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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.

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
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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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.

REPLY
1 reply
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
In reply to @colleenyoung "Hi @edie78t, was your diagnosis of bile duct cancer (cholangiocarcinoma) confirmed? There are many treatments available..." + (show)
@colleenyoung

Hi @edie78t, was your diagnosis of bile duct cancer (cholangiocarcinoma) confirmed?

There are many treatments available to treat cholangiocarcinoma, including targeted therapies, immunotherapy, and, of course, surgery, chemotherapy and others.

@jalewallen74 @wjdemarco @lvtexas @billdemarco @suchita90 share their treatment experiences in this discussion:
- Diagnosed with cholangiocarcinoma, can this be treated? https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

Edie, what treatment is being suggested for you?

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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.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 29, 2023
In reply to @edie78t "I am being diagnosed with BTC, not 100% sure yet as we are awaiting the results..." + (show)
@edie78t

I am being diagnosed with BTC, not 100% sure yet as we are awaiting the results from another test. However, my oncologist is pretty sure about this but I am not. I am a very healthy 78 year old who is active and is not showing any symptoms except for a lump on my left shoulder/neck. That was removed and unfortunately positive for cancer.
What treatments are available that are less invasive than chemo? I heard about targeted therapy . Is anybody receiving a targeted therapy?

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Hi @edie78t, was your diagnosis of bile duct cancer (cholangiocarcinoma) confirmed?

There are many treatments available to treat cholangiocarcinoma, including targeted therapies, immunotherapy, and, of course, surgery, chemotherapy and others.

@jalewallen74 @wjdemarco @lvtexas @billdemarco @suchita90 share their treatment experiences in this discussion:
- Diagnosed with cholangiocarcinoma, can this be treated? https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

Edie, what treatment is being suggested for you?

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1 reply
edie78t | @edie78t | May 19, 2023

I am being diagnosed with BTC, not 100% sure yet as we are awaiting the results from another test. However, my oncologist is pretty sure about this but I am not. I am a very healthy 78 year old who is active and is not showing any symptoms except for a lump on my left shoulder/neck. That was removed and unfortunately positive for cancer.
What treatments are available that are less invasive than chemo? I heard about targeted therapy . Is anybody receiving a targeted therapy?

REPLY
1 reply
tra418 | @tra418 | Mar 31, 2023

Any one with this cancer a Vietnam Veteran??My husband is and read it is possible the parasite liver fluck from the water in the streams??

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tra418 | @tra418 | Mar 31, 2023
In reply to @lovingwifeterry "My husband as been dealing with bile duct cancer starting in April. A long road, now..." + (show)
@lovingwifeterry

My husband as been dealing with bile duct cancer starting in April. A long road, now that the Wipple was aborted, we came home with many more problems. He got a E Coli infection that was very bad on top of surgery. Two rounds of antibotics and finally IV and another 9 days of daily shots to get him over it. Then he started retaining fluid. They pumped out 7 litres of fluid, he lost 15 pounds! He is very weak and doesn't want to eat. Chemo was posponed due to his illness. Getting ready to start again Dec 30. What can I do to help him get strong enough to start chemo again?

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My husband has bile duct cancer and has had nothing but infection , sepsis twice , pneumonia, necrotizing pancreatitis for the last 3 months .He finally started chemo 2 weeks ago .I can't imagine him getting the Whipple surgery after 3 months of chemo .He is 75 and finally gained some weight and strength back after all the hospital stays .God bless and stay in touch .Tracy

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tball3748 | @tball3748 | Mar 24, 2023
In reply to @timdale "Hello Fellow PSC / CCA patients and support resources. I am a 68 year old male..." + (show)
@timdale

Hello Fellow PSC / CCA patients and support resources. I am a 68 year old male diagnosed with PSC August 2020. At my yearly Mayo MRCP follow up Sept 2022, Mayo identified a CCA tumor which was resected Oct 2022 On 3/8/23 I had a followup CT which shows recurring CCA tumor. Not good news. One of the Doctors I met with forecasted 6 months or possibly up to 1 year left to live.

I have not been on any Chemo or similar therapies and do not plan to pursue in the future. An option my Mayo Oncologist proposed was pursuing a biopsy of the tumor to understand tumor characteristics and markers which may enable more targeted therapies.. My Oncologist also proposed Radiation which he says will likely be quick (not a 6 month ordeal) plus this therapy would provide “good” quality of life plus extend it. I am planning to pursue the biopsy and a consultation with a Mayo Radiation Oncologist.

My wife and I have a blended family with 5 children. All our kids have been married prior except for my youngest son who is planning a wedding 10/1/2023. I’m very concerned I may not live long enough or be in good enough physical shape to attend his wedding.

Does anyone have experience / feedback related to radiation therapy?

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I was diagnosed by Mayo 18 months ago w/CCA and have had chemo, immunotherapy & targeted genetic therapy so far. The genetic therapy is the only one that has worked to shrink my tumor so far. Mayo said will operate once my tumor is no larger than 2cm. Next week’s MRI we are praying shows continued shrinkage. I understand your frustration, but remember that we don’t have an expiration date! I only have 1 other targeted therapy & one chemo left before I run out of options. Radiation would be my last procedure remaining. If that happens, I’ll go holistic and would even consider Ivermectin! Keep going no matter what! You owe it to yourself & your family to fight. I’ve already made my peace with God and though I believe he has healed me (faith here in this life or in heaven) you need to keep yourself positive. Find your faith and keep up the fight! You’re worth it!!!!

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