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

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

Jump to this post

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!

REPLY
@tball3748

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!

Jump to this post

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.

REPLY
@lberg

My name is Laura, and my children's father, & my ex of 20+ years just diagnosed a couple weeks ago with ADENOCARCINOMA, most consistent with CHOLANGIOCARCINOMA or upper GI primary. Going to Mayo-Rochester, MN on the 15th. Would like to hear anything about others experience , if any.

Jump to this post

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.

Shared files

thor (thor.pdf)

REPLY

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.

REPLY

@krishh Thank you for sharing your experiences!

REPLY
@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

What are your treatment options now?

REPLY

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

REPLY
@lvtexas

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

Jump to this post

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.

REPLY
@billdemarco

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.

Jump to this post

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.

REPLY

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.

REPLY
Please sign in or register to post a reply.