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

My spouse was diagnosed with ICC - Bile Duct Cancer. He had a liver resection due to a malignant tumor on the left lobe of his liver which was done on 6/24/24. His team of doctors came up with the plan to perform an MRI on his abdomen, chest x-ray and lab work every 3 months. However, the appointments are every 2 months. First one is on 8/31/24, next one scheduled on 10/23/24. Bile Duct Cancer is rare and has a high recurrence rate, that is why the MRI’s, chest x-ray and lab work is scheduled. He recently started taking an oral chemo drug called Capecitabine 500 mg. He takes 4 pills within 30 minutes after breakfast and 4 more pills within 30 minutes after dinner. No bad reactions so far but this is only day 4 for the chemo. Bile Duct Cancer caught early, Stage 1B / Grade 2.

Is anyone else taking this chemo drug where you can share your experience? He will be on chemo for 6 months. Will take chemo twice a day for 2 weeks, then 1 week no chemo, this will be repetitive with 2 weeks on and 1 week off for 6 months.

Mine is stage 4 and I have been living with it quite well for 27 months. Read my post above about my journey. I had a bad spell Jan-March this year that was the result of reaction to chemo as well as other infections, but other than that, I have basically been living with it, receiving treatment and living life. I know it won't last, but I'm doing better than what was initially suggested to me about the progression of this disease. So tell him to hang in there - I hope his progression is as slow as mine! Kris

Hi,
I was diagnosed in January 2023 with pre-hillar stage 3B cholangiocarcinoma. At Mass General Hospital, they told ne it's unresectable.
I went through 16 infusion with 3 drugs, then 30 sessions of radiation.
After several months if uncertainty and anguish, the UPMC approved ne for loving donor liver transplant.
I had a 15.30 hours successful surgery..then, to minimize the risk of recurrence, I started 6 months of capecitabine, 2000 mg, twice a day.
So far, the images and kab work shiw no sign of recurrence.
My oncologist warns ne that I have 50% chance of recurrence but Mayo data shows %30 chance.
My tumor was 3 cm and no spread to lymph nodes or other organs.
Post-surgey Pathology showed that the tumor was completely dead with no live cancer cell, proving that pre-tranplant treatment was effective.
I had no major issue during the chemo and the tumor shrank a bit during the treatment.
Wish every other patient the success I have had so far.
Thanks
Hassan, 67 years old in CT

Hi,
I was diagnosed in January 2023 with pre-hillar stage 3B cholangiocarcinoma. At Mass General Hospital, they told ne it's unresectable.
I went through 16 infusion with 3 drugs, then 30 sessions of radiation.
After several months if uncertainty and anguish, the UPMC approved ne for loving donor liver transplant.
I had a 15.30 hours successful surgery..then, to minimize the risk of recurrence, I started 6 months of capecitabine, 2000 mg, twice a day.
So far, the images and kab work shiw no sign of recurrence.
My oncologist warns ne that I have 50% chance of recurrence but Mayo data shows %30 chance.
My tumor was 3 cm and no spread to lymph nodes or other organs.
Post-surgey Pathology showed that the tumor was completely dead with no live cancer cell, proving that pre-tranplant treatment was effective.
I had no major issue during the chemo and the tumor shrank a bit during the treatment.
Wish every other patient the success I have had so far.
Thanks
Hassan, 67 years old in CT

Hassan, wishing you well and hoping no recurrence.

Take care.

Has anyone tried Histotripsy? My husband that has Cholangiocarcinoma since Dec 2023 will be having the Histotripsy procedure. It is new in our area and seems to be the best non-invasive option. The problem is our insurance won’t pay for it, and it is around a $17,000 procedure plus other expenses. We are looking for ways to help with some of the finances for it, but it has been a struggle to find. We will go into debt to have it done, but if anyone knows of any grants or other financial options, please share. We did try for financial assistance but don’t qualify.