Any survivors of Cholangiocarcinoma?

pburdick
pburdick Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
My uncle was diagnosed with Cholangiocarcinoma, and has been cured, but experiences pain constantly. He is very despondent, and beleieves he has only 4 years left to live. He desires to talk to anybody that has had Cholangiocarcinoma; just to see what to expect. If you have survived Cholangiocarcinoma, please email me at: pburdick@mccanntech.org. I would like to ask a few questions. Thank you.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Kweis
    Kweis Member Posts: 1
    #3
    My mom was just diagnosed with this cancer a couple of weeks ago. She seems to be in a great deal of pain. What is your uncle doing to help with the pain?
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #4
    Kweis said:

    My mom was just diagnosed with this cancer a couple of weeks ago. She seems to be in a great deal of pain. What is your uncle doing to help with the pain?

    Hello,

    You can also contact this individual through their personal CSN email account by clicking on the envelope icon below their message in case they are no longer checking the discussion boards.

    Take care and be well,

    Dana
    CSN Dana
  • pjc3618
    pjc3618 Member Posts: 5
    #5
    I hope your uncle finds a way to be comfortable. I had a liver resection in jan of 06 and so far I am doing well with very little pain. There is minor discomfort but nothing like you describe.I do not try to guess how long, rather I will fight as long as I am able. What stage was your uncle at when first diagnosed? what treatment did he recieve?thank you for your info Pat
  • godleadtheway
    godleadtheway Member Posts: 2
    #6
    pjc3618 said:

    I hope your uncle finds a way to be comfortable. I had a liver resection in jan of 06 and so far I am doing well with very little pain. There is minor discomfort but nothing like you describe.I do not try to guess how long, rather I will fight as long as I am able. What stage was your uncle at when first diagnosed? what treatment did he recieve?thank you for your info Pat

    So happy to hear your story

    Hi pjc3618, my name is Nina my dad was diagnosed with cholangiocarcinoma in May and got a liver transplant in October thank God. He is doing well and he is scheduled to start quemo tomorrow. I am despretly searching to find people who have gone through this to know what helped what worked and well just to talk to some one going throught the same thing. I would love to talk to you my cell phone number is (832)537-1607 you can call me any time or send me an email. Thank you and God bless you. 

     

    Nina 

  • lil_punch
    lil_punch Member Posts: 1
    #7
    godleadtheway said:

    So happy to hear your story

    Hi pjc3618, my name is Nina my dad was diagnosed with cholangiocarcinoma in May and got a liver transplant in October thank God. He is doing well and he is scheduled to start quemo tomorrow. I am despretly searching to find people who have gone through this to know what helped what worked and well just to talk to some one going throught the same thing. I would love to talk to you my cell phone number is (832)537-1607 you can call me any time or send me an email. Thank you and God bless you. 

     

    Nina 

    I'd be nice to chat with you.

    Hello Nina, I am very happy to hear about your dad's recovery. God works in mysterious ways. I read that you would like to talk to someone in a similar situation. Well I would like the same. My mom was diagnosed with cholangiocarcinoma this past year. She is currently recieving chemotherapy still, but her recovery isn't certain. I would very much appreaciate chatting with you about this cancer. I have found it very hard to cope with my mom's cancer and it has been difficult finding someone to talk to. I hope to hear from you soon.

    Anyone else that would like to talk about bile duct cancer please feel free to contact me.

  • JZ51953
    JZ51953 Member Posts: 1
    #8
    lil_punch said:

    I'd be nice to chat with you.

    Hello Nina, I am very happy to hear about your dad's recovery. God works in mysterious ways. I read that you would like to talk to someone in a similar situation. Well I would like the same. My mom was diagnosed with cholangiocarcinoma this past year. She is currently recieving chemotherapy still, but her recovery isn't certain. I would very much appreaciate chatting with you about this cancer. I have found it very hard to cope with my mom's cancer and it has been difficult finding someone to talk to. I hope to hear from you soon.

    Anyone else that would like to talk about bile duct cancer please feel free to contact me.

