Not CC but Cholangiolocarcinoma (CLC). What the F is this?

Hi,
I have written before about my husband having CC. I was wrong!!!
The Oncologist says it is CLC. I have never heard of this. Onc says he has a hybrid of bile duct cells & Hepatic cells forming tumours that have arisen from the mutation of his stem cells. Has anyone heard of this before, because I haven’t been able to find much info on this rare disease?

Bill took Nexavar for 3 months. It gave him nausea, vomiting, hair loss, numbness in extremities & bleeding gums. However, it did not shrink his tumours ( he has 12 of which 2x 7.5cm). His Alpha Pheta Protiens have skyrocketed. We are told that this is an indicator of cancer increasing activity, so maybe he is making more tumours, as the current ones have not grown.
This is all very confusing. We asked onc about seeing someone with more experience of this disease but are told that there is no one anywhere, even outside Australia. I find this very disturbing- surely there is a DR who has treated other CLC patients before. We are prepared to travel anywhere. We had intended to go to Sydney to see a Dr in Hospitals there but are onc has made it seem like a useless venture.

Janet, if you are out there, please contact. Do you know anything about CLC? Does anyone have any facts to share?
Regards
Roslyn (Duchess)