Hi ladies,
Sorry for posting about this problem again (I know its been on here before) only I can’t find an up to date thread on the subject so here goes. I have always been very slim size 8-10 and could eat whatever I wanted, I could still wear clothes that I had when I was a teenager now aged 44!!! have been on Tamoxifen/herceptin (as stage IV will be on herceptin for life and have had excellent ct results recently) since finishing chemo/surgery/rads last Sept and gradually been putting on weight, my mood swings seem to of sorted themselves out but now I can’t fit into any of my clothes and feel fat and bloated, admittedly I have been getting huge cravings for chocolate and been munching on the stuff too much but honestly this is ridiculous, I have given up eating red meat and only eat chicken once a month, I drink a pint of green juice once a day and eat very healthly but still putting weight on, please don’t get me wrong I am truly grateful for the drug and the fact that it is available to me its just that I was actually starting to feel normal/happy again and now after trying on my jeans and not being able to pull them up for the first time in my life I am feeling so fed up and miserable ( of course the endless rainy weather doesn’t help).
Has anybody got any weight lose success stories or advice as too what to eat? and what exercise to do? is it possible to loose weight while on tamoxifen/herceptin? or should I just give up with the diet and eat what I want?
Any helpful replies would be most appreciated.
Love and light to all sarahlousie xx
bump
Sorry to be the bearer of bad news, but basically the answer is you won’t be able to lose weight. I finished 12 months of Herceptin in February (I had it alongside chemo. surgery and rads for a primary tumour) and in the last 2 months put on just over a stone. I hadn’t changed my diet whatsoever. All my chemo nurses said that that is what Herceptin does. I am not taking Tamoxifen.
I have basically cut down to only eat small cereal for breakfast, salad for lunch and a small meat and two veg for evening meal. I have given up alcohol and never touch sweets, chocolate and biscuits. I exercise 4 times a week. I have just about stopped the weight going up but it won’t come down.
I did read that Tamoxifen makes your body hold on to 70% of its calories so at that reckoning to be able to lose weight you would have to exist on about 300 calaries a day.
My advise would be to buy a bigger size. I have had to resign myself to buying size 14 skirts and trousers in some shops now. Unfortunately.
Sorry to be the bearer of bad news.
Would love to hear from anyone who has bucked the trend.
Sam
Ive been on Tamoxifen since last September and Herceptin since last July. (Got my last one on Friday! EEK!). When I was diagnosed in March 2011 I was 10 st 3lb. I dropped to about 9st 10lb initially, with the stress I think. But I gradually ballooned up to 11st 8lb on New Years Day this year!! So nearly 1 and a half stone from diagnosis. Ive managed to get down to 11st but cannot seem to shift any more at all. I dont know whether its the Herceptin or the Tamoxifen thats caused it, but as I finish the Herceptin this Friday, I’ll soon see if its been that. I know Tamoxiffen, due to its menopausal side effects, can cause weight gain.
Maybe we need to resign ourselve to just being fatter!!! 
Hi Samlee,
Thanks for your reply even if its not what I want to hear! Interesting what you said about herceptin and I will look into this further, as for the tamoxifen I already knew it would make me put some weight on but this is ridiculous, I’ve just taken all my jeans to the charity shop!!! nearly cried in the shop, just about managed to hold it back, finding this so upsetting and its making me want to eat more chocolate arghhhhhh. Looks like I’m gonna have to survive on green juice on its own! If I find something that works I will pm you.
Sending you love and light
sarahlousie xx
Hi Mangochutney,
Thanks for your comment, it does seem like I need to embrace the weight gain and be done with it!! I find it so hard as I have always been slim right up untill this utter nightmare began, its a case of you worry if you loose too much weight and you worry if you put too much on, just can’t seem to find a happy medium. Please keep us informed if you loose weight after you’ve finished the herceptin, if it is the herceptin then I wont be able to do much about that, I am on that for as long as it works because of the secondaries. I think I’ll be on tamoxifen for the usual 5 years.
Thanks for your thoughts
love and light
sarahlouise xx
hi ladys was just reading ur comment its took me a year to lose a stone and was dx in april been on tomoxifen for just over a month got to be on tamoxifen for 2 years got cat scan thursday so should know then when rads start really hope i dont put eny weight back on thanks pam x
HI Pam.
