Hi. Has anyone put on a lot of weight with Tamoxifen? I have been on it for 2 years now and have put on about a stone in weight! I try to keep exercising but it doesn’t do any good. I have water retention too. I generally feel bloated all over. I am seeing my Oncologist in February and hoping that I will be put on another drug, however if he does I wonder if the weight will start to come off as easily as it went on! Any tips or advice would be welcome!
I have taken exactly 4 tablets now so I will watch this post with interest to see what replies you get also interested to know when SE’s kick in I know everyone is different hopefully I won’t get any, here’s hoping!
Hi Sunflower
I am not posting to gloat…I just want to tell you that I have been on Tamoxifen for exactly a year and have had no SEs other than my periods stopping which was definitely a plus for me and my hormone related migraines have also stopped!
Most people who post about Tamoxifen do so because they are having problems …and quite right too…but I did want to reassure those who are about to embark on hormone therapy…also I’ve managed to lose 2 stone since I’ve been on it
E x
There seems to be a wide variation in the number of people experiencing SE’S and i am one of the lucky ones (so far)who isn’t.
My advice for “newly prescibed patients” would be to accept the SE if possible and to reduce it. How? For example - water retention and bloating, drink lots and lots of water; weight gain,reduce calorie intake and increase exercise as soon as you put on a couple of pounds;weight loss which may be due to nausea, take medication with food to reduce nausea and if still loosing weight increase calorie intake.There are other SE’S affecting mood, libido and vaginal dryness/discharge and these too can be addressed by lifestyle adjustment,vaginal lubricants/panty liners etc.Think positive and remember these small white tablets are stopping the cancer returning and keeping us NED. Best wishes everyone
It’s really good to hear from people who dont suffer many SE’s. I agree that a lot of people who post are the ones having problems. I found that with the chemo, i was scared stiff after reading of how bad some people felt but i had hardly any SE’s to speak of & definately nothing i couldn’t tolerate. Im starting on Tamoxifen this month so its reassuring to hear that not everyone will suffer with too many Se’s while on it. Thanks ladies.
Thank you carlsberg and queen of retail very positive posts I agree sometimes all you see are the bad reports when people are having problems with the drug, feel so much better reading your posts I really didn’t want to take tamoxifen but now when I swallow a tablet I try to think about the good that it is doing rather than any possible side effects, taking number 5 any minute now 
I’m another one. I’ve been on tamoxifen since the middle of August and haven’t had a single hot flush. I haven’t shifted the weight I put on through chemo (but then I haven’t tried yet), but I haven’t put on any more since I’ve been on the tam.
My diet starts when I’ve finished the last of the Christmas cake!
Dx
Hi,
I didn’t have hot flushes on tamoxifen but did keep putting on weight. My consultant said this was expected and told me not to bother even trying to lose weight while on it, which was reassuring and depressing at the same time! It did give me concrete feet in the mornings with terribly stiff joints in my feet and legs. However,the day after I took my last tablet the stiffness went and I was quickly able to lose about 12 pounds (plenty more still to go 
) . I went on to letrozole and was told it was likely to cause worse stiffness and usually went for the finger and hand joints. It didn’t go for any joints Tamoxifen is accredited with being one of the most successful drugs and the protective effect lasts long after you stop taking the little terrors so personally I thought it was worth putting up with as the side effects went as soon as I stopped it. I hope yours are not so bad that you cannot keep taking it.
Good luck
Lily x
Hi
I have been on Tamoxifen for 18 months and unfortunately piled on the pounds. I also get hot flushes but what I dont understand is before a hot flush comes on I get really cold to the point of goose pimples and shivering even in the summer. Has anyone else experienced this or am I just weird?
Even though I have the above I know they are keeping the cancer away so just get on with it.
Take care
Dottie, my personal thermostat’s always been a bit dodgy, but now I’m on Tam I reckon it’s completely broken now.
