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 ?
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.
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.
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 ?
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.
@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!
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.
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.
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.
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.
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.
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?
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.
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?
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?
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 , tracykvies01@gmail.com.
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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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2 ReactionsHi! 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 Reaction@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.
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.
@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.
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.
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?
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?
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??
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 , tracykvies01@gmail.com.