My husband with Bile Duct Cancer

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Hi there 

My husband has recently been diagnosed with Bile Duct Cancer and his prognosis is not good at all. He is going to start palliative chemo next Friday, and hopefully his biopsy will show he has a mutant gene which means there is some other sort of drug which not as brutal as chemo. But sadly not life extending  

As you all can imagine we are total rabbits in a headlights and I’m wondering if anyone could kindly give me some pointers and advice as to what is coming down the track. I.e I understand eating seems to be a big problem, any one have any tips  

All info would be great  

Thank you  

ARY

  • Hi  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 sorry to read that your husband has been diagnosed with bile duct cancer and I know what a worrying time this will be for you both.

    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 where the other group members will be able to spot it better.

    Your husband might find that the chemo is not as "brutal" as he expects. I had chemo last year and was given a great long list of possible side effects. Thankfully, except for the fact that my hair fell out, I didn't really suffer with any side effects and your husband might be the same.

    While you're waiting for replies, it would be great if you could pop something about your husband's diagnosis and treatment so far 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.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Thank you. I will do as you suggest. 

  • Hi Ary21 -  I am in exactly the same place as you - my husband is due for his first oncology appointment on 18th September and although we know his cancer is terminal we have no idea as yet what treatment he may be offered.  I'll be following your post to see what advice you might get and then I can use it too.  It's a horrible disease but at least I now know we are not alone.  Thank you

  • Hi Clancy

    i am so sorry to hear your news and indeed if I were you right now, please ask your oncologist to see whether your husband has a mutant gene. If he does, which I hope for you he has then he might not have chemo but a much less brutal drug called Pemgatinib. 
    My husband had his first chemo on Fri 1st and something has gone dramatically wrong. From being able to walk the dog for miles and go sailing, he can hardly climb upstairs. His tummy is bloated and his legs our like tree trunks. 
    It is possibly the most awful disease I know and I’m already grieving about the loss. 
    By all means message me - and I hope I haven’t scared you but the above is where we are right now. 
    I’m not sure where you live. But please message me or if we are close we could meet up. 
    Just an idea. X 

  • I'm so sorry to hear this  - I hope they can do something for your husband and my thoughts are with you.  No you haven't scared me.  My husband has been slowly slipping away from me since his first hospitalization for Jaundice.  He eats very little and has no appetite, he sleeps most of the day and speaks of having back pain so I am concerned that oncology are going to say he's not fit enough for chemo.  Please let me know how you get on with your husband and I would like to message but don't yet know how.  Thank you fo rresponding

  • I’m new to this as well. But I will try and ‘befriend’ you. Hang on! X

  • Hello, My husband has bile duct cancer which is in the liver as well. The chemo sadly didn’t work. His belly has blown up with fluid had it drained a few times, now has permanent drain and district nurse comes 3 times a week and drains off 2 litres at a time. Luckily this type of cancer doesn’t cause pain. He sleeps most of the time. They gave him 3 months in January but he is still here fighting.Terrible disease, no one’s story is the same.

  • I am sorry this happened for your husband.  Glad you have had the extra time with him.  You're right it is a terrible disease

  • If there was a competition your husband would certainly win!  My husband only had 8 litres drawn off.  But the most amazing thing is that his legs and feet are beginning to go back to normal.  So something is working.

    Similar to yours mine is not interested in food, no matter what small morsel I take in to him in hospital, which is very upsetting because if he doesn’t improve and if he has a mutant gene the medicos wont try him on a targeted drug.  He needs to be much more on the ball for that to happen.

    interesting about the pain, as the hospital has given my husband so many/much drugs he is now seeing spiders on the wall, or poor man he has me either side of the bed at the same time time. Thankfully they are going to lower the dose of morphine or codeine (which I think is morphine when it hits the blood stream) 

    So we lurch from one day to the next. As there is always hope I have got in touch with a company who do liquid (blood) gene testing in the hope that it wouldn’t be too late to find another targeted gene therapy for my darling one. But I think I’m just throwing good money after bad.   But at least I am not leaving any stone unturned.

    Please keep me posted. With so much thoughts and wishes.  

  • The palliative care nurse explained to me that the fluid squashes the large veins in the abdomen which obstructs the blood flow so the legs swell. Once the fluid drained the vessels can carry the blood as normal. The fluid can also cause constipation as it squashes the bowel. My husband is at home , I am looking after him , he is in bed most of the time due to extreme fatigue. Luckily he only sees one of me or he would have nightmares. Keep me posted too x