Hello, my name is Porter and I have been living with cholangiocarcinoma for 11 years. Official diagnosis was confirmed back in 2013 at the age of 34 with stage 3 intrahepatic cholangiocarcinoma.
Six years ago, treatment options for cholangiocarcinoma patients were very limited. Most of us were only offered a standard first-line chemotherapy regimen such as Gemzar and Cisplatin. For many, this regimen can have very little effect on treating this cancer.
Over the last 6 years I have been through multiple chemo regimens and surgeries on both my liver and lungs. I have had genomic testing done on both liver and lung tissue two times. Both reports revealed I have a FGFR2 fusion-mutation.
After my last liver surgery in Jan of 2017, tissue testing again revealed the FGFR2 mutation. Shortly thereafter I started a clinical trial targeting that specific mutation. I have now been on this targeted treatment for almost 2 years. This treatment has made a huge and positive impact on my life. Not only did I have initial significant shrinkage, this treatment has been night and day compared to the chemo I was on. As my oncologist likes to say “my cancer is on vacation” and although we are not seeing much shrinkage at this point, it is keeping my cancer at bay.
My disease continues to be stable with no progression. Because of this targeted treatment and the tolerability, my children and I live fairly normal lives on a day to day basis and my quality of life is at an all-time best. This is probably the best I have felt over the last 6 years.
One big lesson I have learned over the years with cholangiocarcinoma is one size does not fit all. Thanks to genomic testing and CCF’s Mutation Matters campaign, we are increasingly seeing more patients being offered individualized treatment plans.