67946members
357740posts
cancel
Showing results for 
Search instead for 
Did you mean: 

tamoxifen belly

40 REPLIES 40
Highlighted
Member

Re: tamoxifen belly

I gained about 15 lbs (about 1 stone) after starting tamoxifen almost 5 years ago.  I had to quit Arimidex because of joint pain so severe I had trouble functioning.  I get to stop the tamoxifen in mid-January, and my oncologist thinks I will be able to lose some weight then.  I can't wait!

Highlighted
Member

Re: tamoxifen belly

I have a cancer nutritionist and she told me the Tamoxifen caused adrenal fatigue. This causes high cortisol levels which leads to belly fat. I have never in my life had this big of a belly even when weighing in 15 pounds more. I stopped Tamoxifen after a year just three weeks ago. I am cutting way back in caffeine which causes high cortisol levels and doing light to moderate exercise every day for an hour. Also had to give up dairy which can cause inflammation and I am taking lots of fiber. Just started all of this so not sure what the results will turn out to be but I sure can not wait to get rid of this huge belly!
Highlighted
Member

Re: tamoxifen belly

Increased belly fat is a symptom of menopause and tamoxifen exaggerates it.

 

https://girlvstamoxifen.wordpress.com/2016/11/22/tamoxi-tummy/

Highlighted
Member

Re: tamoxifen belly

I went from size 8 to 12/14 after treatment. Finally got rid of my tamoxifen belly by having DIEP reconstruction - every cloud and all that!!
Highlighted
Member

Re: tamoxifen belly

I ask my oncologist about the belly, and if it's tamoxifen and she never says it is. They bury that part and blame it on menopause. The belly is disfiguring.
Highlighted
Member

Re: tamoxifen belly

I had the oopherectomy at 50 and it was a breeze. Nice to put the periods behind me, and to be rid of the ovarian cancer worry!
Highlighted
Member

Re: tamoxifen belly

I could barely move I was so stiff a few years ago. My knees would crunch like celery when I sat down and everything ached and I felt 75 instead of 50.. I had been rear ended by a drunk driver and was furious that this woman took my youth and vitality from me. My ortho finally said, perhaps it's the meds. I had switched to anastrazole from tamoxifen after gething the oooerectomy and made the switch just before the accident. I read side effects, called my oncologist on Christmas eve to complain and she said stop the drugs. Guess what, within the week I got my life back. Felt great and got back on the tamoxifen after a break. I am on it 9 years now. One more to go. I am a whale. Went from a size 8 after 3 kids, to an enormous belly at a size 14. 16 likely ahead. I never thought I would see the day.

Fortunately, my new husband loves every inch of me! But, it's a challenge for me w clothes, etc. I am not out and about as I used to be, a bit embarrassed by the Tammy belly. Other than that, never been happier, 9 yrs post-lumpectomy and radiation, BRCA 2 positive. I thank God for every day he gives me the gift of being alive and well!
Highlighted
Member

Re: tamoxifen belly

I've been on zoladex and anastrazol but it nearly crippled me, so back on tamoxifen and now can walk again but still very stiff and lethargic. Am going to have oophrectomy (ovaries and tubes out) in august and hope that will help me to get my body and energy back. Feel like a whale on a daily basis.
Highlighted
Member

Re:femara belly and face and arms

Hello, I really couldn't find how to post - so I am replying here! I have been on femara for about 3 months. For the first, I could work and do my yoga classes - but was exhausted by 200 p.m. So I did not do anything but lie on my couch. For the past 4 days or so - I do feel better but still now quite dizzy!. However, I gained 5 lbs (that I recently lost!) and big jiggly arms and bloated face! I noticed you are on different drugs. But now I have a little more energy I will concentrate totally on using weights and walking to try to get back to normal. i am 64 yicks! But have been a certified aerobics instructor for 30 years. Therefore, look younger and the dr's are always amazed at any tests I do. However, I was told my bone density is in jeopardy on these pills. I had and outstanding result before this, even after chemo. Suddenly, my nails are ragged, weak and breaking. So I can imagine what's happening to my bones. The dr give me vitamans with calcium and D. I also eat a lot of cabbage a week - which thankfully I love and is cheap but rich in so many things. Well, just wanted to add my two bits. Wishing you all good health and good results. 

