Thank you Lucy I suppose I thought the lines were more for advice than this sort of thing. I will ring now that I know.
Many thanks
Lisa xx
Hi Ermintrude,
Many thanks for your comments. I know what you mean about being on your own. I really am not myself and have been on the tablets since December now and yes some side effects have improved but others have replaced them and the aches and mental side effects are far worse. It is very scary that a tablet can make you feel like this. I have an appointment with the doctor on 11th April (first bookable appointment I could get). My husband just wants me to stop taking them & have the old me back. I just have no energy & couldn’t care less about anything & when I do react I overreact. Hope you improve. Let me know how it goes.
Love Lisa xx
Hi Lisa, you sound similar to me. I was grade 1, stage 1 no nodes, strongly e+p+ invasive bc. 97% of it not coming back 98% of it not coming back if i take tamoxifen.
My onc said you MUST take tamoxifen as you didn’t have chemo and this will protect you against getting bc in the other side. My surgeon said, the difference isn’t massive. Some people don’t get much in the way of SEs, take it and see how it goes for you but if after a year you tell me that it is having a terrible effect on your life I would agree to take you off it.
In fact one year in I don’t have much in the way of SEs and will stay on it but if I had, I think I would be having the same internal debate as you are. Our prognosis - thanks be and lucky us - is good with or without tamoxifen and it would appear that we do have a choice what to do. I’ll take my extra 1% even if it is only a small number - 1% but 10 recurrences in 1000 difference and I could be one of those ten - but I could argue the opposite if I were having a poor quality of life xx
Hi Mary Grace,
I know what you are saying about added protection even if it is even 1%. But when you are waking every morning (after not sleeping well) to aches & pains, hot flushes, have constant tiredness even through simple tasks, cry for the slightest reason, have dried up everywhere, feel like ending it all, over reacting etc etc when you were a normal level headed person that juggled full time work, step kids, a home & husband etc you ask yourself if this is actually any sort of life for the next 5 years. Thank you for your comments & I am glad you are one of the lucky ones who don’t have any SE’s. But it is also down to quality of life & if I ended up doing something silly the drug is not worth it. Take care & hope you carry on being okay on it xx
This website is very interesting. When you put in your type of cancer etc it tells you what difference Tamoxifen makes to the cancer returning in your case predict.nhs.uk
Hi Lisa,
Well I have been and brought some cod liver oil with extra stuff in them to try to help with the aches and pains I am also on sleeping tablets now to try to get some proper sleep !!! I am actually looking forward to my appointment with the onc on 2 May as I now know I am not alone in this nigtmare !!
All we can do is to try and keep smiling athough inside we are having a complete breakdown - I really really understand.
Keep me posted how you are doing.
x
Hi Ermintrude,
I know other people say its all in your head. But its not. I have taken cod liver oil & evening primrose for years, I am petite, I eat healthily, don’t smoke, drink only midly ( a few glasses of wine now & then), exercise and do everything you should do & always have. Yet still got cancer & really thought my healthy lifestyle would help. I know it is something to do with these tablets as I am not the person I was before December & I started taking these tablets.
Like you said I keep smiling but inside you feel like your going mad. Let me know how you get on with your onc & I will let you know what my doctor etc advises. (Probably anti depressants that will have more side effects) & that is why in my case I am seriously considering stopping taking these tablets.
Love Lisa xx
sending you a sunny hug xxxxx
Hi ladies,
Thanks for all the comments regarding tamoxifen. I’m due to start my five year course in June but am hoping their maybe a alternative as all I read is negative stuff. Does anyone know if theirs any alternatives to premenopausal people? I’m currently on zoladex as I’m only 32 hoping. I would be interested to know if theirs any trials going onto with regards to hormone therapy.
I look forward to hearing from you
Charlotte
So sorry to hear the daily struggles your all having with tamoxifen
Hi Charlotte
My oncologist said that the only other option as I was premenopausal was to have my ovaries removed/shut down with drugs. He didn’t elaborate on this and I got the impression he didn’t want to do this in my case. He did say there were no other drugs on offer other than Tamoxifen. In my case to keep going as long as I could but wouldn’t make much difference if I didn’t. Don’t know if any others know of anything else but this was the info I was told.
