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

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?

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 @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?

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?

John here with an update from my latest PET Scan after my second Imfinzi infusion. The cancer has not spread beyond the bile ducts and liver. Blood work shows my liver is functioning well. Some of the small areas of cancer in the liver have disappeared. The largest lesion showed some growth but my oncologist is very happy with the results so we are continuing with 4 more infusions of Imfinzi. My side effects are the same as chemo only not as strong.

has anyone else had problems with side effects after you stopped chemo? We stopped after his surgery, he got a terible E Coli bladder infection they think in the hospital, then other things, bad nausia and sleeping all the time and very weak blood clots, also he started filling up with fluid and had to have it pumped out. Worse than during cemo. Have a pallitive Doctor on board to try to help find drugs to help. They are delaying his next cycle of chemo. Did anyone have success getting help with the side effects?

Often you may be started on the chemotherapy drugs Paclitaxel and/or Carboplatin to test your tolerance of chemotherapy as I was. They maybe considered to be Second Line Treatments as you "move up" to Cis-Gen. John

You are wise to learn as much as you can about Chemo and Immuno Therapies. I did Chemotherapy for a year as I stepped up to the most used First Line chemo drugs Cisplatin and Gemcitabine. Your reaction and bloodwork to these powerful drugs will be watched carefully for good tolerance of side effects when I tolerate well. PET scans and blood work indicated my Stage I Cholangiocarcinoma had not spread and the 3 lesions were reducing in size. My Oncologist has stopped my chemotherapy and put me on the Immunotherapy drug Imfinzi. The Cisplatin was too hard on my kidneys. Imfinzi side effect are same as chemo so I tolerate them well. I know that Platino and Gemzar are recommended First Line Treatments. MD Anderson of course is considered the best cancer hospital in the world. My daughter had her Thyroid Cancer surgery there. I use Genesis Cancer Clinic as it is closer to my home and transportation. Best of luck and stay in touch on this forum. John

I didn’t realize there were several MD Anderson facilities in Houston. Which one is closer to the Rotary House?
Thanks in advance for responding 🙏💕

We went to a “teaching class on chemotherapy “ today. My husband starts his first round of chemo tomorrow. The three drugs he will be receiving during his series of treatments are IMFINZI, PLATINO, and GEMZAR. Any info or experiences with these drugs is very much appreciated. I am still waiting to hear from MD Anderson in Houston.