Cholangiocarcinoma - Mayo Clinic Rochester. Are there other patients?

@denvergirl That is pretty rare from my limited understanding about it. Is that correct? What unique challenges does it present for you?

@tomrennie

My mutation is the loss of the MTAP gene.

denvergirl

@denvergirl What gene mutation do you have? Thanks.

@denvergirl
You are on my prayer list. My oncologist from Vanderbuilt said the targeted treatments are very good.
Do you know which targeted treatments will work for you according to your genetic testing.
My dr at Vanderbuilt said I will be on Futibatnib if the cancer comes back. Not sure if it would be the same cancer and treatment after I find out about the nodules in my lungs. I will have to have a biopsy that I guess I’ll see.
Hang in there and be strong!

@claudia0811
Thank you for your reply. Mayo did not recommend chemo pre-op. I did that chemo regimen after Capecitabine, but it was not very effective.
Yes, I have a copy of the genetic testing and the gene mutation is identified. And there are 3 studies that address this mutation. And I hope to start on one of them soon.
I am glad that you are feeling good too.
denvergirl

@claudia0811
Thank you for your reply. Mayo did not recommend chemo pre-op. I did that chemo regimen after Capecitabine, but it was not very effective.
Yes, I have a copy of the genetic testing and the gene mutation is identified. And there are 3 studies that address this mutation. And I hope to start on one of them soon.
I am glad that you are feeling good too.
denvergirl

@denvergirl
Sorry you have been going through all this. Did you also do the cisplatin, gemcitabine and Durvalumab before your surgery for 6 months? I did. Do you have a copy of the report on the genetic testing? If so, did they find a targeted treatment for you?
Glad you r feeling good. Me too but Not as I felt before all this 🙏🏼🙏🏼🙏🏼

@denvergirl

Hi,
I also had resection. surgery with Dr. Starlinger, clear margins, nothing elsewhere same as you. I’m about to start the post surgery chemo but was told if it returns I also can join a clinical trial so please let us know how that goes. Is the trial at Mayo?
I hope the trial gets it all!

denvergirl here - I too am interested in hearing from other people with cholangiocarcinoma. I was diagnosed in Aug 2024 and also had surgery by Dr Patrick Starlinger at Mayo. Surgery was successful with clear margins. However, after 6 months of Capecitabine, the cancer returned. I then did infusions with cisplatin and gemcitabine and Durvalumab. This regimen was also not effective, so I hope to start on a trial med soon.
Does anyone else have this experience, and if so, how did you proceed? The good news is that I feel fine.
denvergirl.

denvergirl here - I too am interested in hearing from other people with cholangiocarcinoma. I was diagnosed in Aug 2024 and also had surgery by Dr Patrick Starlinger at Mayo. Surgery was successful with clear margins. However, after 6 months of Capecitabine, the cancer returned. I then did infusions with cisplatin and gemcitabine and Durvalumab. This regimen was also not effective, so I hope to start on a trial med soon.
Does anyone else have this experience, and if so, how did you proceed? The good news is that I feel fine.
denvergirl.