1. < Liver Cancer

Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Posted by krishh @krishh, Jul 15, 2017

I'm on my fourth line of treatment. What treatments are others receiving for this? Thanks ~

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

reddino | @reddino | Sep 30, 2022
In reply to @lvtexas "@reddino how was the genomic testing done? From tissue or blood sample? Thanks." + (show)
@lvtexas

@reddino how was the genomic testing done? From tissue or blood sample?

Thanks.

Jump to this post

It was performed on tissue.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2022
In reply to @billdemarco "@reddino I did not get a copy of what you had said about your cancer" + (show)
@billdemarco

@reddino
I did not get a copy of what you had said about your cancer

Jump to this post

Bill, here's the link to @reddino's first post describing their diagnosis https://connect.mayoclinic.org/comment/741191/

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lvtexas | @lvtexas | Sep 29, 2022
In reply to @reddino "My Whipple was performed at the University of Colorado on April 14, 2021. I have genomic..." + (show)
@reddino

My Whipple was performed at the University of Colorado on April 14, 2021.
I have genomic testing done.

Jump to this post

@reddino how was the genomic testing done? From tissue or blood sample?

Thanks.

REPLY
1 reply
billdemarco | @billdemarco | Sep 28, 2022
In reply to @colleenyoung "@reddino, that's tough news to get that the cancer has spread. @billdemarco and @tball3748 can share..." + (show)
@colleenyoung

@reddino, that's tough news to get that the cancer has spread. @billdemarco and @tball3748 can share their experiences with you.

Reddino, have you started chemo? What is the treatment plan?

Jump to this post

@reddino
I did not get a copy of what you had said about your cancer

REPLY
1 reply
reddino | @reddino | Sep 27, 2022
In reply to @reddino "I have recently started an immunotherapy treatment as radiation and chem was not effective." + (show)
@reddino

I have recently started an immunotherapy treatment as radiation and chem was not effective.

Jump to this post

My Whipple was performed at the University of Colorado on April 14, 2021.
I have genomic testing done.

REPLY
1 reply
lvtexas | @lvtexas | Sep 27, 2022
In reply to @billdemarco "nice to hear from you, still had some growth of tumors in the lymph nodes but..." + (show)
@billdemarco

nice to hear from you, still had some growth of tumors in the lymph nodes but NO NEW CANCWER forming so Cis Gen did what it was supposed to do.
Now MAYO moved me up to folfox, a bit tougher but go back for scans in December and see if that's going to continue or do they do some radiation.
Got some time off in August and was off chemo for a week fishing up north with the grandkids

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@billdemarco Great fishing photo! I’m sure all of you had a blast! What’s the next adventure that you have planned?

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lvtexas | @lvtexas | Sep 27, 2022
In reply to @reddino "I have bile cancer that originated in the ducts of the gall bladder. I have had..." + (show)
@reddino

I have bile cancer that originated in the ducts of the gall bladder. I have had a Whipple surgery to remove the original tumor. Unfortunately, the cancer has returned and spread to the liver.

Jump to this post

@reddino When was your Whipple procedure and was it done at Mayo? I’m sorry to hear that the cancer has returned. Did you have genomic testing done?

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reddino | @reddino | Sep 26, 2022
In reply to @colleenyoung "@reddino, that's tough news to get that the cancer has spread. @billdemarco and @tball3748 can share..." + (show)
@colleenyoung

@reddino, that's tough news to get that the cancer has spread. @billdemarco and @tball3748 can share their experiences with you.

Reddino, have you started chemo? What is the treatment plan?

Jump to this post

I have recently started an immunotherapy treatment as radiation and chem was not effective.

REPLY
2 replies
tball3748 | @tball3748 | Sep 26, 2022
In reply to @colleenyoung "@reddino, that's tough news to get that the cancer has spread. @billdemarco and @tball3748 can share..." + (show)
@colleenyoung

@reddino, that's tough news to get that the cancer has spread. @billdemarco and @tball3748 can share their experiences with you.

Reddino, have you started chemo? What is the treatment plan?

Jump to this post

I haven’t had any spread nor Whipple, so I can’t comment on that. I do know to be your own advocate, ask lots of questions, research, get 2nd opinions and reach out to groups like the Cholangiocarcinoma Facebook patient groups for info. I’ve been on chemo for a year, had the genetics test and treated well w/FGFR2 mutation drug Pemazyre until side effects trumped my progress. Keep your thoughts positive, continue to try new meds. We can fight this beast!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 25, 2022
In reply to @reddino "I have bile cancer that originated in the ducts of the gall bladder. I have had..." + (show)
@reddino

I have bile cancer that originated in the ducts of the gall bladder. I have had a Whipple surgery to remove the original tumor. Unfortunately, the cancer has returned and spread to the liver.

Jump to this post

@reddino, that's tough news to get that the cancer has spread. @billdemarco and @tball3748 can share their experiences with you.

Reddino, have you started chemo? What is the treatment plan?

REPLY
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