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Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

Posted by egoodies @egoodies, Aug 14, 2023

Anyone currently battling bile duct cancer? I would love to speak to discuss your experiences. I was just recently diagnosed in June.

Interested in more discussions like this? Go to the Liver Cancer Support Group.

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sunflower88 | @sunflower88 | Jun 14, 2025
In reply to @denvergirl "I had the same hand and foot symptoms. I skipped a cycle and the symptoms resolved..." + (show)
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I had the same hand and foot symptoms. I skipped a cycle and the symptoms resolved nicely.
Udderly Smooth cream is very good too.
Denver girl

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That is good that it worked for you.😁

He has been off chemo since the end of February and cancer free. 🙏🙏

He will remain a patient at Mayo for 4 years. Every 3 months he has CT Chest c-ray, MRI and blood work. Bile cancer has a high recurrence and cancer can come back elsewhere.

June 24, 2025 will be a year since his liver resection surgery.

Hope you are doing good.

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djjnurse | @djjnurse | Jan 25 1:48pm
In reply to @colleenyoung "@djjnurse, how are you doing on chemo? How are doing today?" + (show)
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@djjnurse, how are you doing on chemo? How are doing today?

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@colleenyoung
I only had chemo for 3 months as my port became infected. A new lesion grew on left lower lobe during chemo. They got 4 good tissue samples and all were negative for cancer, along with all the brushings they had previously done, negative for cancer. But due to the fact my bile duct is obstructed along with my right portal vein and scarred right liver lobe I have to have stents replaced every ten weeks. I have developed absesses where I have two jp drains. At 66 now I do not know what options if any are available as they say I am not a candidate for surgery. Any suggestions would be helpful. Deb Jennings RN

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egoodies | @egoodies | Jan 25 7:12pm
In reply to @djjnurse "@colleenyoung I only had chemo for 3 months as my port became infected. A new lesion..." + (show)
Profile picture for djjnurse @djjnurse

@colleenyoung
I only had chemo for 3 months as my port became infected. A new lesion grew on left lower lobe during chemo. They got 4 good tissue samples and all were negative for cancer, along with all the brushings they had previously done, negative for cancer. But due to the fact my bile duct is obstructed along with my right portal vein and scarred right liver lobe I have to have stents replaced every ten weeks. I have developed absesses where I have two jp drains. At 66 now I do not know what options if any are available as they say I am not a candidate for surgery. Any suggestions would be helpful. Deb Jennings RN

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@djjnurse my mother went through this issue with the stents every 10 weeks.. so annoying to have done and they frequently got infected. Her samples also never tested positive for cancer, but they told her she had bile duct cancer. Her labs did test positive for cancer marker. Does yours? Why are you not a candidate for surgery? Did you get a second opinion? MSK has a few surgeons specializing in bile duct cancers.

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demooretucson | @demooretucson | Feb 1 10:20am
In reply to @djjnurse "@colleenyoung I only had chemo for 3 months as my port became infected. A new lesion..." + (show)
Profile picture for djjnurse @djjnurse

@colleenyoung
I only had chemo for 3 months as my port became infected. A new lesion grew on left lower lobe during chemo. They got 4 good tissue samples and all were negative for cancer, along with all the brushings they had previously done, negative for cancer. But due to the fact my bile duct is obstructed along with my right portal vein and scarred right liver lobe I have to have stents replaced every ten weeks. I have developed absesses where I have two jp drains. At 66 now I do not know what options if any are available as they say I am not a candidate for surgery. Any suggestions would be helpful. Deb Jennings RN

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@djjnurse

Dear Nurse Deb --

From this distance, a second opinion from a high-volume hepatobiliary-pancreatic surgeon and team sounds in order. I cannot say enough good things about Mark Truty and his team at Mayo Rochester.