Highlighted
Member

Re: tamoxifen belly

Hi kitty and jobey, looks like we're all in the same boat. I turned 50 last week, 47 at dx. Always been a healthy eating gym bunny and did yoga throughout chemo. My weight normally hovers around 9 stone 3-7 (size 10). Went down to 8st (size 😎 during chemo and now about 10 st 6 (just squeezing into 12s bought at charity shops as refuse to go higher!)

Was on tamoxifen, moved to zolodex and anastrazole because of mood swings, depression and suicidal. Zolodex gave me drenching sweats, intolerable so stopped all meds summer 2016.

Sad to say I still have my belly, fat thighs and arms. Hate it, and don't know how to get rid of it. Massive diet starts after Easter! I walk several miles twice a day with dogs, do yoga, aquarobics and combat, really don't eat a huge amount. Have recently deduced that cancer was keeping me slim - surgeon said I had a very large but slow growing tumour which had probably been there for years. It's not a recommended weight loss plan but it worked!!!

Andeezegirl I had implant recon, I've been joking with the kids that I'm growing my diep boob in case the implant fails!

Kitty. I've have horrendously achey joints, hips really bad, knee due steroid injection, have already had steroids into base of thumbs and big toes, now my elbows have started.

I does all seem to point towards premature aging, menopause etc. Feel 70 with my middle age spread, bing wings and aching joints.!!

Keep us posted on any weight loss tricks you find xx
Highlighted
Member

Re: tamoxifen belly

Wow, I too have the large belly
Highlighted
Member

Re: tamoxifen belly

I'm also the heaviest I've been without being pregnant, have gained over a stone since starting Tamoxifen 2 years ago and really struggling to shift it! I'm constantly dieting and walk miles with the dog every day, I do remind myself I'm knocking 50 now and am just happy to be fit and well but boy I would love my flat belly back!! 🙈🙈

Highlighted
Member

Re: tamoxifen belly

Well all this explains my "I'm the heaviest I've ever been" conversations.lately. I've been on spinach smoothies, carrot juice, bouncing around the living room to davina.... but weight creeping up. Ah well, I'm alive., that's the important bit. While I'm on here, has anyone suffered any joint/bone pain?? My hip is murderous at times. Never had a problem before, but considering purchase of a stanner stair lift and I'm only 48. (Other stiarlifts are available)
Highlighted
Member

Re: tamoxifen belly

Hello. Sorry to hear about your weight going down and then up. The body changes are not welcome. I am going on 8 years in remission. I don't think about bc unless I have some unknown pain. Then I'm frightened briefly. I did change my diet--eating little of simple carbohydrates. I lost about 8 pounds and stabilized at 123. I
attribute my body changes to Tamoxifen and age. I do leg lifts to strengthen abdominals. I'm reminded of a health professor saying women notice their clothes fitting differently without gaining weight. Cause is hormonal changes causing fat shifting. I agree. Focusing my happiness on being healthy. It takes a while to get there so give yourself a break. I wish you all the best as you get well.
Highlighted
Member

Re: tamoxifen belly

I've been on Tamoxifen for three months and for the first 2 1/2 months noticed no weight gain instead I feel I was losing it...then last week I noticed my clothes were getting tighter when I weighed myself I'd put on 8 1/2# what the devil am I going to look like in five years time this is really scary x

Highlighted
Member

Re: tamoxifen belly

Hi Sunflower_1.. what kind of reconstruction did you have done was it the dieppe flap as I'm due to have that done in the next few months.. and was hoping it would get rid of this Tamoxifen belly 😁X

