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 ~

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billdemarco | @billdemarco | Sep 15, 2022
In reply to @tball3748 "Hey Bill, how go things? Still hanging on here. Had 2 slightly larger scans, then started..." + (show)
@tball3748

Hey Bill, how go things? Still hanging on here. Had 2 slightly larger scans, then started the immunotherapy and saw slight decrease. Now white blood cells tanking so have been quarantined at home until they go back up. Backed down to chemo only until WBC up.

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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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1 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.

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@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?

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3 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!

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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.

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2 replies
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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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

Jump to this post

@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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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.

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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

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1 reply
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.

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

Thanks.

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1 reply
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

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

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