27 year old husband diagnosed with fibrolamellar hepatocellular carcinoma

emokdc531
emokdc531 Member Posts: 2
in Liver Cancer #1
We found out a few weeks ago that my husband has fibrolamellar hepatocellular carcinoma. They are starting him on Nexavar this week and we have an appointment with Sloan in a week and a half. I was just wondering what questions we should ask when we go or options we have. They have not mentioned anything about surgery, only that he could be able to do a trial.
Any advice or suggestions would be much appreciated.

Comments

  • LeeandShirley
    LeeandShirley Member Posts: 122 Member
    #2
    What questions to ask?
    Dear emokdc531
    If I may suggest, when I am confused about a treatment or anything that is going on, I turn to my family doctor. He has often been able to take the time with Lee and myself to explain things and also, suggest what we may want to address. If you have a good relationship with your family doctor, (as we do), that might be an idea. If you do not, turn to other healthcare professionals who you do. Then again you can browse this site and the American Cancer Society for more information about this. When I am "stuck", I just type in my quiery to the computer and see what comes up. Just type in, "What questions to ask when diagnosed with cancer", and keep browsing till you find a good site. Sloan is an excellent choice for this disease and don't be shy about asking them about what you should be thinking about when it comes to treatment. Be very nosy when it comes to your husband's treatment. Ask them about what else there is and why his treatment vs any other. Sloan will be up with the best available. Hope I have picked your brain enough to help you with this question. All my best wishes to you and your husband and the future "living" with cancer.
  • dvmendoza
    dvmendoza Member Posts: 12
    #3
    you can write me
    Hi there. I have gone through the same with my husband. You can email me at dvmendoza2012@gmail.com and we can set up time to talk by phone if you would like.
    Dori
  • emokdc531
    emokdc531 Member Posts: 2
    #4
    LeeandShirley said:

    What questions to ask?
    Dear emokdc531
    If I may suggest, when I am confused about a treatment or anything that is going on, I turn to my family doctor. He has often been able to take the time with Lee and myself to explain things and also, suggest what we may want to address. If you have a good relationship with your family doctor, (as we do), that might be an idea. If you do not, turn to other healthcare professionals who you do. Then again you can browse this site and the American Cancer Society for more information about this. When I am "stuck", I just type in my quiery to the computer and see what comes up. Just type in, "What questions to ask when diagnosed with cancer", and keep browsing till you find a good site. Sloan is an excellent choice for this disease and don't be shy about asking them about what you should be thinking about when it comes to treatment. Be very nosy when it comes to your husband's treatment. Ask them about what else there is and why his treatment vs any other. Sloan will be up with the best available. Hope I have picked your brain enough to help you with this question. All my best wishes to you and your husband and the future "living" with cancer.

    Thank you for your response!

    Thank you for your response!
  • AnnaA
    AnnaA Member Posts: 6
    #5
    Fibrolamellar searching.....

    Hi,

    I live in New South Wales, Australia. My brother has recently undergone his fourth operation for Fibrolabellar. His first was in 2007. The last three have been in the last 14 months. After his most recent surgery the doctor has said they can't do anymore surgery :(

    I am now on a search to find other patients (particularly in Australia but not restricted to), doctors, families, anyone with a connection to this cancer to share stories, treatments, information and anything we can to help each other. I have started a blog on blogspot under the name Fibrolamellar Australia with my first blog attempt called 'The Beginning' outlining my brothers story with this cancer. I have also started a Facebook page called Fibrolamellar Australia and a group under the same name, all in the hope of connecting people and information. At the moment, we don't know of any other current Fibrolamellar patients in Australia apart from my brother.

    Please have a look, like and share if you would and please help me connect people together. There is such a small amount of information out there and it isn't well connected. Perhaps this way we can join the dots and get our loved ones some help that works.

     

    Thank you

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