I love tamoxifen!

Janewhite

I've been on it for 2 months, and I am so happy with it so far. My periods, which had grown heavy and painful, have now stopped. I don't constantly crave sweets any more, and I'm slowly losing excess weight. I've heard it will lower my high cholesterol, and of course, it reduces my risk of future incidents of breast cancer. Unlike most other hormone-reducing treatments, it doesn't thin the bones.

Tamoxifen is the best! Every 40 year old woman should think about trying it, breast cancer sisters or not!

1982M

I appreciate this post so much! I’m 39 and I start Tamoxifen prob in Jan after surgery. I’m more scared of tamoxifen then I was of chemo, surgery or radiation.

Are you getting lots of hot flashes? I thought I would be getting hot flashes on chemotherapy, but I really haven’t. I had one period on chemo so far and currently waiting to see what happens this cycle. I’m hoping to be in permanent chemopause.

gb2115

1982M, I'm not the OP, but I took tamoxifen for 4 years before my recurrence. The hot flashes (for me) started a couple of months in, but mostly went away after about the first year. That was replaced by other side effects that built and morphed over time.

Janewhite

I haven't noticed any hot flashes yet. Or any other unpleasant side effects

YOUNIS

Sorry to say this!!! i took Tamoxifen right after my surgery...march 2020, and i'm almost a year and a half after. I hardly get any sleep, sometimes can not get out of bed (completely shattered), hot flashes during the night and memory loss and a lot less concentration. I did not want to jump fast to the conclusion that this is all due to taking Tamoxifen, but the fact of the matter that all this are side effect symptoms known for this drug. I'm seriously considering stop taking it ans switch to SOMETHING ELSE

Janewhite

YOUNIS: First, ask your doctor whether there's something you can do to reduce the side effects. If that doesn't work, then try switching.

1982M

Thanks gb2115 and Janewhite.

I’m really hoping it will be ok. I 100% cannot live on no sleep. I can’t function with less then 7hrs. I’m terrified of poor sleep.

Waves2Stars

I’m glad to see this post because I thought about writing something similar! Of all the things this dx threatened me with, Tamoxifen was the treatment I worried most about. Probably because I have had mood issues due to hormone imbalance and insidious insomnia. I start my third bottle this week and I have a couple major wins: I sleep through the night, like *7-8 HOURS* at least six days a week; no more mood swings; and no more headaches or nausea! Yay! I do have very dry skin, eyes and mouth (xylimelts just sit there petrified until morning), and I am sometimes tired. I had three or four hot flashes. I haven’t noticed weight gain, though I now exercise frequently. I take 5mg melatonin nightly now, though benedryl, doxepin, or benedryl + doxepin + magnesium never got me six hours of sleep before Tam.

I don’t want to minimized how terrible the side effects of these meds are for many women. I also know the effects can change over the course of treatment (I wouldn’t be surprised if mine are worse closer to menopause). But I would like for newbies to give endocrine therapy an honest shake before they worry themselves sick over side effects they may never have. I’m grateful for the risk reduction, and for a break from moon sickness, ha ha!

Waves2Stars

https://www.xymogen.com/formulas/products/10302

Btw, this supplement is what my oncologist recommends for mood and sleep. Maybe check with yours about something to add some support? Gabapentin became my secret love after surgery. Makes me sound like a junkie of sorts! For me it worked great for hot flashes and sleep at that time. I would not hesitate for a second to ask for it if I needed to.

Janewhite

Good point, Waves2Stars, reactions vary a lot. Just like menopause, I guess. Some people feel horrible, some hardly notice anything.

And, as I understand it, side effects can change over your years of treatment. Some that are unpleasant might go away as your body gets used to it. (or not!)

gb2115

I agree, newbies really should try tamoxifen because they might be fine with it. I was mostly ok until about the 3 year mark, when I started feeling injured all the time and my private parts completely dried up. Unfortunately I'm going to have to start an Aromatase inhibitor + ovarian suppression soon, so whatever discomfort I had on tamoxifen will probably be magnified. But I grew a tumor while on tamoxifen so there's no point on going back on it.

I wouldn't be afraid of trying tamoxifen though. For 3 years it was an easy drug to take!

1982M

This has been really helpful. At the vary least I don’t feel doomed! Most people post with issues and I realize that, so it’s great to hear both sides