Update on LY2801653 clinical trial

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  • #79208
    jscott
    Member

    So much great news on clinical trials…Maybe this is what progress feels like!!

    Kris, I am so glad you are doing so well. I remember asking about multi-year survivors w/o surgery. When I heard your story, I thought it was very inspirational. Keep on keeping on!

    I’ll add this info to the wiki tomorrow.

    congrats,

    Jason

    #79207
    lainy
    Member

    Hey Cookie, fantastic news! I am so excited for you, hope the goodness keeps on giving! You know I wish you the very best and more good news!

    #79206
    marions
    Moderator

    Kris..”decrease” and no new “mets”, incredible, beautiful news. I am absolutely, positively thrilled for you. Do you continue on with 28 day cycle?

    Also, thanks for compiling your in one thread. As soon as Rick get’s to it, he will add a “sticky.”

    Hugs,
    Marion

    #9481
    kris00j
    Member

    Hi, everyone. I am now on cycle 11 of this phase 1 clinical trial, and all is better than hoped for.
    To recap, I had multiple treatment paths. 3 different chemo courses, 1 SBRT radiation round. The radiated areas are still nice and quiet after 1-1/2 years, but I had a new met to a more distant lymph node last April. So, I packed up my attachment to Sloan Kettering and entered a clinical trial at Fox Chase, only 20 min. from my house.
    11 cycles (a cycle is 28 days) and I am more than happy!
    The affected lymph node is considered stable, although there has been minimal decrease in size. That’s DECREASE! And no new mets!

    To recap the trial, LY2801653 is an Eli Lilly drug that is as yet unnamed. It is an inhibitor. Not to be confused with immunotherapy. But not chemo. The long term side effects are not well known, as I am one of the first 50-60 to take the drug and be documented, especially long-term.
    The drug itself is designed to prohibit further growth, and so is working quite well for me.
    Known side effects can be bad, but rare. I know they are particularly concerned with kidney functions. And I met a gentleman who had an allergic reaction to the drug. His whole face/body was covered in hives. Obviously, he was removed from this trial.
    The side effects I’ve noticed are swelling in the hands, feet and face. Thinning hair, weight gain, and possibly tiredness. And itchy, pimple-like eruptions on face, scalp, neck and upper torso.
    No nausea, no vomiting, no constipation or diarrhea.

    Now, for more information… This drug has continued to phase 2.
    I do not know if it is still open or closed. But the restrictions are tight. The patient can have had 1 treatment path. And the drug is now being paired with cisplatin. I did not ask my onc if she knew anything about the new phase and how it’s going… I will try to remember to ask in 4 weeks. (I also forgot a few of my own questions).

    For anyone interested in the previous posts about the trial, here is the link: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9818

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