Tamoxifen tales

[PaperbackWrighter]

I took my first Tamoxifen tablet on Friday following surgery and pre radiotherapy for stage I lobular breast cancer. I'm 50 and pre menopause, had not experienced any perimenopause symptoms before my diagnosis in June.

Four tablets down and I'm feeling a bit wiped out like I'm on my period, and mood a little lower too. Nothing else so far. I wondered what other people's experience of it were in the first few weeks and beyond?

I had your exact journey 10 years ago at same age. I was wiped out, but that was probably due to surgery and Grief from recent bereavement as well as the emotional journey of diagnosis and treatment. I did suffer from horrible leg cramps, especially in the night , which is quite common apparently. Magnesium tablets helped a bit. Good luck

Thank you, that's good to know and I will get some magnesium tablets in if I start to get the cramps. Yes the wiped out feeling probably predated the tamoxifen for me too, but I've definitely felt a marked difference since. Got the details of my radiotherapy today, starting 2 October, so the next stage to navigate!

48 and pre menopausal. Been on it for a couple of months.
Had a few extra periods really close together in the beginning; nothing since. Did get crazy leg cramps one night and have been eating a banana every day since and haven’t had it again.
I feel wiped out - like I never really got over the exhaustion from radiation - but I’ve gotten used to feeling this way now. I’m lucky in that I work part time so I rest a lot.
My care team have all stressed the importance of gentle exercise so I do walk most days, even though I have an active job/home life.
I started a menopausal skin care routine (just No 7) to try and keep the skin aging at bay.
I don’t feel hugely unwell enough to seek out medical treatment but don’t feel well either.
I’ve resigned myself to the fact that this is the cost of an extra 5/10/20 years so just going with it.

I stuck it out for 3 months but couldn't take being light-headed as well as brain fog and feeling depressed. Everything about my mind and body slowed down and waking multiple times at night.
My head was so much better after coming off it, sleeping better too. Took about 3 weeks for the hot flushes to stop. Can't say I'm back to pre diagnosis energy, but that's probably the radiotherapy.
There were lots of other side effects I got too, but they did improve after a couple of months - nausea, reduced appetite, headaches. My appetite seems to have come back so having to watch what I eat as actually put on weight since stopping.
I can workout longer at the gym now too.
Having said all that, I'd always say try it as some say they are not too bad on it. My risk is low and predict gives a 1% improvement on 15 years, so I've not blindly stopped. It's a balance, for me I weighed it up and decided the effects weren't worth it, I couldn't do my job the way I felt. Everyone is different, see how it goes.

It’s interesting you say your score indicates a 1% improvement. Mine is 3% and I’m being actively encouraged, if not pressured, to stay on it.

@Littlegreyface
I think I'd of stuck it out longer the more the perceived benefit, but as it was a grade 1 stage 1 (no lymph node involved) The risk is lower.

@Opentooffers I assumed that predict was the same as oncotype score but it doesn’t seem so. I’m not U.K. based. I’m also grade 1/Stage1/no lymph but I guess it’s not the same.

Oncotype predicts response to chemotherapy, not to Tamoxifen which is endocrine therapy.

My oncotype recurrence score report shows a distant recurrence risk at 9 years with an AI or Tam alone as well as a result for chemotherapy benefit.

Thanks all for your replies. Well, I'm still on the tamoxifen, the leg aches are improving but the fatigue isn't. However that might be because I'm not sleeping well (which again might be the tamoxifen!). So far, and touch wood, I wouldn't say the side effects are unbearable to live with - but maybe ask my friends and family as my mood is definitely different. But anyhow, I've been a lifelong people pleaser and I'm noticing I'm being a bit tougher with people/situations in the past few weeks. A potential positive side effect perhaps! 😁