Hello, I’ve been on this site many times and read lots of comments etc but was always too scared to write something maybe because I couldn’t face up to what had happened to me but I seem okay with it now. I’m 34yrs old and was diagnosed with breast cancer in sept 2008 when my son was 4 months old. I had a lumpectomy, chemo and radio and been taking tamoxifen since July 09. And I have to say I’m wishing my life away I hate these damn tablets I can’t wait till I’m 37 and I can come off them. Everyday I wake up and feel like a 90yr old women my legs are constantly hurting, I feel so tired all the time, my mood swings are horrendous my poor husband I’m surprised he hasn’t left me 
i find it really tough with menapoursal symtons and looking after my toddler it doesnt go very well together and trying to lose weight is impossible it’s all round my middle and no matter what I do it just won’t shift. Has anyone got any tips ? I’m seeing a personal trainer twice a week to build my strength up in my legs and just generally want to feel fitter but nothing is shifting, so is this the tamoxifen ? As if us women haven’t been through enough that we have to deal with this awful drug !! Please help or give me some advice . Thank you
Hello Toots35
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June, moderator
I would say “yes” it is the Tamoxifen.
I was diagnosed in November 2010, had chemo, WLE and rads and am just coming to the end of 12 month Herceptin.
My onc started me on Tamoxifen in September, I look it for a month, felt overnight like a 90 year old, mood swings, felt sick, dis-orientated, hot flushes. You name it I had it. So I stopped taking it and within days felt better. When I went to see my onc in November I told her that I wasn’t going to take it again whilst still on the Herceptin and that I would maybe give it another go after that.
She was not best pleased and I know that it is not a popular or easy decision to make. Everyone is different, but I presume you are still seeing your onc from time to time. I would definitely mention it to him or her. Also have you thought of seeing your GP. It does come in a lower dose so that might be answer.
I know it helps prevent recurrence but I have heard about enough people having recurrences who have taken it for the 5 years, so I am comfortable with my decision not to take it at the moment.
Sorry I don’t have any advice on how to copy with the tablets themselves, but I would definitely speak to your doctor about it, as there has to be a certain amount of quality to life as well as quantity.
Sam
Hi Sam,
Thanks for your reply. I’m on yearly check ups now and only ever see junior doctors ( which I suppose is a good sign) but mentioned it last year and they said there is no choice I have to take it… Obviously I could just stop taking it but then I would never forgive myself if it came back but like you say I could take it for 5 years and still get it back and I’ve had 5 miserable years on it trying to cope with the symptoms. It’s so hard isn’t it ? Everyday I walk up the stairs I get this burning sensation in my legs, at the weekend I was so exhausted it was worrying me but after reading everyone else’s symptoms it could be the fatigue. It’s so hard because people don’t understand like my friends and family they think that I’m over the cancer and bsck to normal but they don’t realise what you have to live with do they ? Sorry for harping on it feels good to get this off my chest. Thanks
I know what you mean, sometimes you have to just get it off your chest, there is no right or wrong answer, you just need to have a rant. I went back to work full time in August last year and despite the fact that I am still having Herceptin friends and family think I am fully recovered. And I also think that fatigue plays a part long after the cancer has gone, more so than people think.
Hang in there.
Sam
Hello Toots,
I’m really sorry to hear you’re struggling with the SEs of Tamox. I started taking it when I was 32 and know what you mean about feeling 90! Have you tried a different brand to see if that makes a difference? There is a thread about this on the forums with a lot of info, so just thought it may be worth mentioning in case it’s something you haven’t tried yet.
Also, have you tried cod liver oil, glucosamine and chondroitin for the aches and pains? When I was taking hormone therapy, I found it helped a lot.
Do some research to find out what others have tried and recommended, and give it a go to see if it works for you, too. And have a chat to your GP, onc, BC nurse, whoever to see what they can do for you. You shouldn’t have to suffer with SEs, especially not in silence.
Good luck! Angelfalls xx
Hello, thanks angel falls
I’m going to book an appointment with my onc as my whole body today is in pain I can’t bear this any longer. I feel like I ran the marathon yesterday my legs are killing me my head is fussy my lower back aches. It really pi##es me off that there isn’t anything else we can take to help keep that awful thing away without it affecting our whole body. I don’t know if anyone else has the same but when I drink wine the next day my legs ache ??? Im going to try glucosamine aswell. Thanks xxx
Good luck, Toots! Hope you find relief soon xx