Hi,

I haven't posted in a long time, I am now 2 years after diagnosis with advanced inoperable intrahepatic cholangiocarcinoma.  Standard chemo regimens worked for a while and then were ineffective; then was on a clinical trial that unfortunately did not work.  The only therapy left for me was to try drugs that may help but as of yet have no robust clinical data proving efficacy.

In February my oncologist started me on Tarceva (ertonilib), an epidermal growth factor receptor inhibitor.  It is administered orally once per day.  It is currently used for treatment of advanced pancreatic and non small cell lung cancers, but has been tried a bit with cholangio patients.  Well, it is working to keep me alive so far.  Tumours are stable; will be scanned again next month to see how things are doing.  My health is ok as well.  Not great!  But good for someone in our position.

If your doctors don't have any help for you, you may want to try this drug.  Keep in mind it may not be covered by insurance, if not it is 3 to 4 grand a month.

Good luck to all and God bless,

Tom

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(9 replies, posted in Introductions!)

Hello,

I`m Tom from Toronto, was diagnosed with advanced non-resectable intrahepatic CC in July, and have been on gemcitabine and cisplatin therapy.  They were hoping to get it to a state that could be operated on.  In the last 2 months I have had abdominal ascites fluid build-up, it now turns out this is from abdominal metastases that are growing.  Treatment has now been changed to gem and xeloda.
Am wondering if there is any good information on other treatments including alternative therapies that may help.  Even if just for discussion with my oncologist.  I am wary of going to the US or UK for current trials as I don`t want to leave my family for an extended period (we have 3 yr old triplets) and for the costs involved.

Thank you for your attention.