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

I'm in my 2nd year of Tibsovo
I've been on Furosemide for about a year. It has eliminated the fluid retention. I feel good!! I take Gabapentin for the Neuropathy. I eat a gallbladder diet and it has really helped me.
Depend on God and prayers help

Dear Angelziggy -- I was diagnosed with cholangiocarcinoma in January 2024 under similar circumstances as your husband. A stent was placed, and I was referred to a surgical oncologist and oncologist. Seek initial opinions and possible treatments at a comprehensive cancer center if possible. In the US, several centers of excellence in treating cholangiocarcinoma are worth considering, including Mayo Rochester.

Dan

My husband was diagnosed this past summer. Routine blood tests showed an elevation of his liver enzymes. Doctor said it was an infection. Nothing showed up on a biopsy or a scan. It wasn’t until he got an MRI that it showed he had colon carcinoma. No symptoms but he was between state 2 and 3. Started chemo but went to a surgeon at Sloan Kettering who took out the right side of his liver. Cancer is gone.. Chance that it can come back but chemo will help. Keep fighting until you get answers! Don’t give up! Here if you need anything

Omg -this is awful! She needs a good oncologist and she needs a surgeon . God bless her!

I was diagnosed last August but confined to liver so had liver resection Sept 6, did well through surgery and no spread and no symptoms but need chemo - hopefully you can have surgery or treatment for this cancer - keep me informed and I will keep you in my prayers

Afternoon, My husband and I just found out that he has Cholangio carcinoma. He was jaundice, losing weight, fatigue so we went to the er. He has had the CT scan and MRI already. mass in liver that went into the bile duct. tomorrow is the biopsy and if they can they will place a stent in. trying to find information anything

For the love of God have faith . I have bile duct stage 4,I'm in my 2nd year and one month doing grate,stable with tibsovo cancer pills.
If you don't mind
I would be praying for you.
Many blessings for healing.

I was diagnosed with Bile duct cancer 2 years ago has affected the liver,had 4 treatments of chemo dindt helpone year ago I started with tibsovo cancer pills are working wonderful,been stable however I also had Y90 radiation treatment to reduce the tumor .Sorry my grammar is limited to explain better. I'm not sure if we can exchange phoe #.
It will be easier to explain. God bless you
Carmen

@reachingout, you may wish to check out these discussions related to histotripsy:
- Anyone heard about Histotripsy for liver NETs?
https://connect.mayoclinic.org/discussion/histotripsy/
- Has anyone out there tried Histotripsy for tumors in the liver?
https://connect.mayoclinic.org/discussion/histotripsy-1/
Have you talked to an oncology social worker? They can often help find and apply for financial assistance for treatment. Learn more in this blog post:

- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Has anyone tried Histotripsy? My husband that has Cholangiocarcinoma since Dec 2023 will be having the Histotripsy procedure. It is new in our area and seems to be the best non-invasive option. The problem is our insurance won’t pay for it, and it is around a $17,000 procedure plus other expenses. We are looking for ways to help with some of the finances for it, but it has been a struggle to find. We will go into debt to have it done, but if anyone knows of any grants or other financial options, please share. We did try for financial assistance but don’t qualify.