Fred Koehl Shares the Lessons from His Cholangiocarcinoma Diagnosis, Awaiting a Treatment to "Beat This Thing"

Fred Koehl, who spoke at the 2020 Cholangiocarcinoma Foundation (CCF) Annual Conference, was a 62-year-old healthy man living in Atlanta, GA, who was “not ready to go” when he was diagnosed with extrahepatic cholangiocarcinoma (CCA) 7 years ago. Mr Koehl’s disease was diagnosed at an early stage (stage I), and after surgery to remove the tumor (including part of his pancreas), radiation, and 12 cycles of gemcitabine and cisplatin therapy, he was told he had “no evidence of disease.”

That continued until early 2017, when he had a recurrence of CCA. More chemotherapy and a surgical procedure to remove a tumor became Mr Koehl’s new reality. He is currently receiving treatment in a clinical trial, and his best hopes at this stage of his life are disease stability, if not tumor shrinkage, and staying in the clinical trial.

As of the CCF conference, Mr Koehl’s disease is stable, but his CA19-9 level continues to rise, and 2 suspicious areas were noted on a recent scan. “My objective is to keep kicking the can down the road until a treatment is found so that I can beat this thing,” he told the audience.

5 Tips for Patients with CCA

Mr Koehl’s advice to other patients with CCA is meant primarily for men and women who were newly diagnosed with this type of cancer, but it is relevant to all patients with this disease.

“I cannot get rid of your cancer any more than I can get rid of mine, but maybe I can provide some thoughts about how to make the journey a bit less scary, and maybe have you think of some ways to deal with all of this stuff a little better,” Mr Koehl said. He discussed the following 5 major themes that he has used as a guide in his experience with cancer.

1. Seek knowledge to be empoweredKnow that there are many resources being expended today with the goal of treating and ultimately beating CCA. Knowledge is empowering. Be an informed patient, not a victim.
2. Explore and act on your optionsGenomic testing is widely available these days. Get tested! Genetic mutations do matter. Some of the best treatment success stories started with genomic testing. Get the best medical team that you can. Push hard to get the best treatment available. The CCF can help with your search. And take good care of yourself. Live your life in the healthiest way possible. Good lifestyle choices can help improve the likelihood of your success in this battle.
3. Make plans and live your lifeIn many ways, this is easier said than done, but don’t sit back and say, “woe is me.” None of us is promised tomorrow, so have short- and long-term life goals and objectives.
4. Be physically activePhysical activity can help during cancer treatment and recovery. Don’t let a physical limitation prevent you from maintaining an active lifestyle. Do something every day, and then a little bit more tomorrow.
5. You are not aloneSupport cannot cure CCA, but it can certainly make your experience better. Knowledge, concern, and care are things that can come from other patients with CCA and our caregivers.

“All of us can gain from the support of one another. Be open to sharing and gaining the benefit of what we all can offer one another,” Mr Koehl concluded.