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

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!

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.

just returned from Mayo, excellent help, diagnosis for the past 7 months has been cancer of the biliary tract unspecified. after 90 minutes in the MRI tube it became clear that it was the gall bladder making all the noise. doctor and advanced practice nurse spent 2.5 hours with me and my wife going over results and making a good plan for the next year. Part of the plan includes a chemo holiday to see what happens without chemo for a couple months . the good news is cancer has not grown and lymph nodes in the base abdomen are thought be dead. felt it was top notch service and felt evert so much hopeful now that I have several doctors offering our doc advice.

came back from a weekend retreat where I had some discussions with the Boss also and although my healing may not be what he has in mind certainly discussed "how do you want to be remembered ?" all good stuff ....
But my anemia caught up with me at the end and got sick so had to be carted off .I am OK now, food poisoning or something which triggered a gut wrenching for several hours but going about my business today.
Start at Mayo tomorrow so wish me luck.