Highlighted
Member

Re: tamoxifen belly

Hi.. what kind of reconstruction did you have done was it the  dieppe flap as I'm due to have that done in the next few months.. and was hoping it would get rid of this Tamoxifen belly 😁X

Highlighted
Member

Re: tamoxifen belly

I'm the same although only took tamoxifen for about 10 months. I think of it as my chemo belly as that's when it started. I put it down to chemo and tamoxifen throw you into (early?) menopause and so the belly is middle age spread associated with that. Hate having to buy more day clothes!
Highlighted
Member

Re: tamoxifen belly

Hi Hooper,
Glad I'm not the only one, I feel to that have put on about a stone and half, a lot of people said I needed to, but have never been like this, last year I decided to join a gym not that I'm a fitness fanatic just do the easy stuff! I mostly use it for the pool, jacuzzi ect! I found that also was getting a sore back, everything was going through head, but honestly I can say since I have a little swim it has went away, the stomach I don't think will ever get flat again, I used to fit into size 8 clothes but now it's 10 or 12, I will say though I do feel better for it, but don't want to put anymore weight on, I have been watching what I eat now, but must admit do like chocolate now and again, we got to be happy, especially considering all that we've been through. x
Highlighted
Member

Re: tamoxifen belly

Hello,

 

Yes, I did complain about a large belly since Tamoxifen particularly since a friend of my age (with her own large belly post menopausal related I guess) remarked that I did not have one. Well, I completed Tamoxifen in January and noticed it after that. I guess I shouldn't complain. The hematology oncologist disregarded my complaint attributing the larger belly to age and probably thinking there are real things to complain about. I do abdominal exercises M-F so with muscle strengthening I feel better although the fat is still there. I'm about 4# lighter which got me a little worried as I didn't attribute the weight loss to eating less. I seem to be stabilized at this new weight (5'5", 121#). So my thoughts are to live in today, feel good about the way I am and don't stress over what is out of my control. I'm happy at 7 years out that I haven't had a recurrence. It takes time to adjust. As long as you are on a healthy track, then you are doing what you can. The best to you.

Highlighted
Member

Re: tamoxifen belly

HI.  Saw your post from last year, I just started taking it five months ago and am in the same boat.   I eat really healthy, I mean really healthy to keep BC from recurring and exercise regularly.  All of a sudden, I have this big belly.  Were you able to find any solution or do I have to consider it the price to pay to keep this **bleep** from coming back?

Highlighted
Member

Re: tamoxifen belly

I started eating less and particularly simple carbohydrates. I actually weigh less than I have for many years. I'm 5'6" and 126#. Lost 6-8#. I didn't have radiation or chemo, just a mastectomy and Tamoxifen. I didn't notice the belly fat until the last few months. I think it's getting bigger even though I've been off Tamoxifen since January. Someone described it as a man's belly, and that's exactly what I look like. There is no spot reducing so I don't know how I will be rid of it. My niece's 18-month old pointed to my stomach and said "pillow". Losing weight is not an option for me. I'm going to the gym to get a trainer to see if strengthening my stomach muscles will help me to look better. I can't stand looking at this myself. What will women look like when they've taken Tamoxifen for 10 years, the new recommendation! Ugh. If you have any ideas, please let me know.

Highlighted
Member

Re: tamoxifen belly

I am on tamoxifen and am skinnier now than I was at dx. I think it must be variable and some SEs affect some people more than others. Some of those I was dx with have put more weight on during chemo with steroids and certain types of chemo boosting appetite but I didn't have chemo and with surgery(ies) plus rads and tamoxifen I was an 8 on dx and am a 6 now x

Highlighted
Member

Re: tamoxifen belly

I am another one with Tamoxifen tummy.Doesn't sound much but the last four pounds that I gained before treatment I just cannot shift despite swimming, walking and healthy eating. Small weight gain but tummy swollen so much I went to the GP who agreed and sent me for an abdominal and pelvic scan. Nothing was amiss although tummy has remained. Had reconstruction on 22nd of June and am eating healthily. Being quite careful because if I dont weight and tummy will go up.

