Hi All,I was a physically well, relatively fit, pain-free and youthful 54 year old woman before BC diagnosis on 29 October 2019. Surreal that I have since been made less well and more susceptible to all sorts of (possibly fatal, certainly life-altering) malaise - in order to ward off another. Angst re side-effects from surgery, radiation treatment, new antidepressant - and now the age- accelerating Tamoxifen waiting in the wings. The 'new normal' or 'new me' seems to be a horrifying prospect. Is there any good news about taking Tamoxifen? Enough to make me stop wondering why I should take the damn thing? Has anyone had minimal side-effects or found out how to stop them?

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!!

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

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

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.

@Dory65 More than likely it was a side effect of tamoxifen. I was referred to a Gynaecology Oncologist as I had unexplained bleed and with monitoring the endometrium lining thickened. I would sit in the waiting room wondering how a breast cancer got me to this waiting room. Two surgeries and two different AIs I have returned to Tamoxifen. Touch wood no obvious side effects and shrunken ovaries and like most the how did I get into this predicament and is it all behind me.......this throws up the unexpected. I have just got to the 5 year mark with 5 to go and hopefully uneventful but who knows........Take care and stay safe

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

Dory65
Member
5 years ago
p.s There's a reason why I changed my username to Dory. I forgot to mention that yes, brain fog goes hand-in hand with the insomnia. I have to concentrate really hard at work, and have huge to-do lists and table just to stay on top of it. :#
Dory65
Member
5 years ago
Hi Mightystar, I still have insomnia even though I've switched to Zoladex and Letrozole. The brain fog did lessen over the months. You are still recovering from active treatment too, which also contributes to the fatigue and compromises your immune system. I've not experienced reflux, but Tamoxifen did cause constipation! :/
Mightystar
Member
5 years ago
I’m never sure if is the tamoxifen or something else, but the brain fog, insomnia, hot flashes and now reflux! Has anyone had reflux with Tamoxifen? Feels like it did when I was heavily pregnant :neutral:
Dory65
Member
5 years ago
Thanks @iserbrown,
Yes, ongoing issues from side effects won't let us forget BC. I'm supposedly NED from the BC. One wonders if these treatments are worth the agro. I've never been to a gynaecologist. Waiting for an appointment.
iserbrown
Member
5 years ago

@Dory65

More than likely it was a side effect of tamoxifen.
I was referred to a Gynaecology Oncologist as I had unexplained bleed and with monitoring the endometrium lining thickened. I would sit in the waiting room wondering how a breast cancer got me to this waiting room. Two surgeries and two different AIs I have returned to Tamoxifen. Touch wood no obvious side effects and shrunken ovaries and like most the how did I get into this predicament and is it all behind me.......this throws up the unexpected. I have just got to the 5 year mark with 5 to go and hopefully uneventful but who knows........

Take care and stay safe
Dory65
Member
5 years ago
Interesting @kezmusc, that's one side effect I wasn't expecting. Certainly reacted fast, if it was Tamoxifen that caused it.
kezmusc
Member
5 years ago
@Dory65,

I had the same thing after about 8 months and then an ovarian cyst after that. Grrr
Dory65
Member
5 years ago
Just an update for the Tamoxifen files.
I've stopped Tamoxifen and started Zoladex and Letrozole. The pelvic ultrasound revealed endometrial thickening. I was only on Tamoxifen for about 5.5 months. Not sure of a connection. Maybe it was there already. Seeing a gynecologist next.
TerryTee
Member
5 years ago
Hope you see positive changes @Dory65
Dory65
Member
5 years ago
Thanks @Sister. I'll take your advice. :)