1. < Liver Cancer
Profile picture for tinkerbel

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.

Profile picture for denvergirl
denvergirl | @denvergirl | 5 days ago
In reply to @ginnyk "@denvergirl Hi, I also had resection. surgery with Dr. Starlinger, clear margins, nothing elsewhere same as..." + (show)
Profile picture for ginnyk @ginnyk

@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!

Jump to this post

@ginnyk
The trial will be in Denver with the Sarah Cannon Research Center. They currently have 3 trials that address my mutation. And they have seen good results with them. Sarah Cannon is nation-wide.
Thank you for the good wishes.
denvergirl

REPLY
Profile picture for denvergirl
denvergirl | @denvergirl | 5 days ago
In reply to @claudia0811 "@denvergirl Sorry you have been going through all this. Did you also do the cisplatin, gemcitabine..." + (show)
Profile picture for claudia0811 @claudia0811

@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 🙏🏼🙏🏼🙏🏼

Jump to this post

@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

REPLY
2 replies
Profile picture for Turkey, Volunteer Mentor
Mentor
Turkey, Volunteer Mentor | @tomrennie | 5 days ago
In reply to @denvergirl "@claudia0811 Thank you for your reply. Mayo did not recommend chemo pre-op. I did that chemo..." + (show)
Profile picture for denvergirl @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

Jump to this post

@denvergirl What gene mutation do you have? Thanks.

REPLY
1 reply
Profile picture for claudia0811
claudia0811 | @claudia0811 | 3 days ago
In reply to @denvergirl "@claudia0811 Thank you for your reply. Mayo did not recommend chemo pre-op. I did that chemo..." + (show)
Profile picture for denvergirl @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

Jump to this post

@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!

REPLY
1 reply
Profile picture for denvergirl
denvergirl | @denvergirl | 3 days ago
In reply to @claudia0811 "@denvergirl You are on my prayer list. My oncologist from Vanderbuilt said the targeted treatments are..." + (show)
Profile picture for claudia0811 @claudia0811

@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!

Jump to this post

@claudia0811
Thank you for the kind words. I do not know yet which drug I will be taking. And, yes, I do know which drugs are targeted for my mutation.
Hopefully the lung nodules are nothing to worry about.
denvergirl

REPLY
Profile picture for denvergirl
denvergirl | @denvergirl | 3 days ago
In reply to @tomrennie "@denvergirl What gene mutation do you have? Thanks." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@denvergirl What gene mutation do you have? Thanks.

Jump to this post

@tomrennie

My mutation is the loss of the MTAP gene.

denvergirl

REPLY
1 reply
Profile picture for Turkey, Volunteer Mentor
Mentor
Turkey, Volunteer Mentor | @tomrennie | 2 days ago
In reply to @denvergirl "@tomrennie My mutation is the loss of the MTAP gene. denvergirl" + (show)
Profile picture for denvergirl @denvergirl

@tomrennie

My mutation is the loss of the MTAP gene.

denvergirl

Jump to this post

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

REPLY
1 reply
Profile picture for denvergirl
denvergirl | @denvergirl | 18 hours ago
In reply to @tomrennie "@denvergirl That is pretty rare from my limited understanding about it. Is that correct? What unique..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

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

Jump to this post

@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

REPLY
1 reply
Profile picture for Turkey, Volunteer Mentor
Mentor
Turkey, Volunteer Mentor | @tomrennie | 5 hours ago
In reply to @denvergirl "@tomrennie The MTAP gene loss occurs in about 16% of bile duct cancer cases. Luckily there..." + (show)
Profile picture for denvergirl @denvergirl

@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

Jump to this post

@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.

REPLY
View MoreView Less
Please sign in or register to post a reply.