question about pursuing trials

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  • #94685
    jocelynrahm
    Member

    Huge thanks to everyone that responded to my inquiry. Your input was much appreciated.

    #94684
    marions
    Moderator

    Jocelyn…hi again….

    I added a thread for clinical thread. Please use this link:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=16174

    Hugs
    Marion

    #94683
    positivity
    Participant

    I have no experience with clinical trial, but always keep it in mind when the time arrives and we want to try it. I would think your oncologist who is very knowledgeable about CC can suggest the trials available at the particular medical establishment. If you are not pleased with their trials, then try a couple of other top CC cancer medical centers. Here is a link to bile duct cancer clinical trials:
    https://www.clinicaltrials.gov/ct2/results?term=bile+duct+cancer&Search=Search

    #94682
    middlesister1
    Moderator

    Jocelyn,

    Welcome to our group. Although my heart breaks when I hear about a your person being diagnosed with CC at such a young age.

    If you haven’t yet, please read through the homepage for newly diagnosed

    http://cholangiocarcinoma.org/newly-dx/

    Although you’re correct in starting research yourself into available treatments ( I had to push for my mother), it’s VERY important to have your brother’s case evaluated by a multi-disciplinary team who are familiar with CC. We’ve had members who first were told they were inoperable until they went for second or even third opinions. And, my mother wasn’t operable, but has had wonderful success with radiation.

    I’m also hoping by “bumping” your post again to the top that we may get some to chime in regarding how they got into trials.

    Best wishes,
    Catherine

    #94681
    bglass
    Moderator

    Hi Jocelyn,

    Welcome to the discussion board. I am sorry to hear that your brother has been diagnosed with this complicated cancer.

    I do not have direct experience with trials so regretfully cannot address your questions about them, but I did want to offer a little information on the trial you referenced. Like you, I found the write-up intriguing and tried to find out more, but saw that the only location seemed to be Mongolia. It is difficult to know how valid the reporting is on treatments only available in distant places.

    Here is a write-up about a person in Colorado treated for hepatocellular carcinoma with the HCC trial drug mentioned in the CCA trial description.

    http://www.bluefaery.org/blue-faery-stars/

    There should be answers and experiences related to your million questions among the postings on this board. The search feature works well in getting users quickly to needed info. Or just ask your questions to the group.

    Best wishes as your brother pursues treatment options.

    Regards, Mary

    #13244
    jocelynrahm
    Member

    Hi friends,

    My name is Jocelyn Rahm and I’m new to this site. So so relieved to have found it. THANK YOU for being there. So I have about a million questions, but I’ll start with one.

    First some context. My baby brother, Colin (33 years old, dad to Lark who’s 1.5) was diagnosed with CCA in early Feb. after what seemed like an out of the blue diagnosis of PSC in Jan. He just finished week one of his 2nd round of chemo. No scans yet to determine impact of treatment.

    Our family is researching trials in the event we don’t see outcomes we’re hoping for. There’s enough out there that it’s a bit overwhelming. Does anyone have any advice on best practices for pursuing relevant trials that Colin might be eligible for?

    My understanding is that once we have biopsy tissue (the tissue we had on hand went to Mayo so we need to do another biopsy) then we send it to Foundation One or a similar central location and then once we find relevant trials, we have info disseminated? Is this correct? Am I missing anything?

    Also, does anyone know anything about this trial: http://cholangiocarcinoma.org/immunotherapy-of-cholangiocarcinoma/

    We’re trying to find people that have had experience with it or know someone who has.

    Thank you so much in advance for your input!

    Warm regards,
    Jocelyn

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