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

@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.

By the way, I’ve discussed my mortality with God, so not really sure if I can be scared off so easily! Keep it coming brother!

There you are, was hoping I had not scared you off with my last post. Yes I
have been the optimistic one here as well. I did some reflection on
beneficial suffering, a topic you can Google. It's what you have described
here, the pain and anguish of anticipation brings you closer to God. I feel
blessed because I am able to still function with little pain after 16
chemo. The diagnosis is still scary but there seems to be many options I
read about so staying positive and taking the lead to get to mayo is part
of my optimism and belief I can get to remission and even a cure..thanks
for your response. Headed for a weekend retreat but will look for your
response upon my return

Hey Bill, it’s funny bcz God blessed me with being a very optimistic person. I’ve always tried to be thankful and appreciate things, but now I am even more more thankful and appreciative for even smaller things. I’ve known even at the sadness of my initial diagnosis that God was going to use this and I’ve tried to be ready and available. The only time I feel like I falter is when I’m in pain (post biopsy, super crazy muscle pain while taking the at home targeted therapy, etc). But you know, pain does something else…it really purifies you bcz you are so laser focused on it that there’s really nothing left except you & God. I mourn for people who don’t have the Lord. Can’t fathom going through this without knowing I have a purpose and life in heaven sonmeday.

Thanks your words are encouraging. I have given up on guessing the
timetable and got over myself in terms of fear over dying.

but am lucky my pain level has been low but that may change
Need to schedule time with friends and family
Building my spiritual self up is my top priority
Every year I attend a men's silent retreat in Minnesota for a 4 day weekend
on spiritual exercises of st Ignatius of loyola.
Jesuits are great teachers and I will focus on doing the work Journaling
and reflectiong but also have some one on one time with confessor and
counselors.

. I leave there Sunday night and start my appointments at mayo on Monday so
I will be prepared to continue this journey .

Thank you and stay in touch, I think we are good for each other.
I prayed a rosary for you tonight and will continue this at 730 each
evening. I find myself praying more for others now than ever before.
I will pray your pain is manageable and that each day you get stronger in
fighting this disease. Bless you and your husband
Bill