Weight gain with hormonal therapy

Sofiejo

Talk to me about potential weight gain with any of the hormonal therapy drugs. Is weight gain a given? 

pupmom

Well, I had weight gain, about 7 pounds, after a year on the Als. Struggled mightily to get it off but just couldn't for the longest time. Then suddenly that SE went away. Two and a half years after starting Aromasin I'm 3 pounds lighter than when I began treatment. I would like to lose 5 more, but I'm really ok with my current weight. I've learned SEs from hormonal therapy come and go. I also had carpal tunnel in both hands after starting Aromasin. That also no longer bothers me. 

Twinmar

I lost 5 pounds the first 3 months on Tamoxifen without trying.   In fact, when my onc gave me a list of side effects (from the Mayo Clinic) it listed weight loss as a side effect.  I stopped the drug after a year (due to other side effects) but have kept off those 5 pounds.

carpe_diem

I made massive lifestyle changes shortly after starting anastrozole in March 2011 and lost 90 lbs. I've gained back about 10 and  all my (former) mo could say was that weight gain is a side effect of AI's. Everybody (and every body) is different, but you won't necessarily gain weight.  Eat your fruits and veggies and stay active and you'll feel better whatever you weigh.

AmyQ

I lost 38 pounds over the first three months after starting Femara and have kept most of it off. I've been on it for 1 year exactly. Initially I had no appetite and the sight of food was disturbing but eventually that went away.  I also started taking it at night but I couldn't sleep so switched to the morning and am doing just fine.  Good luck.

Amy

edwards750

You guys are lucky. I have gained weight from Tamoxifen and do have people I know who are also taking it. Everyone is different though. My ONC said one of her patients lost 40 lbs. Sister n law gained weight too. I was never told weight loss was a SE; quite the contrary. Still gotta take it and have 1 1/2 years to go. 

Diane

besa

Sofiejo -Everyone is different. I also lost weight on tamoxifen.  I think I just wasn't as hungry.  When I went off the drug after 5 years I could see my weight starting to creep back up.  (At that point  I made a big effort to up the amount of exercise I did to bring it back down.) 

Sofiejo

Thank you for your responses. Everyone really is different! I have to get through radiation and then I am really dreading hormonal therapy and which one is right for me. My BC was caught very early. Tumor was 4 mm and had not spread to any nodes. 

theresa45

I've been on tamoxifen for almost 5 years and have not experienced any weight gain.  I have experienced night sweats and leg cramps.   I second what somebody else said about side effects coming and going.   Unfortunately, you really have to try it for yourself to determine what your side effects will be.  Good luck!

CatbirdC

I have 2 more pills to go on my five years and probably have gained a good 20 pounds on

it.  Boo Hiss  !!!!!

I cannot wait to see if I quit adding pounds once it is totally out of my system....which I hear

takes about 3 months.

Warrior_Woman

My MO warned me that "MOST" of his patients gain a substantial amount of weight with Tamoxifen.  With all I am going through, I have no plans of lessening my quality of life by being fat.  And so, with determination, I made a few lifestyle changes that have resulted in a 20 lb. loss (30 lbs. if you count my added chemo weight) in the first several months on Tamoxifen.  I have always exercised and been fit.  That is not an issue.  I eat a wide variety of foods, lots of fruits and veggies but also the fattening ones but I carefully control my portions and I shock my system for 2 consecutive days each week by dropping my caloric intake to 500 calories each of those 2 days.  I do not exercise on those days but I stay occupied so I'm not snacking.  I drink the Ensure nutritional drinks and eat fruit.  I also eat while I am exercising.  I may have a half an apple or a carrot.  I eat fruit as soon as I finish exercising.  I am a runner and I have a bad habit of burning off lots of calories only to get home and eat the entire refrigerator.  I have carried this extra 20 lbs. for about 8 years since I quit smoking and finally...Wah Laa!  It's gone.  I'm down to my right weight.  Now it is possible that I am one of the lucky few who actually loses weight from Tamoxifen but I do attribute it to this lifestyle change.  My objective moving forward is to maintain this weight loss and so far it hasn't been difficult.  I am not suggesting this is a good plan for everyone but I am sharing this as I hope it will help someone.

muska

Lost 3 pounds during my first three months on anastrozole. I don't attribute it to anastrozole but rather to my being more careful about what I eat. 

VegasNurse

I have actually lost 60 lb on tamoxifen...total loss of appetite most of the time.

Jennie93

I never had any weight issues in my life, never had to think about that, stayed the same all through surgery, chemo, rads. Had heard that weight gain was common during tamoxifen but just shrugged it off, thought that won't happen to me.  HA!

The scale started creeping up as soon as I went on it. About a pound a week. I started counting calories (stay under 1000 per day) and steps (at least 5,000 per day), things which had been foreign concepts to me before.  No luck.  The gaining has slowed a little, but not stopped. Up 25 pounds so far and I HATE my new body.  I also know that being obese increases your risk of recurrence. The question is, does it increase that risk by more than the tamox decreases it??

Cannot even describe how depressed I am with all this fat and the terrible joint pain from the tamox. Kinda thinking life is not worth living if this is what it feels like.  

