Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

Hi,
I am 67 years old and was diagnosed in January 2023.
Prehillar cholangiocarcinoma stage 3B, unresectable 3 cm tumor.
Went through 16 sessions of 3 drug infusions and 30 sessions of radiation, then, maintenance chemo.
In December 2023, I was approved for living doner liver transplant.
Pre-surgery laparoscopy showed no metastasis to lymph nodes or other organs.
I had a successful 15.1/2 hour surgery in jan 2024. Tough recovery.
Then, 6 months of capecitabine 2000 mg, twice a day to minimize the risk of recurrence.
I am doing well but my oncologist warns me that I have high risk of recurrence.
Mayo data give a %30 chance of recurrence.
I wish everyone the same successful journey that I have had so far.
Optimistic about future .
Thanks

Kimia2000 -- Thanks for sharing. You're an inspiration.
70% chance of no recurrence.

Dan

Thank you

I just got my bile duct diagnosis and go in to hospital tomorrow for ERCP and Pet scan. I have only known about it in the last few days. Am in shock scared and worried. My symptoms were stomach pain and Nausia.

Try to stay positive. Where are you located? I will be praying you’re a candidate for surgery.

I love reading success stories. Reading this brings me some happiness. My mother was not so fortunate. We offered to be living donors but there were too many other medical issues. God bless you- may you stay healthy and cancer free!!

I am really grateful.
Thank you

I am sorry for your mom.
This is a tough cancer and I recognize how lucky I have been.
Good luck

I was diagnosed 2 years ago.
The first month was horrible as I was shocked and didn't have any perspective on my immediate future.
Once the doctors gave me a slim chance and I started the chemo ( 8 months, 3 times each month), I felt more confident.
Stay hopeful and surround yourself with family and friends and avoid googling about it.
Happy holidays

Stay positive. My husband had surgery in June 2024 to remove/resection of left liver lobe. Prior to surgery, he caught it early, pain on left side. Was told by a different doctor that it was hemangioma and not to worry because it is not cancer, that was in 2022. In 2023, slight pain near liver, he went to Mayo for second opinion, he had an MRI but had to stop it due to being claustrophobic. He did not follow up. In May 2024 he had another MRI with the doctor who told him it was hemangioma, the lesion doubled in size from 2023 to 2024. He contacted his Mayo doctor in May, 2024. The doctor asked him to request all images from the other doctor and send them to Mayo. A couple of days later, we were out of town and the Mayo doctor called him, told him he needed some tests done at Mayo, he said to look at the patient portal for scheduling that would be there when we returned home. He had a liver biopsy (2 areas on the liver, 1 on the tumor and the other biopsy on the liver that didn’t have the tumor), lots of blood work, CT scan of chest and a MRI. Liver biopsy results, tumor was malignant, and the other biopsy of liver looked good. Surgery scheduled on 6/24/24, 2 surgeons and da Vinci robot assisted with surgery. Amazing surgery, 4 small incisions across his abdomin and an incision on his belly button which is where the left lobe of his liver was pulled out. In August, 2024 he started taking 2000 mg of capecitabine twice a day. He had diarrhea 8-10 times a day, lost 18 lbs and had 3 IV potassium hydrations. Mayo oncologist had him stop the chemo so his guts could heal. He started back on a reduced dosage of 1500 Mgs Capecitabine twice a day. He is able to tolerate it much better now. Every 2 months he has CT Scan of chest, MRI, and blood work. So far, cancer has not recurred but was told recurrence can happen, so for the first 2 years he will continue with the bi-monthly CT Scan, MRI and blood work. The tumor was 6 cm and he was diagnosed with stage 1/grade 1B. We love Mayo, his team of doctors, PA’s, nurses and the Pharmacy. ❤️❤️❤️❤️. He will be taking the oral chemo for 6 months, he is half way there and should be done with chemo in March, 2025.