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.

denvergirl | @denvergirl | Feb 11 7:43pm

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

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)

@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.

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)

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

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)

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

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)

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

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)

@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?

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.

nancyh1919 | @nancyh1919 | Feb 8 3:19am

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.

Turkey, Volunteer Mentor | @tomrennie | Jan 28 9:44am

In reply to @denvergirl "@tomrennie The MTAP gene loss occurs in about 16% of bile duct cancer cases. Luckily there..." + (show)

@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.

denvergirl | @denvergirl | Jan 27 8:15pm

In reply to @tomrennie "@denvergirl That is pretty rare from my limited understanding about it. Is that correct? What unique..." + (show)

@tomrennie

The MTAP gene loss occurs in about 16% of bile duct cancer cases.
Luckily there are studies that do address this gene loss.
I hope to be a part of the Bristol-Meyers-Squibb study.
denvergirl