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.
@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.
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
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
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."
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.
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
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.
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
I'm in my 2nd year of Tibsovo
I've been on Furosemide for about a year. It has eliminated the fluid retention. I feel good!! I take Gabapentin for the Neuropathy. I eat a gallbladder diet and it has really helped me.
Depend on God and prayers help
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
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.
My husband was diagnosed this past summer. Routine blood tests showed an elevation of his liver enzymes. Doctor said it was an infection. Nothing showed up on a biopsy or a scan. It wasn’t until he got an MRI that it showed he had colon carcinoma. No symptoms but he was between state 2 and 3. Started chemo but went to a surgeon at Sloan Kettering who took out the right side of his liver. Cancer is gone.. Chance that it can come back but chemo will help. Keep fighting until you get answers! Don’t give up! Here if you need anything
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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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1 Reaction@angelziggy, how did the biopsy and the stent placement go? How is your husband doing? And YOU?
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1 ReactionDear 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
Did you have surgery, or did you go directly to Tibsovo. Any metastases?
Any update? My husband was diagnosed with extrahepatic cholangiocarcinoma a month ago. Interested in hearing what treatments you have had? Elizabetta
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
I’d like to join this group. My husband has extrahepatic cholangiocarcinoma. Just diagnosed last month.
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1 ReactionI'm in my 2nd year of Tibsovo
I've been on Furosemide for about a year. It has eliminated the fluid retention. I feel good!! I take Gabapentin for the Neuropathy. I eat a gallbladder diet and it has really helped me.
Depend on God and prayers help
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
My husband was diagnosed this past summer. Routine blood tests showed an elevation of his liver enzymes. Doctor said it was an infection. Nothing showed up on a biopsy or a scan. It wasn’t until he got an MRI that it showed he had colon carcinoma. No symptoms but he was between state 2 and 3. Started chemo but went to a surgeon at Sloan Kettering who took out the right side of his liver. Cancer is gone.. Chance that it can come back but chemo will help. Keep fighting until you get answers! Don’t give up! Here if you need anything