Clinical trial: Abemaciclib + pi3k inhibitor + Faslodex

mazie73
mazie73 Member Posts: 74

Hi all,

I've been meaning to post for awhile about my experience on an Eli Lilly-sponsored clinical trial I'm participating in. (I'm at Moores Cancer Center at UC San Diego.) My original cancer was strongly ER/PR+ and a biopsy of a subcutaneous tumor on my abdomen in early January revealed that it hadn't changed — that tumor, about the size of a lima bean, was my red flag that something was wrong. My MO, and others in her office, were totally perplexed as to how it ended up there. Subsequent CT and bone scans found numerous bone lesions (hips, pelvis, ribs, spine, femur, shoulder blade, skull), "innumerable" lung mets + pleural effusion, mediastinal lymph node involvement.

My MO's initial recommendation was Ibrance + Faslodex, but prior to me starting that treatment, a slot opened up in a clinical trial. I'm not sure if the trial has an official name, but I can certainly find out.

I take 150 mg of Abemaciclib and 50 mg of a pik3 inhibitor (LY3023414) twice a day, 12 hours apart. I also get 500 mg of Faslodex once a month, a Zoladex injection every 28 days and a Zometa infusion every three months. I started out taking 100 mg of the pik3 inhibitor twice a day (I was randomized into the 100 mg group; there's also a 125 mg group), but my potassium levels fell, so the dose was reduced.

I've had three CT scans since beginning the trial in February and each scan has shown smaller lesions / tumors. The pleural effusion cleared up almost immediately. The clinical trial folks told me last week that tumors have shrunk, on average, by 56 percent. My TMs have dropped from 800 in February to 200 in June.

The main side effects are diarrhea and some fatigue. Figuring out how to deal with the diarrhea has been a bit of a crapshoot (pun intended). I've pretty much had to cut out raw vegetables. I can eat avocados and tomatoes with no problem (they're both fruits, I know, but I consider them veggies). I'll eat something one night and be fine, then eat leftovers the following night and end up with terrible stomach cramps. Pepto Bismol, Tums and Immodium all help. My blood glucose levels have been consistently low, so I have to make sure I don't skip meals.

I'm happy to answer any questions and keep y'all updated. My next scans are at the end of July.


Comments

  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited July 2017

    Hi Mazie73 - Thanks so much for posting your experience on this trial.  So pleased to hear you are doing well.  Please continue to update this thread.  Many of us are very interested in how well this protocol works and with what QOL.  We really do need more options and longer lasting options in our arsenal to continue to survive (and hopefully slay) this beast.  The more protocols in clinical trials that prove successful and with fewer and more tolerable side effects the better!  I am currently on a clinical trial for an unnamed SERD called LSZ102 and Kisqali (ribociclib).  I have my first set of surveillance scans since being on the trial scheduled for tomorrow.  I am really hoping to get good news.  I am also excited to see more people participating in trials for the next great thing!   

    Thanks again for putting yourself out there for a trial.  Wishing you great success!

  • bigbhome
    bigbhome Member Posts: 840
    edited July 2017

    Thanks you for this information and thank you for participation in this trial. I want to talk to my mo about this b I feel my Ibrance days are limited.

    So glad this is working for you!

    Hugs and prayers

    C

  • bigbhome
    bigbhome Member Posts: 840
    edited July 2017

    Thanks you for this information and thank you for participation in this trial. I want to talk to my mo about this b I feel my Ibrance days are limited.

    So glad this is working for you!

    Hugs and prayers

    C

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited November 2017

    Hi Maizie,

    I somehow missed this thread earlier, and so hope you will post regular updates, particularly since it has been working! Have your side effects improved over time with the drugs?

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited November 2017

    Also, can you post what you have to do as part of the trial? How many extra scans or bloodwork, or what symptoms do they ask about? have any of the staff mentioned how the trial is going? I'm confused that it is listed phase 1b, but has been going since 2014? which is a long time for phase 1! and not expected to be over for several more years yet?I must be reading this wrong- although they are doing quite a few different combos.

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited November 2017

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