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

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

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 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.

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 @clarke6, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion group about cholangiocarcinoma. I did this so you can connect with other members who have experience with bile duct cancer like @kjrita @alcabrer @krishh @jnc1955 @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 and others. Click VIEW & REPLY to scroll through past posts.

Back to you Clark. When were you diagnosed with cholangiocarcinoma? What treatments have you had and how are you doing?

Wondering if anyone else has cholangiocarcinoma? Would like to chat if you are interested.

@chicory2010
Hello I am Jerry
I was diagnosed with de novo prehillar cholangiocarcinoma.
I have been thru protocol and received a liver transplant.
My old liver still had residual adenocarcinoma and peranural invasion. I have been told I have 3-5 yrs.
I am a yr into this now. I am not sure how I can help you. But i am available for any thoughts or questions. My heart and Prayers go out to you.
I was diagnosed in Feb. 2017.
God Bless
Jerry Drennan

@chicory2010, I want to welcome you to Connect. By way of introduction, I had a liver disease and received a transplant, so I am familiar with jaundice, and ER, and hospital overnights. I am not experienced with having cholangiocarcinoma, and so I would like to ask @lisamb, @jerrydrennan, @jodee, @afrancesca to this discussion.

Chicory2010, How do you feel after having had 4 rounds of chemo? Has the jaundice gone away? Do you have to maintain a special diet?

Here is an article, Bile Duct Cancer, and a podcast video that I located in the Connect Pages>Podcasts>Bile Duct Cancer.
https://connect.mayoclinic.org/page/podcasts/newsfeed-post/bile-duct-cancer/

I had 4 rounds of chemo. It is stage 4 and nonsurgical. So I do my chemo hipeing it will shrink it enough to live the 5 years they say I can. I am 52 year old female. I became ill lat October. Since then I have been to 11 ER visits, several hospital stays and my gallbladder out. Blood work always came back good. The last ER visit I went to I was jaundice and that's how they found my cancer. I have been dealing with diagnosis since May 2019. Thanks in advance for your time

Do you have bile duct cancer? How many rounds of chemo did u have e?