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Taking a break from tamoxifen?

31 REPLIES 31
Member

Re: Taking a break from tamoxifen?

Hi Theodoloh sorry to hear of your difficulties. If you have had the hysterectomy wouldn't you now be post menopausal? Couldn't you ask for anastrazole instead of tamoxifen as that medication would be more appropriate. You may feel better on an AI instead💖💖
Member

Re: Taking a break from tamoxifen?

Hi just read your post, I'm 7 yrs post breast cancer,chemo and radiotherapy been on tamoxifen for 6 yrs I had a total hysterectomy nearly 2yrs ago, I'm sick of being fat and feel8ng like **bleep** all the time. I'm beginning to start to think My husband has gone off me because of all the weight I've put on I've only missed the gym 4 weeks as to work commitments but omg in 4 weeks have I piled on the ££££££ all around the belly and butt area.im 39 now please help me xx
Member

Re: Taking a break from tamoxifen?

Hi angel, I'm too has taken tamoxifen for 2yrs. Missed it for over a year now, my question is will it be okay if I'll take it on again, I'm afraid to discuss this with my onc, coz I stopped it all at once without him knowing....
Member

Re: Taking a break from tamoxifen?

Tamoxifen does not affect ovary function. It just stops oestrogen sticking to cells. If you have your ovaries removed you will still need to take tamoxifen or an AI hormone drug.

Member

Re: Taking a break from tamoxifen?

Hello ladies,
Have read all the comments on this with interest and thought I would just throw my experience into the pot. I was dx in 2003 (grade3 and strongly oestroegen positive)at the age of 38. Took Tamoxifen up until Nov 08 and then refused to take it anymore because I just wanted my life back as it were. SEs weren't horrendous it was just that I never felt really well on it. Had 18 months getting back to normal (very nice)but have just been diagnosed again in May with a new Grade 2 tumour in same breast (Oes Pos again) so have had MX and started chemo last week. I told the onc this time before the chemo started that my periods had returned and would he test my hormones to see if I was pre or post menopausal. He agreed but said he thought I was bound to be menopausal. Test results confirmed my ovaries were functioning beautifully and I was most definitely not menopausal.
I tell you all this because I wonder if I could have kept the cancer at bay for longer if I had kept taking the tamoxifen. It almost seems to much of a coincidence that as soon as I stop taking it my ovaries start working again and the cancer comes back only this time I've got it a bit earlier than last time. I've not fully discussed all this with the onc but I'm wondering whether to ask for ovaries to be removed this time to avoid taking tamoxifen in future. Seeing him next week for next chemo cycle so will see what he says and let you know his view.
In short, if I had my time over I think I'd have stuck with the tamoxifen or at least asked about ovary removal although this was never even suggested to me at the time.

Member

Re: Taking a break from tamoxifen?

Thank you for that information Minx, I think I will try the week's break

Member

Re: Taking a break from tamoxifen?

I have now been on Tamoxifen for 2 years and suffer like most with the flushes and night sweats which disturb my sleep and leaves me feeling quite tired. I don't have joint aches but I have found that my hair is thinning and I believe is one of the SE's of Tamoxifen. Does anyone else have this problem?

Member

Re: Taking a break from tamoxifen?

Hello Ladies,

I don't have much to offer you that Elsk hasn't already said and I am in a very similar position to her in that I'm still strugling with joint pain (drug induced arthritis) and fatigue 7 weeks after stopping Tamoxifen with my oncologists agreement.

The most important thing is that your oncologist clearly explains to you the potential % improvement in your statistical survival rates if you take the drug.

I have also spoken to my GP at length about the NHS approach to hormone therapy and he told me that we in the UK adopted the same 'belt and braces' approach of Tamox for 5 years for all hormone receptive patients because in Germany they saw a 30% improvement in survival rates 5 years after implementation.

One other thing that may be of interest to some is that in the US some oncologists advocate a weeks break from Tamoxifen if the side effects are bad. They say that often when restarted the SE are less, especially the hot flushes. I don't know why this should be but it may be worth a try.

I do wish there was an easy answer for us all but alas there isn't one, we are all individuals trying to cope with a very complex disease...

Wishing you all a goods nights rest.
Minx

Member

Re: Taking a break from tamoxifen?

