Tamoxifen, is there anyone out there who HAS NOT been suffering awful side-effects?

Hi!  I've been on.. and off..tamoxifen these past two years.  Like you,  I really didn't want to take it and as I'd had very good results on Herceptin,  I was not really convinced that I had much to gain from it.  I didn't notice any huge difference on it though I did complain of being tired, fatigued at work and struggling to get back my exercise fitness.  So I had a bit of a holiday from the tamoxifen and guess what?  I got incredibly sore and achey in the wrists down at the base of my thumbs.  This had been niggling for a while and is aggravated by my bike riding and yoga but it really became agony.  Had I been taking the tamoxifen at the time I would have cursed it bitterly and sworn off it but it wasn't to blame!  Wrists eventually settled down, now back on the tamoxifen and other than a few cramps, I have few complaints.  I now try to manage the fatigue with early nights and taking it a bit easier.  Best of luck with your treatment.  Fiona

edited - ignore!!

I am sitting here with my first packed of Tamoxifen. It's Nolvadex-D. I've read everything on this forum re time of day to take the tablet. I'm going to take it with dinner, to start with. I take an antidepressant first thing every morning. Thought I'd space them out. I really hope I will be able to sleep. Here goes.

Thanks CatRM,
My oncology appointment is today. I have a lot of questions. I have to admit I'm feeling low.

I'm late to this thread but thought I'd put my 2c in! I've been on Genox tamoxifen for nearly a year now. For the first 2 or so months I found I was very easily agitated and what I call 'a bit psycho' in the evenings! Not sure if this was the Genox, me getting over my mastectomy, adjusting to my new life, or the fact that I have 4 kids! But, like I said, I calmed down after a while and now am not half as grumpy as I was. Aside from that, I have had very minimal side effects so far - one ankle gives me grief when I'm on the rowing machine, one of my finger joints is stiff, I have no libido and my hair is thinning but that's about it. I'm fairly active (crossfit 3xweekly, and my work is very active), and young enough (39) so I'm sure that helps. I take my tablets at night. I have met another young mum who was on tamoxifen and had no side effects either, so be encouraged, it is possible!!!! x

@BewilderedButHopeful 

Hi!  Taking these drugs is a mindset as well as!  Knowing there are side effects doesn't always follow that you will get all or even one or two of the side effects...…..
Given your age perhaps this booklet from BCNA may help you, if you haven't seen it already!  It discusses menopause and breast cancer treatment

https://www.bcna.org.au/media/2131/menopause_booklet.pdf

Take care and best wishes with ongoing treatment

There's that gremlln again - try 
@BewilderedButHopeful 

Oh and I settled on middle of the day to take Tamoxifen as I found that suited me better

Hi Red1,
Yeah, I know you're right. Thanks for your story. That helps. I know I can overthink things - but as I said before - the surreal nature of surgeries, radiation then taking horrible drugs to prevent getting cancer, when you don't feel sick at all in the first place...I still can't get my head around it all. I appreciate the support you guys have given me. :blush:

I didn't want to take tamoxifen either, but I sucked it up and am now about 6 months in, honestly I drove to the chemist crying when I filled the first script and it was not the horror I imagined . There where a few intense hot flashes for the first couple of months but these have settled down a lot, a little bit stiff some days until I get moving..but I feel good otherwise...I have not committed myself for 5 years yet but it helped when I broke it down to if I finish 4 boxes that's a year done...so I think I can do it, the side effects are scary but bc coming back...hell no- throw all you can at the bugger!!

Hi @BewilderedButHopeful 

I have been on Tamoxifen since August '19.  The main side effects for me have been hot flushes, struggling to sleep all night, loss of libido and mood swings (more teary than normal, not angry).  None of it is ideal but it's certainly not debilitating, it's manageable. 

I just keep telling myself that these side effects are better than having cancer so I have to keep going with it! Regular exercise helps my moods.  Having a fan in the bedroom helps with sleep. 

And as I am only 33, my mum keeps telling me at least I'll be prepared for when I go through menopause later in life #thanksmum

Good luck with it all :) x

Thanks xxx