1. < Liver Cancer

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 29, 2023
In reply to @edie78t "There was a second opinion and confirmed that indeed intrahepatic cholangiocarcinoma or bile duct cancer is..." + (show)
@edie78t

There was a second opinion and confirmed that indeed intrahepatic cholangiocarcinoma or bile duct cancer is my cancer diagnosis.

I have an appointment with my oncologist on Thursday, June 1 to discuss further the condition as well as potential treatment. According to his write-up after my initial consultation, he is leaning towards multi agent therapies: fluoroucil, capecitabine, gemcitabine, cisplatin, durvalumab, checkpoint inhibition.

He had also indicated that is incurable and I am not a candidate for surgery though I might be a candidate for a clinical trial.

I am looking for alternative treatment as opposed to the classic chemo. What are my options?
Thank you.

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@edie78t, thanks for the additional information. As you prepare to discuss options with your oncologist, you might find this list of treatment option on Mayo Clinic's website helpful:
- Diagnosis & Treatment https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/diagnosis-treatment/drc-20352413

I hope this helps you to get your questions ready and to ask about the pros and cons of various treatment types and why a treatment may or may not be suitable for you.

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edie78t | @edie78t | May 29, 2023

Thank you Colleen. I appreciate the information. How do I know if I could be a candidate for
1. Targeted drug therapy
2. Heating cancer cells
3. Photodynamic therapy

I would like to try one of those. I am open to participate in a clinical trial if there is one. Thank you.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 29, 2023
In reply to @edie78t "Thank you Colleen. I appreciate the information. How do I know if I could be a..." + (show)
@edie78t

Thank you Colleen. I appreciate the information. How do I know if I could be a candidate for
1. Targeted drug therapy
2. Heating cancer cells
3. Photodynamic therapy

I would like to try one of those. I am open to participate in a clinical trial if there is one. Thank you.

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@edie78t, your oncologist will be able to tell you. It will depend on your tumor characteristics like type, stage, markers, and other factors. It's a good question to ask!

If you want to ask about possible clinical trials available at Mayo Clinic you can search here https://www.mayo.edu/research/clinical-trials or call 855-776-0015.

@jalewallen74 @billdemarco @lovingwifeterry @timdale @tball3748 may have more to add.

Keep asking questions, Edie. You're asking good ones.

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juliapoland | @juliapoland | Jun 26, 2023
In reply to @jalewallen74 "I also have Cholangiocarcinoma and live in Houston. I have received Chemotherapy consisting of the drugs..." + (show)
@jalewallen74

I also have Cholangiocarcinoma and live in Houston. I have received Chemotherapy consisting of the drugs Cisplatin and Gemcitabine for a year. This treatment has been successful in keeping the cancer from spreading and reducing the size of the 3 lesions I have as revealed by the PET Scans. Recently my Oncologist has switched me to Immunotherapy using the drug Imfinzi which is not so hard on my kidneys and uses the bodies' own Immune System. I receive my treatments with Genesis Medical Group which is closer to my home and transportation than MD Anderson. Of course MD is the best cancer hospital in the world and my daughter used them when when she needed surgery to remove her Thyroid Cancer. Feel free to contact me at anytime on the Bile Duct Cancer forum or here.

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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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1 reply
edie78t | @edie78t | Jun 27, 2023
In reply to @juliapoland "Hi! I am from Europe. My mother has Cholangiocarcinoma. We were told that it is inoperable..." + (show)
@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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1 reply
stanr71 | @stanr71 | Jun 28, 2023
In reply to @edie78t "Hello. I, too, have been diagnosed with cholangiocarcinoma, intrahepatic, stage 4. I have not received any..." + (show)
@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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reachingout | @reachingout | Feb 3 10:01am
In reply to @krishh "I have cholangiocarcinoma. I've been dealing with it for 27 months. What kind of questions do..." + (show)
@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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1 reply
reachingout | @reachingout | Feb 3 10:23am
In reply to @krishh "Hi -I had my surgery at Mayo in Rochester, MN in May of 2015. I only..." + (show)
@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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philomenacheung | @philomenacheung | Feb 4 6:37pm
In reply to @reachingout "My husband was diagnosed with bile duct cancer Dec. 2023, so just a very short time..." + (show)
@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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1 reply
reachingout | @reachingout | Feb 4 7:10pm
In reply to @philomenacheung "My wife was diagnosed with bile duct cancer last Oct. with 3 to 6 months life..." + (show)
@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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