Introduction and sharing of my father’s journey.

Hello,

My name is Lorna and 13 months ago, September 2015, my father was diagnosed with Cholangiocarcinoma. He was given 11-15 months to live. In the past year we have been on a serious roller coaster of emotions. As we fight this disease. I have asked my father’s permission to share his story with the board in hopes that others can hear about treatment options and learn from what our family has been working through.

In September 2015, after a year of complaining about of a dull stomach ache, my father had a scan which showed a single 3.7×4.9cm mass in his liver and bilary ducts which encased the right hepatic artery. Because of the tumor location he was not a candidate for resection. At that point his oncologist at Siteman Center in St. Louis told him about a clinical study he could apply for, we did and he was accepted. At the end of October 2015 my father had surgery to remove his gallbladder and implant a hepatic artery infusion pump that would deliver chemotheray (FUDR) directly into the tumor. (You can read about him preparing for the surgery here: http://www.stltoday.com/news/local/columns/bill-mcclellan/mcclellan-stepping-into-a-woody-allen-movie/article_ca6aecfb-7be2-5dd8-b352-783403e28853.html)
The surgery was difficult, but eventually he recovered. His treatment started two weeks post surgery. He recieved FUDR into his pump once a month and gym/oxi twice a month. After two months on this treatment he had another scan and it showed the tumor had shrunk to 3.6×2.2cm. We were ecstatic. But he had also had a reaction to the treatment and as a side effect he had developed an abscess on his liver. He was admitted to the hospital for a week. Once he was discharged he resumed treatment and started to feel pretty good again. So good in fact that he and my mother decided to fly to AZ to visit my younger brother and get out of the nasty St. Louis February. While in AZ he collapsed, starting having bloody stool, and was rushed to the emergency room. It turns out that the pump – the life saving pump – had severed his artery and he was internally bleeding. He had emergency surgery and the doctors in Tucson removed the pump. (You can read about it here: http://www.stltoday.com/news/local/columns/bill-mcclellan/mcclellan-everybody-don-t-have-somebody/article_3ea0a982-84f4-5f6f-9659-aecaf7723205.html)

So that treatment was out of the question and we were on the hunt for something new. The next option for my dad was to have super intense radiation treatment for 15 days straight. He went for it. At the same time his oncologist Dr. Tan decided to have his biopsy analyzed just in case there was any treatment that might work out for him. In June 2016 after the radiation he had another scan that showed the tumor had continued to shrink and was now 3.4×1.7cm. At this point the exciting news: The genetic testing had come back that his tumor was missing a DNA mismathc repair enzyme mLH1. This means his tumor has microsatellite instability. (Thank goodness I majored in Biology in college – or I would not understand any of this!) His doctor suggested we try Keytruda. He petitioned Merek and under the compassionate care program he was given the drug. After three treatments his liquid biopsy came back with there no longer being any evidence of the cancer in his blood and his doctor decided to do a scan to see what was going on. The scan on 8/24 showed the tumor now at 1.8×1.1cm, from 3.7×4.9cm almost exactly a year ago. Since then my father has had two more treatments of Keytruda and two weeks ago he had knee replacement surgery. We are feeling hopeful and enjoying every moment we have together because with this disease you never know. The doctor mentioned Keytruda can stop working just like chemo, I haven’t heard of that happening, but I believe it does.

If you have made it this far, thank you for reading, I hope our story can help others with CC. My biggest suggestion is to get the genetic testing because if the tumor is MSI there seems to be something that can be effective.

Best,
Lorna