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

For some reason, they don't like to remove the ovaries even if they're not working...I don't get it, either.  My suggestion is to go onto Letrozole without expecting issues because you may not get any.  Many of us have problems with vaginal dryness and muscle and joint pain to one degree or another but there's others who don't have any issues.  Assume you're one of the latter until proven otherwise.

Well,
after all that, my oncologist is going to take me off Tamoxifen because of gynaecological issues. I could be pre or perimenopausal. I have had constant vaginal discharge and intermittent bleeding/periods(?) since starting Tamoxifen. She wants to "switch off" my ovaries once and for all, with a monthly Zoladex injection and Letrozole aromatase inhibitor. What can I expect, team?
Also,
being sent for breast (have developed lymphedema in breast) and pelvic ultrasounds, and a bone scan for a baseline reading.
Question - isn't getting an injection every month for five years nuts? Why not remove the ovaries? Is that worse?

Hi @TerryTee, I hope you are feeling well. The good news is that the severity of hot flushes has diminished and I have no joint pain now. I still don't really get a good night's sleep, but it's not as bad as it was. I'm far less emotional and anxious now that active treatment is over and I 'passed' my three month check up with the surgeon. Annoyingly, my once oily skin and hair is super dry now, and I developed eczema all over the place, which I finally got under control. It flared up especially badly around the radiotherapy site, which is still very reactive. A very stubborn patch of eczema persists under one eye. My period stopped almost immediately when I started Tamoxifen, replaced with a non-stop watery, sometimes slightly bloody discharge. I'm really hoping my hair, skin and nails don't noticeably thin (one of the possible side effects). I find that, working full-time, I'm absolutely fatigued by Friday afternoons. I'd love to go on a long holiday!!!

Dory65 how are you going?  I'm following your pattern a few months behind.  

Thanks @"Beryl C."
That makes sense.

@Dory65 - I believe our temperature is in synch with our sleep/wake patterns. Many years ago when I felt 'hot' at work on a winter day a colleague asked if I had not sleep well. When I replied I had not  she told me about 'circadian disrythmia (broken sleep) and how that affected body temperature. Very similar to jet lag. I appreciate your work situation and your fatigue. XXXXX

Hi All,
I've settled into the tablet with breakfast routine. The dreadful 1.30am wake-up sleep pattern has now become merely 3.30am wake-up then wait for the 6am alarm. Working full-time and trying to ignore the radiator switching on and off inside me throughout the day (and night). The thermostat is on the blink. I think the antidepressant is taking the edge off, nonetheless.

Is this weird? We have our temperature taken on entering the workplace (since Coronavirus took over the world). Mine is consistently lower than all of my colleagues'. Most read 36 to 37. I read 33 (!) one day, 35 today - always low (despite the radiator). The thermometer may be reading low on occasion, but that doesn't explain the difference from other people. I'm very tired and hanging out for the end of the school term. (My school is 'special' and we are still full-on face-to-face).

Hi @Zoffiel,
Good point. If no side effects are apparent - is it working? Where's the research? My mum was on this drug 30 years ago. It didn't hold back two recurrences and mets. But perhaps it slowed them down. Who knows.

I saw my GP yesterday re poor sleep, poor concentration, brain fog. She recommended this https://thiswayup.org.au/how-we-can-help/courses/managing-insomnia/ but I haven't got the energy to 'do the work' after doing my actual work and the rest... 

So, I'm trying Circadin 2mg prolonged release tablets. One tablet one hour before bed. So many tablets - I rattle!

I had no issues with Tamoxifen. I started taking it when I was 43 and swallowed  It for five years. It didn't affect my periods, sex drive, weight or anything else. Seriously, I didn't  even know I was taking it. In hind sight, I'd suggest it didn't work for me as I had a recurrence after ten years.
We are between the devil and the deep. I loathe my current AI  regime but I suspect I'd be dead without it. The gift that keeps on giving

Hi @Fiona2,
thanks for the encouragement. I'm glad your aches and pains have improved. I experienced very bad aches and pains (in bed crying) after about ten days of Tamoxifen, plus mood swings. The severity did not last, thank goodness. Now I just have constant low level soreness which I try to ignore while I get on with my life. The serious sleep disturbance started long before that, at diagnosis I guess - but I've got brain fog so I can't remember! The brain fog is definitely worse. I'm not able to say if it's as a result of chronic poor sleep or a result of the hormone change. I will be asking my GP about help with sleep.

Regarding hot flushes and night sweats, so far they have been mild. I think the antidepressant may be helping with that. I had been on Lovan for years but had to change due to contraindications when taken with Tamoxifen. I'm now taking 10 mg daily a.m. Escitalopram with the Novaldex-D (and a multivitamin). FYI, for me - the Escitalopram works better than Lovan for depression and anxiety. Bonus. :smile:

If this drug stops my cancer from spreading and growing, it's worth taking and putting up with low level side-effects. If I find it debilitating, not so much. Do most people find that the side-effects are more severe at the start and ease over time on the drug?