Cholangiocarcinoma - Mayo Clinic Rochester. Are there other patients?

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.

@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.

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

@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.

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
Hi!!
How is your husband doing now? My brother has the same thing- sounds quite the same actually. Lots of tumors on both lobes of liver.

Good morning Tinkerbel, my spouse was diagnosed with bile duct cancer and had a 6.5cm malignant tumor on his liver. It was caught early but cholangiocarcinoma is aggressive and rare. He had surgery on 6/24/24 for liver resection where the left lobe of his liver was removed by the surgeons and da Vinci robot and pulled out thru his naval. Surgeons did not see the cancer anywhere else and great margins. He started oral chemo capecitabine in August, 2024 twice a day 2000 mg each dose. Plan of treatment for chemo 2 weeks on followed by 1 week off of chemo. Week 7, severe diarrhea 8-10 times a day for 3 weeks and he lost 18 lbs. I had to take him to Mayo three times in 2 weeks for IV hydration with potassium. He goes next week for his bi-monthly CT Chest, MRI abdomen, lab work and visit with PA. He stopped taking chemo on 10/2 due to the diarrhea and Mayo wants his guts to heal and will go back on chemo but dosage will be reduced. The cancer was caught early due to symptoms he felt and determined Stage 1B/Grade 1. His 5 year prognosis is 60/40.

I just hope and pray the cancer does not return and he does well on a lower dosage of chemo. Mayo’s plan of treatment for the first 2 years is lab work every 3 weeks and bi-monthly CT Chest and MRI abdomen. The chemo is for 6 months, he also has another symptom where the bottom of his feet are peeling and experiences pain and swelling on his fingers. This is also a side effect from chemo for hand & feet peeling.

What has Mayo planned for you?