Bile duct cancer

Hi Saz2 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi sorry to hear that it has spread to your lung

.I have bio duct cancer which has spread to my liver.which has been diagnosed as terminal but the aim is to stop it and give me time.

I wanted to ask you who performed your bio duct removal...???? As my consultant doesnt seem to want to go down that route.I am considering going for a second opion and have come across a doctor in Leicester who specialises in bio duct and liver cancer his name is Mr Deep J .Malde.

I AM FIGHTING FOR TIME

Hi, my husband had the same surgery as you in September 2024 also followed on by Capecitabine.  (He has also taken part in a blind trial.)

I’m so sorry you now need further treatment.  Have you found the AMMF website that specialises in bile duct cancer?  There is a very active & kind Facebook page where you might find someone in a similar position. 

Wishing you well with your treatment.  

Hi.

I have primary cancer in the bio duct which has gone to my liver.I did have one lot of immunity therapy but I had a realy bad reaction to it.So now I am having Gemcitabine and carboplatin which i have no problems with although I am worried because there was and is a lot of hype over this immunotherapy that it does work.But my consultant has advised me not to have anymore of the immunotherapy.

I was interested to hear that you had your bio duct removed.Wondered if I could.Who did your operation do you have to meet a criteria.Please could you give me information,I am finding it realy hard find many people who share this diagnosis it would be reassuring to find someone that is surviving.Where do we get information on what options are open to us.me to0

Hi many thanks for your reply. Have found the ammf on Facebook has been very helpful lots of positive stories. Best wishes to your husband and yourself 

Hi I had my tumor removed and bile duct reconstructed at st james in leeds. I was really just very luck it was caught very early & at that time hadn't spread. I think it all depends on where abouts it is but ive heard alot of positive stories about the chemo your on. Have you joined the ammf patient only group on Facebook lots of people living the same hell as us and lots of useful & positive outcomes. I wish you all the best with your treatment 

Thank you.  I’m so pleased it might be helpful for you.  Sending you best wishes too your treatment goes well x

Hello 

I had bile duct cancer surgery in 2021 and had Capcetabine chemo afterwards.

I had a return of cancer in 2025, it sent Mets to my liver and lungs.

I had a first line chemo durvalumab, cisplatin and Gemcetabine which wasn't effective and I was very poorly whilst on it.

I have just started Folfox, which is suiting me better so far so good.

Just taking it day by day and hoping for the best.

Take care 

Jayne x

My partner was diagnosed with bile duct cancer too which has spread to his liver . It is inoperable and is terminal, he starts chemo next week . I am so scared 

I am so sorry to read of your partner's diagnosis.  I am just wondering if you have looked at the AMMF website that specialises in this particular cancer?  There is plenty of information and advice (they advocate how you must be treated at a specialist hospital as it is relatively rare) .  Their Facebook page (Cholangiocarcinoma Support UK &Europe) is very active and offers lots of advice & support. 

I hope you have close support & your partner finds the best treatment plan.