This is my first time posting to this forum and I’m looking for some support, ideas, and help in dealing with my husband’s cholangiocarcinoma. DJ is 65 years old and before this was in general good health.
DJ turned yellow because of the bile duct obstruction just before Christmas. He was operated on at Strong Memorial on Feb. 6th, 2013. Dr. Schoeniger removed half of his liver, his bile ducts, gall bladder, and three nodes. He reconstructed his bile ducts with part of his small intestine and had to reconstruct a blood vessel that was also involved. After the surgery, the doctor said that there were negative margins on everything they removed.
The pathology report showed that two of the lymph nodes were cancerous greatly changing DJ’s prognosis from 50/50 to 90/10.
Three months after surgery, they started chemo. The plan was to do 4 cycles where DJ received one infusion of Gemzar a week for three weeks with one week off. At first, they also wanted him to take Xeloda every day. This regimen immediately proved to be too taxing and they had to stop with the Xeloda after the first week. His white blood cell count dropped to a dangerous level.
The first cycle, DJ was able to tolerate one infusion of Gemzar and Xeloda skipping the last planned infusions. He was off everything for 2 weeks in order to get his blood work to improve. The 2nd cycle without any Xeloda, he was able to tolerate 2 regular dosages of Gemzar. On the third cycle, he was able to tolerate his all three infusions but they reduced the amount of Gemzar he received each time. So, the first infusion in the third cycle, he received less Gemzar than in the other cycles, the 2nd infusion was a little less than the 1st infusion, and the 3rd infusion was a little less than the 2nd. The 4th cycle, he was able to tolerate his first 2 infusions but his white blood cell count was too low for the 3rd infusion. I don’t know what the dosages were.
DJ generally feels pretty good. The 2nd day after chemo is his lowest point and he will be fatigued and feel kind of blah. He hasn’t had any nausea but he had bad heartburn and has been taking Prilosec prophylactically. That has worked well. Mostly, his body feels beat up and sore but he still is very active going biking, swimming, or kayaking several times a week. Sometimes he feels as though he doesn’t have the breath to continue and he has to sit down and recharge. The day or so after chemo, he’s pretty foggy and sometimes acts confused. When he has been off for a couple weeks, his body really gets strong and he can pretty much do whatever he wants.
The week after his last infusion, he had a scan. He had to drink something for an hour before the scan, then do the scan. At that time, June 30th, the scan was clear, no signs of cancer.
He had a week off before starting radiation therapy. He is now at the end of his 4th week out of 5 weeks (25 treatments) of RT. In addition to RT, he takes 1500 mg of Xeloda twice a day M-F. He is taking compazene for nausea and 40mg of omeprazole for heartburn. In general, he feels OK though more fatigued than usual. On two different occasions, he picked up some kind of virus with fever and vomiting but was able to recover pretty quickly.
His appetite has been pretty good. He has been able to maintain his weight with minor fluctuations. Sometimes he doesn’t feel like eating but will try anyway. We have maintained a mostly vegan diet for the last 4 years but lately, DJ will occasionally eat meat.
I am very interested in what others have experienced.
Thank you in advance for your incite. Jane