My name is Charlene and my husband John has been disabled for the last 6 years. Originally John was undergoing different types of medical treatment for pain from another condition. I noticed his eyes looked slightly yellow. I told his pain management doctor, but he said it was nothing to worry about.
I was still worried; so we went to our family doctor. He did some blood tests. The results came back with very high bilirubin and cholesterol counts. The doctor then sent John to get an MRI and a sonogram. These tests results showed that his bile ducts were very enlarged and inflamed looking. This all happened during a three week period; and within that time we saw two liver specialists. One finally did an ERCP which showed John had a tumor in the bile ducts, where they came together into one. It's called a Klatskin's tumor.
When they told me John had a cancer called Cholangiocarcinoma, I was in shock! Only 1 in 100,000 people get this in the United States. When he told me there was no hope for a cure, it was as if someone had sucked all the air out of the room. I couldn't seem to be able to breath. I was devastated. I didn't want the doctor to tell John. I knew that I had to tell him, hoping the blow would be a little easier.
He referred us to another liver specialist in Los Angeles, Ca. named Ian Renner. We left the next day and drove 10 hours to get there. Dr. Renner said he couldn't cure him but there were treatments that could give him time. By this time, John was so yellow that the whites of his eyes were brown. He was on death's door! The doctor said later, that at that point, John had only two weeks to live, at the most!
Dr. Renner did an ERCP and put in plastic stints to aid the liver to drain. ERCP (endoscopic retrograde cholangiopancreatography) utilizes a small camera with tools to go down the throat into the liver. John was in the hospital 10 days that time with constant IV antibiotics. We got to go home, but John needed 10 more days of IV antibiotics. We had a home health nurse show me how to do the IVs. It was scary at first but we're very good at it now.
The next treatment was 3 weeks later. It was Photodynamic Therapy. They infused his body with photofrin. After 3 days they used ERCP to put a red light laser in his liver. When the light hit the tumor, the light plus the photofrin killed the tumor. He had pretty extreme pain after the treatment, so they kept him very sedated. He had to stay in a darkened room for 5 weeks after that. Eventhough they killed the tumor, he still has the cancer. The Dr. explained that cholangiocarcinoma is like a dandelion. It sprays microscopic cancer cells all through the stomach and peritoneum.
The last treatment he had was internal radiation. This was easier on him. He only experienced a little stomach upset. He's been hospitalized once for an infection. The doctor said most people with bile duct cancer die from sepsis infection and not the actual cancer. We have to take his temperature twice daily and watch for any sign of infection.
I forgot to tell you that during this time John was also diagnosed with colon cancer. It's a totally separate cancer not a metastases. They operated on John and said they removed it all; so no further treatment was needed for that.
Thinking back on all this time I can truly say that we have grown closer than ever. I have experienced a lot of depression. It has been severe enough to have the doctor take me off work. I've been unable to function, unless it is something for John. We cry and hold each other wondering why. It's been months since we found out and we are trying to regain some normalcy in our lives, but it is hard.
John says he's going to beat this thing. I hope the treatments will give him enough time to allow someone to find a cure. The doctor has given him a prognosis of 18 months. He just had his 50th birthday.
I hope the treatment information in this story helps to make the challenges of this rare cancer a little easier for the next person.