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Tamoxifen

28 REPLIES 28

Re: Tamoxifen

My Onc reiterated what Janet said above, i.e. there's no evidence either way as to whether it's harmful or not.

Re: Tamoxifen

Hi BCC and 021210,

Thanks for your comments and thankyou BCC for the links very interesting but like you said its not that the magnet is dangerous. My BCN had not even heard about the magnet so I informed her and she was going to look into it, I will check with my Onc about the magnet but it works for me so I am not gonna stop it unless it is life threatening and lets face it I've been through chemo and a vast array of drugs since I got BC so cant really see what harm a small magnet will do to my body.

Sarahlousiexxx

Re: Tamoxifen

Hi All,

There was a discussion on the forums last August about the ladycare magnet. The BCC Nursing Team posted the following information at that time:

We just thought it might be helpful to chip into the discussion here. The 2009 guidelines issued by NICE (National Institute of Health and Clinical Excellence) do not recommend the use of magnets to help with menopausal symptoms after breast cancer. This is not because of evidence that shows that they are dangerous- only that there isn’t any reliable evidence to say they are effective. If you’d like to have a look at the guidance, I include a link to this below. The reference to the magnetic devices is on page 16.:

http://www.nice.org.uk/nicemedia/pdf/CG80QuickRefGuide.pdf

If you’d like to read Breast Cancer Care’s booklet about things that can be tried to help with menopausal symptoms such as hot flushes, I also include a direct link to this below:

http://www.breastcancercare.org.uk/upload/pdf/ ... _BCC18.pdf

We also run information sessions about menopausal symptoms that are held at various locations throughout the UK so I include a final link to the section of our website where these are discussed:

http://www.breastcancercare.org.uk/server.php? ... 1c1cec069a

If you would like to discuss any of this further you are welcome to phone our helpline and speak with one of our nurses or trained helpliners - the freephone number is 0808 800 6000 Monday - Friday 9am-5pm Saturday 9am -2pm.

Kind regards

Nursing Team

I hope this is helpful

Best wishes

Janet
BCC Facilitator

Re: Tamoxifen

Hi sarahlouise,

am not sure where but i have heard that some Oncs say no to these, am not sure why or if thats correct so check 1st also just wanted to say that i am on Tamoxifen & so far so good no se's at all so some people are ok on them, am guessing its a bit like chemo in so far as no way of knowing who will suffer & who wont until you are on it.

Hoping you are lucky with se's too.

Sarah.xxx

Re: Tamoxifen

Hi Ladies,

I am due to start Tamoxifen after surgery in Sept and have been dreading it after reading everyones complaints about the SE, I have gone into early menopause from the chemo, so after quite a lot of research found someone mentioned this magnet thing you can buy from Boots for about 20 pounds, which sounds like quite a lot but it really really worked for getting rid of the hot flushes and I would recommend it to anyone else who is getting the unbearable hot flushes, the magnet sits just on the top of your pants and is called 'Ladycare' packaged in purple case, as with the SE this magnet might not work for everyone but it worked for me and 20 pounds is not a lot of money in the whole scheme of things especially if it works.

Sarahlousie xxx

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Re: Tamoxifen

thank you for your replies ladies , i spoke to my bcn yesterday and explained how i was feeling , she has advised me to get blood tests done ( booked for tomorrow ) to see what my hormone levels are . it may be that i can change the tamoxifen , i`m not holding out much hope as i was still having couple periods a year , but the good news is today i feel soooooooo much better , my mood has definitly lifted and the tears and snapping have stopped , the nurse said first 3 weeks are the hardest so i`m almost half way there and look forward to feeling a little like my old self again xxxxx

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Re: Tamoxifen

Hi Trish,
I started tamoxifen in February and apart from the first week or two when I had a few 'dizzy' spells (although that might just be me being NORMAL!)and the regular hot sweats during the night times I've been fine.
I haven't had a period since I started Chemo in July 2010 and that didn't change once treatment was over. I am also 48.
I take Cod Liver Oil capsule daily to ward off the aching bones and have been as active as before BC, infact in recent weeks I've probably been more active than I could ever have imagined! (another thread another time).
I'm sure things will settle down for you. It certainly won't continue for the five years. Perhaps you could have a chat with your GP? It could be something as simple as maybe changing the brand of Tamoxifen as I know of about three different ones and have read some women are better on one make rarther than another.

