Cholangiocarcinoma - Mayo Clinic Rochester. Are there other patients?

My husband was diagnosed with Cholangiocarcinoma last Dec. He's had several months of chemo and also immunotherapy. The past few months he has just been doing the Immunotherapy. He had over 15 tumors in his liver and now is down to 1. We give all the thanks to Jesus. We have been told this is uncommon to see in this kind of diagnosis. Last week he had the tumor ablated and will get a scan in a few weeks to see the results of this and if all tumors are gone now. We also pray the tumors do not return. I share your pain. I hope and pray your husband will pull through this.

@reachingout
That is amazing that all the tumors disappeared. I think that’s awesome and good news. He really responds to the chemo. Good luck I pray he’ll be OK.

@claudia0811, welcome. Have you also been diagnosed with cholangiocarcinoma? How are you doing?

Yes. I was diagnoced with intrhepatic cholangio carcinoma in October 2024. I was able to have surgery with Dr Patrick Starlinger even though Vanderbilt and Mount Sanai said I wouldn’t be able to. My surgery was on May 27th.
I had my last CT scan on 12/31/2025 and NED, but I have some nodules on one of my lungs that are being watched. My oncologist in Nashvile where I live has sceduled another. CT scan on March 2 to evaluate. I sent a message to Dr Conboy to ask if she could check it out and let me know what she thinks.

@claudia0811, my message was meant for you. Congrats on the no evidence of disease (NED) status. It's important to monitor the lung nodules. As you likely know, lung nodules are very common and they may not be related to the cancer, but need to be monitored.

denvergirl here - I too am interested in hearing from other people with cholangiocarcinoma. I was diagnosed in Aug 2024 and also had surgery by Dr Patrick Starlinger at Mayo. Surgery was successful with clear margins. However, after 6 months of Capecitabine, the cancer returned. I then did infusions with cisplatin and gemcitabine and Durvalumab. This regimen was also not effective, so I hope to start on a trial med soon.
Does anyone else have this experience, and if so, how did you proceed? The good news is that I feel fine.
denvergirl.

denvergirl here - I too am interested in hearing from other people with cholangiocarcinoma. I was diagnosed in Aug 2024 and also had surgery by Dr Patrick Starlinger at Mayo. Surgery was successful with clear margins. However, after 6 months of Capecitabine, the cancer returned. I then did infusions with cisplatin and gemcitabine and Durvalumab. This regimen was also not effective, so I hope to start on a trial med soon.
Does anyone else have this experience, and if so, how did you proceed? The good news is that I feel fine.
denvergirl.

denvergirl here - I too am interested in hearing from other people with cholangiocarcinoma. I was diagnosed in Aug 2024 and also had surgery by Dr Patrick Starlinger at Mayo. Surgery was successful with clear margins. However, after 6 months of Capecitabine, the cancer returned. I then did infusions with cisplatin and gemcitabine and Durvalumab. This regimen was also not effective, so I hope to start on a trial med soon.
Does anyone else have this experience, and if so, how did you proceed? The good news is that I feel fine.
denvergirl.