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.

@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.

Hello @mngardenaddict

It was good to read your post and see what a good attitude you have developed as a result of these serious health issues.

I appreciate your mentioning that you no longer take a day for granted and that you communicate things to people that are important.

You mention that this is slow-growing cancer. Do you know the name of it?

I love word pictures and the one I really like is that you are glad that you "get to hang out" on your porch swing with all of the interesting people on Connect. You are right when you say, "It's nice not to sit alone."

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?

Hey Kristin! I just turned 54 but was diagnosed with CC this past September. I was stage IIIb w/a 9” tumor inside my liver smack dab in the middle so not operable until it shrinks. Couple of months of Gem/Cis chemo still not shrunk. So I did qualify for the targeted therapy since there is a FGFR2 mutation and started Pemazyre 1 week ago (nightly pill, kinda like “at home” chemo) and waiting for the 2nd cycle (4 weeks) for a rescan MRI to see if it has shrunk. It’s like a waiting game w/hide n’ seek. Crazy for us, huh? I’m hopeful it has shrunk bcz Dr. Smoot up at Mayo will be cutting my liver down to pull this dang thing out. Keep us up to date on your progress. We are all pretty much wanting to have this surgically removed bcz better chance to keep it from spreading so you are ahead of the game! Praying for your peace and recovery!

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.

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!

Hi Kristen. You'll notice that I moved your message to this existing discussion group in the Cancer group about cholangiocarcinoma. I did this so you can connect with other members who have experience with bile duct cancer like @clarke6 @mngardenaddict @kjrita @alcabrer @krishh @jnc1955 @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 and others. Click VIEW & REPLY to scroll through past posts and learn more about the stories of others.

Kristen, I'm glad that you have full confidence in your surgeon as you prepare for surgery. What are your main concerns about surgery? What questions would you like to ask?