Topic: Running out of options
My mom is 65 yo and in November 2005, she was diagnosed with Cholangiocarcinoma. It took a while to determine exactly what she had, however Memorial Sloan Kettering in NY re-evaluated the results of her biopsy (originally prepared by our local hospital) and made the diagnosis. Her only symptoms were excessive sweating, which she had been experiencing for a few months and attributed to the warm summer weather. This ultimately was the result of tumor fevers.
The disease was advanced (multiple lesions throughout the liver) and was therefore non-resectable. Her encologist put her on Gemcitabine (Gemzar) for 8-weeks (4 on- 1 off and 4 on). After the first week or two of treatment, she had began to have signs of yellowing both in the whites of her eyes as well as her face. In the latter half of the treatment, other than fatigue and shortness of breath, the tumor fever had subsided and with the exception of her bilirubin count, which was 1.6 at the time, her enzymes levels had come down to near normal and she had regained some strength. To sit across the table from her you would not even know she was sick.
Long story short, after retesting, it was determined that in fact several lesions grew, indicating that the treatment was not working. She was next deemed eligible for a trial for the drug Nexavar. Although recently approved for kidney cancer, it is beieved that it may also be a good form of treatmnent for Cholangiocarcinoma. We had to wait 4-weeks to start treatment. I assume that is the time it takes for the previous drugs to clear your system. By the way, the drug kills the cancer by cutting off the blood supply to the tumors. After 1-week of treatment at the highest dose possible, they had to discontinue tratment as her bilirubin count had jumped up from 1.8 to 2.8. They told her to drink a lot of fluids over the course of the next week, which she did. After being re-tested yesterday, her count had increased again to 3.0. She was dropped from the trial.
My mom has started Xeloda today, 4 pills twice a day. She was told that there is a 10% chance that it will have a positive effect. After that, assuming the worst, we were told we are out of options. Any recommendations as to any other course of action that may yield positive results? My brother and I have done everything we can think of and feel so helpless at this point.