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 ~

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@magsbrad

She may not be well enough for chemotherapy but I would definitely get a full explanation as to what’s going on. Ask the oncologist now. They may remove the cancerous section and then do chemo. But they really should be expected to let you know the reason behind their decisions. Call and ask as soon as possible. Her age won’t be a factor unless she has other illnesses.

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Well they supposed to start her chemo after 2 classes she got to take they also want to remove her gallbladder before she starts chemo she go to her Dr. Monday and said she was going to ask a lot of questions

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@reachingout

I would find another Oncologist asap! They should have her on chemo by now.

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She may not be well enough for chemotherapy but I would definitely get a full explanation as to what’s going on. Ask the oncologist now. They may remove the cancerous section and then do chemo. But they really should be expected to let you know the reason behind their decisions. Call and ask as soon as possible. Her age won’t be a factor unless she has other illnesses.

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@daughterwholoveshermomhelpinghertofightbileductcancer

My mom found out she had cancer in november 2023 and in January t2024 they recently said it was stage 4 bile duct cancer and now they want to remove her gallbladder she has had a tube in her side to drain the bile and now they have inside of her she always sick cant hold down food and they still haven't put her on treatment or chemo nothing they just keep postponing it like they don't care she is 57 years old and is giving up because she feels like itnot gonna help to get treatment, plus she is tired she lives in Oklahoma and I'm in Texas I been trying to get her to get my sister to bring her to me and I've been trying to fight it for her everyday but I do research all the time online but dont know much about her condition to know what I should do any advice would help tremendously

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I would find another Oncologist asap! They should have her on chemo by now.

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My mom found out she had cancer in november 2023 and in January t2024 they recently said it was stage 4 bile duct cancer and now they want to remove her gallbladder she has had a tube in her side to drain the bile and now they have inside of her she always sick cant hold down food and they still haven't put her on treatment or chemo nothing they just keep postponing it like they don't care she is 57 years old and is giving up because she feels like itnot gonna help to get treatment, plus she is tired she lives in Oklahoma and I'm in Texas I been trying to get her to get my sister to bring her to me and I've been trying to fight it for her everyday but I do research all the time online but dont know much about her condition to know what I should do any advice would help tremendously

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@philomenacheung

My wife was diagnosed with bile duct cancer last Oct. with 3 to 6 months life expectancy left. She is on chemotherapy and immunotherapy. The treatments stopped the growth of the cancer but far from a cure. Currently investigating Car-T cell therapy for her. Just wonder if anyone has data or information on the CAR-T Cell therapy on Cholangiocarcinoma( bile duct cancer)?

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Yes. They told us he has about 1 year to live. But, we are looking for something better than that. I do a lot of research and we have a great oncologist too.
To answer your question, I have read that CART-T-Cell therapy works best for blood cancers not so much solid tumors. But they are continuing to work on that for solid tumors. The most advanced treatment for bile duct cancer right now is Futibatinib. Your oncologist can help you figure out later when the chemo they are taking is no longer effective and if that treatment will work for them.

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@reachingout

My husband was diagnosed with bile duct cancer Dec. 2023, so just a very short time ago. It spread throughout both sides of his liver and 2 lymph nodes. He is reacting well to his chemo so far. I am wondering if your cancer spread to another organ? And what treatments you are taking?We were told he has about 1 year to live. We want to fight this and find a cure.

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My wife was diagnosed with bile duct cancer last Oct. with 3 to 6 months life expectancy left. She is on chemotherapy and immunotherapy. The treatments stopped the growth of the cancer but far from a cure. Currently investigating Car-T cell therapy for her. Just wonder if anyone has data or information on the CAR-T Cell therapy on Cholangiocarcinoma( bile duct cancer)?

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@krishh

Hi -I had my surgery at Mayo in Rochester, MN in May of 2015. I only live about 75 miles from Rochester. My diagnoses is stage 4 also, and I am currently doing quite well. Just saw my oncologist yesterday. Will have scans again in March to see if this chemo is still working. Feel free to reach out if you or your Mom have any questions and I will do my best to answer! Good luck ~

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What part of your body did you have surgery on? My husband has bile duct cancer that spread throughout both sides of his liver and 2 lymph nodes. He just got diagnosed in Dec. We are looking to fight and find a cure

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@krishh

I have cholangiocarcinoma. I've been dealing with it for 27 months. What kind of questions do you have? Happy to correspond with you if you wish.  ~ Kris

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My husband was diagnosed with bile duct cancer Dec. 2023, so just a very short time ago. It spread throughout both sides of his liver and 2 lymph nodes. He is reacting well to his chemo so far. I am wondering if your cancer spread to another organ? And what treatments you are taking?We were told he has about 1 year to live. We want to fight this and find a cure.

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@edie78t

Hello. I, too, have been diagnosed with cholangiocarcinoma, intrahepatic, stage 4. I have not received any treatment yet but since I have exhausted all efforts looking for alternative treatment other than chemo, I am now ready to start with chemo (gemcitabine/cisplatin + durvalumab (immunotherapy).
I have consulted with Huntsman Cancer Institute in Utah, Memorial Sloan Kettering in New York and Mayo Clinic in Minnesota.

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Good luck with your treatment. I hope everything works out for you. I have cancer too but decided not to treat it. I keep reading about where chemo has helped, I hope you are one of the success stories. Take care.

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@juliapoland

Hi! I am from Europe. My mother has Cholangiocarcinoma. We were told that it is inoperable and there is no Targeted therapy. She is only 53. I still have hope and I am looking for help. How are you? Can you recommed any treatment / consultation in the USA ?

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Hello. I, too, have been diagnosed with cholangiocarcinoma, intrahepatic, stage 4. I have not received any treatment yet but since I have exhausted all efforts looking for alternative treatment other than chemo, I am now ready to start with chemo (gemcitabine/cisplatin + durvalumab (immunotherapy).
I have consulted with Huntsman Cancer Institute in Utah, Memorial Sloan Kettering in New York and Mayo Clinic in Minnesota.

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