I have just had a mastectomy and reconstruction and have now been told I need to go on Tamoxifen as well - as if I didn’t have enough to get my head around! Having studied the vast list of potential side effects and putting the whole thing off for as long as possible I took my first tablet yesterday. What I would like to know please is - is there anyone out there who hasn’t suffered severe side effects and how long does it take before the side effects kick in? I was also led to believe that it would only be for a few weeks but reading some of the other posts I would guess that isn’t true? It just seems so annoying that when I feel so well and healthy at the moment that I must take a tablet to make myself feel lousy.
Hi
I have been on tamoxifen for 6 months following wle,chemo and rads.I mainly felt nauseous for a while maybe 3 months but I tend to be like that with any meds.Main thing is menopausal symptoms and mine is hot flushes which are becoming less frequent.Night time is hard cos hot/cold/hot/cold etc but am trying to find solutions for this! I am on this for 5 years and am glad there is something out there which will hopefully deter occurence.Good luck.
Hi Vallee,
Like you I started Tamoxifen after MX and recon. I was also so worried about the side effects. I have been on the tablets for just coming up to 4 months and the only side effect I have had is hot flushes at night, which are bearable. I have been lucky enough not to have any nausea, joint pain etc that some people get. It seems that not every one gets the same side effects. It’s the same with every drug I think - for example some people swear by ant-inflammatory painkillers but they make me very sick. Fingers crossed you will be OK with the Tamoxifen. If you do get hot flushes then I can recommend a “Chillow”. They are wonderfully cooling and don’t even need to be stored in a fridge. Good luck. x
Thanks - it’s silly isn’t it, to have a diagnosis, fairly radical surgery and then be worried about some pills? Somehow though it seemed easier to accept the surgery than it is 5 years of side effects which can affect your quality of life. I will look out for a chillow, have heard of that before. Thanks again.
Dare I say it - I have been on Tamoxifen a year and had few symptoms but I have put on weight! Beware hunger pangs! My body craves carbs -hence the weight gain! Caused, I think because I’m not able to exercise as I used to yet and I don’t need the energy giving food. I’ve not really noticed anything else apart from some tinnitus (Whaaaat?). Try not to pre-empt or ‘look’ for symptoms to suffer from. Just deal with it if it happens. There’s absolutely everything on that leaflet that accompanies the tablets and it frightened me too at the beginning, but I think they cover themselves for any eventuality. Many don’t have many symptoms at all. Hope this offers a little more positive view for you! Susie
Hi ladies,
I was diagnosed last May and after 4 surgeries, I ended up with a mx. Then came chemo, I started Tamoxifen 3 weeks ago and had my first rad today. No recon for me yet though!! I too was nervous about starting Tamoxifen after reading other posts on this site. So far I can honestly say the only SE’s have been hot flushes which have got slightly warmer lately and def needing to go to the loo more. I always have to get up in the night now!! No aches or pains or nausea yet.
Hope this helps,
Love to you all,
Jane xx
Hi everyone, Ive just been changed to Tamoxifen after MX,chemo & rads and 9 months on Letrozole. The Onc put me on them after me complaining about Joint pains and my good boob being constantly sore, which naturally worried me. While I stood waiting for my pills in Boots,the lady pharmacist asked would I be willing to go in a cubicle and do a review. She went through my meds one at a time asking did I know what each pill was for and did I suffer any side effects. Up to this point,no-one had ever agreed that Letrozole was the culprit for making my boob sore but there,in this ladys book,in black & white,was written "breast pain" for Letrozole,another thing she said that may interest you girls is that Tamoxifen doesnt cause joint pain. If anybody is interested,when I was going through my pre-BC normal menopause,the “Ladycare Magnet” is a wonderful contraption,
worn in your undies,doesn`t set anything off at the airport and my sweats & flushes decreased immediately going from about 4 an hour to less than 4 a day. Good luck to you all,love Mags x
Hi…I started taking tamoxifen a month ago and have had no side effects apart from the hot flushes. I am really interested in buying a “chillow”. Does anyone know where is the best place to get one from please? Also how does it work??
