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Cholangiocarcinoma - Mayo Clinic Rochester. Are there other patients?

Posted by tinkerbel @tinkerbel, Oct 16, 2024

I was diagnosed in the last few days with cholangiocarcinoma of the liver and I do not fit the protocol of treatments + transplantation. I would love to hear and share with other patients who are here

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

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neadkins | @neadkins | Feb 8 7:21am

Thanks for your update. I too had my left lobe removed end of April 2025, I am 70. I was amazed at how quickly it all went. Had Y90 in November 2024 first check in February showed target was successful but new tumors were now present, so with the options I was offered one was hepatectomy. Which I chose this was done as a robotic surgery. I went in that morning surgery was successful and one of my transplant doctors assisted with this. I went home next day in amazement and followed doctors orders. After first post visit (2 weeks after) showed good progress and follow up MRI's have all been stable. I have been moved off active transplant list to inactive with possible removal soon. Draw back is I still have an HCC in my right lope but it is stable and appears benign. Have next MRI end of this month and see transplant in June to determine path forward. But feeling great with no adverse effects.

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ginnyk | @ginnyk | Feb 8 5:01pm
In reply to @nancyh1919 "I am more than two years after surgery. It took a long time to heal. I..." + (show)
Profile picture for nancyh1919 @nancyh1919

I am more than two years after surgery. It took a long time to heal. I finally feel good. The pale poop was the last symptom to go about 3 months ago. I am 75. So I had the surgery to remove the left lobe of my liver. Gone and in the trash. No chemo or radiation.

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@nancyh1919

That’s very good news Nancy. I just had my liver resection Dec. 8 (also in the trash and far far away) and have been told I need 6 months of chemo about to start this week. I’m curious about why did you skipped chemo?

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denvergirl | @denvergirl | Feb 9 8:05pm
In reply to @tomrennie "@denvergirl Do you know if the MTAP gene loss occurs in other types of cancer? For..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@denvergirl Do you know if the MTAP gene loss occurs in other types of cancer? For example, Capecitabine is also used to treat skin cancer squamous cell carcinomas. Thank you.

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@tomrennie
Yes, I believe that it does occur in other cancers - pancreatic cancer for example.
denvergirl

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Turkey, Volunteer Mentor | @tomrennie | Feb 10 10:02am
In reply to @denvergirl "@tomrennie Yes, I believe that it does occur in other cancers - pancreatic cancer for example...." + (show)
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@tomrennie
Yes, I believe that it does occur in other cancers - pancreatic cancer for example.
denvergirl

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@denvergirl Thank you. I have pancreatic cancer that spread to my liver. I will do some homework.

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denvergirl | @denvergirl | Feb 10 8:49pm
In reply to @tomrennie "@denvergirl Thank you. I have pancreatic cancer that spread to my liver. I will do some..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@denvergirl Thank you. I have pancreatic cancer that spread to my liver. I will do some homework.

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@tomrennie
You will have to have the tumor tissue genetically tested for mutations.
Good luck!
denvergirl

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Turkey, Volunteer Mentor | @tomrennie | Feb 11 7:01am
In reply to @denvergirl "@tomrennie You will have to have the tumor tissue genetically tested for mutations. Good luck! denvergirl" + (show)
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@tomrennie
You will have to have the tumor tissue genetically tested for mutations.
Good luck!
denvergirl

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@denvergirl I am good there. It has been tested for mutations. I have none. Capecitabine has also been working for 3.5 years. But, it is definitely something to be aware of. Thanks.

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denvergirl | @denvergirl | Feb 11 7:43pm

I am very glad that the Capecitabine is working for you.
denvergirl

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denvergirl | @denvergirl | 5 hours ago
In reply to @sunflower88 "Good morning Tinkerbel, my spouse was diagnosed with bile duct cancer and had a 6.5cm malignant..." + (show)
Profile picture for sunflower88 @sunflower88

Good morning Tinkerbel, my spouse was diagnosed with bile duct cancer and had a 6.5cm malignant tumor on his liver. It was caught early but cholangiocarcinoma is aggressive and rare. He had surgery on 6/24/24 for liver resection where the left lobe of his liver was removed by the surgeons and da Vinci robot and pulled out thru his naval. Surgeons did not see the cancer anywhere else and great margins. He started oral chemo capecitabine in August, 2024 twice a day 2000 mg each dose. Plan of treatment for chemo 2 weeks on followed by 1 week off of chemo. Week 7, severe diarrhea 8-10 times a day for 3 weeks and he lost 18 lbs. I had to take him to Mayo three times in 2 weeks for IV hydration with potassium. He goes next week for his bi-monthly CT Chest, MRI abdomen, lab work and visit with PA. He stopped taking chemo on 10/2 due to the diarrhea and Mayo wants his guts to heal and will go back on chemo but dosage will be reduced. The cancer was caught early due to symptoms he felt and determined Stage 1B/Grade 1. His 5 year prognosis is 60/40.

I just hope and pray the cancer does not return and he does well on a lower dosage of chemo. Mayo’s plan of treatment for the first 2 years is lab work every 3 weeks and bi-monthly CT Chest and MRI abdomen. The chemo is for 6 months, he also has another symptom where the bottom of his feet are peeling and experiences pain and swelling on his fingers. This is also a side effect from chemo for hand & feet peeling.

What has Mayo planned for you?

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@sunflower88
The best thing that I found for Hand and Foot Syndrome is Udderly Smooth Hand and Foot Cream.
@denvergirl

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