Tamoxifen Holiday?

Hi @skyefall. Thank you for posting this!!! I’m in a similar situation. I’ve been on Tamoxifen for not quite 2 years (with a 6 week break for reconstruction surgery). I’ve struggled all along with hot flashes, insomnia, fatigue, low energy, mood swings, some depression, brain fog, even a uterine polyp (which may or may not have anything to do with taking Tamoxifen) and my periods disappeared early on, although I’m not complaining about that. Having such low energy, and not being able to think correctly or remember things (I have big gaps in my memory for the past year) and just not feeling like myself but not knowing how to describe it without sounding like a lunatic, was getting me to a breaking point. I actually felt like my brain snapped one day, but I survived and nothing dramatic happened so maybe it was just a mood swing and not a real mental breakdown. Yes, feeling very alien! Well described and if it wasn’t happening to me, I’d maybe wonder if you were exaggerating. I know you are not. I’m sorry that you are struggling now after doing so well before. It does mess with your head!

I take Veozah for the hot flashes and that has tamed them substantially, but pushing through every day with little energy, and little desire to do anything, or even interact with anyone, because having conversations was nearly impossible at times with my brain, and never being able to get a good night’s sleep … that was depressing! Trying to do all the right things - healthy diet, exercise, relaxation stuff, etc wasn’t making a noticeable difference.

My MO recently suggested taking a break and I did. It’s been 4 weeks and it’s a night and day difference. I desperately needed this break, I didn’t know how much. My husband and I have been shocked at how quickly I’ve reverted to my old self (we started noticing my energy boosting within a few days) … my brain now works again, I feel like my pre-cancer self again, my energy levels have gone up x4 or x5 I’d say, not quite what they used to be, but I feel so functional again! Others in my life have noticed the difference. We feel like we need to quickly do things to enjoy the real me before I go back on something!

That in itself is going to take some willpower to get back on something. I’m not comfortable stopping hormone treatment altogether, so I either go back on Tamoxifen and accept the known side effects, or do ovarian suppression and an AI and hope I tolerate that better. My blood tests show I am still pre-menopausal. I was really hoping some of my side effects were actually from going through real menopause but I guess not, or maybe I’m partially there? I’m still having trouble sleeping well, and am still having hot flashes, but that’s much more bearable since my brain feels properly in gear again. That whole alien feeling was just so distressing!

@skyefall If you do take a small break from Tamoxifen, I hope you feel yourself returning quickly, and can make good decisions while having mental clarity!!

@skyefall Enjoy your “vacation”!! Hopefully this will be the reset you need … or help you isolate what’s causing what. Twisty journey indeed!