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

I have been trying for almost 6 weeks to get my husband an appointment at MD Anderson. Our insurance won’t cover it since it is out of network. I did a go fund me and raised more than enough to cover the cost for new patients. I have done everything they have asked for, a referral from PCP and oncologist, the liver biopsy tissue was FedEx to the pathology department at Anderson, and received the pathology report from Anderson. I was told he would be assigned to the Gastro Department. Now they tell it has to go to Medical Review. Has anyone had such a difficult time getting a first appointment at MD Anderson?

Hello @jalewallen74,

That sounds like a good report, you must be pleased. You mention that you will continue with four more infusions of Imfinzi. How often do you have the infusions? Will there be another PET scan after the final infusion?

Teresa. I am pleased with my most recent PET scan and the way I am feeling positive about my treatment results. I get one infusion per month preceded by blood work to check for changes in the biomarkers such as liver and kidney function, white blood cells etc. Insurance only pays for a PET scan every 3 months so there will be a scan before the last infusion. Then my oncologist and I will evaluate my prognosis and future care as needed. It will certainly include further tests and doctor consultations I expect. I also expect to remain an active member of this community and stay informed about new developments in cancer treatment. John

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?

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!!!!

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.

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??

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.

@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?

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.