Tamoxifen and side effects after completing 5 years

Has anyone completed the 5 years drug regime Tamoxifen. I am now due to finish and am worried about side effects I may encounter…I am 58 and Post menopausal. I have only had increase of hot flushes whilst taking the drug, but they seem to have got easier in tha last year.I am concerned about what happens if you stop the drug instantly as I am sure it takes time for it to leave the system in your body.What shoul I expect

Hello,I am sure that you will be getting other posts re Tamoxifen although I am presently not convinced that I am going to like the new version of the forums.
Anyway I was on Tamoxifen for 5 years and finished it 3 years ago and now on Letrozole for 5 years. I didn’t have the aches and pains associated with Tamoxifen but along with the chemo and rads I managed to put on 2 stone. Since finishing Tamoxifen it has now gone and I am back to my pre diagnosis weight and I haven’t changed what I eat etc. It came off slowly but I do not know whether it has anything to do with being on Letrozole.

Hi Colinsmarsh (I’ve done this once but it disappeared so fingers crossed) I’m 6 years clear after a lumpectomy and radiotherapy plus 5 years tamoxifen. To be honest I don’t know how I am! I’m still having periods every 30 days and I’m 55. I remember having a hot flush in Boots when I forst started with tamoxifen but I’ve not reallly noticed anything since. I’ve had marinal coils in and out and my weigght has changed accordingly. My life is like a bad Science investigation, there are no “controls” and too many factors seem to change at any one time. I just stopped taking the tamoxifen the day after my Doctor discharged me. Nobody told me any different. I had bad knee and feet joints while taking tamoxifen and i was told I would feel so much better when I came off it, but I don’t really. I don’t know how I would have felt before the BC so I don’t know what to think. This year I’ve had kidney stones and when i went for the first time for xrays they asked me if I was pregnant, I new I wasn’t because thay had done a pregnancy test. I couple of months later I was back having another xray and they didn’t ask me or do a test. When I asked why I was told it was because I was now 55!!! The numbers had changed but nothing else had. I’m beginning to wonder if anyone really knowss how we should feel. Good luck. Chinook.
P.S Hate this new format.

I finished tamoxifen April last year aged 42 and do not feel any different. I was really hoping to get back to pre cancer me and it didn’t happen - have just confirmation that my ovaries are post menapausal (this may be why I havent bounced back) so soon to start on letrozole for 5 years.
I haven’t had a period in years as on 3rd mirena - but will be booking with GP to get removed now I def have inactive ovaries. Also really struggling to lose or maintain weight - I am around 10lb/14lb up on pre cancer depending how strict I am.
Hoping I dont get the S/E all over again with letrozole as had enough with tamoxifen.
Debs x

sick of the weight up…up…up…please tell me it will come off when I finish Tam, in JUlY 2013.
It is really depressing me.
bumping up…HELPPPPPPPPPP!!!

I completed the 5 years of Tamoxifen Nov 22 2015 I am 59 what now what to expect

After 5.2 yrs, I stopped tamoxifen cold turkey in April 2016. 3 months post tamoxifen my breasts swelled and hurt like crazy. I felt like I was 12 again with my first period coming. My onco said it was normal and it was my hormones. It slowly subsided. In at the beginning of this month (nov. 2016),I had my first mammogram post tamoxifen, my breast still hurt. 

I had chronic yeast infections for over a year at the beginning of tamoxifen. I got it under control, boy did it take a lot of research and effort to get it under control. Now I have it again, I believe it’s hormone related. So the battle begins on this one…ugh. I’m thinking about calling my gyn onco to see what he says about my ovaries still working so well. I’m 51 yrs old. 

Quite the roller coaster ride we’ve all been given a ticket to. I hope this is helpful. And please if anyone has questions or insight for me please feel free to respond. 

Thank you sisters!

Hi, I do not know where to start. I am 53 years old . I diagnosed grade 2 breast cancer on 2010 Feb … I had operation &  radiotherapy only . 1 year I did not start tamoxifen. On feb 2011 I hardly started Tamoxifen (Nolvadex)  untill one month ago . Quitting Tamoxifen was very difficult for me too. Anyway at the moment I feel so weak and feeling nauseation all the time and also feeling dizzy.  Looks like I am going to have mensturation… OK , spring is coming , there should be a spring  tiredness but I presume it 's more than a spring . Is it normal  ?   Another point that  felt I gain some kilos  ( although I go to gym regularly ) … I would like to know what  is waiting for me after quitting Tamoxifen … Thank you from now and love :-) 

I just finished my 5 years of tamoxifen 2 weeks ago and I feel really strange . I am 57 so post menopausal … so not sure what is happening in my body. Hope it will normalize soon. I feel heavier, lethargic , have a cold and just feel totally low energy …

Hi DG888,
You said you finished tamoxifen 2 weeks ago are you only on it for 5 years? Didn’t they say 10 years? It’s just you are still young, they recommended 10 years to me I’m half way through now, I remember at the beginning getting lots of flushes and was cracking up with them, then periods stopped for 3 years then come and go now, flushes stopped, they are now back but not like as before, put on a bit weight. How was the tamoxifen with you? x

Hi I’ve just stopped tamoxifen for a break after being on it for 7 years , I feel constantly nauseous, night sweats worse than ever , has anyone else felt like this ???