Hi Ladies,

I made the decision, with my onc's blessing, to stop taking Tamoxifen altogether as the SEs were so bad after 5 months. However, he calculated my risk of mets or recurrence using a program called Adjuvant Online and he was happy that the drug only made a very small difference and it was more important to preserve some quality of life.

Everyone is different and you need to get your oncs to share your stats with you so that you can make an informed choice. To answer Swissy's question about why they put you on it - I believe it is because it is the standard treatment plan and it is what they will follow unless you question it. I think there are a lot of women out there who don't question the details and maybe put up with the SEs because they think they don't have a choice. For some people, the choice is that it is better to endure the SEs because the drug significantly reduces the risk, but for others, they may be suffering for very little or no benefit.

A last word of caution too - it may not solve all your problems. Many of my SEs have improved so I have no hot flushes or night sweats and my brain seems a lot less fuzzy, but I still have joint pains and I am still really tired. This is now nearly 3 months after stopping Tamoxifen. I am 47 and premenopausal.

E xx

Member

Re: Taking a break from tamoxifen?

Rachy7

Thanks for your post, please let me kinow how you get on at the hospital.

I suppose if in the end we did come off it and it came back you would have a hard time reconciling yourself to it, buy the quality of life at the moment is very poor.

Is there anybody out there who reads these posts that has made the decision to come off hormone treatment and would like to comment

Lindsey

Member

Re: Taking a break from tamoxifen?

Lindsay, you have very similar stats to me and can relate to that debilitation. i have decided to give myself a tamoxifen break- last took it on Thursday. The depression has lifted and I am much more able to cope. I felt so bad on Friday that I had to stop it. I am seeing the hospital in a couple of weeks time to see what they say. We really are stuck- risk of recurrence higher or no quality of life.

Rachy xxxx

Member

Re: Taking a break from tamoxifen?

Thanks for your comments. Still not sure what to do. I think I will try and keep taking it. I just wish the Onc hadn't given me the choice. He sort of said because it was low grade it wouln't matter if I took it or not. I just don't understand this. I'm not sure what my stats are on it coming back.

Member

Re: Taking a break from tamoxifen?

Hi

This is my first time at posting, but on reading other comments I too am so fed up withthe hormone theraqpy treatment, I saw on onc last week and after trying Femara, Extremezene and now tamoxifen he has suggested I take a months break. The chemo and hormone treatment has accelerated whats left of my menopause and im currently so debilitated with joint pain and fatigue that im signed off work for a few weeks.

I now have to make the decision as to wether to come off the hormone treatment altogether to get a certain quality of life. My stats are 55% of the bc coming back and in that 13% is the hormone treatment my tumour was a grade 3 so its a horrible decision to make.

Am totally lost and dont know what to do for the best. Husband says that since giving up the tamoxifen I am like the person I wa sbefore the operation bright and bubbly I think that says it all.

Lindsey

Member

Re: Taking a break from tamoxifen?

It is so difficult isn't it ? to risk reoccurence or endure almost unbearable side effects? I find I am now in this position. Yes, i don't want the cancer to return but the side effects are disabling and stop me living my life to the full and feeling happy in content in any way.I have tried EVERYTHING and nothing makes any difference. i went to the hospital today and did not see my usual consultant. The person I saw was dismissive to say the least. I was upset. i then had a blood test to rule out any other reasons why i was feeling tired and emotional. What a cock up that was ! six attempts to take blood and I had had enough. My frustration is growing daily and nothing or no one seems to have any ideas how to stop all of this. I am on two lots of antidepressants (having ben through nearly all the ones on the market)and these help but still I feel crap. I know people get fed up with moaning etc but if I had a solution I would not be moaning at all. My bc is strongly oestrogen positive.

R xxx

Member

Re: Taking a break from tamoxifen?

Hi all, I was on tamoxifen for 2 & half years,the hot flushes, night sweats proved too much. Then I read(on an American site) that they use tamoxifen normally for 2yrs. I then changed to Arimidex & the pains in my legs were that bad, I could hardly get up the stairs.
I stopped that too. A week ago I discovered mine has come back. My breast care nurse said the time I was on the tamoxifen should be enough. My Doc said that because I was so oestrogen positive, he thought if I hadn't stopped it may may not have come back. Two opinions there, but I know if I had the choice now, I would definately put up with the side effects...Hope this helps xxxx

Member

Re: Taking a break from tamoxifen?

