I am very sorry to hear this turn. Constant stomach and back pain sounds awful, and lack of sleep for a month must be terrible. I hope you find some relief soon. Being miserable for that amount of time changes your perspective.
Given all you have endured, I completely understand the decision to focus on quality of life. I have no experience with hospice, so I can't really help there. One thing I have given a lot of thought to is what would I want to do if Andrea fails the more standard treatment regimes. I am sure you have pondered this much more than I have, but I want to write it anyway in case it is even a little helpful. Here is my rough plan:
1. Add losartan to a previous working chemotherapy. Based on my understanding coagulation sometimes helps cancer cells develop a tolerance for chemo. As a blood pressure medicine, Losartan combats this tolerance. In the specific research I saw, Losartan + 5FU was much better than 5FU alone treating a pancreatic cell line.
http://www.nature.com/ncomms/2013/13100 … s3516.html
I am not sure if you would consider more Xeloda (and I can't tell if it went from working to not working for you). If Andrea were tolerating Xeloda, I would try and add Losartan since it seems to me it has upside with very little downside.
2. Immune response trials - I was encouraged by the lecture Dr. Ferrone gave at the stakeholders meeting. I did not realize that cholangio triggered a relatively strong immune response. This leads me to favor immune based trials if available. The NIH TIL trial is out due to age, but Dr. Ferrone mentioned MGH was soon to be opening a new trial based on their research. I have no idea how long "soon" is, but perhaps there is a way to find out if this is imminent or not? If so, that would be a trial I would strongly consider.
3. Genetic marker trial - You said you had TP53 and CDKN2A/B. Dr. Javle mentioned a couple of trials. Are there any trials that might target these mutations but maintain a good quality of life? Perhaps you could start and stop if you react badly?
I really hope you are able to treat your symptoms and feel better soon. Due to stomach pain, Andrea was only able to tolerate tiny amounts of food/liquid for 3 weeks during her IMRT radiation. With those types of symptoms nothing matters but feeling better.
All the best Percy,