My husband Dx 4/19

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  • May 10, 2019 at 9:20 pm #98547
    bglass
    Moderator

    Hi Patti,

    Thank you for the update.  Chemo plus radiation after surgery is a typical treatment if the surgery outcome identifies risk factors for recurrence.  In my case, for example, I had four cycles of gemcitabine with capecitabine followed by five weeks of radiation with capecitabine.  If this is the treatment your husband will follow, you can read about it by internet-searching “SWOG S0809” which is the name of the clinical trial for this regimen.

    A number of patients and caregivers describe their experiences with the same regimen on the boards, so you may wish to search this site as well.

    Regards, Mary

    May 10, 2019 at 5:26 pm #98546
    Pspino418
    Spectator

    Thank you Mary. We met with one oncologist today and will be going to the University of Maryland Medical Center in Baltimore Tuesday.

    Today’s appointment was informative. He suggested radiation and chemo combo  first to try to prevent further disease progression as Jim did not have negative margins, but displasya and Ca in Situ  remaining after his CBD resection.

    He did have one node positive of 6 and they have said this is Stage IIA.

    We are fortunate to have a friend in the field that is guiding us and help us make decisions.  It is all so overwhelming.

    I dont know if this post makes sense, but please feel free to ask questions or tell me if I post incorrectly.

    Love to all

    Patti

    May 7, 2019 at 7:27 pm #98533
    bglass
    Moderator

    Hi Patti and Jim,

    Welcome to our community, but I am sorry to hear about Jim’s diagnosis.  I hope your meeting with the oncologist goes well.

    There is a lot of good advice on the Cholangiocarcinoma Foundation website for newly diagnosed patients, and the patient stories on this website will give you a feel for this rare cancer and the questions to be asking doctors.  I guess the principal question I would recommend is to be sure your doctors have experience with cholangiocarcinoma.  Ask how many similar cases your doctor sees in a typical year.

    Please let us know how it goes with the oncologist and send any questions our way.  One positive thought to keep in mind is the science for our cancer is evolving rapidly and every year new treatments are emerging.

    Take care, regards, Mary

    May 6, 2019 at 11:41 am #98529
    Pspino418
    Spectator

    Hello

    My husband was just diagnosed this Spring. He had the bile duct removed with dysplasia margins. One of six lymph nodes was positive. We meet with oncologist 5/15. He is 64 years old. I plan to read a lot on the site. If anyone has advice, please feel free to let me know.

     

    Patti and Jim

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