Hello my name is Kate,
I am reaching out from the U.S. I am desperately researching sites for information on CC. My husband was fine and then not fine. Three months ago he thought he had a stomach virus and then fast forward to jaundice, two ERCP surgeries to put stents in his liver and this week the devastating news that that cancer is throughout his bile duct system and has tendrils wrapping around his stomach. That said we are told he is not a candidate for a liver transplant, not a candidate for resection so on our only option is the standard “play book” chemotherapy which appears to be the same used all over the globe. From reading the introduction posts it seems we are not alone with the devastating onset of this disease. I am hoping to get as much information and advice as I can and it goes without saying but I will say it, I am so sorry for everyone who is going through this terrible time.
All of us at AMMF are so sorry to learn that your husband has been diagnosed with inoperable cholangiocarcinoma, and that you are having such a hard time …
Here in the UK, liver transplantation is possible where PSC is advanced, but only where there is no trace of CCA. Once CCA has been diagnosed, which happens so often with PSC, then transplantion would no longer be an option. And, of course, despite the success of liver transplantion for CCA under the Mayo protocol in the US (albeit under a very selective and difficult protocol) liver transplantation for CCA is not allowed here in the UK. You are right, in that the global first line standard of treatment for those with inoperable CCA now is the Gemcitabine/Cisplatin chemotherapy combination.
However, following on from that there are 2nd line treatments beginning to be investigated, and there are trials for targeted therapies. So, it might be worth your husband requesting that his cancer is screened for gene abnormalities (molecular profiling) to see what targetted therapies he might be suitable for, if any, in due course.
If there is anything else you think we can help with, please come back and post again …
With our best wishes to you and your husband
Please note it is not appropriate for AMMF to give specific medical advice or recommendations, but we do have a wealth of experience and information which we are always willing to share, whenever possible.