Tamoxifen side effects feedback?

@PeterB it really is a matter of finding the balance between a quality lifestyle and the side effects of these drugs. For some, not all, the side effects are just too damn disruptive. Well done for persisting for 5 years. One can assume you will get a great deal of benefit from it and I can't blame you for having had enough. Hope things 'fire up' for you soon.

I have been on letrozole for four and a half years. I have two side effects - vaginal dryness that affects my sex life and a reduction in my bone density. As my bone density before I started medication was excellent, I shall probably get through my five years OK, ie my bone density will be average for my age but hey!! let's not get too picky, I could have done a lot worse. The vaginal dryness is a pain in the nether regions but humour and patience has got me and my partner this far and will see us through to next May. It may not get any better then but one step at a time. No aches, pains, flushes etc. I will have the satisfaction that I have done everything recommended to avoid a recurrence or indeed a new cancer. I passed the 5 year anniversary of my diagnosis yesterday. And no, there are no guarantees. 

Tamoxifin effects on me was shutting down completely any idea about sex for five years. Both physically and mentally too. You just turn off. Hopefully will come back after it gets out of my system. Thus is why we have set up the FB page The Mens Breast Cancer Forum so men can talk to each other about problems like this.
PeterB

This link I reckon is pretty good overview 

http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/femara

I've been on this for over a year. My bone density us stable 1 year on. 
My joint aches are bearable if I am active and the worst settled in 6 months. 

I have tiredness but not sure if it's the letrozole, the chemo or fitness or all if it. I am continuing trying to improve fitness and not overdo it so I don't fall into a heap. I think I'm finally winning.  Kath x

Hello @Drover,

I was put on Letrizole to balance my hormone regime going through IVF for a month, and am in hormone therapy now with Tamoxifen.

In my personal experience the first month of Letrizole side-effects don't come close to the heck-scape that was one month taking Tamoxifen, so yes - anecdotal confirmation from me that Letrizole is much kinder.

Of course, this will probably vary from person to person as wildly as Tamoxifen side-effects do. 

So sorry to hear about the extra radiation annoyances. The good news is that stuff will heal up in no time. :heart: Happy to see you seem to be in good spirits despite it.

I've been on tamoxifen since may not had much problem but I am going to get my overies uterus looked at due to bit of pain I get off and on as it can give overian cancer and my mums cancer started in cervix all the best x

Yes, great to see you on here @PeterB. I lasted one year on Tamoxifen and It wasn’t for me. Other people seem to find it ok. I felt much better after stopping it and taking the tablets was a connection mentally to cancer treatment. I also have  side effects that are ongoing from Tamoxifen. All the best. x 

Well done for getting through your radiotherapy and I hope that your skin improves without too much trouble.  Don't be surprised if you find, as I have, that the radiotherapy recover is more gruelling than expected.  It didn't seem such a big deal when I completed it 4 months ago but the fatigue has lingered on and on, as has the swollen, sore breast so the healing must take some time to get through.  My oncologist was pretty keen for me to take some anti-oestrogens in the long term and like you, I was very resistive.  Surely I had had enough treatment and surely, as my results all seemed to indicate, I had this thing licked?  Also, I have been living very healthily and not one for liking to take medication.  Problem is, no one can tell you for sure so what do you do?  I reluctantly agreed to try, just try I'd say, some medication and see how I went on it.  I opted for tamoxifen because it seems to have less impact on the bone health.  So far (one month in), minimal side effects so I suppose I'll just keep on going whilst I have no compelling reason to stop.

Hi Drover. I've been taking tamoxifen for nearly five years and honestly, I've barely noticed any side effects. I had hot flushes initially but I think that was due to chemo putting me into menopause a bit early (46)  rather than tamoxifen. I had a pelvic ultrasound at about 2.5 years and there was endometrial thickening so I was sent off for a D&C. It's probably thickened up again by now but not going back for that a second time!

I was initially worried that I would gain weight or have sleeping problems.  However my weight and sleep issues issues are no better or worse than they were before I started taking tamoxifen. I probably do exercise a bit more than I used to and I try to eat a reasonably healthy diet. So that helps.

My oncologist suggested that I switch to an aromatase inhibitor once it became clear I was menopausal but I've opted to stay with tamoxifen (with oncologist's approval) as from all I've read the side effects are worse on the AIs. There seem to be a lot more complaints from women on AIs about stiff joints and sexual problems. Still I haven't tried them so I can't be sure how it would effect me. All you can do is give them a try. As others have said, everyone is different. Having said all that, I am really looking forward to finishing with the tamoxifen in January. 

Agree with you @PeterB
I am not on Tamoxifen as the oncologist agreed the ramifications of taking it far outweighed the ''possible'' good.
Nice to see you on the website - good to have a make perspective on things - keep on keeping on..
Summer   :)