Highlighted
Member

Re: tamoxifen belly

oh , I have one of those to, in fact, if I stick my belly out I cud pass for a 6 months pregnant women, which I did some time ago to shock my hubby, he nearly passed out, try to hold it in but just to much wibble wobble, hence the name truffle shuffle.

i can remember when having chemo and moaning about my weight gain the clinical staff , just said oh dont worry we will help you with that after chemo, well still waiting for the help 9 months on. I have lost about 1.5 stone but not from the belly area.

take care x

Highlighted
Member

Re: tamoxifen belly

I'm not on Tamoxifen. I am on Femara but I seem to have the tamoxifen belly you are all describing. All my life I have tended to be a bit hippy and if I did put on a bit of weight that's where it went but since the start of the year when I started the Femara my belly has become quite ridiculous. The thing that makes it a bit worse is when I don't wear my breast forms (had bi mx) I have an uninterrupted view of it in all its glory.

I have been feeling a bit annoyed with myself for letting it get like this but if it is the medication that is causing it then I can at least absolve myself of all blame! 🙂

Highlighted
Member

Re: tamoxifen belly

I too have the huge belly and it is really getting me down, I was size 10 at dx, now size 14 and never weighed so much.

Highlighted
Member

Re: tamoxifen belly

MMM I'm not on tamoxifen (or any other drugs) I was always a size 8 and weighed 7st 10oz, could eat what i liked but preferred healthy food. chemo knocked the stuffing out of me and my weight plummeted to 6st 3oz. finished chemo last December, finished rads end of January - weight now 8st 9oz and size 12's are getting tight! I eat even healthier than before and exercise more too. I don't have the excuse of tamoxifen though and can't see how on earth I am going to lose the weight. My tummy (which was always super flat even after 3 pregnancies) is huge - I look 9 months pregnant and its horrible flabby. So..... is it tamoxifen or just a general side effect of treatment?

I am just learning to live with my new body, it looks different than before, it acts different from before but I'm still here and enjoying life so it can't be all bad. 🙂

Highlighted
Member

Re: tamoxifen belly

Hi girls, I was on Novaldex and Zoladex inj for two years, finished in August. Before Bc was a size 8 naturally and ate as much as i liked, after just two years of the drugs I ended up at 10st 11 and a size 14, i have never been over 9st before. It was one of the things that has really got me down. I am still experiencing some of the side effects of the drugs but slowly beginning to feel more in control, less hot sweats etc. 3 weeks ago I joined weight watchers and so far have lost half a stone, its not much but a good start and I cant recommend it enough as you are encouraged by everyone but eat heathily, I have found in the last 2 years that my hunger levels went up considerably, the food I eat on weight watchers does not leave me starving. I did try dieting and excercise during my treatment and nothing seemed to make a difference, just to let you all know MY TUMMY IS NOWHERE NEAR AS SWOLLEN, it is still quite wobbly and no way will I wear a bikini yet but it looks like things they are a changing. I hope this brings positive vibes to you all. Make sure you all eat heathily and excercise as much as you feel you can. We all have to enjoy life and not be so concious. XXX

Highlighted
Member

Re: tamoxifen belly

Those who havent put on much weight are so fortunate.

At the moment i am repulsed with my body and weight gain and with that and the mastectomy yuk yuk yuk!!!

Everyone says i need to exercise, so off to the gym i went and my knee and heel started playing up.

If i walk far I have mega flushes and the sweat pours off me.

I am glad you mentioned the 'belly' i resemble a 10 pint a night beer drinker.

I asked onc and surgeon when i will stop this awful weight gain and told them its depressing me but they just say eat less and exercise and smile sympathetically.

