Weight gain and water retention

Hi All,
I’ve been taking Tamoxifen since December (Had 7 Herceptin as well). Don’t have any side effects to speak of other then weight gain and a near complete inability to shift it. Now I know that the gain was because i was putting far too much in my mouth, I don’t have any sympathy for myself on that score, but…Now I can’t shift it. I go to the gym 4/5 times a week, i’ve been resticting my calorie intake to 1200-1600 calories a day and in 5 months i’ve only managed to shift a stone of the 2 that I put on (before DX I lost 3 stone in 6 months without excercise).
I think that i’m fighting the effects of the Tam. and I think there is some element of water retention as well - has anyone else had any experience of this? have you taken anything to ease the retention problem?

Hello,

Firstly well done for shifting a whole stone - I’m impressed! Weight gain and/or difficulty shifting weight seem to be widespread issues for people taking Tamoxifen. I’m pretty sure it is one of the listed side effects. I managed to shift my ‘chemo podge’ of half a stone but it soon crept back and is very hard to shift again.

I don’t want to tell you how to suck eggs but eating less than 1500 calories a day is generally seen as counter-productive and there is eivdence to show that people can actually gain weight, as their bodies go into ‘famine’ mode and slow the metabolism right down. I’m sure you know the tricks about drinking water, eating slowly, filling up on veg and avoiding too many bloat inducing carbs.

I can’t help on the water retention, but hopefully someone else will be along who does know soon.

Keep up the exercise and healthy eating and I’m sure you’ll get there - eventually!

I’ve shifted 10lbs recently with SW online, but it’s been really hard and I now appear to be a bit static, despite sticking to the diet. I’ve signed up for another 12 weeks so will just need to hope for the best. I also go to the gym and do other exercise (which my GP writes off BTW, she keeps saying to walk more - she doesn’t class 30 mins on a treadmill as walking and says resistance exercise is useless!) My home exercise on the in between days consists of a DVD Swiss ball workout with hand weights, something like yoga or even a few 10 min dance routines.
Post chemo I lost the bloat I had gained from steroids which was good as it was about 12lbs, but that was it. I’ve been for hospital appointments where they’ve picked up on things like high BP and also blipping sugar levels and after 2 years of pointing this out to my GP I’ve managed to get put on a low dose diuretic for my BP. This is the first time in 5 years that I have not had swollen feet / ankles and heavy legs. I’m not particularly weeing any more time a day, but I’m obviously getting rid of what my body was retaining and I feel better for it.
One of the nurses at my practice said it’s sometimes the case that the steroids they gave you for chemo can leave you with a few problems like sugar issues and inability to lose weight, so I’m suspicious this is what may have happened in my case. Again my GP just thinks once you’ve finished chemo you should be all back to normal within a few weeks (yeah, right eh?) - before anyone mentions, there’s no point in seeing another doc as they are all the same and they back each other up at my surgery.

Hi
I used to be a Slimming World consultant after losing 6 stones and when I was training to become a consultant I was taught that although some medications state that weight gain can be a side effect there isn’t actually anything in the medication that is going to make you put on weight, what it means is that you may have an increased appetite, so as long as you eat low fat foods such as plenty of fruit and vegetables you should be ok x

A stone in 5 months is actually a really impressive weight loss. You are going in the right direction and at a sustainable pace. Just keep doing what you are doing and you WILL get there. Losing 3 stone in six months could well have been because of underlying illness. You don’t want that again.

Hello,
I have been on tamoxifen for 11 months. Pre Breast cancer I was always extremely slim, but since tamoxifen I have put on a stone. I swim 50 lengths three times every week (fast lengths so I’m out of breath!) and I eat a very healthy diet but nothing shifts! I’m very active and I teach 5 year olds all day so I’m no couch potato! My Mum had tamoxifen 40 years ago and the same thing happened to her. Thankfully she is still here and very fit for her age, eats extremely healthily, but she never did get back to pre breast cancer weight.
I am trying to get used to the new me because I really don’t see how I could diet and still eat healthily. I eat oily fish, chicken, salds, vegetables and wholewheat pasta, drink loads of water and eat fruit and yoghurt. I am a size 14 now but was always a 10! I allow myself a pud on Sundays and am just trying to convince myself that I still look ok!
Lots of luck to everyone
Rachel x

Hi

Was interested to read this thread as have been suffering from permanently swollen legs/feet for the last couple of months. Before that I just had a bit of swelling when on steroids and then it went away. I had my last chemo 6 weeks ago.

I had my op 10 days ago and my legs were too swollen for even the largest surgical stockings to fit and they felt rock hard. The anaesthetist refused to let the op go ahead until I had further tests on my heart and an ultrasound for blood clots but thankfully both were clear.

I won’t be having any hormone treatment and I’m just wondering how much longer I’m going to have the swollen leg problem? I hadn’t heard of it as an ongoing side-effect of steroids/chemo before. There has been some improvement over the past couple of days in that the swelling is confined to below the knee now, but it’s still very uncomfortable and if I stand for any length of time it gets worse of course.

Cherub, I was interested to read that using a diuretic didn’t make you need to pee more often. I had been wondering whether to ask my GP for a diuretic, but as I have a bladder problem already that means umpteen trips to the loo day and night, I wasn’t sure I could face increased frequency!

