Others in Affinitor (Everolimus) Clinical Trial?

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I've been on Affinitor along with Tamoxifen since the beginning of the year. Even though it's a randomized trial, I experienced extremely painful mouth sores early on, which indicated that I am not getting the placebo. The mouth sores were horrible and I existed on smoothies for over a week. My MO brought down the dose so now I'm coasting along on one 5 mg pill per day. So far, so good. Under the advice of a naturopath, I am taking glutamine to help keep mouth sores away and also to help with the other digestive issues that seem to lurk and be ready to worsen (stomach pain, hemorrhoids, etc.). Also, I eat fat-free plain yogurt every day to get my probiotics.

Anyone else out there on this drug trial?

Comments

  • JohnSmith
    JohnSmith Member Posts: 651
    edited April 2015

    For those that are perhaps unclear, the OP is referring to this Phase III trial, involving Afinitor:
    S1207 Hormone Therapy With or Without Everolimus in Treating Patients With Breast Cancer (e3)
    Estimated Enrollment: 3500
    Study Start Date: April 2013
    Estimated Study Completion Date: January 2027

  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2015

    jsd44 - There were a number of us on what is called the AA combo - Aromasin/Afinitor - there is a thread for that - many of us are out of that treatment now - for some it was quite successful (my TM's went down substantially) but the se's were too much for me and my onc wouldn't lower the dose - she said the studies had been done on 10 mg and she wasn't lowering it - I do know some were able to stay on 7.5 and some on 5 and probably did quite well - this wasn't a trial but if you get on the thread you can at least see what se's we were or weren't having. Good Luck to you.

  • jsd44
    jsd44 Member Posts: 33
    edited April 2015

    Thanks, 208sandy. How do I jump to the thread without having to scroll through all the topics?

  • jsd44
    jsd44 Member Posts: 33
    edited April 2015

    Oops, never mind. I figured out how to search. But, yes, those threads seem to have ended and I would love to find others in this Phase III trial.

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