Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

Posted by egoodies @egoodies, Aug 14, 2023

Anyone currently battling bile duct cancer? I would love to speak to discuss your experiences. I was just recently diagnosed in June.

Interested in more discussions like this? Go to the Liver Cancer Support Group.

journey2025 | @journey2025 | Jan 24 8:17am

My husband has RHYJ schedule in March 2025

mscluppy | @mscluppy | Jan 25 8:07am

In reply to @joed787 "Diagnosed in April as in intrahepatic variety. Did three cycles of chemo/immunotherapy. Experienced remarkable size reduction..." + (show)

My husband was diagnosed with intrahepatic cholangiocarcina a couple months ago. They want him to do 2 months of chemo before thy look at surgery. They will be putting in a port in the next couple weeks. How often were your treatments? You said 3 cycles. Does that mean 3 weeks? We are also going through Mayo in Rochester. Any advise for us on ways to get thru the treatments? Did you have your surgery and how did that go? Thank you

denise134 | @denise134 | Jan 26 12:50pm

Just wondering how its been going with chemo and which one are you on

denise134 | @denise134 | Jan 26 12:55pm

In reply to @egoodies "My tumor is inside my bile duct. My symptoms began with jaundice and nausea. I have..." + (show)

Just saw this ftom 2023 and curious what’s happening since then. I had liver resection Sept 2024 and hate taking chemo especially since no spread but docs say microcellular possibly but already had to quit pill from side effects Capecitabine and now to start Gemcitabine IV Tuesday

denvergirl | @denvergirl | Jan 27 9:33am

In reply to @mscluppy "My husband was diagnosed with intrahepatic cholangiocarcina a couple months ago. They want him to do..." + (show)

@denvergirl - I too had intrahepatic cholangiocarcinoma surgery at Mayo in Rochester. I was so pleased with the entire surgical and oncology team. Robotic surgery went well as did the recovery.
The best to you.

mscluppy | @mscluppy | Jan 27 10:20am

In reply to @denvergirl "@Denvergirl - I too had intrahepatic cholangiocarcinoma surgery at Mayo in Rochester. I was so pleased..." + (show)

Thank you. Unfortunately because of the size of his spot they can't do robotic surgery. He will be having a port put in next week and then hopefully start chemo soon after. It's been a slow process or it seems that way to me. I am looking forward to meeting with the oncologist and getting a lot of questions answered. Thank you for your response.

denvergirl | @denvergirl | Jan 28 9:19am

In reply to @mscluppy "Thank you. Unfortunately because of the size of his spot they can't do robotic surgery. He..." + (show)

The waiting and the unknown are difficult. I had to wait about 3 weeks for surgery. But you are in good hands at Mayo. I hope the chemo goes well.

mscluppy | @mscluppy | Jan 28 9:53am

In reply to @denvergirl "The waiting and the unknown are difficult. I had to wait about 3 weeks for surgery...." + (show)

Thank you.

Colleen Young, Connect Director | @colleenyoung | Feb 5 4:25pm

In reply to @journey2025 "My husband has RHYJ schedule in March 2025" + (show)

Hi @journey2025, are you referring to Roux-en-Y hepaticojejunostomy (RYHJ), a surgical procedure that creates a new route for bile to flow from the liver to the small intestine?

Has your husband been diagnosed with bile duct cancer? How is he doing? How are YOU doing?

demooretucson | @demooretucson | Feb 9 9:45am

In reply to @colleenyoung "Hi @journey2025, are you referring to Roux-en-Y hepaticojejunostomy (RYHJ), a surgical procedure that creates a new..." + (show)

Dear @journey2025

In October 2024, I had a radical bile duct resection that included a Roux-en-Y hepaticojejunostomy and other surgical procedures at Mayo Rochester for my cholangiocarcinoma. My family and I could not be more pleased with the surgery, recovery, and outcome.

Dan

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