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  • #20954
    jpmski
    Spectator

    Bonnie,

    Stents get clogged up all the time. 3 months on a stent seems unlikely to me. My mother was on a 4 to 8 week rotation with them.

    Pay attention to what your husband is saying, he’ll give you signs that it’s getting clogged up. Fatigue, look for yellowing in the whites of the eyes.

    Are they placing the stents via an ERCP or does he have an external drain and the change the stents out that way? Neither way is fun, but the external drains seemed a little easier on my mother to recover from. But her tumor was exceptionally difficult for them to navigate around.

    Having an external drain is not something anyone wants to do, but there are big benefits to it from my point of view. Number one being, if the stent gets clogged and can’t drain, you can open up the external drain and help relieve the pressure on the liver.

    Good luck.

    Joe

    #20955
    marions
    Moderator

    Hang on, Bonnie, we compare this disease to that of riding a roller coaster.
    Hugs,
    Marion

    #20956
    vinnysnana
    Member

    Thank you Catherine & Marion. Your encouraging words are so helpful! He has plastic stents. We don’t know what clinical trials he will be eligible for, so we are anxious for the referral to come through. We just came home from Oschner Hospital stay; Gary will be on continued antibiotics for 2 weeks. Feeling more encouraged. Bonnie

    #20957
    marions
    Moderator

    Bonnie….welcome to our site. I assume your husband had a plastic stent, which can last anywhere from 1 months to 3 months or beyond. Appears you were told that cancer had grown often times though, the stent occludes with sludge and other debris.
    Which one of the numerous MD Anderson clinical trials are you hoping to be approved for?

    Hugs,
    Marion

    #20958
    middlesister1
    Moderator

    Hi Bonnie,

    So sorry you had a reason to find us, but glad you did (and I love the glasses!!!) My mother’s tumor hasn’t required stenting, so unfortunately I will have to hope others can chime in with specific info. However, it is very good to hear that you are pushing to get a consult with MD Anderson. Since this cancer is so rare, it really can make a difference in survival based on where you are treated. And, please know that although not enough, there are many here who were also given the one year prognosis and are still going strong after a year (my Mom is coming up on 3 years). Regardless if things have sped up or not, I would push the insurance company. One thing I have seen is that sometimes the caregivers and patients have to push to make things happen.

    Best wishes to you and your husband that they can get over this hurdle and get a game plan in place soon. If you haven’t been to the main CC homepage, link below may have some info.

    Take care,
    Catherine
    http://cholangiocarcinoma.org/newly-dx/

    #1370
    vinnysnana
    Member

    Hi, my husband was diagnosed this summer. Even before “official diagnosis, he had sepsis while on vacation, in ICU with gall stone blocking common bile duct causing infection. Procedure was done to remove stone & place stent. While he was in hospital we got official diagnosis from Oncologist back home. That was in August. Because of cirrhosis he cannot have surgery or chemo. No radiation because cancer is too close to other organs. We are waiting on insurance to approve visit to MD Anderson Hospitak for clinical trials. Just this week, he bagan running high fever, so we are back at hospital (at least at home) Dr removed stent & placed 2 stents this time cancer had grown & caused blockage. We were shocked that this happened so fast. We were told he probably had about 12 months left. Does this mean things are speeding up? How often do blockages occur? He’s had about one good week since this has started.
    Thanks for your help. Bonnie from New Orleans
    IMG_0170.jpg

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