The struggle is real--Tamoxifin, etc

I had terrible heartburn and crushing fatigue (basically a day and a half after starting) from tamoxifen. I got a Prilosec prescription for the heartburn and after what felt like ages, the heartburn side effect did go away and I didn’t need the PPI anymore.

The fatigue never went away though, despite trying a number of different brands (that helps some people), times of day, and even taking a break and trying to dose to very slowly.

I finally gave up. My oncologist wanted me to try OS+AI but I was dreading it and considering opting out of hormonal therapy altogether.

Then I started reading about toremifene, which is another SERM very similar to tamoxifen but that metabolizes differently. At first, my oncologist did not want to try it because it’s not FDA approved for prevention of recurrence for premenopausal women. But to me there was enough clinical evidence that I thought I wanted to try it. My oncologist consulted with her senior oncologist, who, it turned out, actually advocated to the FDA to approve it for premenopausal women. Then, she was willing to prescribe it for me, though warned me that it might require fighting my insurance to pay for it (even the generic is much much more expensive than tamoxifen).

It worked out though. I’ve only been on it less than a month, but at least so far, the side effects for me are on a whole different level than tamoxifen. As in, totally bearable - and I’m cautiously optimistic that I could really stay on it for 5-10 years.

So long story short - there are some more things you could probably try with tamoxifen, but even if they don’t work out, there is at least one other alternative that not all doctors might think to offer you.

Good luck whatever you decide!

Thank you for your post. It gave voice to the thoughts in my head. I also had the nausea at the beginning. A 14 day course of Omeprazole and it went away for good (so far). Since then I have battled a host of random side effects which cause me to think I will quit at least 1-2 days a month (usually Fridays when I am tired from work and insomnia). For me, this is definitely the worst part of treatment. The choices suck. Take the drugs and feel ok to miserable for 10 years or don’t take the drugs and feel guilty. Also, if they were 100% effective rather than 40%, that would make the decisions easier.

Please, does anyone feel a clicking sound on the joints especially on the knuckles of the hand and ankle joint while on tamoxifen? If i do range of motion on my shoulder, I hear the click and If I make a fist and open it, I hear the click too. All these started about a month ago. I'm just 2 months on tamoxifen.

I try to take it long before I lie down to avoid nausea and the sick feeling.

I am only doing 10 mg of tamoxifen and never did more than 12.5 mg - I never had the dizziness. My gynec did a baseline ultrasound to check thickness of uterine lining and check for polyps and ??? . I will see her each year. Uterine cancer isn't as prevalent / common as thickened lining, non-cancerous growths, etc.