Member
Posts: 16
Registered: ‎28-12-2012

Re: Tamoxifen experiences

Hi Dzyre
I may have misread this but it sounds as if you have stopped taking amitriptyline without talking to your doctor first. I'm not suggesting by any means that you shouldn't have the right to make your own decision about this but I've taken a lot of psychotropic medication over the years and I know that stopping any of these concoctions abruptly can cause some serious withdrawal symptoms that can be very unpleasant, and this will particularly be the case if you are having tamoxifen (and possibly radiotherapy) as your body won't know what's hit it with all that going on for you (and your brain won't either). I'm sure your GP wouldn't insist on you taking any medication you are really opposed to, and it's very courageous of you to come off the stuff but any GP would want you to reducethe dose very gradually before you come off it entirely, probably over a period of several weeks, or possibly months depending on how long you've been taking it. If you haven't talked to any doctors about this, please do. I'm sure they won't bully you into continuing, just ensure that you discontinue safely.
All the best and good luck with the treatment.
Member
Posts: 37
Registered: ‎13-01-2013

Re: Tamoxifen experiences

Good news for you about the Tamoxifen, and Good luck with the radiotherapy.
I've also suffered depression on and off for many years. I have just stopped taking amytriptiline (sorry not sure of spelling). I decided to stop not said anything to the doctor about it. Tbh most of the anti depressants make my body ache. My hands are starting to ache again so its time to come off it again. I have been told I will need to take tamoxifen and I'm not looking forward to it. Its been 6 years about since my last period. So having to go through menapause sorta sypmptoms again is crap. I suffered bad with flushes so much so if i got out of bed in the middle of the night to go to the toilet I would have to put a towel on the bed to get back in cos the bed was so wet.
I'm hoping they will let me have the 1 week (trial) zapping of the boob. I dont fancy the hour and half each way on train and buses to Weston park every day.
Member
Posts: 16
Registered: ‎28-12-2012

Re: Tamoxifen experiences

Hi everyone,

thank you so much for your helpful responses. They are so much appreciated. Had the meeting with the surgeon, and hooray, no tamoxifen, just radiotherapy as the DCIS has turned out to be a pre-cancer rather than anything more serious. I'm a strange one in that I feel much happier about RADS than tamoxifen, but I think that's to do with being scared about anything that alters mood, given the history of depression. So I feel like it's good news, though once my boob has been microwaved a few times I may reconsider!
Member
Posts: 8
Registered: ‎04-01-2013

Re: Tamoxifen experiences

Hi,
i had lumpectomy followed by rads earlier thisummered. The radiotherapy was fine - localised skin reactions and tiredness nigh might were the only side effects I had. Life carried on as normal.
now I am on tamoxifen and zoladex. I've had night sweats. Evening primrose oil helps with this. Aa part from that, I've fine. I wasn't aware that different brands caused problems until reading iron here. I've been fine.
Member
Posts: 1
Registered: ‎07-10-2012

Re: Tamoxifen experiences

Hi Mishkadog, I have had radio therapy which I was dreading! It was painless and I havn't had any side affects so I feel very lucky. I have been on Tamoxifen for 20months the hot sweats are the main problem, tea, coffee & red wine make it worse for me. I have had to change the way I dress to allow for the sweating , but you do learn to live with it. I have put on a few inches around my waist, which is a pain. I have also had problems down below getting very sore and dry which makes having sex a problem. My husband has been very understanding so I'm very lucky.
Best wishes from Wendy
Member
Posts: 1,082
Registered: ‎26-07-2012

Re: Tamoxifen experiences

I hope so! Mines gone on the top of my thighs too, can't wiggle into my favourite jeans any more. On the one hand of course it doesn't matter at all, but on the other it's just another thing that BC has done to me. Might go sale shopping.....
JCJ Community Champion
Community Champion
Posts: 3,170
Registered: ‎01-01-2010

Re: Tamoxifen experiences

Who asked that camel for it's opinion? Smiley Happy Talking of spreading waistline: I had a bit of a melt down in the first couple of months of the wonderful T & Z combo. (BOTH have 'weight gain' as potential side effects. Smiley Sad)

I've ALWAYS been 'overweight' - I was NEVER baby-sized, being 10lb 8oz at birth! It's been the bain of my life, as every doctor, ever, has blamed my weight first, THEN looked for actual reasons - usually when I point out I've always been O.W. but only had this sore throat and wheezy chest for a fortnight etc!

