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

Thanks for the recommendation on website research. Will be happy to share progress on my journey.

Hello,
This is my 1st time posting, I’ve read a lot of post and wishing everyone positive vibes. I just wanted to share my journey in case it helps anyone in any way. I’m 52, I was diagnosed with Bile duct cancer / CC in April 2023. I have PSC/Ulcerative colitis, so I was getting regular blood checks every 3 months. I had no symptoms, but my liver enzymes were elevated. My gastroenterologist did an ERCP with biopsy and cancer was detected. I was referred to Mayo AZ to get a full evaluation. I did radiation and Chemo treatment at the same time; 2x a day (morning and evenings); 34 total sessions. Once they confirmed cancer had not spread to my lymph nodes, I was activated on the liver transplant list. I had the Whipple procedure and a liver transplant at the same time on 9/1. I’ve had a couple hiccups along the way, but nothing major. Still dealing with some discomfort/numbness around incision area hoping as time goes by it gets better. If anyone has any questions, feel free to reach out.

~Berta

@berta929, that's quite the surgery having both the Whipple procedure and liver transplant at the same time. How long were you in the operating room? Are you now considered cancer free?

Hi @colleenyoung ,
The surgery was scheduled for 12 hours but they finished in under 5 hours. It went very smooth no complications, thank god. At this point I am considered cancer free. Mayo has been amazing from the beginning and continue to be, as I'm still under their care since my case was a little out of the norm they wanted to watch me until my 1 year follow-up.

Please forgive me in advance for this lengthy response, but I don't know how else to explain.
Seven months ago in early January, I was an extremely healthy 79-year-old female, who walked two miles a day, was very active and felt great. I suddenly developed jaundice, lost my taste and smell, and had darkened urine. Those were my only symptoms. I saw my primary care doctor, who referred me to an endocrinologist. Blood work showed that I had a high level of bilirubin and a CA 19-9 level of 361. I was admitted to St. Dominic's hospital in Jackson, MS, where I had in this order, a sonogram, a CT scan with dye, and an MRI. It was determined that my bile ducts were blocked at their fork to my liver. I then had an endoscopy during which my bile ducts were cleared, and two temporary stents were placed. The scrapings obtained during the endoscopy were inconclusive for cancer, and I was referred to the oncology department at UMMC. A biopsy and further scrapings were obtained during a second endoscopy and were also inconclusive. Another CT with dye and another MRI were performed and a suspicious spot was seen on my liver with a couple of others near where the stents were placed. Another endoscopy with Spy Glass was performed, and two permanent stents were placed and further scrapings obtained, which again were inconclusive. A needle biopsy of the liver spot was scheduled and then cancelled when a sonogram showed no spot on my liver. By the end of April, CA 19-9 levels had decreased, but were still high. A laparoscopy was performed with no definitive findings. Over the next two months, I recovered, got my strength back, started walking, and again felt great. Two weeks ago, I had a thorough MRI of my abdomen area and my spine with no suspicious findings. New CA 19-9 numbers had dropped from the original 361 to 74. The oncologist suspects that I may have cholangiocarcinoma. He has asked me to consider having major surgery to remove parts of my bile ducts and half of my liver. He has explained the surgery and the extensive recovery in detail. I am now an active, 80-year-old, who still drives and is currently blessed to have no pain, so I am very hesitant to have this major surgery. I would like to hear of any alternatives to this surgery. I'm also concerned that surgery would be offered in the absence of any findings of malignant cancer cells. Any advice or insight would be greatly appreciated.

Willow7799, Have you gotten a second opinion? Is UMMC designated by the National Cancer Institute as a Comprehensive Cancer Center?

I'm a fit 69-year-old male diagnosed with distal (extrahepatic) cholangiocarcinoma in January 2024. I have completed ten infusions (gemcitabine/abraxine/cisplatin). Loss of hair and mild anemia were the only side effects.

I have completed two of 28 radiation/oral chemo (Xenoda) treatments with bile duct surgery with a Whipple Procedure as a back is scheduled at Mayo Rochester in October.

Research shows that surgery is the only possible cure. Surgery performed at a high-volume center by a high-volume surgeon has statistically better chances of recovery and survival.

Dan

Hello Dan. Thanks for sharing. UMMC (University of MS Medical Center) is a training center with doctors from around the world and a great oncology department, but I don't know if it's designated as a CCC. Need to check on that. I have a lot of confidence in my oncologist. He has told me that insurance won't cover chemo without a definite diagnosis of cancer. I've had multiple endoscopies to gather scrapings for testing, as well as multiple MRIs, but none were conclusive for cancer. My CA19-9 blood test for cancer markers was very high prior to my procedure to unblock my bile ducts. Since then, they have continued to drop and are now lower than the standard used for surgery. My oncologist met with the oncology board last week and shared my case. Their conclusion was that the earlier recommendation for surgery is off the table, and I am an atypical patient without the regular signs of cancer. They've now given me a three-month period to continue doing what I normally do, after which I will have further blood work, another MRI, and possibly another endoscopy for scrapings. I'm staying busy, walking every day, going to church, praying, and putting my fate in God's hands.
Thanks for the opportunity to share with someone!

Dear Willow7799 -- It took me a while to adjust mentally and emotionally to a sudden and significant change in my health. Hang in there! We are fortunate to have the benefits of 21st century medicine.

Dan

Dear Willow7799, It appears the closest comprehensive cancer centers are in Alabama (1) and Tennessee (2).
https://www.cancer.gov/research/infrastructure/cancer-centers/find/uabccc
https://www.cancer.gov/research/infrastructure/cancer-centers/find#Tennessee
Being at home and comfortable with your doctors is extremely important.

Dan

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.