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Old 10-10-2016, 10:46 AM   #14
AlaskaAngel
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Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Re: Triple positive-Always a recurrance?

Hi Tankweti,

The cross-talk was the problem I too could see with taking tamoxifen, but back when I was going through tx 14 years ago, everyone seemed deaf about it. I finally just dumped out of continuing to take tamoxifen, on my own... first cutting back to half-dose for about 3/4 of a year before dropping it. I had taken full-dose for a year before that. At the time, I noticed that within 3 months after starting tamoxifen, my mammograms had gone from showing very dense breasts to showing no density at all, and I raised that question with providers but they didn't see any relevance to that. Later on, when I saw the work that was done by the Karolinska Institute that related breast density changes to tamoxifen usage, I realized that their investigation results would probably apply to me. (Check it out online, tamoxifen and Karolinska Institute). So my guess is that I was one of those for whom tamoxifen was best-suited.... if they had understood the mammogram density loss results, and if it had been taken only short-term like I took it, to minimize any further risk due to tamoxifen cross-talk.

I did no taxane, no Herceptin, and no AI and remain without recurrence thus far, although like you, as a HR+ late recurrence is a possibility for us both. (At the time I was treated, neither Herceptin nor AI's were available to me other than by clinical trial, or I would have accepted Herceptin.) What is especially ironic is that as a HR+ I probably would actually have saved myself a lot of misery and would have gotten more bang for the buck out of skipping chemo and doing the Herceptin and hormone therapy.

AlaskaAngel
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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