Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

My bile duct is dilated to 14mm, but they don’t see any stones blocking the ducts, nor do they see anything in the head of the pancreas. They’re not certain what’s causing it, but mentioned bile duct cancer. But currently they’re dealing with my kidney cancer. What symptoms did you have?

My tumor is inside my bile duct. My symptoms began with jaundice and nausea. I have a stent in place to keep the bile duct open. The nausea and jaundice have subsided, but the stent is only temporary- I have already had four stent procedures. I do not want to do chemo, even though the doctors will not do a resection surgery. I may skip to proton beam therapy only. Are you on chemo?

No. I am waiting for my radical nephrectomy, removal of the left kidney. And afterwards he said a year of immunotherapy and targeted therapy.

Good luck! Wishing you good health!

Thank you! Good luck to you as well!

@egoodies, I'd like to add my welcome along with @edie78t

I'm also tagging other members who have experience with bile duct cancer like @jalewallen74 @stanr71 @billdemarco @lovingwifeterry @timdale @tball3748 and more.

You may also be interested in these related discussions:
- Diagnosed with cholangiocarcinoma, can this be treated?
https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/
- Who are the best Doctors for Cholangiocarcinoma at the Mayo Clinic
https://connect.mayoclinic.org/discussion/who-are-the-best-doctors-for-cholangiocarcinoma-at-the-mayo-clinic/
– Cholangiocarcinoma – Bile Duct Cancer – anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

@egoodies, have you and your team decided on next steps and a treatment plan?

I have been on chemo for 2 years with this diagnosis. The targeted therapy that was found called Pemazyre has been the most effective. I find strength in my faith w/God and try keeping a good attitude. I have stents and due to a grandchild rough housing had to get an external bile duct drain that is now capped and they are waiting 5 weeks to be sure everything ok. I’ve gotten on FB and found hugely proactive cholangiocarcinoma groups I recommend you hop on.

Thank you for the recommendation. I have Facebook- I will join. I decided not to do the chemo now. I am starting the proton beam therapy- I have the initial mapping and imaging on Wednesday.

@egoodies, how did the mapping and imaging go? When do start proton beam therapy?

The mapping and imaging were long and really wiped me out. I feel better now. I start September 14th. Praying it works 🙏🏻