Sorry don’t want to worry anyone with this but its driving me mad!!! Trying desperately hard to work out if its tamoxifen or herceptin or whether its both that is the weight gain culprit(s), like I said I have never really put on any weight before this is the first time in my life since about the age of 18!!! so its quite a shock to me and I’m not used to feeling big and finding myself to be quite clumsy, really hope your ok and don’t put any weight on but it does appear to be the normal when women take these drugs, like I said before we are all different and I am so very grateful for being in the privileged position to be able to have these drugs and save my life!
Love and light to you
sarahlouise xxxx
I have found over the three years I have been on Tamoxifen and gained 2 stone that only by eating less than 850 calories a day I can lose weight. I walk everywhere and gave up my car and if I still had it think I would have gained maybe another 2 stone!
If you work it out 850 cals is quite a lot to get through - I never eat after 7pm and always start the day with breakfast after not eaten it for 40 + years! I eat lots of blueberries, banana a day and brightly coloured fruit and veg. I am careful though how much I can eat of the fruits that do have added cals. I sometimes end up eating some cereal in hot milk to calm me before bed or I cant sleep.
I tend to look at my meals and even one day a week eat even less - the trouble is when I have one day of “dont care” I undo all the work I have done to lose weight quicker than a blink! ugh the thing is to keep trying dont give up trying.
I have been told that we cant eat Acai berries whilst taking Tam and I do drink Green tea as this is really good for you. Has anyone else heard of not eating Acai? I know we cant have soy but someone told me that Acai will boost energy levels and this I certainly need around 4pm.
If we all put in our pennies worth we just might come up with an answer.
God bless
Delphine x
well there seems to be alot of ladys who have put on weight on these tam so i need to sort my eating habbits out and cut down on a lot of things and hope it works for me i always found eating less bread helped me lose weight so thats one thing i will cut down on again pam x
hi again well done my shoping. and had alot more on my list lol now iv read ur blog sarahlousie. only prob was my son took me shoping and he hates it. so didnt get them today but will when i go with me daughter iv never heard of acai berrys before or alot of the things in your blog but am going to try them but dont no when to start them before my rads or after got my cat tomoz so should no then when me first one starts pam xx
My Oncologist says that there is no evidence to suggest Tamoxifen is linked to Weight Gain! I have lost 1 st at ww before I was diagnosed, I have spoken to my leader and she has a lady at another club who has been losing weight and has lost 3 stone!
I just want to put the other side for all those of you starting Tamoxifen and getting worried. This must be frustrating if it happens and I really sympathise, but it doesnt happen to everyone. I have been on Tamoxifen for 2 years and have not put on any weight. In fact I have lost some without trying. I actually find the Tam makes me feel full much more easily and has taken away all the pre menstrual munching I used to do! I have no experience of Herceptin.
I was dx in 2003 and during treatment put on a stone, mainly comfort eating during trips to have rads, then another stone during 5 years of Tamoxifen. Tried SO hard to lose some weight whilst taking Tamoxifen, even with exercise and strict eating my weight went up and down by a few lbs.
Then 3 years ago finished Tamoxifen and started Letrozole, now on year 4 of 5 and have lost nearly 3 stone. “How?” you ask, well that I cannot answer but all I know is that I can’t keep the weight on, now down to about 7 st 11 and I am trying so hard to keep my weight up without resorting to cakes and biscuits.
Since starting Letrozole have been diagnosed with Burning Mouth Syndrome which, I am told, 1 in 3 postmenopausal women suffer from, well I am the first I have heard of but the hospital say this and I have read that it can be due to a reduction in Oestrogen which the Letrozole is dealing with, so is that a good sign.
I think that Tamoxifen was the reason I couldn’t losethe weight but I’m not really convinced it is the same with everyone, I think thats it the case that “everyone is different” as is the case with most of the treatment.
Hazel
Hey Delphine,
Thanks for the message, thats the first I’ve heard about eating acai berries being a no go with tamoxifen, I take 2 capsules of acai a day and have done from the start of all this over a year and a half ago, my oncologist knows what I take and has ok’d the suppliment list I gave him including the acai berries, sometimes I just take the acai berries on there own and sometimes I buy the ones they sell in holland and barratt that have green tea in them if you want to see what other suppliments I take check out my this page on my blog http://survivingthebeastwithin.blogspot.co.uk/?zx=8a84b31106cd4d9e
Hi Pam, I agree as soon as I stop eating bread even wholemeal organic bread I start to loose weight, so looks like I’m going to go bread free for a while see if it works for me, thanks for reminding me about that.
