Introduction

Discussion Board Forums Introductions! Introduction

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  • #52072
    dlm2010
    Member

    Ginger, I live in Derby, Kansas. My husband, Ted was diagnosed with Cholangiocarcinoma (Klatskins Tumor) in August 2008. His tumor was unresectable. We went to John’s Hopkins hospital in Baltimore, Md. However,
    he received followup treatment in Wichita. The surgeon in Wichita, Dr. Duane Osbourne was instrumental in setting us up with a colleague at Johns Hopkins, Dr. Pawlik who performed the surgery. Both wonderful! Dr. Osbourne is very familiar with CC. You might try to contact him and get an opinion. Ted’s oncologist is Dr. Parva Reddy (Cancer Center of Kansas) in Wichita, he is also familiar with CC and his treatment plan has worked well for Ted. He was recommended to us by an oncologist specializing in Bile Duct Cancer from KU Med. Center. Ted also received daily radiation from Dr. Joseph Kelly at the Cyberknife Center in Wichita. Excellent doctor! If your daughter needs to have surgery you really need to be at a hospital like Mayos, MD Anderson or Johns Hopkins where a team of surgeons specializing in CC will be able to help you. The doctors I have mentioned above are in Wichita and able to advise you. Ted’s tumor was unresectable but was treated with Xeloda and Radiation and he has responded well, to the point they can’t see the tumor on the PET/CT scans and MRI tests that he has done every 3 months. It has been almost 3 years since his diagnosis and we are very grateful to all the doctors that treated him. If you would like to talk anytime, please let me know and I can share more information with you.

    #52071
    marions
    Moderator

    Hi Ginger….I echo everything mentioned by the other members. Make sure to gather all medical records pertaining to diagnoses of this disease. This includes physician report, blood tests, CT scan, etc. We will help you along. All my best wishes,
    Marion

    #52070
    pcl1029
    Member

    Hi,
    You can use the ginger root juice anytime for your daughter’s nausea/vomiting.
    Chinese have use this method for thousands of years even for pregnant women .
    I strongly recommend a 2nd opinion from Barnes Jewish Hospital as the other suggested.Your daughter is young and the age factor is on her side.
    God bless.

    #52069
    jathy1125
    Spectator

    Hello Ginger -Welcome and sorry you had to find us. I am a CC survivor!! There is HOPE. I was diagnosed 3 years, and 3 days ago ! I have been cancer free for 2 years. I was treated by the best, Dr. William Chapman at Barnes-Jewish Hospitable in St. Louis MO. I can never say enough good about this man, he is the kindest, compassionate and knowledgable doctor. I am only alive because of God, 2 strangers, and Dr. Chapman.
    Please read my story at thetelegraph.com under christmas miracle, it will give you HOPE. Barnes is considered a cholangio center. I stongly encourage you to contact Dr. Chapman. Please feel free to contact me, I believe God saved me so I can share my story to give HOPE to this awful cancer.
    Lots of prayers-Cathy

    #52068
    lainy
    Spectator

    Hello Ginger and welcome to our wonderful family but sorry you had to join us.
    Yes, we will help as you have come to the right place. What is her diagnosis, like where is the CC located and has the doctor said anything about treatment yet?
    It is a big shock to hear this like being hit in the gut with a bat. There is hope and there are many avenues of help. I would like to suggest that you read up as much as you can about CC as knowledge is the best way to beat this. If you can tell us more about the diagnosis we can give you more specific answers. It breaks our hearts to have such young people getting CC.
    For now make sure your daughter’s doctor has experience with CC, many do not. Find out what path he suggests you take. If you can tell us more it would be helpful.
    We highly believe in 2nd even 3rd opinions and you are not too far to one of the best Hospitals for that, which is Barnes Jewish Hospital in St. Louis. They have had a lot of experience with CC.
    We are here for you.

    #5513

    Hi, my name is Ginger….my daughter was diagnosis with cholangiocarcinoma. Where do you begin????? this is shocking. Help me to get going and help my daughter she is 38 years old, and mother 1 son 19 and 1 daughter 2. Its like I don’t know what to think, say, ask, ……we where told yesterday. I want support, counciling for both of us and possibly my grandson. We live in Wichita Kansas…..is there someone out there that is willing to help me?

Viewing 6 posts - 1 through 6 (of 6 total)
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