Tamoxifen?

Hi Ladies, I'm still doing research about Tamoxifen and how it affects those of us with HER2. I was wondering if any of you out there have taken Tamoxifen and then discontinued it. Why did you discontinue it? If it stopped working for you HOW did you determine it had stopped working? What were the signs? My Onc has been very evasive about how he knows it is working for me. I would hate to have disease progression be the indication that it wasn't working. Do you know of any tests that can be done? Thanks in advance for any info you can give me. Take Care, Linda

Hi LInda,

It's my understanding that they now know that people who are er+ and her 2 +++ that tamoxifen usually does not work. I was on tamoxifen until my recurrence then I was taken off because my onc said it must not be working since I had the recurrence. I'm pre-menopausal so if I do any hormonal therapies I will have to get shots or have my ovaries removed. I'm going to talk to my onc. tomorrow about arimidex or femara.

Blessings and Hugs,

LInda in MI.

Hi Linda: Just got back from my Onc. He is going to run a FSH test (I think those were the letters) to see if I am pre or post menopausal. I had just started to skip some periods when I was diagnosed with BC at age 49 (2 years ago). The chemo threw me into menopause and I haven't resumed any periods since treatment stopped. I have been getting little "twinges" from my ovaries like they are trying to release an egg. I have been on Tamoxifen for about a year and a half. I have just come upon some research recently that indicates in certain circumstances with HER2 involvement Tamoxifen shouldn't be taken. My Onc is going to do some research about this for me...says he has a friend that is studying HER2 and ER+ breast cancer....and get back to me. So we will see.
Thanks for your response. Take Care, Linda

Hi Linda, Have you asked the Onc about switching you to Arimidex if your test shows that you are post menopause? I'm thinking if there is any question as it effectivness with HER2 better to be on the safe side.

Bevie: My Onc mumbled something about going on an aromatase inhibitor but he isn't real thrilled about me going off Tamoxefin. My preference, also, is to stay on Tamoxefin because it has such a good track record. But if the levels of AIB1 are high for me then it might be better for me to switch to something else. I just wish I could find out HOW to determine the AIB1 level. Take Care, Linda