Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

It was performed on tissue.

How in your inmunotherapy working?

Too early to tell. I have only had 2 treatments. Will have a CT scan next month to see if there is any shrinkage.

Our surgeon call us yesterday and after along talk he let us know that he feels the cancer started in the bile duct, not pancreatic cancer. wow don't know what to say. He did recommend a treatment plan to more forward. Has anyone else had this experience? How are you doing with the bile duct treatment?

@lovingwifeterry, it can sometimes be a winding road to a firm diagnosis. This must be unsettling to now shift to accepting bile duct cancer, also called cholangiocarcinoma. To help you connect with others, I moved your message to this existing discussion:
- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

Here you can connect with others like @afrancesca @kjrita @suchita90 @jerrydrennan @billdemarco @wjdemarco @lvtexas @reddino @maria957 @tball3748 and others.

You may also be interested in these 2 related discussions:
- Calling all Cholangiocarcinoma/bile duct cancer Patients https://connect.mayoclinic.org/discussion/calling-all-cholangiocarcinomabile-duct-cancer-patients/
- Diagnosed with cholangiocarcinoma, can this be treated? https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

May I ask what treatment plan was discussed with the cancer team?

Yup. Diagnosed last December and am stage 4. Started chemo in March and been doing it ever since. My chemo is maintenance but I've been doing okay. Fortunately I've had no real pain what some of the side effects like brain fog can really get you down. I recommend early palliative care along with whatever treatment your oncologist feels necessary.

We have not had direction from our local team. We had a phone call from Bob's surgeon at(UWMC) we traveled for surgery. and we discussed what type of cancer and he felt after all scans and what he saw during the surgery (couldn't do whipple and closed him back up cancer had spread) that his best guess is bile duct. So HE suggested the latest research to go with gemcitabine, cisplatin and durvalumab for treatment. Our oncologist says she is worried how well he will tolerate the cisplatin, what have you heard about issues with that drug? I am worried about it with his current infection. My husband is 74 and has been fighting a E.coli infection in his bladder, clinic feels must have gotten it in the hospital during surgery a month ago. On his second oral med to treat it. If this doesn't work we have to try IV med. Thank you for reaching out!

Could you share what treatment drugs they are giving you? Also is the cancer stable? Thank you so much for reaching out.

I actually just finished writing a lengthy note to you but for some reason when I hit reply it didn't work. And right now I'm a bit tired to do it all over again. Add a message here next week after Tuesday as I am having a scan to determine some questions about advancement. The drug I'm on now is called Gemcitamine

I will watch for your reply. Thank you so much for sharing your journey. My husband was on gemcitamine and another one also for pre surgery chemo. The surgery was aborted when they opened him up and found more cancer. I do not know if he can tolarate the new drugs Cisplatin, the oncologest has her doubts if he will be ok on it. I am looking for other combos that work if this new one doesn't. I look forward to your replay. Have a nice week-end.