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.

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)

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

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, 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?

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)

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!

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)

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

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 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?

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

reddino | @reddino | Sep 27, 2022

In reply to @reddino "I have recently started an immunotherapy treatment as radiation and chem was not effective." + (show)

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

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)

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

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

Thanks.

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)

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

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