I dread going to functions as finding 'fat nice' clothes is near impossible.

What ever happened to the slim fit me??

Rx

Highlighted
Member

Re: tamoxifen belly

Its not that I'm not comfortable with the weight per se - its just a number. To be honest I'd lost some while ill with BC (and before - probably due to having BC and not knowing it), so praobably looked a bit gaunt. Its just that Tamoxifen seems to have changed my metabolism (and previous clothes don't fit so is expensive!!). Am slightly concerned that I may gain a stone each year I'm on Tamoxifen.... eek!

Highlighted
Member

Re: tamoxifen belly

I would so like to be 9st 3lbs again! But know that if you're not comfortable with it that's what counts! Off to see GP tomorrow. Going to tell him everything! Have been trying to diet really strictly these last few days, but am so miserable! Nightmare. Thinking of you all.

Jean x

Highlighted
Member

Re: tamoxifen belly

Hi Tigerlily

Yes, I remember you from last year. I would love to be your CURRENT weight, though I realise it is not acceptable to you.

Tamoxifen tummy definitely exists; whether we can get rid of it is another matter altogether!

Mcgle

Highlighted
Member

Re: tamoxifen belly

Same here!! I know i shouldn't complain really, as uop until last year i have had the kind of figure and 'luck' that makes my best friend tell me she hates me - I was 5' 6", 8 stone 2, slim but curvy in the right places, wore a size 8-10 clothes. I could eat what i wanted (although I prefer healthy food and home cooking) and until i had to weigh my cat regularly (long story...!) never posessed my own scales. Now after 1 year on tamoxifen, my tummy (TUMMY!! never had one before!) is white, flabby and wobbles when i run, most of my old clothes have gone to charity as i go up the size range - and hence purse strings being strethched too! -, and I look really lardy round my thighs and upper arms. Still eating healthily (if not more so) and have been to the gym this year (never done that before) and generally more active than previously. Yet still the weight goes on - now 9st 3 and have decided to get rid of the scales again now cat does not need!.

Highlighted
Member

Re: tamoxifen belly

I too have the big belly - always had a flat stomach until taking tamoxifen, I definately put in down to the medication. I'm having a DIEP reconstruction next month so my tamoxifen belly will be my new boob (hope it wont disapear when I stop the medication)!!! I exercise daily but just cant get rid of it, I know we should be grateful that the tamoxifen is doing what its suppose to but I hate my stomach.

Clare

Highlighted
Member

Re: tamoxifen belly

That must be so disheartening, Lorri and Jean.

I walk for two miles every day, which is keeping my weight stable, though the belly closely resembles jelly!

If going to the gym and swimming don't help, what will?

Rationally, we should just accept this as a side effect of tamoxifen. It is, after all, keeping us alive!

Mcgle

Highlighted
Member

Re: tamoxifen belly

Deleted

Highlighted
Member

Re: tamoxifen belly

i am another one suffering from a massive belly, so after reading alot of these comments regarding tamoxifen, I can now see the connection. I have been on it almost 2 years and have put on a stone in weight although i go to the gym and swim alternate days, my stomach looks as if i am 6 months pregnant all the time. getting rather depressed thinking that going to the gym etc is pointless although i know i need to really continue with it or who knows what size I would be !!!!!!!!!

Highlighted
Member

Re: tamoxifen belly

Do you mean I have to put with this enormous sized belly for another 4 years?!! Have only been taking tamoxifen for a year and put on one and a half stones already! Am seeing GP next week - know there is no magic answer, but thought I'd have a heart-to-heart with him.
Jean x

Highlighted
Member

Re: tamoxifen belly

I would like to know the answer to this one, too.

Anybody done the full five years of tamoxifen with their belly reducing to normal?

Mcgle

Highlighted
Member

tamoxifen belly

will the size of my tummy reduce now that i have finished takijng tamoxifen, as my doctors say?