Love and light to all
sarahlouise xx
Love the blog SarahLouise!! 
Am due to start rads next on my Bollox-to-the-cancer journey, see my onc end sept…seems a long time away but my surgeon says that’s the right time. So, as well as arm exercises to free my shoulder, resting (yeah, right) to recover from the op, smiling like the Cheshire cat to stop my family fretting about me…maybe I should tackle the half stone chemo fatigue helped me gain before I start tamoxifen…whenever that may be… Stressed, me??? Nah 
Hi Everyone 
Just to say, i too am about to start Tam this week. I have just finished rads after chemo yesterday. I lost weight during chemo changed diet through it. Went off sugar!!! I now only eat healthy food, nothing that has any preservatives/ chemicals in it or with sugar. I eat veg and friut ( the natural antidote to the sugar in fruit and veg is the fibre. Sugar found in its raw state is cane which is fibre) and anything that is natural wherever i possibly can. Our bodies (liver )cannot metabolise sugar naturally so it converts it into fat, hence, the gradual weight gain etc…you can tell i had way too much spare time on my hands whilst on chemo, however, i have learnt so much.
i have managed to maintain the same weight all through radiation for the first time in my life.
This could drastically change the new slim me when i start taking the dreaded Tamox with it’s awful side effects. I am worried - fingers crossed.
Thought the links below may help…
Elle Macpherson aka the body, is best pals with this chap on the links below.
James Duigan: Clean and lean food special | Daily Mail Online.
htmlhttp://www.dailymail.co.uk/home/you/article-1281923/Clean-Lean-special-Time-real.html
http://www.bodyism.com (recipes)
Best Wishes to all on the similar journey, X
Hi Ali H, Just wanted to say thanks for checking out the blog and I hope it helps you in some way, I’ve been writing it since the start of this BC journey and wanted to try and make sense of the mountains of information on the subject putting it all into a blog has helped me to sort through the sometimes confusing and conflicting info out there. As for your arm, I found doing stretching exercises helped me most of all after the my mx with lymph clearance, I did go to a physio for about 3 months before hand as I was experiencing a lot of trouble trying to get my arm in the correct position for the rads, I suggest you check out the exercises on this BCC website as well as any your BCN might advise but also to do one that involves standing next to a wall placing your arm outstretched with hand flat up on the wall then turning your whole body to face forward ie away from the wall try this gently at first especially if you have only just had the op but this really stretches that whole region, my surgeon showed me this one, and through doing this simple exercise I was able to finish my treatments. Please remember that we are all so different and what has happened to me ie:wieght gain might not happen to you its like this whole thing is so individual, I am back on the juicing diet have been for the past 2 weeks and like birdicat have stopped all sugar and juice organic fruit/veg drink a pint of it a day, although I think the extra walk everyday is helping, think I’ve lost a couple of pounds.
Hi Birdicat, thanks for the links and would like to repeat what I just said to Ali H “Please remember that we are all so different and what has happened to me ie:weight gain might not happen to you its like this whole thing is so individual” wanted to mention Kris Carr to you and supply a link that you may find interesting if you have not already found this amazing lady. http://crazysexylife.com/about/ and http://www.crazysexycancer.com/
Love and light to you all
Sarahxx
Thanks SarahLouise, you’ve reminded me of an exercise my yoga teacher showed us for shoulders a while ago, I’ll try it . She’s on holiday at the mo but I thought I would ring her for a one to one lesson on shoulders, she’s trained in massage too so may ask her if a shoulder and arm massage would help. I’ve been doing the exercises the hospital gave me and my shoulder is getting more movement, slowly…
Sugar is my big downfall, especially chocolate, so I’m cutting right down to just a small bit of high cocoa content choc. I’ve cut as much rubbish out of my diet as I can (crisps, biscuits…sigh…) my son has discovered baking though, and I don’t want to discourage him as it’s a relief to see him doing something other than computer games that he really enjoys. What can I ask him to bake for me, any ideas?
There seems to be no ‘medical’ evidence that it makes you ‘put on weight’ everyone is different and we should take it with a ‘wait and see’ view - if you read everything on here it will make you ‘go mad’ - so many conflicting stories!