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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.

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advocate4her | @advocate4her | Sep 29, 2025

My wife had jaundice eyes and skin and severe itching early in the process prior to diagnosis

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demooretucson | @demooretucson | Sep 28, 2025

I had three symptoms -- two were not recognized. The one I noticed and paid attention to was dark urine (coca-cola color) for more than three days. Went to the emergency room at Tucson Medical Center, where they performed an ERCP (Endoscopic Retrograde Cholangiopancreatography) that revealed a mass in my bile duct, which required a stent. The biopsy was pancreatic distal adenocarcinoma. The two symptoms I did not recognize was jaundice and light colored stools.

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jamie10 | @jamie10 | Sep 28, 2025

What were your first symptoms?

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denvergirl | @denvergirl | Mar 12, 2025
In reply to @billdemarco "just returned from Mayo, excellent help, diagnosis for the past 7 months has been cancer of..." + (show)
Profile picture for billdemarco @billdemarco

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.

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@denvergirl - I too was diagnosed with bile duct cancer. Fortunately it was found early and by accident. I did go to Mayo in Rochester, and I cannot recommend them highly enough. My Purple Team was excellent. And, yes, the are a national leader in this disease.

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Colleen Young, Connect Director | @colleenyoung | Mar 1, 2025
In reply to @angelziggy "Afternoon, My husband and I just found out that he has Cholangio carcinoma. He was jaundice,..." + (show)
Profile picture for angelziggy @angelziggy

Afternoon, My husband and I just found out that he has Cholangio carcinoma. He was jaundice, losing weight, fatigue so we went to the er. He has had the CT scan and MRI already. mass in liver that went into the bile duct. tomorrow is the biopsy and if they can they will place a stent in. trying to find information anything

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@angelziggy, how did the biopsy and the stent placement go? How is your husband doing? And YOU?

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demooretucson | @demooretucson | Feb 28, 2025
In reply to @elizabettagrace "Dan, My husband has the same diagnosis as you - but just recently. How are you..." + (show)
Profile picture for elizabettagrace @elizabettagrace

Dan,

My husband has the same diagnosis as you - but just recently. How are you doing? Did you have surgery? Chemo? Join any clinical trials? Ar you at Mayo Scottsdale? Elizabetta

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Dear Elizabetta -- I was diagnosed in January 2024 with distal cholangiocarcinoma. Treatments included 10 biweekly chemo infusions followed by 28 daily (Monday-Friday) radiation complemented with oral chemo at the University of Arizona Cancer Center in Tucson with radical bile duct resection and reattachment surgery by Dr. Mark Truty and his team at Mayo Rochester in October 2024. A Whipple Procedure was a possibility but not necessary. The pathology report showed "no residual carcinoma."

Dan

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elizabettagrace | @elizabettagrace | Feb 28, 2025
In reply to @carmita "For the love of God have faith . I have bile duct stage 4,I'm in my..." + (show)
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For the love of God have faith . I have bile duct stage 4,I'm in my 2nd year and one month doing grate,stable with tibsovo cancer pills.
If you don't mind
I would be praying for you.
Many blessings for healing.

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Did you have surgery, or did you go directly to Tibsovo. Any metastases?

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elizabettagrace | @elizabettagrace | Feb 28, 2025
In reply to @angelziggy "Afternoon, My husband and I just found out that he has Cholangio carcinoma. He was jaundice,..." + (show)
Profile picture for angelziggy @angelziggy

Afternoon, My husband and I just found out that he has Cholangio carcinoma. He was jaundice, losing weight, fatigue so we went to the er. He has had the CT scan and MRI already. mass in liver that went into the bile duct. tomorrow is the biopsy and if they can they will place a stent in. trying to find information anything

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Any update? My husband was diagnosed with extrahepatic cholangiocarcinoma a month ago. Interested in hearing what treatments you have had? Elizabetta

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elizabettagrace | @elizabettagrace | Feb 28, 2025
In reply to @demooretucson "Dear Angelziggy -- I was diagnosed with cholangiocarcinoma in January 2024 under similar circumstances as your..." + (show)
Profile picture for demooretucson @demooretucson

Dear Angelziggy -- I was diagnosed with cholangiocarcinoma in January 2024 under similar circumstances as your husband. A stent was placed, and I was referred to a surgical oncologist and oncologist. Seek initial opinions and possible treatments at a comprehensive cancer center if possible. In the US, several centers of excellence in treating cholangiocarcinoma are worth considering, including Mayo Rochester.

Dan

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Dan,

My husband has the same diagnosis as you - but just recently. How are you doing? Did you have surgery? Chemo? Join any clinical trials? Ar you at Mayo Scottsdale? Elizabetta

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elizabettagrace | @elizabettagrace | Feb 28, 2025

I’d like to join this group. My husband has extrahepatic cholangiocarcinoma. Just diagnosed last month.

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