anyone else dealing with ulcerative colitis /PSC/ IntrahepaticCC?

Discussion Board Forums General Discussion anyone else dealing with ulcerative colitis /PSC/ IntrahepaticCC?

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  • #19127
    gavin
    Moderator

    Thanks for that Billy, much appreciated.

    My best to you,

    Gavin

    #19126
    vtkb
    Spectator

    For those with PSC that contributed to their cholangiocarcinoma, here’s an overview I found of current and potential new medical treatments for the PSC:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4707427/

    I would think that by controlling the PSC (which caused the cholangio in pts with UC/PSC) there should be a better chance of controlling cholangiocarcinoma recurrences.

    Also, I found anecdotes of people being treated with oral vancomycin having good results and even someone reporting remission of the PSC based on MRI findings. Of course there are also stories by patients in which it did not work. This treatment is based on one doctor from Stanford who started to use it in pediatric patients. Currently there’s an open clinical trial, but unfortunately people with cholangio are excluded from the trial:
    https://clinicaltrials.gov/ct2/show/NCT01802073

    -billy

    #19113
    marions
    Moderator

    Regarding : UC diagnosis vs. active UC diagnosis, the way I understand it those with active UC run a higher risk of developing cholangiocarcinoma.

    Hugs
    Marion

    #19114
    gavin
    Moderator

    Link is here for all of you bargain hunters out there!

    http://cholangiocarcinoma.org/get-involved/donate/other-ways-to-contribute/

    Thank you!

    Gavin

    #19116
    lainy
    Spectator

    THANK YOU Billy for reminding us of our benefits from Amazon! So important and a very timely reminder!

    #19115
    vtkb
    Spectator

    Lainy,

    Other than the initial diagnosis of UC in 2007, its been in remission. Her last colonoscopy showed no signs of UC, which is what made this diagnosis (cholangio) that much more shocking. I for sure thought Kathy had just an adenoma after the initial ultrasounds results.

    On another note, especially as black friday/cyber monday is here, I’m glad I found the link for amazon smile . Perhaps this weekend would be a good time to remind the community that using amazon smile can benefit the foundation?

    #19125
    lainy
    Spectator

    Marion, WOW! Every time I see these articles about Ulcerative Colitis and how bad mine was, I thank G-d I finally did the Colostomy and got my life back. Scary even thinking what could have happened. I know this is not CC and I am grateful for that but would like to say to anyone who has UC, get it taken care of, it sure ‘ain’t’ worth tempting CC.

    #19117
    marions
    Moderator

    Billie…most likely already you have noticed that ulcerative colitis is considered a risk factor for cholangiocarcinoma:
    Having colitis or certain liver diseases can increase the risk of bile duct cancer.
    Risk factors for bile duct cancer include the following conditions:

    Primary sclerosing cholangitis (a progressive disease in which the bile ducts become blocked by inflammation and scarring).
    Chronic ulcerative colitis.
    Cysts in the bile ducts (cysts block the flow of bile and can cause swollen bile ducts, inflammation, and infection).
    Infection with a Chinese liver fluke parasite.
    https://www.cancer.gov/types/liver/patient/bile-duct-treatment-pdq

    Enjoy your Holiday.
    Hugs,
    Marion

    #19118
    marions
    Moderator

    You are welcome.

    #19119
    vtkb
    Spectator

    Thanks for the link, very helpful

    #19120
    marions
    Moderator

    Billy…..thought to include the updated Bile Duct Cancer (Cholangiocarcinoma) Treatment –Health Professional Version for your view. It is comprehensive and outlines the general approach to treatment of this cancer:
    https://www.cancer.gov/types/liver/hp/bile-duct-treatment-pdq?cid=eb_govdel#section/_71

    Hugs,
    Marion

    #19121
    marions
    Moderator

    Billy…..liver transplantations for ‘hilar CCA” undergo a strict protocol i.e. a few nodules no larger than 2 cm in size. In general, mainly stage I patients can become eligible. There are a few reports on transplants for intrahepatic patients, but as far as I recall the outcome has not been as expected.
    It’s a highly controversial issue and the majority of transplant surgeons refuse to transplant ICC patients. Donor transplantation is unlikely to change the course of action.

    I believe the majority of physicians follow the NCCN guidelines: ICC First Line treatment : Resection.
    Ironically, I just came across the current compendium updates: https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=26

    There seems to be a link between this cancer and things that irritate and inflame the bile ducts.
    We have a few reports from UC patients developing cholangiocarcinoma minus the PSC diagnosis, but I don’t think there is not enough data to substantiate a direct link.

    You are doing everything right, dear Billy, by trying to stay ahead of the game.

    Hugs
    Marion

    #19122
    gavin
    Moderator

    Hi Billy,

    Hopefully Marion will be able to offer more insight into the transplant criteria in the US as it stands right now but these things change as well so please do not give up hope either. Have you had a read around the transplant and surgery board here on the site as well?

    Best wishes,

    Gavin

    #19123
    vtkb
    Spectator

    thanks gavin

    yeah Im pretty sure Kathy does not fit transplant criteria here in the US, i was just seeing if theres another way

    #19124
    gavin
    Moderator

    Hi Billy,

    Found a few links for you and hope that some of them will be of use/interest.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3125451/

    http://annonc.oxfordjournals.org/content/10/suppl_4/S308.full.pdf

    http://www.cancerresearchuk.org/about-cancer/type/bile-duct-cancer/about/risks-and-causes-bile-duct-cancer

    http://www.cancer.org/cancer/bileductcancer/detailedguide/bile-duct-cancer-risk-factors

    As far as transplants go in the US, I think the criteria is quite strict for eligibility but I think Marion will know much more about that then me as the criteria may have changed. I know that here in the UK for example transplant is not an option for CC patients. Hope some of that is of use to you.

    My best to you and Kathy,

    Gavin

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