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

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

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, 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?

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

I started a year ago on Gem/Cis, then they switched me to Pemazyre for a few months which shrunk my tumor until muscle pain became too overwhelming. Back to Gem/Cis added Abraxane with slight increase, then Gem/Cis w/Imfinzi (immunotherapy) with slight decrease in tumor. Now My white blood count (WBC) is tanking so Gem/Cis alone w/prednisone and staying quarantined until my numbers go back up. It’s a roller coaster ride for sure! Don’t get discouraged. Keep looking for your next treatment. It’s not over.

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.

They still are not sure. The gallbladder walls are thickening so they suspect it may be where the cancer is coming from. On gem sis since November, Seems to slow the growth of lymph node cancer but switch me to folfoxin August, a bit tougher but hope to shrink the tumors down and then talk about radiation. They said if they remove the gallbladder in 70 percent of cases cancer returns so they are not pursuing that option.

@billdemarco Bill : was your gallbladder the culprit? Did it get removed? How are you now?

What are your treatment options now?

@krishh Thank you for sharing your experiences!