HI all,
I started this thread way back in June 2012 a little over a year ago, thought I’d bring you all up to date. Since I posted this thread I have now put on a staggering 4 stone I’ve gone from a size 8 to a size 18!!! I do 4 hours of intense yoga a week, I swim every other day in the sea (during the summer), I walk at least 10 miles of coast path a week, I dont eat dairy, sugar, I juice veg daily and take vit supplements and I still can’t shift any of this dam weight. Due to such a fast gain in weight Ive experienced quite a few falls (ridiculous at the age of 45) really hurt myself and believe its due to not being used to the weight. Honestly its a nightmare! Just been to see Onc and she agrees that in my case it is the tamoxifen thats causing the weight gain and is testing me too see if I’m through the menopause yet then she will take me off tamoxifen and put me on something else. The weight gain is only one of the SE I am suffering on tamoxifen the others are severe joint pain in my ankles and wrists so bad that sometimes I can’t walk also shuffle around a lot when I first get up out of a chair or bed, migraines with sickness. In my case Tamoxifen was the culprit not everyone who takes tamoxifen will suffer the same.
I was dx in Feb 2011 with primary + secondarys in lungs, I’ve done chemo/mastectomy with no recon/rads I’m on herceptin forever and supposed to be tamoxifen for at least 5 years, I’ve been through so much already to survive but whats the point in fighting and life if your plagued by all these side effects they are so debilitating, at some point you have to make a decision based on quality of life, it is with this in mind that Ive decided to continue taking the tamoxifen until sept this year (making it 2 years on) and then stopping it, my path was 4/8 so I am fairly weakly fed by estrogen. I am truly grateful for everything I’ve taken but enough is enough, I’ve read somewhere that being overweight can cause breast cancer and the irony is that I was never overweight before. Sorry for the rant needed to get it off my chest. xx
I am on Letrozole and have put on weight round my belly area. If I was younger I would just look 6 months pregnant but at 67 I just look fat. I am only half way through my 5 years on it so I hate to think what I will look like by the end.
These hormone based medications seem to affect people in random ways.
Hi, been reading your posts, and struggled with weight gain on tamoxifen too, 2005 to 2010. After only two and a half years off it I had four tumours of varying sizes, types. I was miserable on it and its all that’s been offered so far at this diagnoses other than double mx. I am asking myself, is it worth it? You have got to weigh up quality of life, and for me, I’m not sure it was worth it, because here I am again anyway. That all sounds a bit negative but I wanted to post because your posts struck a cord with me. BC is bad enough to cope with without weight gains, hair loss sore joints skin breakouts mood swings etc. PoPo
Good news for when you come off the drugs, the weight goes too! Stopped drugs in July and suddenly lost 1/2 stone this month. Have been checked, and no recurrence. Just got to shift the other stone I put on!
Riverside what wonderful news! You must feel amazing & very encouraging for those of us still on it. Thanks for posting & stay healthy xx
Hi I know this post is 5 years old but if there is anyone out there could you please answer my enquiring if possible now that you must all have stopped taking it being all is well course… were you ever advised why Tamoxifen puts weight on and if I was to go on a strict diet would I lose it… i’ve only been on it just under three months and I’ve put on over half a stone goodness knows where I’m going to be by the time five years of gone… i’d also lost a stone and a half after having neutropenia the chemotherapy put on a lot of weight… I feel very upset putting the weight on again as I’m going back up to 12 stone and I’m only 5 foot two… many thanks in advance to anyone that may answer xx
Hi I’m new to this forum I was diagnosed with breast cancer July last year had a mastectomy and reconstruction been on tamoxifen nearly side effects are horrendous hot flushes ,fatigued all the time I was normal weight now I’m overweight legs ,tummy,arms, joint pains etc I watch what I eat lose nothing told doctor I wanted to come off tamoxifen they said definitely not I’m a 43 yr old mum of 7 not been near my husband since surgery hate way I look its me not him he’s amazing my breasts different sizes just hate it anyone else feel like this don’t know where to turn go s don’t listen every symptom I get like now pain in arm on breast cancer side now I’m always fearing cancer s come back i had lung nodes removed too now nerve damage on more medication
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I put on 2 stone on tamoxifen. I took it for the recommended 5 years. Suffered the hot flushes etc. I have now been off tamoxifen for 2 years and the weight will not go regardless of diet and exercise. My hair is still brittle and thin as is my nails and the radiotherapy damaged my hearing nerves leaving me with two hearing aides. By hey I am alive.
