Diagnosed Feb 2019 at age 19
I’m 23 years old and live in Wisconsin with my parents Jennifer & Daniel, my little sister, Eliana & our dog Lily. My older brother, Ethan & his wife Mackie and their son Jax live nearby.
I was diagnosed with fibrolamellar carcinoma in January of 2018, six weeks after my 19th birthday. I was a freshman at the University of Wisconsin in Madison and in November of 2017 went to the ER at the University Medical Center with abdominal pain. They did a CT to look for appendicitis and instead found a mass in my liver. I was told to have follow up care with my primary care physician at home over winter break.
The follow up process took time, and the final diagnosis was given to us in January of 2018, the day before I was supposed to return to Madison for my second semester of freshman year. We cleaned out my dorm room & I withdrew from the university on medical deferment to have surgery about a week later.
My first surgery took 14.5 hours and Dr. Travis Smith at Gundersen removed 70% of my liver at that time, as well as removing my gallbladder, patching my portal vein & rebuilding a bile duct for me. The pathology report confirmed that the tumor was fibrolamellar cancer and that there was a very small amount of the cancer in one of my lymph nodes.
I started chemotherapy with sorafenib in March of 2018 which I was on until January 2019, when we were told that they suspected that the cancer was returning in my liver. During my workup for a possible tumor ablation, it was discovered that I had a tumor in my chest behind my heart. My ablation was therefore canceled, and parents searched for other options nationwide.
Another fibrolamellar family helped us to get in contact with the providers at Rush University Medical Center in Chicago and subsequently I was seen and treated by Dr. Kent, Dr. Hertl, Dr. Schadde & Dr. Tasse starting in February 2019. I had my second surgery with them in February 2019 to remove the metastatic tumor in my chest and the small recurrent tumors in my liver. I had postoperative complications and was in the hospital for three weeks. After a long recovery at home, I returned to Rush in July 2019 for an interventional radiology procedure to embolize part of my spleen & attempt to open my blocked portal vein. Unfortunately, the portal vein was not able to be opened at that time.
In 2020 my scans showed a metastatic lymph node near my pancreas and so Dr. Tasse performed an IRE procedure to treat that at Rush in March 2021. The procedure was successful, but I had a complication of pancreatitis a few days after returning home and required hospitalization at Gundersen.
I was receiving Opdivo, interferon & capecitabine from May 2019 until spring of 2021 at Gundersen Health System Pediatric Oncology in La Crosse, Wisconsin. The Opdivo (nivolumab) caused thyroiditis which resulted in hypothyroidism, and I take daily levothyroxine replacement therapy. I started lenvatinib in July 2021 and I continue to receive Opdivo and have added gemcitabine to my regimen in April 2022 after undergoing SBRT (radiation) for more metastatic lymph nodes near my pancreas this year. My last scans in June 2022 found no new evidence of disease and I will have my next scans the week before we arrive in Vermont.
I hope to take a class this fall at UW-La Crosse while my chemotherapy & immunotherapy medications continue to be adjusted.