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

Hassan, wishing you well and hoping no recurrence.

Take care.

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

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

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.

Welcome to Connect. We look forward to getting to know more about you.
I'd like to first introduce you to Teresa @hopeful33250. While Teresa doesn't have bile duct cancer, she has had 3 occurrences of neuroendocrine tumors and knows what it is like to get repeated diagnoses and treatments. While wait for other people with bile duct cancer experience, I'd like to get to know a bit more about you. What treatments have you had in the past and what treatment are you currently receiving? How are you doing with the treatment and its side effects?

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!

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!