May God bless you with strength and healing. Thats my prayer for you and all our sister survivors. This is my first post, but it’s wonderful to know about this site. I have suffered weight loss instead of gain. However, i was spared the need for chemo, but after 7wks radiation i too was put on tomaxifen for 5 years. I was told to be aware of signs for bloodclots in legs. And since it was for treatment and not prevention i didnt read about the other side effects for apx 2yrs. Until I got tired of people asking me if id gotten hooked on meth cause what else could cause such rapid wt. loss. So being innocent of their accusations I decided maybe i should read the info provided with each refill. I’ve been off tomaxifen for 2&1/2 years now. Im not still losing but its hard to gain. Any tips ladies? My appetite and tastebuds are improving but I’m still 10 to 20lbs less than what ive been most of my life. My heart goes out to each and every one battling (BC) hot flashes and other side effects . The good news is they slowly go away, mine after apx 18 months into treatment. Being able to sleep about 6 hrs without having to change sheets 1 to 3 times a night was such a blessing I didnt notice my weight loss like others did. I just turned 55 on July 3rd and take no daily prescribed meds and haven’t since ending tomaxifen. So i was wondering if anyone else has experienced this and does it improve. Meanwhile I will keep you all in my thoughts and prayers. It’s a tremendous battle (BC) at any stage or age. But, God is Able. And Im asking Him to touch each and every one of you with whatever you need to win this battle, as he did and does for me daily. May GOD Bless you all and your families. Amen.
Hi. I jumped from a size 8 to 16 with the same brittle hair and nails etc scenario. I had a bi-lateral, radio and chemo then ‘did’ Tamoxifen for 18 years and am now in 26th year of remission (my Onco cannot give all clear due to status of cancer). Tamoxifen
was a challenge and I am Still over weight and I am not happy about the weight but grateful for Tamoxifen treatment.
But I agree, do what feels right for you - hope your side effects and weight resolve x
Hi. Ask to see a Hospital Dietitian. Find one with Oncology experience. Please don’t go on a strict diet - you need to nourish a poorly body. A well nourished person is healthy body. Tamoxifen does cause weight gain which has to be linked to hormones. Reducing food intake won’t help that - but getting advice on a balanced diet and sensible portion control will help. I think we all under estimate our food/calorie intake. Ask for appt, every hospital has a Dietetic department. X
Hi. I had Ensure during Chemo as weight dropped below six stone. I am now almost twice that weight - not good but dieting doesnt work for me. It makes no difference. I am resigned to being a size 8 top half and size 16 bottom half but strangely my BMI is within (just) normal range for my height/bone structure. Its wierd. I think the endocrine effects of Tamoxifen cause a change in the way adipose tissue is laid down in the body and the way in which it stores fluid - If so then it would explain why dieting just doesn’t work for most of us. I wish you and everyone success in trying to resolve weight issues - some people lose the weight when they stop Tamoxifen others, like myself, don’t - but we all have one thing in common We Have Survived Cancer - which is wonderful. X
Hi. All us cancer patients end up having high cortisol levels which mess up our metabolism.
Please watch Dr berg his YouTube channel has helped many people. Also, if tired all the time, it’s to do with adrenal fatigue. He explains weight gain through illness, high stress levels & major surgeries. The importance of vitamin C & Magesium. Rodiola complex tablets has helped to shift weight & following his advice. I had double mastectomy in 2013 & was 9st. Went up to 13st
If the weight is mostly in your stomach area, high chance you have high cortisol. Dr berg explains how to lower them. We need to up our potassium intake. Bananas, spinach & Advacado.
