Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

@egoodies, how is therapy with proton beam going?

I just started yesterday. No side effects as of yet. Does not feel like anything when the treatment is going on.

I just read this and started reading the mayo clinic after joining last month. I was diagnosed July, 2023 w intrahepatic choleangiocarcinoma. They did 8 hrs of surgery August, 17th, removed the tumor, removed the gall bladder, and did ablation to surrounding tissue and lymph nodes. I then started gem/cap chemo for 8 cycles, and just started my first IV appt today for cycle 8 so only 1 more left and 13 more days of the pills. The cells on my pupils burned off several times, and Xiidra prescription eye drops healed them in 3 days each time. Please let me know if you have any questions. Big hugs and prayers for healing;)

Welcome, @lori777. so kind of you to offer support to others. Your experience with intrahepatic cholangiocarcinoma is recent and still very fresh in your mind. It sounds like you have completed treatment.

How are you feeling today? What tip would you offer someone newly diagnosed or what do you wish you had know as you started on this unexpected journey?

I was diagnosed with bile duct cancer that went to the pancreas in 2018. I had Whipple surgery, was clear until three years later when it returned, this time to the tail of pancreas. They then removed all of what was left of pancreas and also the spleen as it is on the same blood supply. I feel great with no limitations and it is now 2024. Although I really never think about it and just go about living life. Every once in a while I wonder when and if it will come back to lungs or other organs or blood as they cannot guarantee some cells managed to escape. I also did two rounds of Chemo and truthfully it wasn't a bad experience at all and would do it again if I had to. Anyone out there gone thru the same stuff? Just wondering what your outcome was and your story behind it.

Welcome, @lorid01. Your story offers hope. I'm encouraged that you are living your life and post treatment feel great with no limitations. I think it is perfectly normal to think, even if only periodically, about a possible recurrence or return somewhere else.

I'm tagging fellow members like @afrancesca @kjrita @egoodies @jerrydrennan @kennym who can share their experiences too.

Lori, how often do you have follow-up appointments?

Diagnosed in April as in intrahepatic variety. Did three cycles of chemo/immunotherapy. Experienced remarkable size reduction of tumor. Staged and scheduled for surgery in September. Happy with treatment program in Mayo/ Rochester location.

I'm a fit 69-year-old male diagnosed with distal (extrahepatic) cholangiocarcinoma in January 2024. I have completed ten infusions (gemcitabine/abraxine/cisplatin). Loss of hair and mild anemia were the only side effects.

I have completed two of 28 radiation/oral chemo (Xenoda) treatments with bile duct surgery scheduled at Mayo Rochester in October. The surgeon may expand the operation into a Whipple Procedure as a backup if determined during the surgery.

My mother (egoodies) died with bile duct cancer on May 21st. I said with bile duct cancer and not “of” bile duct cancer because her other issues (liver disease, diabetes, and kidney disease were ultimately what killed her.) She did radiation at NYC proton center and the cancer didn’t spread terribly afterwards but the damage was done. There were many horrible factors. I feel as though MSK in NYC was the death of her. She wasn’t well enough to make the trip to the Mayo Clinic. I wish she had been. We are all distraught. I think of those battling bile duct cancer all the time. I have hope through your stories that others will be healed and thrive.

Most sincere condolences about your Mom!

Several decades ago, I lost my Mom at an early age (50) to breast cancer.

For her and us, it was a blessing as the treatments at that time were worse than the cancer.

We'll always love and cherish her and her memory, but time did heal the pain to include understanding that her passing was a blessing.

With deepest sympathy -- Dan