I do know not everyone has such extreme side effects so hopefully you will be one of the lucky ones.
Big hug Lisa xx
Hi charlotte,
I,m due to start tamoxifen next month, possibly for at least 10 years as I,m per menopausal too. I,m not looking forward to it, fed up already with all the drugs they keep filling me with. Had a long discussion with my onc about it as I was wondering about having ovaries removed. However, tamoxifen acts like a sponge, blocking cells absorbing oestrogen which is why it works, the trouble is, the ovaries aren,t the only bits of your body making oestrogen, so even if you have your ovaries out , there wil still be oestrogen in your system which is why your periods can come back on it. If they do, you can have injections to shut them down or have them removed but you,d still need the tamoxifen to mop up the other oestrogen. As far as I,m aware, there is no alternative at the mo,
Hope this helps
Herbi x
herbi,
how come you may have to be on tamoxifen for 10 years? i thought it was about 5 years of tamoxifen.
i have just started tamoxifen 3 weeks ago. they have said i can go on zoladax as well, but would be my choice, they have said i dont to as supposedly lower risk group? i am going for second opinion on this before i decide.
TTM
Hi TT ,
Onc said as I would still be premenopausal, technically, in 5 years time there is a good case for continuing with it, assuming it has worked. His thinking is that I wouldn,t magically stop being vulnerable to growing another ER + tumour just cos 5 years was up.
As far as Zoladex goes, I was told I would only need it if periods came back, would be interested in knowing what your second opinion says about it,
Herbi
hi herbi, i will let you know what other onc says. i am waiting for referral to another hospital so may take a few weeks. i think its 50/50 with oncs about the zoladax, some are for it, some against it because evidence of benefits not clear yet.
my onc said her and her team of other oncs arent for it generally unless high risk factors, but that one of the oncs is for it and that he just puts every pre-manapausal women on it regardless of dx ie grade size nodes etc. confusing or what.
gona check about the tamoxifen length now as well.
TTM xxx
Hi Ladies
Can anyone tell me in their case how long it took for SE’s of Tamoxifen to kick in?
I finished chemo 3 weeks age and started Tam on Friday, however since then I have been increasingly depressed. When I take the tablet I feel very lightheaded and away with the fairies! The flushes have increased already and am having bad dreams and very tired. Went to bed Sat night and only got up today!
I think after 4 days it maybe to early to be the Tam and wonder if it is more “C” related or post chemo related.
Thanks ladies x
A quick update to those that sent me comments on Tamoxifen. I have been adviced in my case by my doctor to come off Tamoxifen for a month to see how I feel. If I don’t begin to feel better its probably not the tablets. If I do feel better I then need to try & re introduce the tablets. If I start feeling ill then they will look at if I should come off of them or cut the dosage down. If I go back on with no side effects all well & good. So didn’t take last night so will see how it goes. I will keep you posted x ps I also have an appointment with the clinical psychologist for good measures x
hi there lisa
keep us posted then during your month break from them. sending you best wishes.
TTM xxx
Hiya,
I am seeing my onc on 2 May and will be discussing me stopping the Tamoxifen - just had enough of it.
xx
Hi all, I just wanted to say to those who haven’t yet started the Tamoxifen, to please keep an open mind. I started mine in January. I too was terrified of taking them after all the stuff I’d read about them, but so far I’ve been quite lucky. I hope I’m not counting my chickens too soon, but the only noticeable changes so far are mild flushes. Nothing unbearable at all.
Unfortunately, you don’t hear as many positive experiences as negative. I like to think that isn’t because there aren’t many positive experiences, but because those doing well on it are off enjoying their wonderful new lease of life after feeling better from chemo, radio, surgery and the like. I’m not trying to oversimplify things, just from my experience its better to assume nothing and go with the flow where possible. Some of us are lucky with the meds, but you can only know if you’ll be one of them once you’ve given them a go.
Good luck to those yet to start, and also to those suffering who are looking for alternatives. Hope your teams are able to help improve things for you.
Hey Mads, loved your post - I am one of the lucky ones too and I only get flushes ( about 10 per day usually) and low libido - its managable for me so I am taking the SEs and getting the benefit. I know for some women thats not so, but I reckon we are so luck to be eligable for Tamoxifen I had to go with it if I could,
cheers nicola