starting tamoxifen tmrw, 15 sept 2010, advice needed!

Hi everyone

tomorrow is the day i start tamoxifen. I have been worried about this for months. Chemo and rads are for a short defined period and although chemo was hard , in fact bloo@y awful, there was always an imminent end point. I have not had rads yet but fingers crossed that should be ok-ish given what everyone says…?.

However, tamoxifen is 5 years and i dont want to put my life on hold for 5 years like i did with chemo.

Can anyone who has not suffered too badly on tamoxifen let me know as i need some positive information to offset the impression i have, as so many posts show that ladies are having a terrible time and its affecting their lives badly.

Also, i have just read the side effects leaflet and it mentioned nausea as a common side effect. It made me sick just reading that as i would hate to feel sick like i did on fec for the next five years.

And in my mind i have built it up to being as bad as chemo was. Any views on that?

Basically, without outright lies being told to me, can anyone reassure me that i am likely to be able to function ok with the tamoxifen. I am 36 by the way, in case that matters?

Thanks everyone

Vickie

hi, I was on tamoxifen for 2 and a half years now post men so been changed to aromasin a few months ago. i did not feel too bad at all, a few aches, manly feet and hands , but still manage to work 12 shifts for emerg service. hope this helps ,

it is as they say our insurance cover. ( ps rads are very do able. )

Annie

thanks annie, trying to head the anticipatory stress off before it takes hold!Hope the new meds are being as kind to you.

I started tamoxifen about 3 1/2 weeks ago and have had very few side effects. I’m getting a few hot flushes (didn’t get them during chemo as periods only stopped after last chemo) and last week I felt a bit stiff in the morning but am fine this week. Felt pre menstral this weekend but no extremes. Not sure if more SE will come along or if this is it, but feel that I can keep taking it for the next 5 years. After that my onc wants me to take something else for 3 years, so hoping for the same with that and also hoping that I’m in the 50% that Tamoxifen works for and keeps the cancer away.
I’m on week 2 out of 5 for rads and compared to chemo it’s easy. Travelling to the hospital everyday is the biggest pain!

Hi
I will have been on Tamoxifen 8 years in November and consider myself very lucky to have no major problems with it.

I was originally told that I’d be on it for 5 years but my onc now recommends 10.

As I have thankfully remained NED since diagnosis, I consider taking a daily tablet a small price to pay.

I remain well and work full time and life is pretty much as it was before my diagnosis (even though we all know life is never completely the same as bbc - before breast cancer!)

I wish you well - and trust that you are as lucky with the Tamoxifen as I am x

Hi Vickie,

As you know you are always a step ahead of me so as usual I can’t offer any info. But just wanted to say good luck.

Try and keep hold of that high you have been on since finishing chemo and if you need anything just shout.

Take care and good luck for tomorrow.

Joxx

Been taking Tamoxifen for 4 weeks and no SEs as yet!!!

Viv x

Thanks everyone, hope i follow in your footsteps!Doxey, thanks for your positive post, it helps to hear good news stories. And cat, i hope you stay alright and no side effects rear their ugly heads. I didnt know that there was a 50/50 chance of tamoxifen working or not. I am only vaguley hormone positive, at 4 out of 8 score, so onc said i would get some benefit but hard to measure exactly what. I will be quizzing him further on friday at my rads planning meeting! My rt is at my local hospital so is only 15 mins away, plus they have a reserved car park for rt patients so hopefully that may make the radiotherapy experience a little easier.

Jo, yet again, stop stalking me…!

viv, crossed posts! Hope lack of side effects continues. What brand are you on? Mine is called APS.

Hi Vickie,
Good luck with starting your Tamoxifen, please try not to worry too much about SEs (i know we all do) but im sure you will be fine, its nothing like Chemo honest!
Im about to switch from Tamox to Aromasin and can say that i had very few SEs with Tamoxifen, many people dont. In the first few weeks of taking it i had “slight neausea” but that didnt last very long and was mild, occasional joint stiffness and some night leg cramps and thats about it, certainly nothing that impacted my usual life.
I know a few people do have some SEs with Tamox like all the meds, but most people tolerate it very well so try not to worry to much ,and remember people only post when they are having problems so we dont always here of those that are doing fine .
I use to take mine at night and was on APS .
Good luck
Linda x

Hi Vickie - been taking Tamoxifen since 1st April and have never felt sick. Take mine last thing at night. Do have some night sweats which are worse when the weather is hot, but had them during chemo too. My joints do ache but my GP has checked and that is not supposed to be a SE but a lot of ladies on here do report it. Had some arthritis in knees before dx but it is worse. Am hoping this will improve with time and exercise. Don’t worry I am sure you will be fine once you start taking it. My brand is Wockhert(!). Think positive, my MIL and a good friend took it for 5 years and never mentioned any SE’s. Good luck. Marli x

Hi Vickie,
I’ve been on tamoxifen(APS) for 6 months. I’m 49. I’ve had no nausea at all. Like Marli I’ve had a little stiffness - mostly in my hands and usually only at night. I have had a bit of a problem with night sweats but my onc has prescribed Venlafaxine which is definitely helping. Hope it works out for you.
Jan

Ive been on APS tamoxifen for 2.5 years. The only thing ive ever had is a few mild flushes, and these didnt start until i had been on it for 3 months. I take my tablet first thing in the morning.

Good luck x

Hi Vickie

Good luck with the tamoxifen. Hope it does its job. debx

I’ve been on it since February 2010 and have some SEs of which most are positive such as no periods, no PMT mood swings. Only negative one I have had are the hot flashes but I tried the Ladycare magnet and that has helped reduce them so no real issue.
HTH.

Good luck Vicki i started last week and they are fine for me have a few se but not bad at all. I was worried but no nausea at all, none. Hot flushes that are not too bad but are just disturbing my sleep slightly but am expecting them to go soon
xx

I am in my 4th month of tamoxifen(Wockhardt brand) only SE have been hot flushes but they have not been too bad, my periods have got lighter and more regular. I take mine after my evening meal.I always check when putting prescription into chemist so i get same brand each time.

Hi Vicki, like you I was dreading starting Tamox but I’m now half way through my 6th pack and really do not know why I worried so much. Had a few hot flashes initially when I started it but these settled down during pack 3 and since then nothing apart from the odd ache in the soles of my feet! There is no comparison to chemo!!!:slight_smile: The only thing I did do was get my eyes checked 4 packs in as I found out from somewhere that Tamoc can affect some peoples eyes but again this was fine and Optician advised yearly checks unless I notice anything significant. Have even managed to loose a stone in weight on Tamoxifen so the weight gain thing has not been an issue either. Like every other lady here - there are lots of positives. I take mine in the evening and have been on the APS brand - some brands do seem to give more side effects than others so its worth trying them if you do suffer significant side effects. Best of luck

Leigh xxxx

Hi Vickie, I took tamoxyfen for 5 years. SE started gradually, no nausea. Hot flushes were a pain, but lessened as the years went by. Pains in my joints also lessened after a time. I had a break for a year and didn’t notice any difference, so SE could not have been that bad.
Hugs Maria
PS don’t read about the SE !! just live them as they come. One day at a time, one day at a time …

Hi Vicki, started last month, 4 weeks past last tax and so far hot flushes&night sweats, feel like an insomniac, and muscle ache which I think is a combination of being kicked into menopause, post-tax and tamoxifen. My brand is APS. There are some women who do not metabolise Tamoxifen, there is information on the cancer research UK website.
info.cancerresearchuk.org/news/archive/pressrelease/2010-02-23-key-to-tamoxifen-resistance
5 years or 1825 tablets!