starting on tamoxifen

Really sorry if I’m putting this post in the wrong place, I have read many posts on this subject, but they all seem to be from ladies suffering some of the horrible side effects.
What I would really like to know, is there anyone out there taking this medication who is not suffering or has not suffered any side effects?

love to all
Wendy xxx

I started on tamox and zoladex together 3 years ago (now just on tamox as had ovaries removed 2 years ago) and have just a few mild flushes each day. Its not bad for all of us! Good luck x

Hi lolly

Thanks for that,I really appreciate it. Concerned as well as I had tretment for abnormal smear a few years ago, so wonder if that makes me more at risk of the ovarian cancer se.Anyway, have an appointment with gp on Monday so can have a good chat with her.
Thanks again
Wendy xxx

Hiya, i was really scared about tamoxifen too before i started it in september. I found it harder than preparing chemo in some ways as chemo was for a few months whereas tamox was for five years and felt like it would potentially stop me reclaiming my life and myself. My periods stopped with chemo and havent cone back (i am 37) so i dont need zoledex at present. My hot flushes started with chemo and are probably a bit better now, but they werent tertible to start with and now are quite mild, though kick in after i drink alcohol! But to date i seem to be tolerating tamox well and it hasnt affected me getting my life back on track. Good luck! All the best

vickie

im due to start next week, and like you very concerned . . i dtn want hot flushes and early meno, i want to feel normal.
x

I know what you mean, it’s the fear of the unknown as much a sanything else.

xxx

Well I have been on tamoxifen since end of Feb and its not too bad, I get mild flushes but keeping active means I really don’t notice. Alchohol makes it more obvious to me. I am taking shed loads of evening primrose oil and that helps on lots of fronts and is allowed.
I am also, at my own choice using progesterone cream but I’m pr-

My periods were regular as clockwork until changing from fec to tax and after tax no 1 they went and havent reappeared so I guess thats it! The flushes only started when i started the tamoxifen.

The other se that I find more irritating is i have disturbed sleep…I wake 3-4 times a night but am not sure if its coz I’m hot then cold then hot or just i wake up :confused:

I have been on tamoxifen for two years now,I take it at night with evening primrose oil and I have no side effects whatsoever ! Am pre menopausal and have regular periods since had to have my coil taken out. However, it is a double edged sword as it does make you wonder if no side effects means it isn’t actually working ! But my onc says that isn’t the case for premenopausal women and some women do sail through natural menopause with very little side effects so I am just hoping that I’m one of those that can cope with depleting oestrogen supplies. Good luck.

Logged on this morning and found that you had asked the very question I wanted to ask! I had a mastectomy following DCIS last July and had appointment yesterday as follow-up nine months after reconstruction and for the first time Tamoxifen was raised as a recommendation that I take it for 5 years to help prevent developing cancer in my healthy breast. This is the first time it has been mentioned - just when I thought I had come to the end of treatment and could get back to ‘normal’ life! So am now very keen to get feedback - positive and negative - from anyone. I know nothing about Tamoxifen at the moment and so need to do research before my appointment with the oncologist so that I can decide what to do. Thank you in advance to anyone who can help! Happy Mothers’ Day weekend to all you mothers out there!

Hi Wendy

I also had laser treatment for abnormal smear when i was 22, im 37 now. Dont think this has anything to do with ovaries. My ovaries were removed instead of having zoladex as 100% hormone fed breast cancer.

Hi, I’ve been on tamoxifen since end if Nov, I’m a non chemo girlie, 36 - so pre meno, my periods are as regular as ever, one or two flushes at night, my main SE is I’m always really thirsty, but if that’s the worst then I can’t really complain, I think most of us are concerned about tamoxifen, as it has to be taken for sooooo long! And the list of SE REALLY scary!

Good luck, hope any SE are mild ones :slight_smile:

Hi ya,
I was on Tamoxifen for the full five years, kept my periods but they became more regular and predicable. I had no real side effects apart from I found it very difficult to lose weight ( my lack of willpower may have contributed to that, of course)
The thing I noticed the most though, but not till I had finished was that my skin became brighter and in better condition, really noticable. Like its often said every one is different and it effects everyone in different ways.
Hope this helps you not to worry too much, 5 years seems like a life sentence but it soon goes, all too fast :o)
Clare x

Hi, I started taking tamoxifen at the beginning of the week. Have read about all kinds of SEs and obviously its early days but so far it doesn’t seem to be doing anything obvious to me. I am taking Evening Primrose in the hope that it may minimise SEs as I’m premenopausal but so far so good…x

Hi ! just finished my first month of tamoxifen…have been waking two or three times every night…just too hot…then too cold ! but apart from that its been okay…I was dreading it but as every one tells me it will get better am beginning to feel more confident about the next five years ! start radiotherapy next month so my mind is more focused on that …one step at a time !!!