Karen

Re: Tamoxifen

hi trish
when i stsrted the tamoxifen I felt really naseated and dizzy-it was really awful .3 months down the line I am a lot better and whilat still having low moods [breast cancer generally makes you feel like that anyway I think]
speak again to BCN as mine advised a tamoxifen holiday of two weeks and said it wouldnt harm me-did that and it did help
best wishes
Dianex

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Re: Tamoxifen

can anyone help me please , i am only on day 8 of tamoxifen and as of yesterday feel like i have the worst pmt ever, i cant stop crying and snapping the heads off those around me ,nausea too but got some anti sickness off gp which seem to be kicking it, why do i feel like this ? will it last 5 years cus i`m not coping with it very well , no energy to do anything , i was peri mmenopause and still having the odd period about twice a year , (48) ,can anyone advise please, i feel like i am going mad !

Re: Tamoxifen

hi kazza
feel like i overreacted yesterday when others have bigger worries.Think I am fed up generally at the lack of control in my life- everything is about cancer and nothing simple .
I am waiting for my oncologist to get back to me via breast nurses.
will let everyone know what the take on this after that
thanks for replying
xxx

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Re: Tamoxifen

Oh poor you such a shame about your teeth!! Have you asked your dentist why it cant be done because i cant see how this can affect the tamox????? Its seems rather bizarre to me!!!!
Kaz xx

Re: Tamoxifen

hi all
been taking tamoxifen since april and have put on weight -however eating comfort food and not exercising like I suppose I should so that could explain it also.having flushes at night and low mood at present .However if it saves me going through all this again I am happy -feels like my crutch at the moment
I feel really upset today because I booked to get my teeth whitened by lazer and they rang me today to say that as I was taking tamoxifen I had to be three years clear [which means I have to be 8 years to wait]. I have rang the helpline and noone has heard of a reason that this cant be done- I feel frustrated and very upset and cant stop crying as I feel I cant even have my teeth done without a big fuss...any one know any thing about this ?????????????

Re: Tamoxifen

Hi Kaz - have just skimmed through this thread. I have been taking Tamoxifen for about 15 months and deliberately didn't read the side effects leaflet because I felt that I would end up with them ALL! Do have aches and pains in knees and feet which are not listed as a SE!!
Night sweats also started during chemo and were bad for about a year BUT once I reduced the amount of bedding(dumped the duvet) they have all but disappeared. I do sleep in the spare room I must admit because we both need our sleep and also use a Chillow which I would not be without. No flushes during day but find my body thermostat is a bit dodgy now. Only read the SE leaflet when something comes up and I can't explain it. I have managed to lose 21 lbs with WW while taking it so the weight does not always have to be a problem.I think it is just a case of taking it and seeing what happens. However I think that I will be changed to another drug after 2 years (need to be 2 years without a period before considered post menopausal even though I am 58) Good luck ladies. Marli x

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Re: Tamoxifen

Oh poor you the discharge doesn't sound nice, hope it clears up soon. I am on day 3 of taking it now and have had a bad headache all bloody day!!!!! I hope this is not the start of things....... 😞
Kaz x

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Re: Tamoxifen

I have been taking Tamoxifen for a week now and besides headaches and feeling a bit sick, I have a horrid discharge!!!!! I rand the BC nurse who said it is common and if it doesn't clear up after "A few weeks"then to ring again!!! Yuck.

I go for mapping for my radiotherapy on Monday.

Good luck to everyone and try to keep smiling 🙂 I find it difficult some days but keep on going!!!
Maureen

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Re: Tamoxifen

Hi
Well after having a long chat with my bc nurse i have started taking the tamoxifen so i will just hope and pray i dont get too many side affects. Like everyone else on here i just want to get back to some kind of normality now. Lets just hope that the next six months is nothing like the last!!! 🙂
Good luck to you all and thanks for your replies
Kaz x

Re: Tamoxifen

I had 5 years of Tamoxifen and whilst I put on about a stone in weight no other problems, everyone is different.
Now on Femara, not doing too well,aches and pains and a really dry mouth which has plagued me the 18 months of the 2 years that I have been on it. The upside is that the weight I put on whilst on Tamoxifen has gone.