As to weight gain, I put on 2 stones between dx and op… unbelievable! I’m sure some of that was water, but I’m type 2 diabetic and the steroids played havoc with my blood sugar levels and I certainly had an increased appetite as a result. I was a lot less active than normal as well, as some of the SEs hit me pretty hard, particularly from TAX. I haven’t bothered to check my weight again - I’m still recovering post-op, but my appetite seems to be returning to normal at last. Unfortunately I can’t exercise yet as have a back problem and am still feeling weak and breathless so walking more than 50yds gives me a problem at the moment. However I’m prepared to be patient now… I just hadn’t realised how long the effects of TAX linger on. My BCN said that you can still suffer from ‘episodes of exhaustion’ for up to a year afterwards, apparently.

I still have rads to come, so at this rate I’m not expecting to get ‘back to normal’ until next year!

Sara

sara12,

I had hideously swollen legs some time after chemotherapy (TAC) - I could leave a deep thumb imprint there - and the problem went away after a few months, but not after I’d got treatment that didn’t work (massaging by machines instead of manual lymphatic drainage), compression stockings that were too weak, and wasted a lot of time seeing doctors who said it was normal at my age and weight. I thought it was Tamoxifen, but it went away on its own and I’m sure it was an after-effect of TAC, although not immediate - I think more than 6 weeks later, but maybe not. The first time I had Taxol, they forgot to give me the tablet the day before, which I also think was not helpful. I was told to put my legs in a raised position, but that didn’t help either. So I hope you will have the same experience as I did.

RevCat et al. - about how many calories you can have, I think 1200 is regarded as the lowest limit. Just before my diagnosis I started a calorie counting diet (I am very overweight). I could apparently have 2300 calories a day and keep my weight. So I took 500 off, ate 1800 a day and allowed myself more if I did extra exercise. This way I lost 3 stone - until chemo started. Then I put on weight. I had no idea at the time that I would not suddenly be my old self after chemo but the first year after would be worse. Under Tamoxifen and AIs, I never succeeded in losing weight even on 1500 calories. Someone else said with 850 per day you can do it, and I do suspect that when you’re taking these tablets you would have to go very low.

After a while I was diagnosed with prediabetes. I got a glucometer and started eating fewer carbs. I lost 3 stone again, but later I gradually put most of it back on. My blood glucose values improved - probably the prediabetes is still there - so the diabetologist told me to forget about it and eat porridge for breakfast again (I was getting worse values under exemestane) but to lose weight by behaviour therapy and missing meals. Since then I have put on weight again! Thank goodness I only have 1 year to go. But I have now read here and there that both chemo and all these anti-hormone tablets increase the risk of diabetes in those who have a tendency to it. I think you have to have a genetic tendency to get it.

At the moment I go out for a walk every day or swimming. I reckon that is good and I can do it. I really hate all the doctors who tell me to lose weight.

Hi everyone
It’s so hard isn’t it :frowning: I have battled with weight all my life…Im 46 was dx with bc in May had lumpectomy and rads.My treatment finished a month a go and I have been on Tamoxifen for 3 months now.The se are managable ish!! I have been very consious about what goes in my mouth after being warned about tam and weight gain…I have managed to lose 10lbs by cutting down on carbs and eating smaller portions.Also I have cut down on dairy but Im really mising my muler light yoghurt…it there an alternative?I dont think there is else it wouldnt be a yoghurt would it?Also changed to skimmed milk am I right in thinking is this ok and doesnt contain much dairy or am I wrong? Phew there’s a lot to learn about changing habits of a lifetime.
Thank you
Kate x

What’s wrong with dairy? or at least one yogurt?

there’s nothing wrong with it Zeppa …I just chose to cut down on it and feel better for it and just asked for advice…I have read a lot of ladies on here have done the same…I ate a couple a day so that’s 14 a week…Its what ever suits you isn’t it and to be happy in what your doing.This seems to be working for me at the moment so will keep it up.
Take Care
Kate x

kate40club - I’ve cut out dairy completely. Have Oatly oatmilk instead. For a creamy sweet treat I whip up a smoothie in the blender from oat milk, manuka honey, almond butter, omega seed sprinkle and a banana (you can get the ingredients from Holland and Barret or some Tescos). My problem is putting on weight at the moment. I’ve now dipped under 8st. 5’2" so still in a safe BMI but don’t want to get any lower as still got another 5 chemos to go.

Ohh that oatmilk sounds nice …I will have a look for that… Im determined to carry on and hopefully shift some more…thanks for that and all the very best for the rest of your chemo :slight_smile:
Sending a hug
Kate x

Funny thing is, in the 4 weeks I’ve been on the mild diuretics I haven’t been up to wee during the night. After I finished treatment 5 years ago I was post menopausal and was getting up to wee at 4.15 every morning - it was so regular I could have set the alarm by it.
4 weeks of unbroken sleep has been great, I am more alert in the mornings. It’s also a joy to fit into nice shoes again as I was living in loafers, round toed pumps and trainers.

Zeppa, thanks for that info. I’m now thinking the same, that the swollen legs were a delayed reaction to docetaxol … I just wasn’t expecting it and hadn’t been warned about it as a possible side effect. There has been some improvement - if I keep my legs up my feet look like normal feet again… although they puff up again as soon as my feet touch the floor. My legs are a bit better - still swollen but not as solid and don’t feel like they’re about to burst. I guess if I’m patient then, the problem will go away on its own.

However I was encouraged by Cherub’s comment that the diuretics didn’t mean extra trips to the loo, so I may ask for some if the improvement seems too slow. I’m envious of your uninterrupted nights’ sleep Cherub - I usually have to get up at least 2 or 3 times and on bad nights after coming off steroids each cycle it was practically every 1hr. Good job I can get back to sleep pretty quickly each time.

Sara