Anyway, the reason for that rant is that, when at first I seemed to be inflating like a balloon and none of my summer clothes fit, I had afore mentioned bit of a meltdown. I thought I was going to have to buy even bigger clothes - just when high street shops are finally stocking the size 20 I normally take - (and have done for the past 30 years!!) But this has settled down. I still fit into all my clothes! I haven't had to upsize. I don't weigh myself (too depressing) so I couldn't tell you whether I've put on weight, but I do seem to be a little bit podgier round the bit between waist and boobs. A colleague (very slim and elegant now) said she put on 2 stone during the 5 years she was on T, 10 years ago. She's only tiny, so she's clearly lost it again now. So there's hope for us all eh?
Member
Posts: 1,082
Registered: ‎26-07-2012

Re: Tamoxifen experiences

(JCJ, whaddya mean, benchland's not real????? That's a bit like saying Santa's your dad.... Lol, you'll be telling me next I'm not really a camel...... )
You'll have to look in on Benchland to make sense of that I'm afraid! As for Tamoxifen, after a shaky start it seems to have settled into something manageable. The mega flushes have subsided into merely annoying flushes (apart from the 4am one, which wakes me up every time). The queasiness has gone, someone on the forum suggested I try taking tam at bedtime with a biscuit or something else to eat, and that worked for me. I also had a few dizzy spells in the beginning but they too seem to have stopped. So, hot flushes, weak nails, a spreading waistline......yippeee, because I'm here still to moan about such trivial things. Smiley Happy
JCJ Community Champion
Community Champion
Posts: 3,170
Registered: ‎01-01-2010

Re: Tamoxifen experiences

Benchland:
http://www.breastcancercare.org.uk/community/forums/stop-feeling-guilty-small-rant-benchland
This is the first of over 3,600 posts! You may need to skip some! :-)

Dark dark woods (originally about chemo really, I think, but not exclusively. Several of us on htere 'only' had WLE/SNB):
http://www.breastcancercare.org.uk/community/forums/standing-outside-dark-dark-woods

As I said before, not everyone 'gets' the humour, but no offence is intended to anyone,... ever! Enjoy, or not, at your own discretion. You will be welcome to join in if you want to. xx
Member
Posts: 16
Registered: ‎28-12-2012

Re: Tamoxifen experiences

HI Lozza,
Hope all goes well for you with your treatment. It's tough having stuff done at the start of a year; hope you manage some new year fun despite everything.
Member
Posts: 305
Registered: ‎15-12-2012

Re: Tamoxifen experiences

Hi Mishkadog
Thank you for asking the question in the first place! I too found it interesting... am booked for WLE/SNB on 9th Jan then rads and tabs.
Hope everything goes well for your next appointment.
Lozza x
Member
Posts: 16
Registered: ‎28-12-2012

Re: Tamoxifen experiences

Thank you JCJ and Lottie63, it won't be any hardship to lay off alcohol as I'm not much of a drinker (though I love liqueur chocs!).How do I find the benchland and dark dark woods threads? Laughter is always welcome!
Member
Posts: 581
Registered: ‎01-05-2012

Re: Tamoxifen experiences

I too find that alcohol makes the flushing much worse I don't really drink but had a tipple Xmas and suffered for it that will teach me and totally agree with jcj we do tend to look for side effects me included and not everyone gets them but if you do don't suffer in silence . good vibes to all .. oh and benchland is amazing ssuch a special and hilarious place to lurk I do often lol xx
JCJ Community Champion
Community Champion
Posts: 3,170
Registered: ‎01-01-2010

Re: Tamoxifen experiences

Mishkadog, some people are prescribed mild antidepressants to help with both the flushes and mood porblems on Tamoxifen, so that may be an option for you if you suffer with depression.

My GP gave me a brilliant piece of advice with my first Zoladex implant (injected into stomach every 3 months). I TRY to follow it. It was "Don't LOOK for side effects, because you may not have any." Excellent advice. We do make things worse for ourselves by worrying. I know I was petrified about taking Tamoxifen (especially as you only hear from those struggling on it - there's nothing to say about it if you're SE-free!). I also worry every time I get a new brand (ie nearly every month), but so far the worries have FAR outweighed the actual problems. The alternative - the return of the demon BC - doesn't bear thinking about either!!

One thing I found makes my flushes unbearable is alcohol. I never drank much before, so it's been easy to abstain. Can't say the same for tea and coffee though. If I gave up those I may stop the flushing altogether, but I'm not prepared to find out! It's a case of what you can live with and what makes quality of life for YOU.

If you need a refreshing bit of madness from us "resilient ladies" (and man) you could try out the Benchland or Dark Dark Woods threads. It looks like we've all lost our marbles, but we have a wonderful cleansing laugh in an imaginary (don't tell them it's not real!) virtual world. It's not for everyone, but it's certainly helped me to maintain my sense of humour through the dark days.

