Any advice will be appreciated

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    Dear Rosina,
    Chemo can really wipe a person out exulting in extreme fatigue, nausea, weakness, etc. Plus, coping with such an unexpected and devastating diagnosis can be overwhelming. It seems to me that very patient responds in their own way. It sounds like your brother is too weak to do much of anything at the moment and his way of coping may be to shut down. As upsetting as that may be to your family, it’s okay. I’m sure he is doing the best he can under the ircumstances. I wouldn’t try to force him to talk about it. However, you and others close to him can talk to him and try to encourage him. Perhaps you or someone in your family is able to take the lead in researching treatment options for your brother. In my husband’s case, his job way to rest and feel as well as he could. My job was to research to understand what we were dealing with and to identify the best treatment options. It looked very bleak for a while but we did get several expert opinions advising us to get the chemo in an attempt to achieve enough tumor shrinkage to be able to have surgery. That is what we did and then we found a surgeon that was capable of performing the very complicated resection. I would encourage you to find the most expert medical facility in your general area, one highly experienced with cc, and work with them. You can let your brother know that his current docs may not have all the answers but you will find an expert to guide you. Also, perhaps sharing some of the success stories from this board may give Jed some hope. All my best, Debbie


    My brother has done two weeks of chemo.
    Has lost a lot of weight and can barley eat more than a mouthful a day, he is sleeping constantly and feeling just so horribly sick..
    he doesn’t want to speak about anything at all.. and with all the family here we are trying our hardest to help him feel comfortable in any way it’s just horrible seeing him like this.. is there any advice from anyone at all that can help us help him to talk and vent and eat and FIGHT. ??


    Sorry to hear about your brother, 33 is so young. My mum was diagnosed in January 2016 at the age of 59. Its a bit like a loved one being handed a death sentence but not really knowing what they have done to deserve it.

    So if he is jaundice they will look to fit a stent. Even after the stent is fitted it will take 2-3 weeks or so for the yellowing and itching to go. He will just have to ride it out im’ afraid. IV antihistamines will probably be given while in hospital, they will knock him for six though and he will sleep like crazy. Not a bad thing though!

    Chemo has been the main topic of this year for the family. My mum completed 8 cycles of Gem / Cist the two drugs which have the best rates of success. Your brother is young enough that I cant see why they wont give him that combination as long as his kidneys are strong enough. My mum didn’t do to bad on the drugs to start with. Minimal side effects. No hair loss. A little sickness and tiredness. Sadly whats taken its tole on her is the infections caught from no immune system. Something thats still ongoing. We had a scary moment a few months back where she got a blood clot on the brain and all treatment was stopped. Thankfully she fully recovered with no lasting effects. She has also just come back from a really bad infection that lead to blood poisoning two weeks ago which she is also on the mend from. She has also had her second stent fitted last week,, which is a good run as they need replacing often. Sadly she catches every cough and cold going. We are just waiting to see when she starts the next cycle of chemo..

    The point of me telling you all that is not to scare you, but take it from me, your brother will hate the site of hospitals soon. However if something seems wrong, a high temp, they are not feeling right. You simply MUST take them to the hospital, no matter how much resistance they put up. The chemo drugs are so strong, and can cause so many issues, you can’t risk it. At 33 I think your find he will cope well with the side effects and I wish him all the luck with whatever drugs they put him on.

    Ok some good news, as thats what we want to know right, we see the crap statistics and spend hours worrying! In 11 months the last tumour scan showed the cancer had grown 2mm, and the tumour found on the lungs which made it no resectable for my mum had grown 1mm. Don’t give up hope.

    RESEARCH.. get to know what your fighting. Cannabis has been a blessing during all this for my mum. Someone so anti drugs previously! The research is promising, of anything out there it seems to have the most scientific based results. Its not some miracle cure. It does help her sleep, eat well and generally combat the chemo drugs. She has been on cannabis oil since we found out! She also takes lots of supplements and despite her on going resistance, we do try and make her eat healthy foods.

    We have not got into the clinical trial side of things yet. Of course one hopes were never have to, but its another weapon we have up our sleeve if and when we need it.


    Dear Rosina, welcome to our remarkable family and the best place to be for CC support. I had posted yesterday to welcome you but it is gone so I shall post again. I am sorry to read about your brother but wanted to tell you that many have posted who were advised NO to surgery, the ideal treatment. After chemo that shrunk the tumor they went onward and were able to have their surgery. Also we are huge believers in 2nd and 3rd opinions as different DOCs see different things. Wishing you and your family the very best and I know others from Australia will be along to help out as well. Please keep us updated on Jed’s progress,


    Hi everyone,
    My 33 year old brother in Western Australia has just been diagnosed with bike duct cancer. Have been told it’s incurable (can’t be surgically removed)
    He had terrible jaundice and after two months of false diagnoses we were told The horrible news.
    He starts chemo next Tuesday and my family and I would love to hear any advice or similar experiences or positive outcomes from this rare disease.
    Thanks for reading.

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