Please ladies don’t suffer.
I’m now down to 12st which before I couldn’t shift 1lb & you must not overdo on exercise Which raises cortisol. Workout every 2 days instead.
Hello Ladies, I have been on Tamoxifen for 4 years and have put on 3+ stones. Previously was wearing tops at size 12 and bottoms size 10 and was active in exercises and took care of my calorie intake. My sizes went to 18 and 16. Also stopped exercising because of my joints were stiff / hurting and didn’t have any mood to do anything as I was feeling tired most times plus with the low moods / anxiety were also not helping.
This year, my doctor sternly told me to try to lose some weight as my glucose and cholesterol levels were not healthy. On top of taking Tamoxifen, I have to take meds to lower the glucose & cholesterol.
So I started eating more healthier… try to cut off carbs and eating half the normal portions. I start my day with rolled oats, lunch and dinner, mostly fish and veg, sometimes, once a week, chicken or meat. One thing, I totally cut out was juicing … used to do juicing of fruits and vegetables on a daily basis and my doctor advised me to instead eat my vegs and fruits.
Also, started taking daily walks and just started on yoga. Till date, have lost about 1 half stones and it does feel a lot better. Hopefully I could lose the rest…
Wishing everyone good luck in weight control. Best wishes xxx
Hi, have been reading about weight gain posted here and have been on tamoxifen for a year after lumpectomy and radiotherapy. Have never been thin but watched my weight. Had lost 5 kilos before treatment and now 10 kilos more. Hate it as it is affecting my health and confidence. Have fibromyalgia with fatigue and some days do not function very well and am getting depressed with it all. Feel that I should be lucky given all those people who are fighting more than me but don’t feel that. Glad to be able to talk about this with like minded people. X
It is not the tamoxifen which causes weight gain.
I stopped taking it myself for 2months. No weight loss & more weight gain.
Chemo& radiotherapy, lowers our potassium levels.
eat foods high in this & you will start to have more energy & see weight loss.
Hello ladies,
I am also on Tamoxifen and yes, I put a bit of weight on following my breast cancer diagnosis (half a stone), but that’s because I wallowed in my misery, as well as my mortality and ate like an ejit!
Two years on I’ve got my head round it all and I’m finally back to CrossFit (but unable to do some movements I was easily doing before my op). As ridiculous as this might sound, one thing I found out when I joined my new gym a couple of weeks ago, is that both Tamoxifen (Nolvadex), and Letrozole (Femara), are the most abused drugs in the body-building world - they are used for the same reasons we have to use them - to inhibit estrogen production, which enables the “hard” look you so often see in body-builders. I was both shocked and fascinated at the same time! Both female and male body-builders take it - and they dont get fat!
I was also “warned” that Taxoxifen would make me fat - but it hasn’t - putting too much comfort into my mouth did! So, the advice I would give is embrace it, get into the gym and start lifting some weights - which will only do you a world of good anyway!
Hi everybody , my oncologist has said it is definitely the Tamoxifen which makes some women ,especially post menopausal woman gain weight. My health board has now started a monthly meeting in the hospital for women like me and there will be a talk on what and what not to eat. It’s all very well saying do exercise but some of us have suffered peripheral neuropathy due to the chemo. and can’t do lots of exercise. I try with a few exercises but suffer a lot. If , like me , the chemo had ruined your taste buds then there are lots of foods you just can’t taste or taste yucky. It’s six years now since I was diagnosed . Partial mastectomy , six months , chemo and two months of radiotherapy. Five years on Letrozole and I’ve had one year of Tamoxifen . I hate the Tamoxifen and have taken myself off it for three months to see if there are any changes. I have weighed up the advantages /disadvantages and if I get some kind of life back without pain, flushes ,dry skin and the fear of cancer that Tamoxifen can start, it will be well worth trying this for a few months.
Its a journey we all go on with different side effects but I have never been so overweight in all my life. I don’t eat an awful lot because of my taste buds so I’ll keep you all posted on the meeting and how I am after three months.
Shona
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