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

Posted by krishh @krishh, Jul 15, 2017

I'm on my fourth line of treatment. What treatments are others receiving for this? Thanks ~

Interested in more discussions like this? Go to the Liver Cancer Support Group.

@daughterwholoveshermomhelpinghertofightbileductcancer

My mom found out she had cancer in november 2023 and in January t2024 they recently said it was stage 4 bile duct cancer and now they want to remove her gallbladder she has had a tube in her side to drain the bile and now they have inside of her she always sick cant hold down food and they still haven't put her on treatment or chemo nothing they just keep postponing it like they don't care she is 57 years old and is giving up because she feels like itnot gonna help to get treatment, plus she is tired she lives in Oklahoma and I'm in Texas I been trying to get her to get my sister to bring her to me and I've been trying to fight it for her everyday but I do research all the time online but dont know much about her condition to know what I should do any advice would help tremendously

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

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@angelziggy

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

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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

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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

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@lberg

I have no idea what to expect in the near future, all we know is it is BAD! stage 3.

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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.

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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

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@reachingout

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.

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@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/

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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.

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@sunflower88

Hassan, wishing you well and hoping no recurrence.

Take care.

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Thank you so much

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@kimia2000

Hi,
I was diagnosed in January 2023 with pre-hillar stage 3B cholangiocarcinoma. At Mass General Hospital, they told ne it's unresectable.
I went through 16 infusion with 3 drugs, then 30 sessions of radiation.
After several months if uncertainty and anguish, the UPMC approved ne for loving donor liver transplant.
I had a 15.30 hours successful surgery..then, to minimize the risk of recurrence, I started 6 months of capecitabine, 2000 mg, twice a day.
So far, the images and kab work shiw no sign of recurrence.
My oncologist warns ne that I have 50% chance of recurrence but Mayo data shows %30 chance.
My tumor was 3 cm and no spread to lymph nodes or other organs.
Post-surgey Pathology showed that the tumor was completely dead with no live cancer cell, proving that pre-tranplant treatment was effective.
I had no major issue during the chemo and the tumor shrank a bit during the treatment.
Wish every other patient the success I have had so far.
Thanks
Hassan, 67 years old in CT

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Hassan, wishing you well and hoping no recurrence.

Take care.

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Thank you.
I wish the same for all the patients battling this cancer

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