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Thread: Cholangiocarcinoma

  1. #1
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    Cholangiocarcinoma

    Hi, my name is seli. My mother was diagnose with this deadly cancer few weeks ago. We took her to university hospital of cincinnati & was there for a week. The Doctors told us that there is nothing they can do for her except to put her on chemo for whatever time that she has left. I believe in miracles, & I'm not letting any doctor take my hope & faith away regardless what they say. I'm not sure if you are still using this web & i hope you are. I'm not sure if your case was like my mom's. Her situation is, mother has removed her gallbladder about 2 months ago & it was then there discovered that she has a stage 3 gallbladder cancer. Unfortunately, she was visiting in Ethiopia when she was diagnose & she was very week to travel. She finally made safe here to U.S. about a week ago. We took her to University hospital of Cincinnati right away, & was there for the a week. Now she is home with us. The doctors told us that the type of her cancer is Cholangiocarcinoma cancer. she had CT scan & they're saying the cancer is showing on & around her small intestine which is preventing her from eating much, as well as on her blood vessel on & near the her liver. The doctors told us that there is nothing they can do for her beside to put her on chemo for whatever time that she has left. They're giving us few months. I've searched, & read lots of amazing survivors stories and found out that for this kind of case it is usually recommended to have a surgery called Whipple surgery which a very risky surgery. On mom's case, the drs. are saying they won't be able to do that for her 'cause the cancer is showing on her blood vessel & they're claiming, it's impossible.

    They already made their mind about her life. They believe she doesn't have any hope. I don't believe that. I want to hold on to my hope & faith 'cause that's more powerful & helpful. I also believe in miracle but I can't sit & just wait for miracle to happen. I have to search for it; therefore, I'm asking for anyone to help me out with any information. My mother is also a type II diabetic. As it is because the cancer is on her intestine, she's having hard time eating. she eats very little & the doctors like i said they're not being helpful. I would like to know from anyone who is type II diabetic or who knows someone with type II diabetic who was diagnose with this deadly cancer, what we would be good to feed her. She is now in Cincinnati OH & will start her chemo by the end of next week. we will kindly appreciate it if anyone can share with me any info, Did you have same problem? Where did you go to? What kind of chemo cocktail were you on? How soon did you see the result? Where you able to have the surgery after wards or even before the chemo? Who was your surgeon? Did you have to have radiation to? Please help me help my mom.

  2. #2
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    Hello,
    I was 34 when i was diagnosed with Cholangiocarcinoma in 2009. I had a 12cm tumor in my liver and went through a 11-hour surgery to remove 70% liver and gall bladder.
    I had waived chemo/radiation therapy. I am still very healthy after two years (and I intend to keep it that way !!). Don't lose your hope!!!

  3. #3
    Administrator Top User brainman's Avatar
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    Hi Seli and mswang530. I moved your posts and created a thread for you because the thread you posted to is very old and now of those members is active. Hope both of you find what you need. I have not heard about Cholangiocarcinoma so cannot be of much help.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  4. #4
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    Hello-
    Just found this website. My sister was just diagnosed with this after months of not knowing the primary site of her cancer. She had already been through two separate rounds of radiation, 2 chemo treatments & spinal surgery (several tumors there). It was only after she developed jaundice that they discovered her bile duct obstruction w/ some liver involvement. She had stents placed in both her bile duct and urethra.

    Her appetite never came back after the chemo & now she is dealing with severe edema. She wants to get more chemo (MD said prognosis was 3-6 months w/o chemo & possibly one year with chemo), but they are waiting for her edema to subside. Surgery was never mentioned as an option.

    I'm sorry I can't give you much more info, but plan to actively find something to help stimulate her appetite. She also has diabetes, so eating is extremely important. Wish she lived in a state where medical marijuana was legal!

    Seli, you posted several months ago, so I hope chemo helped your mom.
    mswang530-I loved hearing about your experience!

  5. #5
    Administrator Top User pbj11's Avatar
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    Hi Wombat,

    Welcome and I'm sorry you have to be here. Have your sister ask the doc for a prescription for Marinol. It's essentially prescription marijuana to enhance appetites. I think there is another product out there, but can't remember. I'm sure they've outlined a diet that is appropriate for diabetes. She has to eat --- no ands, ifs, or buts about it. She needs the strength to fight the war when chemo is knocking her back.

    I'm sorry it took them so long to figure this situation out, but glad she's been having treatment.

    Sorry about the edema, but liver cancer seems to go hand in hand with swelling, especially at later stages when the liver is more compromised. I hope they can get it handled.

    God bless and you'll find a lot of support here for this difficult journey.

    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  6. #6
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    Just coming back from MSK in NYC where the doc said my wife probably has ICC (intrahepatic cholangiocarcinoma). She was diagnosed with met. Adenocarcinoma stage 4 on the liver in Dec. She's bed bound now and probably won't do anymore chemo.

  7. #7
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    Question Mom Recently Diagnosed with Cholangiocarcinoma

    Mom's story began when she started losing weight and feeling tired all of the time. Mom has always been the heart of our family and prides herself on taking care of our family. Her favorite thing to do is to have the entire family over for BIG family meals as she is an amazing cook.
    In April she went to the family dr who ordered some tests only to find out she had a 13cm tumor in the right lobe of her liver. She was then referred to the James Cancer Center where she underwent further tests and a biopsy to find our she has Cholangiocarcinoma. Sorry I don not know what stage but we have been told that she in not a candidate for surgery or transplant because she has cirrohsis (unsure how she got that as she has never been a drinker ever). Right now they are saying her cancer is not curable and they will give her chemo to see if that helps to shrink the tumor to give her some comfort from the pain and nausea.
    This was a condensed version of everything she has been through but I would welcome and information or sharing stories with any one else dealing with a similar situation.
    My mom is an amazing, christian lady who is facing all of this with dignity and grace that I am in awe of. She is my hero and I am sooo not ready to give up on having her here with me until she reaches her 90's. She is only 65 and this family and my incredible father need her. God bless every one of you on this thread!

 
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