Guest post written by Melinda Bachini
I was diagnosed with Intrahepatic Cholangiocarcinoma in 2009, and in a moment, my life changed forever. My husband and I both have a medical background. I’m a paramedic, and he is an RN, so we knew the gravity of the situation. I was fortunate that my medical team moved quickly and within 3 weeks I was having surgery. My surgical team removed over 2/3 of my liver, and the cancer was gone, so we thought. Sadly, we were surprised that cancer had metastasized to my lungs at my 3-month check-up and scans. My doctor delivered the devastating news that I was now a stage IV terminal cancer patient.
After a second opinion at the Mayo Clinic, I began the standard of a care chemotherapy regimen that left me nauseated and fatigued. The toxicity was brutal on my body, and we switched to different chemotherapy. The treatments became more and more difficult, and scans showed chemotherapy was not working, the tumors were growing. I felt like I was running out of options, and I was scared. The word terminal kept resonating in my head, and I could not accept this death sentence even though I was told there were no other treatments. My husband Steve and I have six children, and I wanted to be here for them and celebrate birthdays, graduations, weddings, and life!
I began researching a second opinion and clinical trial options. I came across Dr. Steven Rosenberg, who had a trial using adoptive cell therapy, which harnesses your own immune system to fight off cancer. I decided to pursue a clinical trial with Dr. Rosenberg at The National Cancer Institute. I was fortunate enough to have a tremendous response to this treatment.
I am here over 11 years later, celebrating important milestones, including a grandchild. I made a career change. I now help other patients, and caregivers navigate their cholangiocarcinoma diagnosis with a second or third opinion, find a clinical trial, and connect to support networks. I am currently the Director of Advocacy for The Cholangiocarcinoma Foundation, and I feel blessed to help patients through their journey and bring the patient voice to the forefront of research and patient care.
Second opinions and clinical trials save lives!