Log in to post a reply
Sep 25, 2020 07:10PM
I see I posted before but I have an update. My body never adjusted to the tamoxifen and I couldn't tolerate the side effects (mainly needing to go to sleep after about 9.5 hours of being awake). I tried different dosages, brands, etc.
I did a lot of research and my oncologist agreed to let me take toremifene instead, which is another SERM that is FDA approved for advanced stage hormonal cancer but not preventing recurrence in premenopausal women. But there is research supporting it, albeit not as much or as high quality as the decades of research supporting tamoxifen. But to be honest, the amount of research on AI for premenopausal women was much less than I expected too! I asked my MO why she was so much more comfortable with AI than toremifene when it seemed to me that the amount of research was very comparable. She said it's because she feels like there is a lot more clinical experience with premenopausal women on AI.
But that's a pretty circular kind of thing. Also apparently toremifene is in much higher use in China and Asia because the genetic variation that inhibits tamoxifen uptake is more common there.
So anyway, I tried toremifene and it has been like night and day. I can actually have normal length adult days now. And it's compatible with Wellbutrin, so I got to go back on that also!
I wish this would be considered for more women. When we're on a drug for depression that is really working for us, it should not be thrown off lightly. That by itself should have been a good enough reason for my doc to consider toremifene as an option for me from day one, but her only other offer was OS+AI. Maybe she'll consider it for more patients going forward.
Anyway I try now to let people know about it because it has made a huge difference for my quality of life.
Dx at 39. 1.8cm. Oncotype 9.
9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH)
10/18/2018 Lumpectomy; Lymph node removal: Sentinel
11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
12/3/2018 Whole-breast: Breast
12/19/2019 Fareston (toremifene)