Hi there - I'm into my third month of Tamoxifen and apart from initial PMT ( poor hubby wondered what had hit him) and mild hot flashes - and I use this term because I really did suffer during menopause these flashes are really nothing in comparison. Something I've learnt is - Yes by all means arm yourself with facts and others experiences but do treat them with caution. It's your cancer not theirs - your life your protecting not theirs.Focus on the positive -Tamoxifen is working well for many of us - It's giving us a good fighting chance of kicking this into touch ( sorry am watching rugby). If you decide not to give Tamoxifen try .....one day you might just be regretting it. Good Luck ....... have just read you've started taking them really hope your still doing well .
I am due to start taking tamoxifen the end of march, I have just finished chemo,and start radiotherapy then too.
I asked the chemo nurse what my hormone status was she said it was 6, and felt that it was beneficial for me to take the drug, and clinical trials proved it to be a overall success, obviously she pointed out some of the side effects as well,
I do have my concerns about taking the drug and find it a bit daunting can anyone advise or reasure, any response would be grateful
thank's ann x
ok I did take one tablet on the day I said I would but then that was it, not sure why. But I have now been on the tablets for 10 days. So far so good apart from heartburn and slight sicky feeling every now and again. worst thing so far is bloating my stomach looks like I am at least 7 months pregnant. spoke to chemo nurse, who referred me to gp who said it should hopefully settle down in a couple of weeks but if not to get back in contact.
Just to say that my GP thinks the tamoxifen was adversely affecting my liver, so agrees that I should stay off it for now. My bloods indicate an improvement since I stopped taking the tablets, and I am due some more tests in a couple of weeks. Later we will decide whether or not to try another drug. (My % benefit would only be small so I am not unduly worried about taking anything).
GP quite sure the blood problems were not due to anything more sinister, so I am relieved 🙂
All the best to you.
Good luck with the tamoxifen. YOu may be absolutely fine on them, as we are all different. Hope all goes well 🙂
Glad to hear you have decided to give the Tamoxifen a go , let us know how you get on .
Hi, I have had lower back pain for about 3 years now, had x ray which showed age degeneration,. however it was bad after op but put that down to lenth of time on table ,11 hours. and now it is bad and I put that down to lack of movement on my part over xmas and snowed in period.
would like another x ray now though coz every ache is now a worry
I started with Arimidex May 2009 and have just changed to Tamoxifen. 7 days into it. Dont feel too bad. Bone pain not as bad. Problem for me is I keep getting back ache. Had it a few months ago and visited onc who said it was ok. I kept taking pain killers and managed even though the back ache was still there. Just a dull ache most of the time. Now its feeling bad again. Usually not so bad during the day when I am moving about, but is very uncomfortable in the evening. I struggle to stand up as though i am too heavy to lift myself, and painful across lower back.
Have to say , prior to dx I only ever had bach ache twice in my life. Now dont seem to be able to get rid of it. Not sure if its the meds or just me getting older. I am 54. XX
Glad you have decided to have a go. Let us know how you get on.
Hi newforestmum,I cant understand why you have been given tamoxifen if you are er-,I thought that tamoxifen was of no use for er- cancer .I know that tamoxifen has a very slim chance of causing womb cancer but this would not be secondary cancer.
best wishes Mel xx
not sure why I have not started taking the tablets really, apart from the lady at the LGFG thing who got seconadries in her womb, which she is convinced was to do with the Tamoxifen. The oncologist who gave me the tablets said that he was giving me the tablets not because I definately needed them as my diagnosis is ER- but because then I could say that I had had everything that they could possibly give me.
anyway I have read all of your replies and have decided to start taking the tablets in the morning. I have been really lucky with my other treatments and not suffered many side effects, so heres hoping I am just as lucky on the Tamoxifen!
Actually, I think I would be pleased to hear that the odd blood results are due to tamoxifen. (There's a nasty beast in the shadows niggling me with thoughts of secondaries....tho' that's highly unlikely).
If I find anything useful/interesting after my next results I will post them on this thread.
Good luck with your results. Take care of yourself x 🙂
I have been on tamoxifen since march 08, I am bloated nausea, cramps, stomach pain to name but a few, I noticed you said about your bloods, my bloods have been a bit haywire since tamoxifen, high calcium raised liver function, just had some more bloods taken last week waiting for results. I know all my problems are caused by the tamoxifen as I never had bloating, sleepless nights etc before.
However after all said and done I feel awful, but jusy have to keep taking them.
I agree that it is certainly worth trying it. You can always stop/change to another drug if need be.
I just stopped mine after a few weeks of side effects and slightly suspect blood test results, but may well go on another drug depending what GP says after next blood test.
