My first posting

Discussion Board Forums Introductions! My first posting

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  • #90883
    jathy1125
    Participant

    grsharp, Welcome and sorry you had to find us. When I was first diagnosed my doctor’s exact words,” I know it will come back a false negative” It took 2 weeks of being sent to Mayo to get my positive biopsy. I have an amazing story I share on my web page http://www.catherinedunnagan.com
    My hero is Dr. Chapman at Barnes_Jewish Hospital, St. Louis MO. Dr. Chapman is from Vanderbuilt and has a great reputation in the CC world. He is speaking at conference this week!!
    Dr. Chapman has been contacted by several CC patients and some have had there prognosois changed for the better. Dr. Chapman is very phone friendly and will only bring you to St. Louis if he can help.
    Please let me know if I can help
    Lots of prayers-Cathy

    #90882
    grsharp
    Member

    Matt, thank you so much for responding.
    Did you have specific genetic markers that made you a candidate for Keytruda? If so, can you tell me which test or company/institution did the testing? Is it working? Cost?

    Dr at Vanderbilt did open liver surgery on 1-18-16 an obtained a sample that confirmed cholangio. (This was 6th attempt to get positive biopsy)

    All we have heard for doctor is that it was positive and that we need to wait 2-4 weeks while liver heals before starting any treatment.

    #90881
    mattreidy
    Participant

    I’m taking Keytruda and not as part of a clinical trial.

    You just need a doctor willing to prescribe it… that and be able to pay for it. Insurance won’t cover it since it’s not FDA approved.

    A clinical trial is the way to go, if possible.

    grsharp wrote:
    Marions, we haven’t asked why a positive biopsy is needed. I guess it just seemed normal that you would need to have a positive biopsy before starting treatment just in case it was not cholangio.

    But is also makes sense that if you are 99% sure then why wait.

    She had another attempt at a biopsy yesterday (the 1st one at Vanderbilt). The Dr said he took a needle sample thru the stent, a brushing and a sample with forceps. We should hear something in 3-5 days.

    I saw on this site that someone had good results using Keytruda. Does anyone know if you have to be in a clinical trial to get Keytruda now?

    #90880
    scott-sibley
    Member

    I had 2 biopsies that came back showing nothing. The 3rd biopsy was c/t guided and thats when they found cancer. It took another 6 weeks to get a cc diagnosis. Originially it was adrenocarcinoma of unknown primary. A meeting of the experts determined it was cc.

    #90879
    pfox2100
    Member

    WE have a member who is on Keytruda and he might be able to chime in at some point. I don’t think it is an “approved” treatment for cc as this time but here is a little info on it…
    https://clinicaltrials.gov/show/NCT02054806—Specifically about the Keytruda

    and
    http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/liver-cancer

    I had a little trouble with my biopsies and have intrahepatic cholangio. I had 2 done…The first one came back negative. My surgeon felt uneasy with those results and therefore had a second one and that is when I got my confirmed diagnosis.
    Hope you find some answers very soon. Prayers to you guys.
    Porter

    #90878
    grsharp
    Member

    My wife is scheduled for an open liver operation on Monday to try again, for the 6th time, to secure sufficient tissue to identify exactly what the tumor it is that is that has blocked the left and right liver ducts where they join the main duct.

    Are there others here that have had so much trouble getting biopsy to sho CC?

    Blessing to All,
    Grsharp

    #90877
    marions
    Moderator

    grsharp…..tissue samples may have been negative for cholangiocarcinoma, but still could present as carcinoma or adenocarcinoma of another cancer type such as lung, colon, breast, colon, or other cancer all with different treatment protocols.
    So sorry for your wife having to undergo these invasive biopsies and now facing open surgery as well. The outcome though is so very crucial to her treatment options of whatever cancer may be identified.
    Wishing for the absolute best.
    Hugs,
    Marion

    #90876
    grsharp
    Member

    Marions,
    I assume that they have not identified a carcinoma. Since all we are told is that the tissue samples were negative.
    Grsharp

    #90875
    marions
    Moderator

    Grsharp…..I am learning along with you. I wonder whether they been able to identify “carcinoma”
    (cancers of epithelial (lining) cells or “adenocarcinoma” (cells of glandular origin) which can be origin of cholangiocarcinoma, but may also be indicative of another cancer type.
    Hugs,
    Marion

    #90874
    grsharp
    Member

    Met with Dr at Vanderbilt to discuss their failed attempt to get a positive biopsy. This is the 5th attempt. He says next step it to do open surgery on my wife’s liver in order to get a tissue sample that will actually show that she has cholangio.
    He again reiterated that a positive bx needed before treatment.
    Because all attempts have come back negative I have looked on internet and found that there are certain very rare cases of something called intraductal papillary neoplasm and intraductal
    tubulopapillary neoplasms.

    So naturally I’m beganinnig to wonder if thses could be a possibility.

    Any info or experience with these by anyone?

    Grsharp

    #90873
    grsharp
    Member

    Marions, we haven’t asked why a positive biopsy is needed. I guess it just seemed normal that you would need to have a positive biopsy before starting treatment just in case it was not cholangio.

    But is also makes sense that if you are 99% sure then why wait.

    She had another attempt at a biopsy yesterday (the 1st one at Vanderbilt). The Dr said he took a needle sample thru the stent, a brushing and a sample with forceps. We should hear something in 3-5 days.

    I saw on this site that someone had good results using Keytruda. Does anyone know if you have to be in a clinical trial to get Keytruda now?

    #90872
    marions
    Moderator

    gsharp…. agree with hercules. Biopsy is required for entering a clinical research study, but not for regular treatments. Have you asked the treating physician as to why he/she insists on a biopsy?
    Hugs
    Marion

    #90871
    hercules
    Moderator

    gsharp, welcome, I hope you find helpful info here. I believe many cholangiocarcinoma patients begin treatments without 100% confirmed diagnosis of cancer. My surgeon at the Cleveland clinic ordered and reviewed a CT scan and that seemed enough for him to go ahead with an early stage resection which was successful and curative. I wish you the best, Pat

    #11981
    grsharp
    Member

    Is it hard to get a biopsy sample that shows cholangio? Doctors have made 3 attempts and all came back negative. They are 99% sure its cholangio but won’t start any treatment w/o positive biopsy.

    MRI and ultrasound, along with PET scan show the tumor to be a little over an inch in size and located where the l and r ducts meet the main duct.

    This has been going on now for over a month w/o any progress or treatment. They were able on, the 3rd try, to place internal drainage stents. She (my wife) also has an external drain on the left.

    We are in Nashville and are interested in any help anyone can offer that will help us get up to speed and headed in the right direction. So far she has been in two different hospitals for a total of 5 procedures, (all requiring anesthesia and breathing tubes down she throat,) for a total of 14 days over the last 3-4 weeks. She is scheduled for a 4th attempt at a biopsy on Monday this time at Vanderbilt.

    She is getting weaker daily. Any thing you can offer will be appreciated.
    Thanks….grsharp

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