    Bile duct cancer research/treatment

    Hi, my wife was recently diagnosed with cholangiocarcenoma. This all started with stones in the gall bladder which were removed with an ercp, followed by laporascopy to remove the gall bladder.  Biopsy of the gall bladder revealed cancer.  Next a liver resection was done along with removal of some lymph nodes.  Bile duct cancer was discovered in the section of the liver that was removed.  We are scheduled for a ct scan tomorrow and chemo to start next week.  We live in south east Iowa and everything up to now has been done at the University of Iowa hospital in Iowa City. We were told that any additional surgery or a liver transplant were not an option.  We have sent all of the records to the Mayo Clinic in Rochester and are waiting for an opinion from them.  Last week I Googled "Bile duct cancer" and up came a link for "Eurekalert science news". Research is being done at the University of Edinburgh in Scotland on a new way to fight bile duct cancer.  It involves a key pathway of cell division that drives tumor growth in bile duct cancer.  This pathway is known as "wnt".  Lab studies have shown that this method of treatment has prevented growth of bile duct cancer cells and has reduced tumor size in test animals. I would be very interested to know if any similar research is being done in the United States.

  • Gregooch
    Gregooch Member Posts: 6
    #9
    godleadtheway said:

    So happy to hear your story

    Hi pjc3618, my name is Nina my dad was diagnosed with cholangiocarcinoma in May and got a liver transplant in October thank God. He is doing well and he is scheduled to start quemo tomorrow. I am despretly searching to find people who have gone through this to know what helped what worked and well just to talk to some one going throught the same thing. I would love to talk to you my cell phone number is (832)537-1607 you can call me any time or send me an email. Thank you and God bless you. 

     

    Nina 

    Cholangeocarcinoma

    Nina, I'm sorry to hear about your dad. My dad who turns 86 next wk was also recently diagnosed as well. He was told by the surgeon at our local hospital it is not operable a nd did not even recommend chemo. We have gotten back all the tests except for a special staining test that was being done on his biopsy slides. They were having a difficult time figuring out where it started ie. liver, bile duct etc. I live in MA so I'm planning to bring him to Dana Farber and possibly UMASS next wk in Boston and Worcester for a 2nd & 3rd opinion. We also have several appt's locally closer to him so we can get several more opinions and pick the best option for him. I was hoping that given his age maybe we could avoid chemo and even surgery if possible. There are a lot of options out there including resection and partial resection, minimal invasive surgery, chemo/radiation, low dose chemo, ablation of tumors, immunotherapy, stem cell treatments etc, holistic approaches etc. Hope that your dad has found a good hospital, doctor and treatment. Next wk will be telling for us.

  • Gregooch
    Gregooch Member Posts: 6
    #10
    JZ51953 said:

    Bile duct cancer research/treatment

    Hi, my wife was recently diagnosed with cholangiocarcenoma. This all started with stones in the gall bladder which were removed with an ercp, followed by laporascopy to remove the gall bladder.  Biopsy of the gall bladder revealed cancer.  Next a liver resection was done along with removal of some lymph nodes.  Bile duct cancer was discovered in the section of the liver that was removed.  We are scheduled for a ct scan tomorrow and chemo to start next week.  We live in south east Iowa and everything up to now has been done at the University of Iowa hospital in Iowa City. We were told that any additional surgery or a liver transplant were not an option.  We have sent all of the records to the Mayo Clinic in Rochester and are waiting for an opinion from them.  Last week I Googled "Bile duct cancer" and up came a link for "Eurekalert science news". Research is being done at the University of Edinburgh in Scotland on a new way to fight bile duct cancer.  It involves a key pathway of cell division that drives tumor growth in bile duct cancer.  This pathway is known as "wnt".  Lab studies have shown that this method of treatment has prevented growth of bile duct cancer cells and has reduced tumor size in test animals. I would be very interested to know if any similar research is being done in the United States.

    WNT

    Sorry to hear about your wife. I have been diong so much research but have not come across this one. I did see a video about a computer navigation system deveopled in Switzerland and Germany where the computer guides the surgeon into the interior of the liver to make it much easier to see where the tumors are and remove them. I also a video from UPMC that talks about a minimally invasive surgery to remove tumors and one from Johns Hopkins where the tie off the blood supply to tuors effectively killing them and the liver regenerates itself. I'm taking my dad to Dana Farber nxt wk for a 2nd opinion to see what options are available there. Best of luck to all.

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