Tamoxifen side effects

Hi, I have been on tamoxifen since November 2020. So far I have hot flushes and a bit of restless sleep. No numbness but closely monitoring myself for any issues. Sorry you are experiencing that numb thing, it must seem very strange and be an issue eating. Hope it settles quickly.

Thank you Cath62 for you reply. It doesn’t affect my eating thank goodness it’s just a nuisance. I’ve changed brands of tamoxifen but still seems the same. I’m going to ask Dr if I’m actually allergic to tamoxifen. Otherwise I’m coping ok with it. Hope you are well. 

Hi @Paulie12, that's a good idea to allergy check. I am well thank you  I have just had my final surgery so recovering from that. Last year was surgery, chemo and radium. Glad to be past all that treatment phase and just be taking a pill every day. So far so good really. When I hear of all the side effects people get I feel very grateful not to have these. Best wishes to you. 

Tamoxifen as my third try, with Arimidex and Letrazole not being great for me.  I can't survive without some sort of decent sleep and the insomnia with the first two was awful.  Arimidex made me incredibly sad.  Tamoxifen side effects so far are the weight gain and hairloss.  Both more than I've experienced before.  The hair loss is incredible and after only 2 months on it I can block the shower drain on hair wash day and I literally shed throughout the house as I walk.  I have long hair too so it's a bit of a mess.  I wonder if anyone else has experienced this and has any suggestions on how it can be combatted?  I'm on Biotin and have just started Silica as well.  

Tamoxifen has been ok for me.  At the 4 week mark I had a significant weird thing happening: hot flushes, insomnia, depression, anxiety, i dropped the dose (without consultation) to 10 mg every other day, then after about 2 weeks, once my moods had stabilised I went back to the full20mg dose and I have been completely fine since - a few hot flushes at night and some insomnia, but depression and anxiety largely gone.  I try to exercise every day - walking mainly.  Overall I'm finding the tamoxifen very "do-able".  

Sounds like that method should be investigated further,@NeG ... you may have stumbled on the secret of not being badly affected by AIs!!   Much as they wean you off strong drugs - they should do the same at the start only the opposite! .... start off with smaller doses and gradually work up to the full dose! Well done!  I hope it stays 'do-able'!!

And welcome to the blog - to the club that no-one really wanted to join .....  We DO still have fun here, as well as the serious stuff .... check out this post that covers some of the areas of the forum that you can have some fun with - specially if you enjoy art or craft, gardening or have fur kids - whack up pics, or put up a joke or two in the Funnies section!!
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Take care & all the best with your continuing treatment. xx

Yes I take Tamoxifen but a genetic brand called Genox02. The tamoxifen brand gave me lots of side effects, but changing I only have a few, and I can cope with them. Just moving the time I take it now as I was noticing bad headaches, so I am taking it at night but a bit earlier before dinner as when I go to bed I cannot sleep. gr gr.  I have had issues with my cervix wall increasing in size , keeping an eye on it , had a biopsy and it was clear Thank goodness !!! so just an internal U/s and a outside u/s scan in March , will be discussing it with my oncologist next visit. Unfortunately a side effect. Dammed if you do and dammed if you don't !!.  Good luck and make sure you have a side effect of these drugs, that are on this site for you. take care xx

Hi ChezaH, thanks for your reply. I can take Nolvadex without the side effects I had with Tamoxifen by Sandoz. The Nolvadex is actually made by Astra Zeneca company. 

That's interesting @ChezaH, as I'm also on Genox. It's just what my chemist stocks, so I never tried the brand name one.

I wouldn't have thought brands could make a big difference. My husband always gets dismissed by the chemist but insists that ventolin works better than the generic. And I was just chatting to the person injecting me with radioactive tracer and he said the brand of what they inject you with during a CT can effect how much you feel like you've peed yourself (as I'd just had my CT and it wasn't anywhere near as bad as the one I had 20 years ago!!).

Either way, I'll stick with the Genox for now since my side effects seem pretty good compared to many.

I wish chemists would not push the generics! The active ingredient(s) is the same but the fillers are not and some people have quite pronounced reactions to some fillers. The chemists have no specific knowledge of the fillers, unless they look them up, or of your sensitivities. The intention is often to save you money (honourable) or to push a particular product for financial reasons (less so) but it’s not very well underpinned with knowledge.