Cholangiocarcinoma - Mayo Clinic Rochester. Are there other patients?

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?

@tinkerbel, I add my welcome. In addition to the helpful post from @sunflower88 who shared about her husband's experience with cholangiocarcinoma, I'm tagging fellow Mayo Rochester patients and caregivers like @lisamb @demooretucson @kjrita @kimia2000 @demooretucson @raetp @jerrydrennan to join this discussion.

You may also wish to see other related discussions like these:
- Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?
https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer/
- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

It's always a shock to get a cancer diagnosis. I'm sure this is one situation where you wish you were not unique in not fitting the standard treatment protocols. I'd like to learn more. What treatment plan is your Mayo team suggesting for you?

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.

Hello Reaching Out,

That is great news about your husband. Hoping the results from the ablation is all positive and the last tumor on his liver is gone.🙏🙏

My husband had his 2 month CT Chest, lab and MRI. The lab work which included Signatera came back negative which is good news. No cancer or recurrence of cancer found. CT Chest results good news, he had 1 nodule on his lungs, it is gone. The MRI, he stopped it due to claustrophobic thoughts and it had been rescheduled on Saturday, 11/2. He will take a Xanax about an hour before the MRI to relax him.

He restarts chemo in Monday, 10/28 with a reduced dosage of 1500 mgs twice a day. We are hoping he will not have any side effects. He had 19 more weeks if chemo with 2 weeks on chemo followed by 1 week no chemo is the schedule for remaining 19 weeks.

We love Mayo, his team of doctors, PA’s nurses, etc. He is in good hands with Mayo.

Wishing you and your husband more success and hoping he goes into remission.

@sunflower88, just checking in. How is the restart of chemo going?

Hi Colleen,

So far so good. His MRI and CT Scan of chest he has bi-monthly all good prognosis.

Thank you for asking.