Thanks Marions for your kind words which mean a lot to me, my friend, and his family.
My friend has only 2 cycles of Gemox/Erbitux left. This targeted therapy is a part of a study that is being conducted in Austria [*]. As everyone here probably knows, Erbitux is the commercial name of Cetuximab, a monoclonal antibody.
Here is our story.
My friend was diagnosed in January 2011 with distal CC. Initial tests suggested that the tumor was only at an incipient stage and that a Whipple would take care of it. We were very hopeful.
Unfortunately, our joy was short-lived. During the Whipple surgery at Sloan-Kettering, it was found that the tumor had spread quite a bit and infected the aorta. Thus, the surgeon abandoned the resection procedure.
Later, my friend opted for the GemOx/Erbitux treatment, based on the good results reported [*].
GEMOX/ERBITUX TARGETED THERAPY:
A CT scan before the GemOx/Erbitux chemotherapy began, did show activity in the lungs and neck, indicating the possibility of distal metastatis. Luckily, towards the middle of his treatment with GemOx/Erbitux, the lungs and liver did not show any more signs of tumor activity.
We were elated as the CA 19-9 marker plummeted from ~3000 to only 125. However, it seems to have settled at that level, instead of going below 60.
In short, the GemOx/Erbitux worked remarkably well, but the horrible disease will remain in his body. At the end of his 12 cycles, he'll undergo a complete PET scan to examine the extent of the remaining tumor.
The question now is what to do after this GemOx/Erbitux therapy is over?
AFTER TARGETED CHEMOTHERAPY GETS OVER:
Oncologists/surgeons in the US who were consulted, consider resection to be off the table, as before chemo, the disease had shown signs of distal metastasis.
Thus, my friend will (in all probability) continue on with Erbitux (but not GemOx) forever. As the dosage will be lower, hopefully the side effects (rash/hiccups) won't be as severe and my friend can function normally.
While Erbitux has minimal side-effects compared to Gemzar or Oxaliplatin, it still is a powerful drug, and its long-term effects unknown. Will my friend be able to withstand Erbitux forever?
Furthermore, there is no guarantee that this dreadful disease will remain manageable forever. The CC tumor cells keep mutating, and eventually might develop their own immunity to Erbitux - maybe in months, maybe years. This eventually will render Erbitux ineffective.
The big question is what will happen when Erbitux no longer is able to control the CC?
LONG TERM OPTIONS:
My friend's spouse and us too are looking at alternative treatments (Ayurveda, herbal treatment). Although I am aware that the chances of this being effective is like 0.01%, there is no harm in exploring this recourse.
Moreover as I am sort of a scientist (but not a doctor), I manage to glean out basic information from the various research papers on Cholangiocarcinoma (through scholar.google.com). There seem to be other targeted therapies being studied:
(i) Sorafenib (Nexavar);
(ii) Bevacizumab (Avastin);
(iii) Erlotinib (Tarceva).
I'd really appreciate anyone sharing any information on alternative treatment (e.g. Ayurveda/diet) as well as any experience or information on these other drugs (Sorafenib, Bevacizumab, Erlotinib, etc.).
[*] Gruenberger et al. "Cetuximab, gemcitabine, and oxaliplatin in patients with unresectable advanced or metastatic biliary tract cancer: a phase 2 study" 11(12), Dec 2010.
Best wishes to all,