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Terminal bile duct cancer

Hi,

looking for anyone who has experience or knowledge about this cancer, my husband who is 45 has just found out recently after becoming jaundice that he had bile duct cancer and advanced and spread to liver, we met oncologist last week and said it was probably stage 3 but he said it can't be removed because of where cancer is! So surgery isn't an option, he then said that it os terminal and prognosis with chemo might give  him 6-12 months!!! I can't get my head round it all!! He is fit and healthy, was never ill apart from jaundice!! Any help would be great i.e. Palliative chemo 

 

thanks amy 

  • So sorry I’m so late with my response,  My stomach pain feels like gas but really isn’t.  Tums helps for me, sometimes.  I still enjoy eating.  

  • Hello I just wanted to know how your father in law is doing?

    My wife had this horrible type of cancer so I sort of know what you are going through.

    I hope you are keeping well under the circumstances

     

    Chris

  • Hi. Hes doing ok bar hes just been admitted for sepsis for the second time. They think he picked up an infection when he had his pic changed. He didnt even know he was Ill until he went abit delirious with a temp he doesnt seem to notice these signs. He acts like hes also getting dementia at times it's getting more frequent now his forgetfulness and clumsiness. We are now into the 7th month month since diagnosis and despite this and all the infections I feel hes doing really well. Thank you for asking and I'm so sorry you have had to experience this with your wife xxx

  • Thank you for replying.

    I understand that it always seems to be hospital visits or appointments. It must be a constant worry for you and your family and especially your father in law. 

    When I look back the whole time was just like a blur. 

    All you can do is support your father in law but remember to try and look after yourself.

  • that is so true. my husband is taking it really well hes one of those people that doesnt worry until its happened. my kids are only 2 and 5 they dont ahve a clue so will be very confused when we lose him but my 5 yr old is aware hes not well but doesnt know what it is.  my farther in law was todl today the chemo is no longer working and they have stopped it for food good now well three weeks ago but he though then he was just on a break before they put him on a really argessive one but now opted against it saying they dont think his body will handle it as hes already gone from morbidly obese to a very very very slim much older looking man. its awful hes always been a big guy. he seems ok but im so worried now hes on nothing for the cancer that we will lose him quick, that seems to be the pattern ive seen?

     

  • Hi 

    so glad I came across this chat room, My Mam was diagnosed with bile cancer in June, it’s at stage 4 oncologist has predicted a few short months.

    My Mam has always been thin but now weighs 4.7 stone , apart from that she seems good , still eats and we are making positive plans to keep her going 

    I’m finding it hard to believe, she’s not on any medication as she says she’s fine chemo was only going to add a couple of months so she has decided against it, really at this time it’s the mental health im deeply worried about , her stomach is swollen but she says it’s just discomfort.

    I hear her cry at night and she’s terrified of sleeping, but by day she’s in good mood.

    Im finding it hard to believe she’s only a couple of months , she is linked with palliative care but hasn’t availed of services yet 

    it’s just the mental health particularly at night , I’m totally distraught at what lies ahead , but yet still think she’ll go on for a lot longer as no severe symptoms have presented......

  • hi I’m so sorry to hear this the swollen belly is asites which I prob spelt wrong my dad gt diagnosed same in 12 March same gave him 6 to 12 months then 2 weeks lata had his stomach drained with a pipe in his side no pain felt fine drained 4 litres of this water cause he had this they gave him a few months saying it’s more advanced even when they checked it for cancer cells it was clear I gave him this good new on Monday 20 th May nxt day he had internal bleeding and sadly died  I’m still in shock now all I can say prepare yourself to be strong for your mom also my dad would have oramorph on the night which would knock him out but only for few hours the palliative care will give your mom this also cushion to her her be comfortable ask you if your mom wants to claim attendance allowance which they allowed my dad a week after he dies it’s a awful but very quick within going Hosp he was dead in the hour plZ be strong get all ya moms wishes in order so atleast you know what to do . It’s horrible to talk about but had to be done tell her every hour how much you love her and what a great mom she is and has been and hopefully mom will find peace in that I wish you all the best I’m here if you ever want to speak to me I still find this a comfort in some strange way god bless you all char xxx

  • oh I am so sorry you are also going through this horrific disease with your mum. 4st7 oh that is tiny isnt it.  I personally dont think they can put a date on it they have never told my father in law how long he has as they dont know as hes totally fine, one nurse told him 'most die within a year' that sent pure panic to him as he was 6 months in at the time and feeling great, safe to say she got in alot of trouble as it wasnt her place to say that. He's the same but is on anti depressants now hes very low but trying to be happy around everyone. His chemo has now stopped so we now all feel like this is just us waiting for the end but it doest feel real as he is so well he just looks like an older man instead of 66. Your Mum sounds like a fighter even though shes upset at night that is to be expected shes terrified like we would all be and shes lucky to have you there for her. Keep your chin up we are here for you whenever you need to let it out xxx

  • Hi there. So sorry to hear about your dad. My mam is in the exact same boat, it's madness how such a terrible illness can come on so quick with no warnings. 

    My mother was diagnosed on the 1st of July this year. We were told it was terminal with a 'couple of months' to live. At that stage my mam was fine, seemed her normal self apart from napping every hour. (she's 69) Since then she's had 3 internal liver drains put in, 2 stents, and an external drain with a bag on her side. Every other week she's had some sort of procedure. 

    My mam was suffering very bad with nausea and all of the above procedures have reduced this significantly. 

    We were initially told that my mam should consider not doing chemo as the side effects may make her remaining time more unpleasant, she agreed. Since then my mam has changed her mind and is considering doing chemo but at the moment she is in too much pain and her pain needs to be under control before she can do it. 

    The hardest part of all of this is that she's bearly eating or drinking anything. However, through all of the pain and tears, my mam still remains very positive which is a huge help to herself and the rest of the family.

    I'm also from Ireland. I'd love to keep in touch considering we're both going through the same thing. I'm here if you need a chat. 

     

  • It’s awful I remember when my dad just didn’t want to eat and the nurses said don’t push him but I reminded him that we’re going to fight this together and that he does have something to fight for all I can say in my experience is make every day count my dad was fine on the Monday eating fresh roe and chips for dinner and Nxt day internal bleeding and dead  where his state of mind wasn’t there so just tell her what a great mom nan gran she’s been and your gonna fight it with her I wish you and your family all the best I really do and make sure you no all her wishes to it’s so important xxx