I started taking tamox in Jan so have been on it now for 3 months. No real side effects apart from hot flushes and night sweats which started during the chemo to be honest. I have bought a chillow - its a strange contraption, you fill it with water and let it soak in and then put it in your pillowcase. It contains some ingredient that keeps cool. It doesn’t stop my sweats but does make the pillow cool, therefore cooling me down quicker. I got mine from Amazon and would recommend it.
J
Hi Paris,
You can order Chillows on line at chillow.co.uk. They are not cheap, but I think worth every penny. I have a large and a small and in fact I use the smaller one more at the moment, although I suspect when the weather is hotter I may need the larger one more. When it arrives you have to follow instructions (straightforward) to fill it up with water. I don’t know exactly how it works but even out of the fridge it is very cool and gives welcome relief when you are burning up. I sometimes put it on my tummy or under my head or even between the thighs. It really does help. x
Thanks Lola…will get one ordered today!
Have to disagree with the nurses comment about Tamoxifen not causing joint pain.
The knee and back pain have been my only symptons and started about 3 months into Tamoxifen.
When I mentioned it to my Oncologist, he said “that will be the Tamoxifen”
Same old story, everyone is different
x
Hi, I have to say thanks to everyone, I do feel a little easier about taking this drug now. To add to Woody24s note. I too was told that there was, so far, no evidence to suggest that Tamoxifen causes joint pain. I am in a research project with Southampton University to study this. I have to complete a survey every 3 months to determine if joint pain increases. At present I have no problems with my joints and filled in my first questionnaire last week before I started on Tamoxifen. I have to say though, after reading a lot of posts, an awful lot of people do seem to suffer with it.
Hi again,further to the debate about whether or not Tamoxifen really does cause joint pains,it would prove interesting if the girls who get the most pain are the girls who have had chemo,my Onc said that chemo causes as much joint pain as anything else,any comments on that? Cheerio, Mags x
Hi Ladies
I started taking Tamoxifen 11th Feb (following SNB & WLE in Nov & MX & Recon in Jan) so only been taking for a few weeks.
Hot flushes started pretty quickly bt joint pain started 2 weeks ago mainly in my knee but also lower back.
I mentioned this to my BC nurse who confirmed that this was a known side effect.
There is another link on site discussing this (sorry cannot remember thread name) where someone had suggested taking cod liver oil to help ease joint pain & evening primrose oil for flushes.
I only started taking these yesterday so not sure how they will help but I will keep you posted.
My friend works in Boots on the pharmacy so I will check with her re query whether tamoxifen does actually cause joint pain as a side effect.
As always it helps just knowing you are not the only one going thru this, best wishes to everyone.
Susan
Susan
It was probably me. I keep going on about Cod Liver Oil and Evening Primrose Oil. You will need to take them for quite a while to get an effect, probably. You can try Glucosamine Sulphate and Condroitin, as well.
Ann x
Hi Ann
Thanks for the advice, my husband takes Glucosimine sulphate & condroitin but I wasn’t sure if I could take these with tamoxifen.
I have taken these in the past & know they help with joint pain, hopefully within a few weeks I should feel the benefits.
Susan
Hi,
I have been on Tamoxifen (Nolvadex D) since May of last year and after few months of the usual side effects, nausea, hot flushes and joint pain I am pleased to say they have all but disappeared. I take a Vitamin D supplement and Paradox Fish Oil capsule which I believe helps me.
Hope all goes well, Love Jan xx
Susan
Maybe you should check about the Glucosamine… I am on Letrozole, not Tamoxifen but my GP was ok with it.
Ann x
I’ve been on Tamoxifen since late dec. 09 no real problems but have developed really bad headaches - never really clearing - plus have the odd hand tremble is anyone else experiencing this? Strange though it may seem I’m an arthritus (yes I know it’s spelt wrong but it’s getting late …well that’s my excuse!!)and my joints have seemed alot better since being on Tamox.Or perhaps it’s because i’m not working…