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

I had surgery at Mayo in 2017. The took out half my liver, gallbladder and reconnected bile duct to small intestine. Had positive lymph nodes so did 6 months capcitibine. Cancer was gone for about 18 months and then it came back. Immunotherapy did not work and developed liver abscesses after it. Currently 3 years post diagnosis and on cisplatin and gemcitibine. Cancer is now progressing into lungs and peritoneum. Have had 2 biliary drains for past year which sucks. On antibiotics for the past year. I am told there is one more chemo to try after this. Was a very healthy person before all of this and am very frustrated by my situation. I have a great support system and amazing husband and children so trying to focus on my blessings and enjoy each day.

Hi from Minneapolis. I was diagnosed early March 2018 after I had my gallbladder removed. I had two months of FOLFOX here in the Cities and then decided to change my care to Mayo because it had more experience with cholangio than the other options here. I had surgery to remove part of my liver, 10 lymph nodes, my bile duct refashioned, and then underwent four months of gem/cis in Rochester. I have been NED since early November, 2018. The quarterly scans and blood work is done there. We have been looking at one small spot in my left upper lung for the past six months. It's still too small to biopsy so I will continue to wait and twiddle my thumbs as it were. Keep in touch.

Glad to hear you are doing so well. Twiddle my thumbs that is for sure. Not a nice cancer and so much unknown. Sounds like we had the same surgery. I wish there was another surgical option but there isn’t for me. I hope things continue to go so well for you and yes let’s keep in touch.

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

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?

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!

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.

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

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!

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?