Tamoxifen - Can i start again??
Tamoxifen - Can i start again?? I am feeling so rough since I finished the Tamoxifen (5 years) and wondered if anyone else had experienced problems?
I know I have asked before but only one person seemed to be at the same stage as me.
I am so totally tired all the time and my stomach (which I thought was bad before) is shot to bits!
I have aches and pains all over, shoulder, legs, back - neck the lot. I am not doing anything different and can only relate it to the lack of pills which much be changing my hormone levels. I am 45 and feeling it for the first time!
When I am not relating it to the pills I am going down the re-occourance route, you know - panic panic blah blah.
Does anyone think the sudden reappearance of oestragen (sp?) can make such a diference, and will I ever feel better (Wish there was a tearful smiley here).
Sometimes I just feel so tired I could lay down and stay there (I hestiate to say what I really feel)
Anyone else at this stage in the de-tox?
Nesa - exhausted
Feel for you Hi Nessa, I finished Arimidex about a month ago and was expecting to feel so much better once I had stopped, this hasn’t really happened. Still getting hot flushes, still feeling tired and forgetful, but friends say it’s still early days.
I am sure your body is really struggling to cope with the gradual re-emergence of oestrogen - maybe its not quite the same for me as I was post menopausal anyway before treatment, but these hormones are powerful things and your body has a lot to adjust to. I spoke to someone who finished Tamoxifen a couple of years ago (after 5 years) and I remember her saying she thought they shouldn’t just finish it suddenly - but rather decrease the dosage gradually - she obviously wasn’t feeling great either. Why not go to your GP and explain how you feel - you may have other problems such as anaemia which needs attention ,anyway you should get checked out that what you are feeling is nothing to worry about.
I have to say my IBS has greatly improved since I finished treatment but that is about the only positive thing I can say.
Good luck, and I do hope things improve soon. XX
Hi Nessa Sorry to hear you’re feeling so rough. I’m 3.5 years down the Tamoxifen road, but as I am peri-menopausal (and 54) I hope I will be post-menopausal by the time I have finished. I know what you mean about the tiredness (and have occasionally felt what you haven’t put into words) and I’m already starting to panic about what happens when I have to stop Tamoxifen, as it makes me feel a bit safer re. recurrence.
I would ask your GP or the breast care nurse if it’s normal to feel as you do, and what they can suggest to help you. I suspect tiredness is a menopausal symptom - I have a slighter younger sister who is bc free but constantly tired - she sleeps most of the weekend to catch up on the week. However there may be some kind of supplement you can take to boost your energy levels. My 20-something children swear by Red Bull, but I wouldn’t go down that route…
Take care, nj
Thank you For your replies - I forgot to log in and check - sorry!
I don’t agree about Tamoxifen being chemo in a pill - that sounds a bit panic mongery 
It is a hormone blocker nowhere near being similar to chemo.
The tiredness is not so bad but the emotions are all over the place, I have other issues, and am not coping with them as well as I have in the past.
It’s hard to know if this is the meno or just the detox!
I could have gone through it and be out the other side for all I know.
I have my 5 year check up with the consultant but I will only get 3 minutes so not enough time to ask him questions.
I have been ‘emotional’ (ahem ahem) about my pains in the past so the breast care nurse is a little ‘offish’ with me.
Hard to know who to ask really. I didnt have chemo so dont have an oncologist as such.
The gp always refers me back to the hospital and I have always felt inbetween care as it were.
I am giving myself 3 months to get the pills out of my system and adapt mentally to being without them.
My life has changed dramatically recently so it’s hard to know where the moods come from.
I am seeing a counsellor but she just agrees I have had a hard time - big help !
I do take supplements but the tiredeness seems to go way deeper than that - and red bull? ugh ! lol
I wish it were posible to have a week in bed but i’m not that sort of person - more’s the pity.
I dont think the fear ever leaves us really - it is just how to find a way to accept it into our lives, and maybe the hardest bit - make other people understand that it is always there.
Oh i’m off on a ramble - sorry.
Nesa xx
Nessa
Only just re-registered for the forums so not found your entry until now.
I’ve just turned 50 and finished my 5 years of tamoxifen at the same time. Since then, my mood swings have been enormous and my husband (who only met me after I’d started taking tamoxifen) is finding it very difficult to cope (as am I!)
Yes, I’m tired, but its more a weary feeling. Weary of life’s struggles almost. I hate the way i look (old) and I’m finding it difficult to get enthusiastic about anything… I constantly seem to be fed up, moody and angry and my poor husband bears the brunt of that.
I’ve also started with monthly periods again ( I was only getting a very light one every 4 or 5 months towards the end of tamoxifen).
So I think we do share similar symptoms. Did you get any help from anyone to overcome them - or have they worn off of their own accord? By the way, a GP friend tells me to expect at least 6 months before the tamoxifen is out of my system and my body readjusts to the hormone levels
Oh, and yes, like you - I’m terrified that since my cancer was so oestrogen positive in the first place, it can only be a matter of time before it returns. Irrational? Let’s hope so.
Jacky xx