Does anyone take tamoxifen for more than 10 years?

Abbey11

I am finishing my 10 years of tamoxifen this week, which is great. However, I am wondering if anyone stays on tam for more than 10 years. I have tolerated it well and am, frankly, scared to stop taking it! I figured it's worked well so far. If 10 years is better than 5, is 15 better than 10? I don't think there have been any studies about this, but has anyone out there spoken with their doc about this? Any and all insight is appreciated! Many thanks.

edwards750

I only did 5 years but was anxious about what comes after too. Tamoxifen was an insurance policy to me but it did come with side effects. Fortunately I didn’t have any real issues with it. My MO said there was no need to continue taking it and risk the side effects like a blood clot.

I’ve never heard of anyone taking it longer than 10 years.

Diane

ShariAnn2

I just ended my 10-1/2 year tenure with Tamoxifen about 4-weeks ago. I too called it my insurance policy. I'm not going to lie...I think about it everyday. I sometimes wake-up in the middle of the night freaking out because I forgot to take my tamoxifen. The only change I'm experiencing is muscle & joint pain. I'm currently doing research to find out what's going on. I feel like the Tamoxifen "masked" so many things that now my body is feeling it all. No hot flashes, mood swings, etc...just body aches. I had NO side effects with Tamoxifen...not even weight gain. As a matter of fact...I have gained 5 pounds since stopping. I'm confused and any input from others would be greatly appreciated.

Abbey11

Hi ShariAnn2. Thanks for your response! I'm glad someone else feels this way. Interesting about the weight gain. I have been off for about the same time as you have, and I also feel like I have gained a couple of pounds. Maybe just a coincidence, but interesting. I will pay attention to it. Otherwise, I don't feel any different. I did have a converstion with my oncologist about this since my original post and he has assured me that there's no evidence that staying on it will be of any benefit. He said that the benefits of tamoxifen are long lasting and reduce recurrance rates for at least 20 years out. He's a smart doc, and so I'm just trying to believe him and forget about it! We'll see how that works.

Abbey11

Hi. I am wondering if you have continued to gain weight. I stopped tamoxifen last April and have gained 6 or 7 pounds since, which is a lot for me! I am eating and exercising the same amount. Would love to hear your experience, and I might post another topic about this.

Thanks!