ILC with Mets using Afinitor

Danishgirl66
Danishgirl66 Member Posts: 163
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I am wondering how many of you ILC with mets ladies have used or are using Afinitor.  I know there is a site for Afinitor and sites for ILC with mets, but my chemo brain is not able to put the two together.

What kind of side effects did you have and how long have you or were you on it?

I guess I'm overly anxious because I've had almost three months and I know I will be getting scans soon.  I have been on Afintor 10 mg for two months with two interruptions of about two weeks each because of mouth sores.  I'm now on 7.5 mg and have been for two weeks.  Mouth is definitely better.

My mets were discovered in my abdomen mostly around the colon and lower stomach.

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  • hendricks1
    hendricks1 Member Posts: 88
    edited March 2014

    Hi-I just started the trial of perception/navelbine and afinitor 3 weeks ago. I'm doing well but they said could have normal garbage including mouth sores. I'm getting a little neuropathy but that's the navelbine.  Let me know how you do.  I have more scans in 3 weeks.  I hope this works cuz I've already done WBR. Hugs!

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  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited March 2014

    Hi hendricks1,  No mouth sores since on 7.5 mg. and still waiting for scans.

    You must have been diagnosed very young. That just seems so unfair.  I was first diagnosed at 62 then mets at 66.

    I hope and pray your scans turn out NED!  Waiting to know what is happening is so hard.

    Hugs back,  MaryAnne

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