Helping family

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  • April 21, 2011 at 6:11 pm #49857
    gavin
    Moderator

    Hi Vanessa,

    Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your Grandfather. I am glad that you have joined us all here as not only will you get a lot of support from all of us but you will also find out a lot of information as well. Please feel free to ask any questions that you have and we will all do what we can to help in answering them.

    Do you know how much experience the doctors who are treating your grandfather have in dealing with patients with CC? If you are unsure of that then please ask them as CC is so rare. Also as the others have said to you, seeking further opinions from other doctors is also an option. Here are some links that may be of interest to you should your grandfather wish to seek another opinion.

    Major treatment centres in the US –

    http://www.cholangiocarcinoma.org/majorcancercenters.htm

    And a list of doctors and medical centres created by the members here –

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

    I hope that you will keep coming back here and please keep us updated on how your grandfather is doing. We are all here for you.

    My best wishes to you and your grandfather,

    Gavin

    April 21, 2011 at 1:09 pm #49856
    lainy
    Spectator

    Hello Vanessa and welcome to our wonderful family but sorry you had to join us.
    If the tumor has not spread I am wondering if they would consider Cyber Knife?
    It is non evasive and Chemo is not needed then. The tumor has to be under 7cm. My husband had it a few years back and it is done like lazer beams. We are big believers in second and third opinions as well. Best wishes for your Grandfather and please keep us posted.

    April 21, 2011 at 5:57 am #49855
    slittle1127
    Member

    Dear Vanessa –

    I am so sorry about your grandfather’s diagnosis. I can only offer this – my husband had cc from the pancreatic duct and he did opt for chemo and he had NO ill effects from his particular cocktail. Everyone reacts differently, but chemo does not always make someone sick or lose their hair or diminish their quality of life. My husband’s quality of life was better on chemo than without. You have now become a member of our family and we welcome you to this site at any time. Please vent, ask questions, share your grandpa’s progress, whatever you need. Attitude is the best medicine. Blessings, Susan

    April 21, 2011 at 3:38 am #49854
    kimcirucci
    Spectator

    Hi Vanessa. I second what Jim said. I am also alive today because of Dr. Kato. Jim and I are lucky enough to have crossed paths with such an amazing and brilliant man. Please check into every resource you can. Dr. Kato is certainly a miracle worker and perhaps it’s worth giving him a call. If you need any info on Dr. Kato, please let me know. Best to you and your family. Stay strong. I will keep you in my prayers.

    April 21, 2011 at 1:28 am #49853
    jim-wilde
    Member

    Vanessa, sorry you had to find us. This is a rare cancer (cc), and the very best care is typically only found at big city major cancer centers. I was treated at Columbia Presbyterian ( known as NY Presbyterian), which is nowhere near where I live. You want to make sure whomever is treating your grandfather has significant CC experience. There’s only about 2000 cases per year in the US. I was operated on several years ago by Dr. Tomoaki Kato, and so far am still cancer free.

    Best of luck with your grandfather.

    April 21, 2011 at 12:59 am #5049
    van1300
    Member

    Hi,

    My name is Vanessa and I am a medical social worker. My 78 y/o grandfather was just diagnosed with a Klatskin tumor at the bifurcation of the right and left hepatic ducts. His MRI shows no signs of mets to any other organs. When they went into to do an ERCP with brushing and to put in a stent, they found the tumor blocking and did not place a stent.

    He will be following up with a doctor here at FL Hospital for surgical options. I am not sure yet what these might be or what his other treatment options are. He has stated that he does not want to do chemo, but would be open to radiation.

    I am trying to help my grandparents navigate through this process with the medical knowledge I have gained from working inside the hospital.

    If anyone has anything to share, I am more then willing to listen. I am glad I found this community.

    Thanks!

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