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.
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.
“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.
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