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

I have been on Gem/ Carb. for the past year. I had Vascular invasion . Tumors have shrunk to nodules on spinal cord. the nodules in the lungs have gone but the tumors have had very little shrinkage but they are shrinking slowly.

Hello @tball3748 and welcome to Mayo Clinic Connect. I appreciate you sharing your journey with cholangiocarcinomas. We have other members who have mentioned Dr. Smoot at Mayo and they all seem quite pleased with his work.

From what you posted it sounds like it will be another month before you have an MRI scan to see if the tumor has shrunk. Is my understanding correct?

Have you tolerated the nightly chemo well? Any side effects?

@jerrydrennan,

It is good to have you on Connect.

Do you know what treatments will follow for the METs to the lungs and spinal cord?

Thank You,
My Transplant has worked out great. The cancer has mets. to my Lungs and Spinal cord. So I am dealing with this for now. Blessed to be Here.

I'm so happy that things worked out for you!!!

Sounds good! I did have a lung resection at the beginning of January 2021 and there is a tiny spot in another part of my lung that was noticed in May 2021. It's growing so slowly that we decided to sit and wait. This will be the first time I don't have to come back for six months. This time I feel confident enough to be willing to wait that long between appointments. My idea is to live every day to the fullest, get things done while I have the energy to do them so if this darn cancer comes back, I won't be fretting about all the things I really needed to get done, but wasted my time instead. At least one thing about cancer is that we truly know not to take each day for granted, we say the things to people that are important to communicate, and to not sweat the small stuff. For those reminders I'm grateful. Plus I get to hang out on my porch swing with all you interesting people. It's nice not to sit alone.

Hi there. I am wondering if anyone else has been diagnosed with this cancer called cholangiocarcinomas? It's very rare and found usually within 1st 2 years of lif. Well, I turn 39 today.
If your familiar with runningback Walter Payton from the Chicago bears then you may know that he sadly passed away in 1999 from this disease.
I'm having a robotic surgery done on February 18th. I'm scarred because it's not a surgery that is done often. I know I have the best surgeon in this field that is confident enough to do this type of surgery but the risks stay the same. I'd Like to know if anyone else has been diagnosed with this or knows someone that has?? Please tell me your story!!!!! I appreciate any advice or guidance you have to offer.

Thank you!
Kristin

Hello ms Kristen
i was diagnosed in 2017 with CC, Mine was bile duct at the split to the liver. i had to go thru mayo protocol chemo , radiation and brachey therapy. I was put on the inactive transplant list. did chemo 16 months went thru staging . was negative for mets. was activated on transplant . I was transplanted september 19 2018 . My Surgeon was Dr Heimback . i am sure i spelt the name wrong. My transplant went great and my liver is doing great. i am truly Blessed for the Gift Of Life . I am from south Texas. Dr Rizvi was my Hep Dr. if there is any thing i can help you with please ask. there is alot of good people on this chat. Have a blessed day!