Hi everyone just wanted to say hello. I have been diagnosed with bice duct cancer and am beginning chemo on Wednesday alongside immunotherapy. Feeling a bit nervous but glad to have been directed to this group thanks Mary
I am sorry to read of your diagnosis. My husband was able to have a resection in September 2024. It’s a lot to take in and new drugs seem scary. It wasn’t until after his operation I discovered the AMMF website that specialises in bile duct cancer. They offer so much specific information on this cancer & there is a very active Facebook page where you may find someone in a very similar position to yourself.
I hope you are being treated at one of the specialist hospitals, if not, you are entitled to a second opinion. I hope your treatment plan goes well without any uncomfortable side effects. Take care x
Very interested in the specialist hospital do you know who they are..I am finding it so hard to find some information out there about my condition I have bio duct cancer and which has gone to my liver and was diagnosis in September last year...Would be nice to even find someone who is going through the same thing..There just don't seem to have much information about it.I did go on the face book page you spoke of but all I seem to read was about the events they where doing to raise money.Maybe I didnt click on the right thing.. I am so worried that this cancer is growing and I don't seem to have any plan if this will be the case.
I had a another look at the AMMF website, I think you had the right page, there are a lot of options. Try the link below (I hope it works, I am not an expert at this kind of thing). Otherwise on the home page you can click on 'patient support' (one of the options in purple at the top). There's lots of info. You maybe interested to look under 'second opinions' where there is a list of hospitals depending where you live.
The Facebook page is 'Cholangiocarcinoma Support (UK & Europe)'. It's worth posting details of your situation and asking for others in the same who could offer advice.
Thank you - unfortunately mine is in a place that cannot be operated so it’s palliative care for me.just started it last week. Hope your husband is doing ok
I have a palliative nurse and have done from the very beginning. Does that mean that they think my cancer is inoperable.. May be thats why I am noy getting any advise on where to go next I am just on the two chemo.
What happens with palliative care.??
But I did ask the question what happens if this chemo doesn't not work.He said they will try a different chemo.
Then when I asked how long does he think I got he said 12months.
He seem to say that without having to think about it.
Maybe I am looking for the negative all the.time I can't help it though cause I am not knowing where or if I am heading to a recovery or just to keep it at bay..Please be that one .
He is thank you. I am so sorry you have that prognosis. Have you thought to look at the Facebook page 'Cholangiocarcinoma Support (UK and Europe)' which is very kind and active. You may find peopled who are in a similar position and having the same treatment? Of course that's a personal decision. I hope you have close circle supporting you.