Hazel

Re: Tamoxifen

HI

I was put on Tamoxifen six weeks ago to try to reduce the size of my tumour before having an MX. They didn't have much of an effect - did reduce the tumours a bit, although I've read other people's posts that said they did - so it really varies. But I haven't had any side effects at all really. I felt a bit sick for the first few days - not sure if that was their fault. But after that felt completely fine. Had one period as was due, the week of starting to take them, but then nothing afterwards. So reactions seem very mixed - but if it stops the growth....

Good luck with everything
xx

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Re: Tamoxifen

Hi Browneyes,

Thats just how I was feeling tonight! I finished my chemo 20th May and am now feeling ok and human again!(after 6mnths of feeling crap) I'm just hoping I don't get too many SE's,I'm also starting Herceptin next month and I'm worrying about that aswell!

Helen

Re: Tamoxifen

Have had mine for the past three weeks and can't remember whether to start 3 weeks after chemo (today) or 4 weeks. Took tablets out tonight toying with the idea of taking now and promptly put them back. Just thinking if I do get SE's, I want another week where I feel relatively human. Bit daft given that I will potentially be on them for next 5 years!!

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Re: Tamoxifen

Hi Kaz,

I got my tablets yesterday and worried a bit when I read the side effects! I have just taken my 1st one tonight,so I will let you know how I'm getting on with them!

Helen

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Re: Tamoxifen

Hi Kaz,

If any of us took too much notice of the side effects we wouldn't have had chemo. Don't worry too much, it is the easiest part of the treatment, you are through the worst!!

Have a good weekend

Julie

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Re: Tamoxifen

Hey ladies thanks for your replies i am getting the hot sweats both day and night anyway now as since chemo 5 my periods stopped! so not to bothered about them although they are not nice!! I like the idea of an over head fan Karen but like yourself not sure if hubby would like it too much..... Oh well he could always go in the spare room!! Hehe.
Tablets are still sitting on the side at the mo as i have not started them yet i did ring my bc nurse yesterday but she was unavailable and she is going to ring me on Monday.
I know that all tablets have se's with them but i was just shocked to read these ones but hey i dont want it to return so i guess these se's are nothing compared to it returning.
Hope you are all well 🙂
Thanks again
Kaz

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Re: Tamoxifen

I've been on Tamoxifen since the start of April. Like Karen I get hot sweats at night, but not sure if that is because of the tablets or the fact that the chemo put me through the menopause.
I have also put on weight and just started a diet this week to try and shift it (yuk!!!).
Also got the joint pains, but that seems to have settled down a bit. My consultant told me that they age people by 10 years,oh the joys of this cancer treatment!

Julie
x

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Re: Tamoxifen

I've been on Tamoxifen since the middle of February and haven't had any problems really. I get the hot sweats at night and have taken to keeping the over-head fan on (much to Hubby's discomfort)but I can still get a decent nights sleep most night.
I put on the weight during Chemo and although I lost some afterwards I think the Tamoxifen is not helping to shift the rest.
I suffered really aching bones to begin with but started a daily Cod Liver Oil capsules and I'm sure it helps as I've been fine for weeks now.
Karen

Re: Tamoxifen

hey kazza,
been on them now 3 months,

dont sleep well, and end up napping in day, flushes mainly of a night, did have joint pain but thats stopped.

its naff and i really didnt want to take it for 5 years. but if it helps my army fight it if it trys to return im up for it.

xxxx
kaz

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Re: Tamoxifen

Thankyou Sharon43 for your comment I guess i will just have to go with it!!! I hope you dont suffer for too much longer 🙂

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Re: Tamoxifen

hi kazza,just to say every one is diffrent.ive been on them9months nearly and im struggling. hot flushes aches and pains in feet and joints menopausel bad moods weight gain. but u might be totaly diffrent love. on the other side if it stops reacurrence then it will be worth it also i dont sleep.

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Tamoxifen

Hi
I have just finished rads and today i collected my prescription for tamoxifen. I have just read up on all the side affects and i am interested to hear if any of you have experienced any of them. I dont like the sound of them. I haven't taken any yet i just wanted to talk to someone first as i dont think it has been explained properly to me any advise would be appreciated, thankyou
Kaz xx