Hi, I started at about the same time as MG I think. I haven’t noticed any side effects yet, but it is early days I suppose. I am finding sleep difficult, but have done since diagnosis, for one reason or another! I am not taking Evening Primrose oil yet, as it has made me feel sick in the past, and so can Tamoxifen, so I thought I would wait a month, so that I could tell if it was that or not.
What dosage are you taking MG?
Good luck everyone, and it is lovely to hear that a lot of women have not suffered at all with it,
Tracey

Hi

I have been on Tamoxifen for 5 years in June. Apart from bleeding issues I have been fine. It thickens the lining of your womb and approx 20% of women have bleeds on it. I am regularly checked though by gynae and that is all it is.

I am DREADING coming of it as I have to decide whether to have an AI for another 3 years or nothing. My recurrence risk is low anyway and I Cant bear to think of going on an AI as I already have osteopaenia.!

Good luck!

Love to all
ALise x

I have been on Tamoxifen for nearly four years now with no side effects. This was a real blessing to me as following mastectomy and reconstruction following DCIS in May 2007 I was commenced on Arimidex which caused me all sorts of problems; nausea, vomiting and weight loss due to loss of appetite. It was reading other folks experiences of this drug on the Breast Cancer Care forum that encouraged me to go back to the oncologist and voice my worries.

I know I was lucky when my breast cancer was diagnosed in that there was no lymph node involvement and I did not require chemotherapy. This was offered but the benefit was 1.5% increase in life expectancy after five years so I said no as I wanted my life back like so many of you. I wanted to be in control and although being on Tamoxifen for 5 years may feel like a life sentence at the time, it isn’t honest. Being 62 now and therefore had been through the menopause before the cancer was diagnosed I appreciate that my situation is very different from those of you who are much younger than me. I found initially that my breast care nurse specialist was always there to listen and advise on all aspects of my treatment. I still keep in touch when I feel the need. Please remember she is always there for you.

Wendy

Hi everyone

Thanks for the posts and the positive messages.
I’m a fairly positive person anyway, even now believe it or not, but I think I just needed a bit of reassurance. Back to hospital on Tuesday, so I guess that will be the start of it.
I’m kind of hoping to delay it for a while as I have a coil in beacause of heavy periods, so that will have to come out. We have a holiday booked for June and I really want to be able to enjoy that without worrying about periods for a while.

Thanks again everyone, hope the sun is making us all feel a bit better.

xxx

This has been encouraging reading for me, too, as I start the dreaded tamoxifen at the beginning of May, same day as I start rads. I haven’t slept well since dx anyhow, and the chemo has brought on night flushes (fortunately not niagra sweats, to date anyhow), so hoping that the tamoxifen doesn’t do much worse.

Periods stopped after fourth chemo (1st TAX), so am hoping that tamoxifen will keep them at bay as I was highly 8/8 er+, and would feel much more convinced that the oestregen was at bay with no periods. My onc. is open to discussion re zoladex etc if they were to come back, tho, which is reassuring.

Of course this forum is the perfect place to rant/complain and worry out loud about side effects and negative things - I’ve used it for exactly that purpose, and it has been a godsend - but a thread with positive things - or indeed ‘non-things’ such as trivial or non-existent s.e’s is such a relief to discover, too!!!

Sophie xx

Hi All,

I am taking 20mg daily. Have taken if for just over a week, no symptoms as yet. I wonder if some of the menopausal symptoms come from after effects of chemo? I didn’t have chemo, still have periods (mirena coil had to go, had to replace with ordinary one as you can still get pregnant even if no periods and they told me absolutely not to get pregnant whilst taking it because foetus would have “abnormalities” whatever that means) I’m pretty darn ancient so maybe wouldn’t anyway, but don’t want to take chance…

I also started taking Evening Primrose at same time as tamoxifen. Can’t say I’ve noticed any difference there either. Onc and BCN said some people don’t get SEs, we just hear more about people who do. Got to say my mother and mother-in-law both took tamoxifen for years and neither mentioned any SEs x