Sean’s intro

We have been reading this forum for the past couple months and thought it seemed like time to post our experiences.

Our then 20-year-old son, Sean, was diagnosed with cholangiocarcinoma in August of 2015, just prior to his third year of college. He had been sick, lost his appetite and was complaining of shoulder pain while away at college. The school health clinic thought he had some sort of virus, but had ruled out HIV and Hep C. By the time we came to visit him he had lost significant weight and was in quite a bit of pain. We took him to a hospital and they admitted him immediately. The nurse at the desk later told us that she knew he would be admitted the second she saw him.

After a day in the hospital, during which he had a biopsy of his liver, Sean was discharged with pain medication and told we would be contacted for follow-up care – likely by an oncologist. At the follow-up appointment, we were told he had a cancerous tumor in his liver (at the time, an unknown primary) and were shown MRI results that looked horrible. His prognosis was grim. The doctor told him that he likely had a year to live – maybe two if things broke his way. A follow up appointment the next day made things sound even worse, if that is possible and left Sean seriously considering simply pallative care.

We decided to bring Sean out to the East coast with us. Because his dad is in the military, we were able to get Sean admitted to Walter Reed. The care provided by the military medical professionals was everthing we could have asked for. During the week he was there, he had a PET scan, another biopsy, colonoscopy and endoscopy. They found no signs of cancer in his stomach, pancreas, gall bladder or colon. His diagnosis and prognosis were confirmed, although they and every other doctor we have seen since have thankfully not given him a life expectancy. He began Gem/Cis in late August 2015.

Sean began outpatient care at another military medical hospital. He regained most of his lost weight and seems to tolerate the chemo fairly well. Normal nausea and fatigue. A follow up PET scan showed a 30% shrinking in his tumors.

This past October he was referred to Georgetown for liver-directed therapy. In November he underwent a chemo embolization (TACE with Irinotecan) of the left lobe of his liver. Following that, he returned to the normal Gem/Cis routine. The next PET scan showed remarkable results. The scan from last September had shown the small remaining bit of his healthy liver pressed against his side and the rest of his abdomen lit up brightly. Now, only one small spot in his right liver shows up brightly on the scan. Sean’s doctor mentioned that he had been very concerned on our first visit that Sean would suffer liver failure. He said that a reasonable original goal in September 2015 was for Sean to spend that Christmas with his family. Things are looking much better now.

Sean has had two additional TACE procedures. The scan following the second one showed just two very small areas of concern. He had the third procedure yesterday.

Our hope now is that he can take a chemo holiday for the Summer. Although he has tolerated Gem/Cis well, his WBC counts are starting to be an issue.

-Tim and Julie