when people are first diagnosed, Melinda shares, they feel like there is no hope. But she points out the progress that has been made and the ongoing research being conducted. She emphasizes, “There are more options now than there were 9 months ago. We’re not going to get better treatments out there until clinical trials are done.” Today Melinda continues to share her story and provide support for others as an advocacy coordinator at the Cholangiocarcinoma Foundation. Looking back on her career Melinda says, “I loved being a paramedic, and I wondered, ‘Will I ever find anything I love as much again?’ And I did.”
Written by Leslie Perez, Marketing & Communications Coordinator