Good luck in your decision 🙂
I have Just been reading this thread with interest. I was DX in Dec 07, had WLE, 1 node involved so was offered chemo (which I did have to think about and did have 18 weeks) followed by 20 rads. In July 08 was prescribed Tamoxifen, never even questioned taking it. I did not tolerate it very well so went back to ONC and was prescribed Arimidex, which to be honest was even worse than tamoxifen, so went back and I am now on Aromasin (Exmestane). Have been on that for nearly a year. I think you should at least try it, then be aware that there are alternatives and as others have said it may help you. You need to throw everything at it you can. I agree with what many have said here that everyone is different, but until you try, you do not know how you will react. It will be no where near as bad as chemo and rads. Go for it Lisa.
here, here roadrunner! I was unsure about takin it, but then got things into perspective rather quickly! If I recall Taxmox gave me around 8%, 1% would have been enough for me! Only been takin it for 2 weeks, yes get the hot flushes, but got those through chemo so not noticed any other side effects - maybe a bit too soon yet?
Yes I never thought I would not takeit after mast, recon and chemo taking a pill is simple !! , I was just very surprised at myself as to why I felt scared of it, think maybe I was still full of chemo , I will take anything to stay alive. lost my mum to bc in the 1970's and boy did she suffer for years , drugs very limited then and the rads were very severe.
keep well, keep warm
Sorry, I expect I'm going to upset some people here, but it has to be said:
BREAST CANCER KILLS!
Tamoxifen has been the wonder drug for our generation, thousands of lives have been saved by it. BC is not some fluffy pink problem that can be discounted, 11,000 women die every year from it. If you start the drug and then decide the side effects are too severe for you, that's up to you (although there are alternatives - see your onc)but not to take it in the first place, just because one lady was upset by it, is just plain daft.
To put it into perspective - for me, tamoxifen gives me an 8% extra chance of surviving ten years (that's after taking into account surgery, chemo & rads but not herceptin). If all the ladies who were diagnosed with BC in one year had the same prognosis as me, that would be an extra 3,600 lives saved. And that's only those diagnosed in one year.
Yes I have hot flushes, but then I would be getting them anyway as chemo put me into an early menopause. It sems a small price to pay for life. I don't just want to be here in ten years, I want to be here in 30 years.
Just to add to the ladies posting above, I started Tamoxifen on 1st December and was more apprehensive about that than the rads. Touch wood so far I have not had any side effects but was told that everything would settle down after taking it for about three months anyway. My onc was really helpful giving me the pros and cons of taking it and I do think that if it's recommended then it's at least worth a try.
Wel took first tamoxifen lst night,..............had god nights sleep, when I woke Snow melting wow they are good !!!!!
take care xx
Hi. Also been taking tam - 1 week now. No real problems. Give it a go! You can always review it later . Love C
only been taking it since 2nd Jan so early for me, but so far so good. I am 6/8 ER+ so prepared to give anything a try! The SEs freaked me out, spoke to my GP who said not really negotiable - you need to take them. So I am. Felt a bit nauseaus for first couple of days, but settled down nicely, so far so good ................ As Linda says, this is an extra defense for me and they wouldn't prescribe if they think you don't need it! give them a try and see how you go!
Hi , just to put the other side of the coin.......I have been on tamoxifen, CP brand,since April, I take it at night with an evening primrose oil tablet and I have had absolutely no side effects at all ! I am 100% ER positive and it just wouldn't have entered my head not to take what was offered,yup I know I'm "lucky" that I'm ok on it and some people do have problems with it but like has been mentioned we are all diffrent in how we react to medication,go for it and see how you get on.Good luck.
Hi Lisa !!!
Think we already know each other LOL!!! Nice to see you on here.
As others have said, people tend to post/go on more if they have bad SE's from Tamoxifen or anything else.
Personally I have had:
very mild nausea for the first week or so
occasional foot cramps (but have had those off and on all my life)
spots !!!! ( although they seem much better this week)
very occasional hot flushes in the evening
NOWHERE NEAR as bad as I expected, although I was nervous about taking it and delayed it for a week while I got my head round it. I started it on Sept 11th 2009.
Good Luck Lisa,
AM and Evie
Oppisite effect to me .....
Ive been taking them since Oct and xmas day i drank a bottle of wine and no effect where as normally one sniff of barmaids apron and i was on the floor LOL..But thats not to say im gonna carry on drinking like that LOL
hope your all doing fine
Hi Lisa, I came off tamoxifen because of se's. You need to do your own research on the drug and then make a decision looking at the percentage benefits to you. If you want to PM please do
AM i cant drink alcohol either!!! makes me really nauseaous!!
I've been on Tamoxifen for about 6 weeks now. I'm 28 and I'm only 10% ER + but my Onc encouraged me to take Tamoxifen for 2 years. I also delayed taking it for nearly a month because of the scary sounding side effects, it really did scare the bejesus out of me.