Dan

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djjnurse | @djjnurse | Feb 2 12:13pm
In reply to @egoodies "@djjnurse my mother went through this issue with the stents every 10 weeks.. so annoying to..." + (show)
Profile picture for egoodies @egoodies

@djjnurse my mother went through this issue with the stents every 10 weeks.. so annoying to have done and they frequently got infected. Her samples also never tested positive for cancer, but they told her she had bile duct cancer. Her labs did test positive for cancer marker. Does yours? Why are you not a candidate for surgery? Did you get a second opinion? MSK has a few surgeons specializing in bile duct cancers.

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my CA19-9 also vacilates between 144=241 supposably cancer marker but even my fluroscopy tested negative for cancer. I have alot of inflammation and i had read that inflammation can elevate the markers, so my SO is not convinced I really have cancer; After two years it has NoT METASTISISED any place either. My stents have never been infected altbough I do have a bile leak that drains now into a JP drain. Im tired of the never ending stent changes, CT's and doctors appointments let alone an inflammed stomach which is not asites. Thank you for reaching out. Deb RN

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ginnyk | @ginnyk | Feb 3 12:26pm
In reply to @demooretucson "@djjnurse Dear Nurse Deb -- From this distance, a second opinion from a high-volume hepatobiliary-pancreatic surgeon..." + (show)
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@djjnurse

Dear Nurse Deb --

From this distance, a second opinion from a high-volume hepatobiliary-pancreatic surgeon and team sounds in order. I cannot say enough good things about Mark Truty and his team at Mayo Rochester.

Dan

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@demooretucson
I think Mayo Rochester is the place to go. I had Dr. Starlinger’s team and they were also excellent. I bet they will eliminate the mystery.

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denvergirl | @denvergirl | Feb 4 2:57pm

I too very much recommend Dr Starlinger at Mayo Rochester. Excellent team.
denvergirl

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firstbess | @firstbess | Mar 20 7:32pm
In reply to @djjnurse "I was also diagnosed with hilar cholangiocarcinoma in June 2024. In 9 months I still have..." + (show)
Profile picture for djjnurse @djjnurse

I was also diagnosed with hilar cholangiocarcinoma in June 2024. In 9 months I still have no positive test showing cancer and yet I had 7 ECRP's with brushings for biopsy, 5 CT scans with and without dye, 2 MRCPs, ENDUS, Colonoscopy, left and right lower lobe external biliary drains and exchanges over the past 9 months... all testing comes back negative for CANCER. I went from 135# down to 90# in a matter of a few months. As a retired RN, at 65 yrs I am sad to know this is my journey at this time. Transplant and resection are not an option and they wish to start me on chemo. After the first presumptive diagnosis from one hospital, I checked with two others, only to come up with the same conclusions. Since I understand what my short future holds for me, I am getting my affairs in order and have decided to donate my body to science. Maybe they can find useful information with the next person whom is dx with bile duct cancer / hilar cholangiocarcinoma.
Deb RN

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@djjnurse my condition is the same as yours, all pathology has came back benign. What course of treatment does your team
recommend?

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mschwant | @mschwant | Apr 11 10:32am

My 85 year old husband is being treated for cholangiocarcinoma with radiation and chemo. Surgery is not an option we are told. Fatigue big factor. Expecting 15 treatments if he can make it.
Not sure how much time we are buying, but interested in averages.

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Turkey, Volunteer Mentor | @tomrennie | Apr 13 8:25am
In reply to @mschwant "My 85 year old husband is being treated for cholangiocarcinoma with radiation and chemo. Surgery is..." + (show)
Profile picture for mschwant @mschwant

My 85 year old husband is being treated for cholangiocarcinoma with radiation and chemo. Surgery is not an option we are told. Fatigue big factor. Expecting 15 treatments if he can make it.
Not sure how much time we are buying, but interested in averages.

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@mschwant Sorry to hear about your husband's diagnosis and treatment. It is hard to put averages on time. It mostly depends on how early it was detected and if a treatment works. Has it spread at all? What chemo is he taking? Is he experiencing any other symptoms?

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