Thank you so much to all of you posting your experiences: it’s not easy to find information on this. I am due to stop in 2 months (well actually I’m being encouraged to do at least another 5 yrs), but everyday had been so hard for me on this drug. I am hoping I recover quickly. Please keep posting how you go and if you had chemo/are premenopausal. I’ll do the same when I get to finish and update the zoladex/tamoxifen post I started a few yrs back in case it helps anyone treading the same path.

Hi, i stopped taking tamoxifen 2weeks ago after 5 years, i have felt constantly sick, not eating and now starting with flu like symptoms

Hi my name is jennifer hastie and i had breast cancer in 2010 may, since i had my breast off in november of 2010 i was put on tamoxifen and im still takeing it untill 2020 its been hard get the hot flushes and the ache legs and cramps, but it will stop the cancer comeing back.well done to those who have been taking it.

I am 60 and completed 5 years of tamoxifen in feb 2015.  I was able to wean myself off all meds since that time.  Over the past 2 years I have felt worse each day.  It is as if my thyroid is not working right.  Weight gain, exhaustion, muscle pains, etc.  Ya’ll know that blah feeling you get & you just can’t point your finger to one thing not feeling right.  That is me.  I am so sick of being sick & tired.  Anyone with these type of problems after completing the tamoxifen regiment?

Hi there I have just finished after 10 years and I feel dreadful light headed nausea and mood swings I am hoping that someone can help me on here as I can’t remember life before tamoxifen I am 62 and had a TAH mastectomy and oophrectomy

Same here I’ve been on 10 years it’s awful

Just updating in case it’s useful to someone in the future seeking info. I’m now in my last wk (weaning myself off and now on 25%, because I’m sensitive and figured that it made sense). I’m 46. Supposedly premen but no periods in 5 yrs. I know a lot of you ladies are older, so my situation different and it’s been five yrs of really struggling (no idea how you managed ten). (No chemo/ but Zoladex for 2+), very hard to find info from women like myself. So far, I’ve noticed depressive mood, (but I’m just observing it and feeling better the last days), soreness in feet has really decreased, oiliness in hair returning slightly), increased strength in my arms, no cognitive improvements yet, but I’m not off it yet. I’m sorry to hear you older ladies struggling, I’m praying I get a few yrs of feeling like a woman rather than a **bleep**. Wishing you all well.

…and not sure why a ‘u-nick’ comes up as a ***bleep**. Ha, ha!!

hello sweetpea - im 52 and have been on tamoxifen about 4.5 years now. i was stage 2b er+ i had lumpectomy, full chemo, and radiation. i had all the typical nasty symptoms … depression, weight gain, mood swings, menopause (although that could have been from the chemo), foot and leg cramps, nasty pelvic bone pain, hot flashes, old looking skin all over my body, no libido, and in general feeling 25 years older than i did 3 years ago.
my latest symptom or maybe its been all along but only now has come to my attention is androgenic alopecia. i make a ponytail and it feels like half my hair is already gone. my dr said whats gone is gone but maybe i can fight to save what i have so i’ve been on biotin, biosil, and am applying minoxidil for the last few months but none of it is helping.
you would think with all the other symptoms, i could just soldier on. but i really resent this last kick in the pants. that my vagina feels as dry like a bundle of twigs is a secret i can keep to myself, but losing my hair is public and just too much. i dont have children or any other surviving relatives so life is lonely enough. i’ve been fighting to keep the hope of finding a new mate even with all the strikes against me, but if i end up bald, well, my odds would tank even further and im pretty sure i’d rather give up than subject myself to the world of dating in new york city (where i live).

please forgive this long winded story, its not often i talk about any of this.

so here’s where i am now. im thinking of stopping the tamoxifen since im nearly at the 5 year mark. i know they said to take it 10 years but i’m still tempted. i dont want to be bald, neutered, depressed and alone. that said, i’m also scared to gamble with my health.

its even harder to decide when i think that i could keep taking the tamoxifen and still have recurrence anyway.

or that life wouldnt even be any better if i stopped. does life improve going off it? i’d be willing to wait out the withdrawal part if there were a light at the end of the tunnel.

even more confusing is that i’m seeing in some forums that some women actually get androgenic alopecia as a result of stopping the tam. so im even scared it could worsen the problem if i stop.
do ANY of the QOL symptoms subside?

you’ve been of for a little while now, how are you feeling now that some time has passed being off? would you do it again if you could turn back the clock?

i really, really appreciate your advice and am sorry to ask so many questions. its just so hard to know which road to choose.