Keep posting and/or reading (don't frighten yourself with chemo or secondary threads, like I did though - unless you need them! Sometimes too much information is NOT a good thing!). The support on here is amazing.
Member
Posts: 16
Registered: ‎28-12-2012

Re: Tamoxifen experiences

Hi Catseye, JCJ and Lottie63,

Really useful to hear all this, thank you very much for responding. I do hope you all continue to do well on the tamoxifen, it sounds like you've had a gruelling time. I'm so impressed by the resilience of people on the forum, and generosity of the responses. Feeling nervous about seeing the consultant on 3rd Jan; I have experienced severe depression and am still being treated for this, though I'm very much better than I was, thank to SSRIs, so I'm hoping that the diagnosis and treatment won't set me back. I think that's my big fear about tamoxifen, that it will destabalise my mood again. But maybe, I'll be lucky like some of you lovely respondents here. thanks again for responding, and so quickly, and for your good wishes.
Member
Posts: 581
Registered: ‎01-05-2012

Re: Tamoxifen experiences

I have also been on Tamoxifen since August of this year and like other ladies have been given several different brands which for some can cause a problem but not me it seems , I had very bad flushes to begin with and some nausea and aches/pains but they have subsisded now and mainly get flushes at night now but they are far less frequent than to begin with , side effects do vary greatly from person to person some people do not tolerate Tamoxifen very well and other seem to suffer Know real side effects, I have to admit to begin with I did wonder how I would manage on them for 5 years but the benefits of the drug outweigh the side effects so its a no brainer really, I seem to have adjusted quite well on them after 4 months the aches have settled I still get a little nauseau's now and then before a flush but it really is a lot better than I thought it was going to be at the beginning

Good luck xx
JCJ Community Champion
Community Champion
Posts: 3,170
Registered: ‎01-01-2010

Re: Tamoxifen experiences

Many people take tamoxifen for years with no problem' my daughter's mother-in-law being one of them. The most common SEs are hot flushes and weight gain - usually round the middle. I'm also on zoladex to induce menopause, because I was pre-menopausal at DX. So I can,t say for definite which causes what SEs! I get hot flushes several times a day and night, but they just make me feel hot for about 5 or 10 mins and are manageable. Some people report joint pain' but I have no more than I did before - dodgy knees! I have noticed very dry skin and hair, and my nails break v. Easily. This could be the zoladex. My onc has told me to take calcium supplements. Vaginal dryness is also an issue (sorry to be blunt!) But there are products you can use to help. I use 'yes' available on internet. Most of these issues occur during a natural menopause anyway, it's just that we can't take HRT to help!
There has been lots of discussion on here about different brands, some seem to cause more SEs in some people. Over the last 7 months, I think I've had every brand there is, and it doesn't seem to make much difference for me.
For those of us premenopausal tamoxifen is the only option, but if you are already post-m, there are other hormone therapies available, so you may be able to change if you have problems.
Good luck with it. I hope you are one of the many who sail through with few side effects.
Member
Posts: 100
Registered: ‎05-10-2012

Re: Tamoxifen experiences

Hi Mishkadog,
I've been on Tamoxifen since August, following WLE, Chemo and Rads. I'm pre-menopausal, (at least I was before the Chemo messed everything up!), so my reaction may be different to yours, but I thought I would post anyway, as my experience is largely a positive one.
To start off with I had frequent hot flushes and night sweats, so I tried changing to decaffeinated tea, and stopped drinking red wine. This seemed to make no difference so I went back to normal tea and the odd glass of red wine, (phew). After about three months, I suddenly realised I was not gettting the flushes anymore and now wake up only occasionally during the night feeling hot, but it quickly goes. I get the odd ache and pain and feel pretty tired still, but this could probably be blamed on my other treatments, not necessarily the Tamoxifen.
So overall, my experience has not been too bad at all. I realise I have been pretty lucky as I know others have some unpleasant and persistent side effects...hopefully you will be like me.
The brand of Tamoxifen you are given make a huge difference to some people. However, I've had about three or four different brands now and open each new one with trepidation, but again, (touch wood) have not noticed much difference.
All the best with your treatment.
Member
Posts: 16
Registered: ‎28-12-2012

Tamoxifen experiences

HI everyone,
I am new to the forum and had a wide local excision after being diagnosed with DCIS is early December. it's non- invasive, so I am fortunate. I have not had my post-surgery meeting with the consultant yet because of the Christmas break, but I am likely, they tell me, to need tamoxifen and radiotherapy. I would be very grateful if forum users who are on tamoxifen could share some of their experiences with me. I know we are all different and I may not go through the same things as you but it might take some of the fear out of this. I am post-menopause and really dread going through all that again. It's the most worrying aspect of all this for me. Has everyone experienced debilitating side effects or have there been some different experiences? If it is all bad news though, I am prepared to deal with it!