I was getting hot flushes and mild foot cramps prior to starting the drug which must have been chemo induced, and for me personally they have since reduced considerably. My periods stopped after my final chemo, I'm just waiting and hoping anxiously for them to return.
So I am not having such a bad time on it, like I first envisaged. The only thing that springs to mind is that I cannot tolerate alcohol like I used to... no bad thing I guess!!!
Good luck with your decision
I also worried about starting on Tamoxifen after reading so much about the bad side effects and speaking to someone who'd had such extreme side effects that she stopped taking it, but in the end I decided I should at least try and see how I got on. I was particularly nervous about feeling nauseous because I suffered very badly with nausea and sickness during both my pregnancies, so thought I might be prone to it. Anyway, I've been taking it for two months now and so far so good. I always take it at breakfast and apart from feeling rather hot in bed each night (but not truly sweating), I haven't noticed anything. Best to at least give it a try and you may be lucky. If you find the side effects too bad you can always come off it again, but at least you will have tried. I would rather try and do anything to prevent more cancer.
Id deffo take them or atleast try them.
You dont know whats gonna happen till you try them, like everyone else has said, every drug has side effects, some people get them and some dont, but worth finding out.
For me, Id rather put up with a few side effects knowing that I was taking and doing everything poss to help myself from getting a reacurrance.
Remember we are all here if you have anymore concerns or need any tips about any side effects you may OR may not get.
Much love x
Im 32 and sat on my script for about 6 wks before going and getting it. Ive had mild nausea and very mild warm sensations- not flushes as not very strong and thats it! Worth a try for sure as you maybe lucky too.
Remember people often post when they have a negative experience of a drug rather than if they had no side effects at all.
I was diagnosed in 1999 aged 38 and had 5 years of tamoxifen with no side effects to speak of. I felt it was well worth taking and, like Suzan, I feel that it may have delayed my recurrence.
The best thing I can advise is that you have a talk with your bcn and look at the pros and cons. Remember, you can start to take it and see how it goes.
It always worries me when anyone is put off from taking Tamoxifen because of possible side effects, Like all drugs it can have side effects but that doesnt mean that you will get them , Ive been on Tamoxifen for 2 years with very few side effects, mild hot flushes, slight nausea for the first few weeks of starting them (long gone) foot cramps and some stiffness but all these things are just as likely to have been caused by the chemo or an early monopause.
A few people do get bad side effects but many many people dont , i think we need to remember that people only post when they are expierencing problems and that we dont hear of those that are ok as there is no need .
Tamoxifen realy is the Gold standard Treatment if your er/pr+ and is your best and possibly only defense against a possible reocurrance after all other treatments are finished, i would encourage anyone who can have Tamoxifen to at least give it a try as you wont know how it will affect you untill you do and the chances are that any side effects will be few.
Tamoxifen is usealy taken for 5 years and is also said to give a further 5 years protection after this, its not a cast iron gaurentee that we wont get a reocurrance but its the best defense we have got and for me i will take anything that will lower my chances of BC coming back.
Im on the APS brand and take mine at night , give it a try and see how you go you can always stop if you dont get on with it.
All the best
I was prescribed tamoxafen but decided not to take it, will send you a pm with the details. It will be two years next month since not taking it, if that makes sense.
Lisa, I started Tamoxifen last July, yes it does have side effects but I personally feel its a kind of safety net for me.
you have been through so much, and at then end of the day it is personal choice, why dont you give it a go, everyone is different
take care hun
hi lisa I was first diagnosed in 1990 took tamoxifen for 8 years, yes they do have side effects, what doesnt ?? but I had a reccurence in 2008 and had a mastectomy.Who is to say that if I hadnt of taken them that I would of had a reccurence earlier on. My opinion is I will take everything that they have got, this is a good drug and at your age take everything to get the longest you can I was 39 first time around. You may be in the menopause because of the chemo, you may not. I know this is a personal decision but not one that should be taken lightly talk tosomeone who knows and not one of the women at the feelgood centre best wishes love suzan x ps I also had a baby at age 44 and then went back on tamoxifen.
I have not been on this site for ages, so here is an update for those of you who remember me.
diagnosed Dec 2008. Masectomy Jan 2009. Chemo Feb to Jul 2009. Radiotherapy Jul & Aug 2009. Herceptin May 09 to Apr 10. Prescribed Tamoxifen Oct 09, but not started taking the tablets yet!
met a lady at a "look goo feel good" session who had had problems and put me off taking the tablets.
started reading the posts about the side effects and still not sure about taking the tablets.
I am 40 and had my last period 31/3/09 during Chemo. I am already having hots flushes day and night.
Anyone got any advice?