Diagnosed with cholangiocarcinoma, can this be treated?

Posted by suchita90 @suchita90, Nov 10, 2021

Father in law is diagnosed with this and surgery could happen. But seems like chemo is not ending, even oral chemo is happening. Lot of side effects after 8 chemos
Any treatment to cure permanently and what long term measures can be taken.
Do suggest. Thanks

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@lvtexas

@wjdemarco - Bill - I haven’t had any infusions yet. My local oncologist offered up gem/cis with immune therapy. Have you tried the immune therapy yet? It was FDA approved based on a study TOPAZ-1. I have Cholangiocarcinoma (thought could operate) but found enlarged lymph nodes in chest. Headed to Mayo for biopsy to see what is in the chest. Suspect Bilary cancer moved to lymph nodes so surgery isn’t option. I pray that my local team was wrong. What’s a course, cycle or count of chemo mean? And how long have you been fighting this? I was recently diagnosed. Thank you!

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A cycle could be wrong treatments
Depends on what chemo they are using. I have the same thing, billiary cancer infecting lymph nodes so no surgery. University of wisconsin steered me away from topaz, I read the study, it may increase life 2 or 3 weeks but she thought the study was flawed. Now at mayo for all imaging and chemo here in illinois . I was diagnosed in November last year and started gem cis now on folfox

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A cycle is 2 treatments depending on the chemo used

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You can add me to the Cholangiocarcinoma discussions/forums here. I've had it for a year. I live in Houston. I did Chemotherapy for a year; Cisplatin and Gemcitatine. The cancer did'nt spread and shrunk as shown by PET Scans. Cisplatin was hard on my kidneys and stopped. This month my Oncologist started me on the Immunotherapy drug Imfinzi. The side effects are the same but I tolerate them well.

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@wjdemarco

A cycle is 2 treatments depending on the chemo used

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My cycle was 6 cycles of 4 chemo treatments each cycle starting with Paclitaxel and Carboplatin. When I tolerated them, I was then switched to Gemcitabine and Cisplatin which proved to be too hard on my kidneys. The Cisplatin was stopped the 4th cycle and the last 2 chemo treatments were Gemcitabine only. I am now only on a 6 month cycle of Imfinzi immunotherapy. I have completed 2 months of Imfinzi and my body tolerates it well. My Cholangiocarcinoma has not spread and shrinking as shown by PET scans. I have read good things about Folfox. Keep us informed and best of luck. John

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Was supposed to have surgery this morning to remove my bile duct and to reconnect my liver to the small intestine. Liver specialist instead is referring me to a Medical Oncologist for cancer treatment. Recommendations on a successful treatment plan and top notch Doctor that specializes in bile duct cancer.

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@gstoreydothan

Was supposed to have surgery this morning to remove my bile duct and to reconnect my liver to the small intestine. Liver specialist instead is referring me to a Medical Oncologist for cancer treatment. Recommendations on a successful treatment plan and top notch Doctor that specializes in bile duct cancer.

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Oh gosh, @gstoreydothan, that must've come as a surprise to be ready for surgery only to find out that you are not getting surgery.

I moved your question about treatment plans a doctor recommendations to this existing discussion:
- Diagnosed with cholangiocarcinoma, can this be treated?: https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

I did this so you can read previous posts and connect easily with other people with experience with bile duct cancer (cholangiocarcinoma) like @kjrita @afrancesca @clarke6 @mngardenaddict @jerrydrennan @chicory2010 @naturegirl5 @billdemarco @wjdemarco @lvtexas @jalewallen74

Is the referral being made to a major cancer center? If you would like to seek a second opinion at Mayo Clinic, here's the link to request a consult: http://mayocl.in/1mtmR63

@gstoreydothan, there are many treatment options for bile duct cancer. A medical oncologist oversees many of them like chemotherapy, immunotherapy, targeted drug therapy to name a few. Did the surgeon explain what they saw or how they determined that surgery wasn't the best option at the moment?

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@colleenyoung

Oh gosh, @gstoreydothan, that must've come as a surprise to be ready for surgery only to find out that you are not getting surgery.

I moved your question about treatment plans a doctor recommendations to this existing discussion:
- Diagnosed with cholangiocarcinoma, can this be treated?: https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

I did this so you can read previous posts and connect easily with other people with experience with bile duct cancer (cholangiocarcinoma) like @kjrita @afrancesca @clarke6 @mngardenaddict @jerrydrennan @chicory2010 @naturegirl5 @billdemarco @wjdemarco @lvtexas @jalewallen74

Is the referral being made to a major cancer center? If you would like to seek a second opinion at Mayo Clinic, here's the link to request a consult: http://mayocl.in/1mtmR63

@gstoreydothan, there are many treatment options for bile duct cancer. A medical oncologist oversees many of them like chemotherapy, immunotherapy, targeted drug therapy to name a few. Did the surgeon explain what they saw or how they determined that surgery wasn't the best option at the moment?

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There are a few reasons the surgery could not be performed to remove the bile duct. The condition of the liver and the percentage that would be left to reconnect to, was not sufficient. Also, the presumed stage of the cancer would have meant the surgery would not be successful. The bile duct currently has a stent that is functioning.

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Recent diagnosis of Cholangiocarcinoma at the Cleveland Clinic. I am looking for the Doctors who specialize in this cancer. As all patients' I would like to have the best of the best.

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@brucepalmer

Recent diagnosis of Cholangiocarcinoma at the Cleveland Clinic. I am looking for the Doctors who specialize in this cancer. As all patients' I would like to have the best of the best.

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Welcome @brucepalmer, I think the Mayo Clinic would be an excellent choice since they use a multidisciplinary team approach to provide individualized, comprehensive care for people with bile duct cancer. Here's more information:

--- Cholangiocarcinoma care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/care-at-mayo-clinic/mac-20352416
--- Doctors & departments: https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/doctors-departments/ddc-20352415.

Are you considering one of the Mayo Clinic locations?

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Is anyone currently being treated for cholangioncarcinoma. Are you willing to share your therapy experiences and struggles. What are the treatments like and how often and for how long. Who is your oncologist?

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