Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

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.

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.

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.

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 ?

@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?