I was 32 at diagnosis and started tamoxifen in december 09. My oncologist mentioned that as i would only be 37 after the 5yrs tamox it is likley i would be on it for 10 yrs. Now theres a thought!!

Good luck with all the SE's ladies

X

Member

Re: Taking a break from tamoxifen?

I need some advice please! I have been on Tamoxifen for 6 months I had a routine check up with my Onc today and he said that as I was feeling pretty low(Cry for Scotland) and I had some aches and pains I could take a break from Tamoxifen for a couple of months to see how I felt. He said the way I was feeling could still be the reaction to the Rads which finished in March, the Tamoxifen or the menopause. He said as I had a small grade 1 tumour for which I had WLE and 25 Rads it would be OK to do this. Why put me on it in the first place? Confused! Don't know what to do. Would the tamoxifen not stop any other tumours?

Member

Re: Taking a break from tamoxifen?

Leucite -a aword of warning about stopping just before your wedding, as tempting as it may be....one thing that seems to happen is you may get a horrendous period and that could be even worse than fluses on your big day!!! I'd get professional advice if I were you!

Member

Re: Taking a break from tamoxifen?

Roadrunner - I am taking Letrozole as I am postmenopausal. As far as the side effects go, they are the normal ones associated with low oestrogen. I take Adcal-D3 as well, to help prevent bone thinning.

Ann x

Member

Re: Taking a break from tamoxifen?

HI Roadrunner
I haven't started them yet, but was told that SEs can be joint pain and bone thinning (I think about 20% suffer these). They are going to do a bone density scan soon as a baseline. I have had phases of having hot flushes and night sweats on Tmox, but I try to ignore it all - just glad to have survived 6 years!
Sarah

Member

Re: Taking a break from tamoxifen?

Interesting info Sarah, thank you. At no point in my treatment has anything been mentioned post 5 yrs of tamoxifen. I had been assuming that I would stop all treatment at that point. What are the side effects of letrozole?

Member

Re: Taking a break from tamoxifen?

Hi all

interested in this, I've been on tamoxifen for 6 months, and suffering horrendous hot flushes, firstly caused by chemo. The flushes died down 2 months ago which was great but have come back with a vengeance over the past couple of weeks. They are not as intense as before but just as frequent. Temperature doesn't seem to make much difference.

I am getting married in Antigua in November and would really like a couple of weeks flush free. I wonder if I stop tamoxifen how long is it before the flushes subside, and what other effect this would have?

Helen.

Member

Re: Taking a break from tamoxifen?

Hi

I have been on Tamoxifen for 3 months now, my major side efect as been the night sweats, which as caused the build of broken nights, and lack of sleep

I have found now that they are subsiding, I was wondering if you could possibly change brands, maybe this may make a difference rather than stop taking it.

x

Member

Re: Taking a break from tamoxifen?

Hi Roadrunner
I was 45 at diagnosis, and put on 5 years tamoxifen. My periods stopped during chemo never to return, and I experienced menopausal symptoms on tamox. They checked my hormones just after I came off and they were inconclusive, but 6 months later they showed I was definitely postmenopausal. I have now been put on Letrozole (sp?) for 3 years. Letrozole I think is a very similar drug to Arimidex - both aromatase inhibitors
To cut a long story short, you can switch to Letrozole after 5 years Tamox. Oncs seem to prefer that you are established as post menopausal first as these drugs work differently.
I was just told about my new plan yesterday, so did a bit of searching on the internet. The study that looked at swapping from Tamox to Letrozole is called the MA 17 study, and quite well known. Very recently, the same researcher has done further analysis that shows that those who were pre-menopausal at diagnosis also benefit from changing after 5 years (see below).
Seems to me that to have a few extra years on pills (rather than changing during the 5 years) may not be a bad plan.

Sarah

article on the new research findings stated 'Furthermore, there is some new information about premenopausal women who have been given tamoxifen and are then given letrozole if they become postmenopausal at any time during their treatment. In fact, such women are greatly benefited if they are switched to letrozole after completing 5 years of tamoxifen – more so than even the women from the MA17 study.'
(you can google this to get the article on breastcancerbydrruddy.com)

Member

Re: Taking a break from tamoxifen?

