1. < Breast Cancer

Tamoxifen and mental health

Posted by aspapla @aspapla, Jan 23, 2023

I started taking tamoxifen as part of my BC treatment a couple of weeks ago and have been really struggling with nervousness, anxiety and depression from the first days of taking this medication. The effect on me feels similar to PMS but intensified, and having it every single day.

As this is a long-term treatment (my oncologist told me I would be on this pill for 10 years as I also have a genetic predisposition), I wanted to ask other women whether such side-effects of tamoxifen subside over time (and how long would that be!), or if they are part of the whole duration of the treatment. I can't wait to go back to my usual mental state and am hoping I am still only adjusting. I have been prescribed with Effexor which I am about to start, but I also would not want to be on anti-depressants for the whole 10 years of Tamoxifen.

Thank you very much,
Aspa

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raebaby | @raebaby | Feb 9 3:48pm

I'm 82. After a lumpectomy, chemo and radiation 3 years ago, I decided not to take AL's. I recntly saw my oncologist and he said he didn't epect my cancer to come back. I was HERpostive which has good results using Herceptin, so that may be part of my so far, success.

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1 reply
catreen | @catreen | Feb 9 4:28pm
In reply to @tmfranz "I’ve been on tamoxifen for 3 years. I’m also on Effexor and Xanax to help with..." + (show)
@tmfranz

I’ve been on tamoxifen for 3 years. I’m also on Effexor and Xanax to help with the anxiety. I am 52 and have night sweats, curse in my sleep and yell “help” every night. My hair has become very thin on top, my teeth are breaking. I have 4 new crowns. I’m extremely tired all the time. No one has empathy. Everyone thinks since my mastectomy, I’m back to normal and should act normal. But I don’t feel normal. It’s like I’m in fear of every thing. I present myself as “all together” then come home and remove the happy mask and crawl in bed.

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I hear you sister. Same frustrations.

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bjohnson511 | @bjohnson511 | Feb 10 8:42am

Well ladies, I’m in the same boat I started my anastrozole on Thanksgiving night. I hate everything about it some mornings. It’s hard to pick up my coffee cup because my shoulders hurts so badly and it’s my hips or then it’s my feet or then it’s my knuckles you never know, every day is different. Seems to have a headache every morning. 72 years old and not sure I wanna live the rest of my life like this. I’d rather take my chances. When I see my doctor next, I’m gonna ask her about other options. Sending prayers your way . !

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1 reply
sarahmh | @sarahmh | Feb 10 8:54am
In reply to @heatherann77 "Thank you for this. I’m weighing that decision right now and it’s been challenging to find..." + (show)
@heatherann77

Thank you for this. I’m weighing that decision right now and it’s been challenging to find others who decided against medication. I was on tamoxifen and almost ended up in the ER after a half marathon because of what it did to my muscles. I was switched to Letrozole after my hysterectomy and within two weeks could barely walk because of the joint pain. I’m two weeks out from being off the Letrozole and have asked to stay off anything until I travel for work in March. But then they want me to try examestane.

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Oh, anastrozole, letrozole, and tamoxifen were all terrible for me, but exemestane is great, thank God! I hope it's the same for you!

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mchler73 | @mchler73 | Feb 10 8:54am

@aspapla
I started taking Tamoxifen about a month ago and same here, I’ve been super irritable, anxious, major brain fog sometimes I feel depressed.
I had to wean off of my Wellbutrin before I started so my Oncologist prescribed me Ativan to take on days when the emotions get too bad. I have been tracking my side effects, both mental and physical, and I’m starting my 2nd month and I think I am noticing the emotional feelings are lessening some. I’m definitely taking the Ativan less. I am hopeful it will continue to lessen with each month.
Not sure if that helps at all, but wanted to share my experience.
Take care!

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sarahmh | @sarahmh | Feb 10 9:01am

I could write a book on the topic of tamoxifen and mental health, but I'll keep it short and sweet. Tamoxifen gave me terrible, unbearable anxiety and depression. Period. Docs don't seem to acknowledge a link, but there's a ton of anecdotal evidence. See if you can try an AI. Hugs.

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Rubyslippers | @triciaot | Feb 10 9:15am

Tamoxifen side effects do differ for premenopausal, early postmenopausal and older postmenopausal. And then there is our individual experiences.

I did find that by week 3 the roller coaster of side effects had evened out. At the 3 month marker there seemed to be more changes, probably as the body more fully adjusts to the steady state of the constant dose of tamoxifen.

I’ve experienced these changes a few times as we’ve worked to get dosing right for me. I’ve been on 20 mg, 10 mg, drug holiday for 5 weeks, ~3 mg, and 5 mg. I’d like to lower it closer to 2.5 mg but research is inconsistent about whether there is enough endoxifen to provide protection. I am older postmenopausal with less genitourinary and hot flash issues, more brain fog and headaches.

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lulurussell | @lulurussell | Feb 10 12:13pm
In reply to @heatherann77 "Thank you for this. I’m weighing that decision right now and it’s been challenging to find..." + (show)
@heatherann77

Thank you for this. I’m weighing that decision right now and it’s been challenging to find others who decided against medication. I was on tamoxifen and almost ended up in the ER after a half marathon because of what it did to my muscles. I was switched to Letrozole after my hysterectomy and within two weeks could barely walk because of the joint pain. I’m two weeks out from being off the Letrozole and have asked to stay off anything until I travel for work in March. But then they want me to try examestane.

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I couldn't make it 2 weeks on Al . I have never felt that bad in my life. Brain fog, panic attack rushes in both arms every minute, balance, high BP, hard/slow to accomplish anything, not safe to drive . I do not want to even try a different one and wonder if anything natural to take vs. nothing.

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1 reply
3dogngt | @3dogngt | Feb 11 8:40am
In reply to @lulurussell "I couldn't make it 2 weeks on Al . I have never felt that bad in..." + (show)
@lulurussell

I couldn't make it 2 weeks on Al . I have never felt that bad in my life. Brain fog, panic attack rushes in both arms every minute, balance, high BP, hard/slow to accomplish anything, not safe to drive . I do not want to even try a different one and wonder if anything natural to take vs. nothing.

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I would be interested in something natural too. This whole AI thing is dreadful.

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kayanonsen | @kayanonsen | Feb 13 12:18am
In reply to @bjohnson511 "Well ladies, I’m in the same boat I started my anastrozole on Thanksgiving night. I hate..." + (show)
@bjohnson511

Well ladies, I’m in the same boat I started my anastrozole on Thanksgiving night. I hate everything about it some mornings. It’s hard to pick up my coffee cup because my shoulders hurts so badly and it’s my hips or then it’s my feet or then it’s my knuckles you never know, every day is different. Seems to have a headache every morning. 72 years old and not sure I wanna live the rest of my life like this. I’d rather take my chances. When I see my doctor next, I’m gonna ask her about other options. Sending prayers your way . !

Jump to this post

I'd love to hear what happens after you talk to Dr. I'm in hell with tchp for Invasive Ductal plus HER2 positive. My Dr. just gives me cream for my bottom and more pills for stomach. I'm getting 4th cycle this Friday Feb 16 24
Kay

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