Bile Duct Cancer treatment

Hello Tennyson 

I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the bile duct group.

just a thought, have you considered asking your question to one of our nurses? they should be able to give you an answer, here's the link you need:

Ask a Nurse 

I wish you well with your personal journey.

Best wishes - Brian.

Thank you 

your very kind 

Hi Tennyson,

My husband was treated for Cholangiocarcinoma but was fortunate to have surgery  to remove the tumour. 

I was just wondering if you had looked at the AMMF website which has lots of information and they might be able to help you?  There is also an active Facebook where people are very kind & supportive and respond to questions.  I would just warn you there are some very sad posts.  

Hoping you soon find the info you are searching for.

Hi Tennyson,

My mum had GemCis first and was able to have surgery to remove the cancer privately. Unfortunately it came back a year later, then was able to have it operated again, this time on the NHS but unfortunately it came back again! She is now on targeted treatment. Just want to give you hope that chemotherapy and immunotherapy can shrink the tumour enough down to then be eligible to operation. x x

Hi Tennyson,

I hope you are doing ok.

My mum was just diagnosed with Bile Duct Cancer which they suspect has spread to the lymph nodes. Hoping by commenting more people see this post as I would like to know the same as you. 

It was caught early in my mum's case so she doesn't have any symptoms yet but we have been told that it's incurable and chemo/immunotherapy starts on Friday.

Looking for anything hopeful at the moment. 

Wishing you well

Hi Moho,

So sorry to hear about your mums recent diagnosis. Has she had a biopsy tested for gene mutations yet? If not, I’d defiantly recommend this as some genes have specific targeted treatment which work wonders and is a good back up treatment for future options. My mum has had this cancer for over 5 years now. All the best xx

Need to get moleculer tested, get in touch with prof bridgewater at uclh, join ammf page on face book

Hi Luis, thanks so much for your reply and I'm so sorry you have been on this journey too!

She has had the biopsy, we're still waiting for the results so keeping our fingers crossed.

Thanks again and hope you and your mum are doing ok xx 

Thank you for the recommendation, I will look up Prof Bridgewater!

I was diagnosed 2024, had gem/cis/ Durva which worked very well, was molecular tested found to have the idh1 mutation ( there are many others) been on tibsovo/ Ivosidenib for 18 months which consists of two tablets every morning, on the abc10 trial at UCLH , travel up there by train every 21 days , other hospitals are participating but prof bridgewater is in charge and the leading oncologist on this cancer, I should’ve said I’m inoperable due to metastasis. Ammf face book is a godsend and there many pages dedicated to cholangiocarcinoma, bile duct cancer.