Hiya

Just after some advice regards tamoxifen. I got my first prescription today and I'm wondering if there is a best time to take it.

Thanks

Krissy x

Member

Re: Taking a break from tamoxifen?

P.S. Forgot to mention I have a Ladycare Magnet (google for info) which bought my flushes down now end before 'summer' started, so I'm continuing to wear it as I daren't take it off in case they get even worse! I was also suffering from really bad itchy skin (it felt like insects crawling under my skin) and the magnet cleared it within a week.

Member

Re: Taking a break from tamoxifen?

Hi Roadrunner,

I think I'm in the same boat as you. Dx at 43, been on Tx for 15 months now and have tons of hot flushes and night sweats, especially at the moment now the weather's warmed up.

I've been wondering how long I'll be on Tz for. My BCN said initialy I'd just stop at the 5 year point then have a 'normal' menopause - great!!! However, I think advise is now changing and it's possible we might be on it until teh natural menopause is reached then go onto Femara?

In any case, despite the SEs, I'd be loathed to have a break from TX because I know one thing would happen - bad periods, and I'm not wanting that!!

Have you spoken to your Onc or BCN? It sounds like you need to.

Bella xx

Member

Re: Taking a break from tamoxifen?

Hi Ladies

Not sure if this will help but I started Tamoxifen 61 days ago!! Hot flushes kicked in at around day 10 and I read somewhere on here that changing from drinking caffiene drinks to decaff had helped. Also eliminating chocolate. I have done this and the flushes have substantially reduced not in frequency but certainly in intensity. I've also found not eating anything with cheese has helped including cheesecake!! I take my Tamox in the evening just after dinner as my neighbour who also had Tamoxifen found this reduced her flushes as well as nightime is always cooler than daytime. Hope this helps.

One thing I do get that I have been wondering about is intense itchy skin which comes on very quickly, lasts for a couple of minutes and goes just as quickly but never in the same spot - anyone else get this?

Leigh x

Member

Re: Taking a break from tamoxifen?

I had a year on armidex and now have done a year on tamoxifen. The SE's on armidex were so bad that I had to come off it. Despite being post menopausal my onc put me on tamoxifen as works diferently. I too am getting fed up of the side effects and think 2013 is a long way off to suffer. When i came off arimidex, i felt great for about 3 weeks but menopause kicked in but less severe. My onc was of the opinion that if quality of life is severely affected then it was better that i took nothing. I had chemo and rads too and they statiscally gave me a better prognosis than hormone drugs. This hot weather makes SE's unbearable- sweating, hot flushes etc and nothing seems to work unless I sit still and don't do anything.

Rachy xxx

Member

Re: Taking a break from tamoxifen?

I have been on tamoxifen for about 6 weeks. Only the occasional hot flash (I'm 41) but I am already noticing irregular periods - got it two weeks apart.

The constant thing that I'm noticing in the last couple weeks is an odd, metal taste in my mouth! I can't find any info about this. I've been taking my meds at lunch time - going to switch to night time just to see if this helps at all. Also noticed the past couple days that my hands are numb/tingling.

See the doctor on June 14 - will have lots of questions!

Member

Re: Taking a break from tamoxifen?

Just bumping it up for you xxx

Member

Taking a break from tamoxifen?

When I first started on tamoxifen a little over 2 1/2 years ago, I was told that I would have 2 -3 years on it, and then switch to arimidex. So when I had my recent check up I was expecting to change, and hoping that a new set of side effects would at least be something different to deal with, if not better. But I was told that the advice has now changed, and if you are pre-menopausal before dx, you stay on tamoxifen - because no-one can guarantee that the chemo induced menopause is permanent, and switching to arimidex and then having the menopause reverse can do more harm than good. So that's me stuck on tamoxifen till October 2012.

I'm getting really down with the hot flushes that nothing seems to be able to control, especially with this hot weather. I'm permanently tired because of the broken sleep. I don't want to give up on tamoxifen, but was wondering if giving myself a break would help. If you stop taking it, how long before the hot flushes stop? Has anyone tried this? Would it be worth stopping for a week / two weeks / a month, then starting again?

If anyone has considered this, or tried this, I'd really like to hear.

x