Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

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.

What a journey.
Thank you

After biopsy in August they determined that I had Cholangiocarcinoma although I had no symptoms
My husband ordered test online called onetest he saw an ad said AI can detect early cancer because cells leak so he got us both premium test and biomarkers were elevated
for breast and ovarian cancer but 19.9 is entire pelvic section - after visit pcp he ordered pelvic scan and said there was mass on
My liver - Sept 6th Montefiore hospital in Pittsburgh did resection of left lobe plus removed my gallbladder and 10 lymph nodes - incision was middle of breasts down to belly button - although pathology tests all negative and said
stage 1 it can still be microcellular so started 3,900 mg day capecitabine had terrible side effects severe mucositis do reduced to 3,000 mg day was a little better then got sinus infection was on antibiotic cleared everything up now finished third round on 7 days off and mucositis began plus blisters on chest and feet and hands hurt I’m ready to give up no appetite food taste terrible

Great that you had the surgery.
I had my surgery and liver transplant at Montefiore too.
Great center.
Despite the fact that the risk or recurrence for transplant patients is lower than the reaction alone, I hadsix months of capecitabine 4000 a day.
This was after the surgery.
Prior to that, I had 10 months of chemo (infusion) plus radiation
If your body cooperates, you should get the chemo because our cancer is aggressive and risk of recurrence is high.
Wishing you fast recovery

I have been on chemo for 2 years with this diagnosis. The targeted therapy that was found called Pemazyre has been the most effective. I find strength in my faith w/God and try keeping a good attitude. I have stents and due to a grandchild rough housing had to get an external bile duct drain that is now capped and they are waiting 5 weeks to be sure everything ok. I’ve gotten on FB and found hugely proactive cholangiocarcinoma groups I recommend you hop on.

The mapping and imaging were long and really wiped me out. I feel better now. I start September 14th. Praying it works 🙏🏻

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