I also get the cold chills as often as the hot flushes. I’ve noticed them more often immediately after a flush (perhaps because I’ve thrown the duvet off in an unheated room) but I do also get them on their own and end up having to wrap up warm. And however hot my hot flush, I still have cold feet. There is no justice in the world…
Hi ChoccieMuffin
Its nice to know I’m not the only one.I always tell people I’m like a broken central heating system. Poor girl in work suffers when the fan goes on then off then on, still we are all here so SE’s just go with the territory.
Hello
Finished Tamoxifen nearly 3 years ago, now on Letrozole.
Put on 2 1/2 stone whilst on Tamoxifen and its all gone now, came off steadily. I would add that I did give up work a year ago(all got too much, needed a break)and I went on a healthy eating regime and exercising so that might have helped.
Now on Letrozole, as I have problems with my mouth I don’t know if I want to go on for another 2 years, still thinking about that.
Hazel
Hi All
Another one here who hasn’t suffered too badly, even though I’m on Tamoxifen and Zoladex. I’ve lost 1 1/2 stone in the 21 months since I started taking it. I find the worst SE is disturbed sleep, but at least the night sweats have reduced to a more manageable level.
P.S. Although I got cramps in my lower legs and ankles for a while, I’ve found that those can be overcome by exercise each day.
Hi, I’m on tamoxifen and no weight gain yet! Can anybody tell me why some people get zoladex and tamoxifen? I’m 41 and premeno? Also my periods haven’t stopped but only last a couple of days and not heavy but I would say more a dirty blood than red? Sorry sounds disgusting but is this the normal? Thank u x
Hi,
I wonder if an audit has ever been done into SE’s and age with Tamoxifen. I’d be interested to know if the is any link to pre or post menopausal?
I’m not a tamoxifen basher! Am grateful for the chance it gives me but have many side effects. As you say some people have none. My ONC confirmed all of the following as Tamoxifen.
Aching hips, knees, fingers and wrists.
Vaginal wetness but also irritation and soreness from time to time.
Weight gain.
Fluid retention, mainly ankles and fingers.
Dry mouth and thirst.
But I have no real flushes or night sweats and am sleeping very well! I do exercise, use pads, don’t over eat, have a healthy veggie diet, drink plenty water and squash! So will continue to do what I can!
Good lick girlies
Cx
hello… I am on day 5 and am starting to feel a lil sicky but its ok and not enough to make me want to stop them… was so so worried about the weight gain, I started taking them the same day I started my post Xmas diet and so far I have lost weight at the same rate as I normally would post hol/christmas/nibbly weeks etc… so hopefully thats a good sign…
I did read somewhere that there is no clinical evidence that they make you gain weight but more so that your lifestyle changes whilst you are on them which in turn can be responsbile for weight gain. I have no idea if that is true but a few pounds on is much better than the potential problems of not taking it so I am going to try not to obsess about my weight and try and ‘forget’ I am taking any tablets at all…
Happy New Year and lets hope 2012 is a super fabulous year for us all xx
hi all. i have been on tamoxifen for two years. the longer i am on it the worse my se are getting. i am on zoladex too. i have put on weight. i think for me are the mood swings. i use to be so laid back easy come easy go.i will be glad when i can come off them both. xxx gaynor
Hi Champagne,
I read the same, but it was my ONC who said there was def a link. I know that my lifestyle, if anything has improved in that i don’t skip going for a jog if i don’t feel like it etc but i can understand the arguments. Not everyone will put on weight.
I am 10 pounds heavier than the start of treatment. Here’s hoping you’ll escape the weight gain. Best of luck with it all.
carolyn x
Hi Carolyn,
Weight gain does seem common and to be fair I do not even remember where I read that, just grabbing at any lil straws to give me some hope that I may not put on weight… I am just going to go all out in keeping as fit as I can and try not to get too obsessed with a few pounds, but it would be so much nicer if the treatment was sweeter to our figures
Have a nice weekend
Julie xx