kcbrinley

After experiencing unexplained pain beneath his right rib cage, my husband was diagnosed with cholangiocarcinoma in May 2009.

The tumor in his liver was large 12-14cm . This was fortunately the only cancer site, and it took several weeks of testing before the doctors were convinced of this.

We were told, normally cancer tumors of this size were metastatic, and usually secondary sites from colon, or pancreatic cancer.

We were told it needed to be reduced in size to aproimately 1/3 of the size it is currently to consider surgical removal.

He began Chemotherapy at OU Cancer Center in Oklahoma City on 5-18-09: Gemcidabine by infusion on day 1 and day 8 of a 21 day cycle, and the oral chemotherapy drug Xeloda, 2 pills twice a day on days 1 through 14 of the 21 day cycle.

After day 12 on Xeloda, he was hospitalized for 21 days with severre hand foot syndrome, and severre mouth/throat sores and mucositis. He was unable to use his hands, or to walk, or to eat or swallow for the first 12 days in the hospital. He lost multiple layers of skin, beginning with the palms of his hands, on the soles of his feet, and from mid torso all the way to the top of his head – in addition we were told his GI system was sluffing off cells and just as raw as the part we could see on his lips and inside his mouth. He was initally only being treated like a burn patient with topical ointments and pain medication, they finally began TPN (IV nutrition on day 13, and he was released 8 days later.

After, recovering for three more weeks at home, with no chemo at all, he began round two of chemo on July 13, with another21 day cycle consisting of Gemcidabine, and Cisplatin.

After 2 complete 21 day cycles, his tumor has remained stable, but has shown no signs of shrinking.

We are now waiting for an appointment on Oct 1, 2009 with MD Anderson for a review of his records, and hope for some other kind of treatment that will help.

If anyone has any information for us, I would appreciate any suggestions.