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 | Apr 15 5:52am

In reply to @denvergirl "My very best wishes for his recovery." + (show)

Thank you 🙏💛

Colleen Young, Connect Director | @colleenyoung | Apr 21 9:22pm

In reply to @lynnliver "Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last..." + (show)

@lynnliver, I'm sorry to hear that another primary cancer has been found. If you would like to get a second opinion at Mayo Clinic, here's how to get started: http://mayocl.in/1mtmR63

When are you scheduled to start chemo?

sunflower88 | @sunflower88 | 3 days ago

In reply to @lynnliver "Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last..." + (show)

Hi Lynn,
I would highly recommend Mayo in Jacksonville, FL.

My husband was diagnosed last May, 2024 with bile duct cancer. Caught early. He had a malignant 6 cm lesion on left lobe of liver. Mayo did 2 biopsies, one on the lesion and one on the middle/right side of liver. Diagnosed with HCC - Heptocellular Cancer Stage 1/Grade 2, the biopsy for his liver in the middle/right side showed the rest of his liver is good. He has a team of doctors/surgeons and PA’s. He had da Vinca robotic surgery on 6/24, 4 small incisions across the top of his abdomen and a larger incision in his belly button which is where the robotic arm went in, snipped the left section of his liver and pulled it out. The surgery was on a Monday and his was discharged from Mayo Clinic/hospital 48 hours later. In August, 2024 he started taking oral chemo capecitabine 2000 mg twice a day for 6 months. HCC cancer is rare and has a high recurrence rate. So far so good. Stopped chemo after 6 months, now on Mayo’s schedule every 3 months for MRI of abdomen, CT scan of chest, blood work to include tumor markers and meets with 1 or 2 PA’s after testing is complete to review results. He just had all of this done 10 days ago. No recurrence, and will continue with Mayo for a total of 5 years.

Mayo is wonderful, doctors/surgeons, PA’s, nurses, everyone is helpful. I cannot say enough about Mayo. You should definitely go there.

Good luck.
Linda

denvergirl | @denvergirl | 2 days ago

In reply to @sunflower88 "Hi Lynn, I would highly recommend Mayo in Jacksonville, FL. My husband was diagnosed last May,..." + (show)

Linda. I have a very similar story. Similar surgery with clear margins. I went to Mayo Rochester and was so pleased with my team there.
I too am taking capecitabine 3500 mg each day. Did your husband experience the hand and foot syndrome, and if so how did he deal with it? I use Udderly Smooth cream, but my hands and feet are quite dry and cracking and sore.
Thanks,
Mary "denvergirl"

sunflower88 | @sunflower88 | 1 day ago

In reply to @denvergirl "Linda. I have a very similar story. Similar surgery with clear margins. I went to Mayo..." + (show)

Hi Mary,

He experienced several symptoms, both feet peeled and he was prescribed a steroid cream to use n which is Triamcinoline Acetonide Cream, USP that helped. His finger tips all peeled and bad cracks in between fingers. The cream helped but took awhile to heal. He had to stop the chemo for a month due to severe diarrhea. Had 3 potassium IV’s during the month off from chemo, when he resumed chemo it was reduced to 1500 mg twice a day. But, it was worth it. No recurrence of cancer.

Mayo is awesome.

Thank you,
Linda