Warrior_Woman

Jennie - It's another example of your body feeling like it is out of your control and that sucks at a time when we're trying to feel better about ourselves.  I encourage you to try what I described a few posts above.  This was told to me by a doc at Penn and it has worked like a charm.  I feel great and I think it's worth giving it a try.

Jennie93

I have always been fit & active, and eat healthy.  It sure is beyond frustrating to see the pounds piling up when you feel like you're doing everything right.  I am intrigued by your idea of doing two consecutive days of just 500 calories. I think I will give it a try.  

EnuffZEnuff

I was told by my Onc that Tamoxifen would not cause weight gain and after being on it for a year and half I gained 30lbs in 3 mos.  I had been on a healthy diet, worked out with a trainer 3 times a week and ran 3 miles 3 times a week and the weight just kept coming.  At the worst point I was extremely depressed and desperate and went to a weight loss dr. Dr gave me meds to help reactivate metabolism and it has worked, I have lost the 30 lbs in 6 mos. but am frustrated because as long as I am on Tamoxifen it will be a constant battle. As if there is not enough side effects to deal with, now my hair is thinning and getting male patterned baldness -  I am not sure I want to continue with it

Warrior_Woman

I also exercise a lot.  I'm a runner and I lift weights.  On the 2 days I cut calories I do not exercise and I keep myself occupied.  I hope this helps.  

Jennie93

My MO offered to switch me to an A.I. instead of tamox (it appears the chemopause is indeed menopause) but don't they have the same SEs of weight gain and joint pain?  Plus I have a strong family history of osteoporosis so don't want to push my luck there. At this point I kinda feel like 'better the devil you know than the one you don't...' right?  

But if anyone has had the experience of being unable to keep the weight off with tamoxifen and then switched to an AI and went back to normal, please tell us!  

Warrior_Woman

Jennie - I've only taken Tami but I have read many accounts of improved SEs and no weight gain with the AIs.  Good luck.

DebbieNH

Hello, I just found this wonderful discussion board. I'm at my wits end with this Aromasin. I have been on it for close to 2 years with 3 years left to go. I have put on weight and specifically on the stomach area. I exercise daily and have improved eating habits. I cannot take this weight off.  My dr. the first thing he mentions to me is my weight gain. I'm personally more concerned with other issues having thi weight gain than cancer coming back.  I was never told that in some women on this drug, that weight gain, particularly in stomach area is a possible side effect. The only other issue I have with this drug is hot flashes and difficulty sleeping. Prior to Aromasin, I was on Arimidex. Had bad joint problems in both hands/fingers, had to get off that.

Can anyone help, suggest anything that could help me take this weight off?  I am open to herbs, essential oils, anything!   Thanks in advance for any information.

Warrior_Woman

Debbie - Please scroll up a bit.  I posted what has worked for me that was recommended by my docs at Penn.  I wish I knew to do this throughout my life.  It would have been much easier.  Bottom line:  Drop calories to 500 per day for 2 consecutive days each week.  

DebbieNH

Hello Warrior Woman. Thank you for posting all that wonderful information. And glad to hear your weight has come off. 

DebbieNH

Dear Catbird C. Congratulations on your last pill!  Please post your results of weight loss after 3 mos. off the drug. Wishing you the best!

DebbieNH

Dear Sofiejo,

My cancer was also caught early and no detection found in lymph nodes.  I completed 8 weeks of radiation therapy and then went on to take Arimidex. The side effects of joint pain in all fingers was terrible. I got off that and went on to Aromasin.  I have hot flashes and don't always sleep well, bu the biggest complaint with this drug is the weight gain.  I have 3  years left to go and hoping I don't end up like a balloon. I do my fair share of exercising and eating right, but I'll have to review my eating habits again and tweak where I can make better changes/choices.  I recently heard of Teresa Tapp, creator of the T Tapp program.  Pretty smart woman. Caught her on PBS. Her exercise method is quite different from the standard go to the gym and lift weights.  I'm going to give her program a try and will report back results good or bad.  I feel lifting weights is the best thing a woman could do for her bones.  Last bone density scan I had showed light  osteopenia.  I do take fish oil, calcium with magnesium which includes Vitamin D3 and tumeric.   The hormone drugs I was given was based on the fact that I am post menopause and a lot of the new drugs out are for women who are pre menopause. 

SpecialK

Just an FYI - Ensure has soy and a lot of sugar, so the ER+ ladies may want to avoid it.  You can substitute other types of soy free protein powder on the 500 calories days though.  I gained weight from chemo and steroids, then continued to gain a bit on aromatase inhibitors, but also had some inability to exercise due to the number of surgeries I have had.  I tried 1200 calories and 5 miles of fast-paced walking each day and could not move the scale at all.  I had gained almost 20 pounds since diagnosis.  In January I started an anti-inflammatory diet and gave up corn, sugar, dairy, peanuts, eggs, soy and gluten.  I eat lean grass-fed and pasture raised protein, vegetables, low-glycemic index fruits, gluten free pasta and brown rice, etc.  I can eat as much volume as I want so I am not hungry.  I have lost 22 pounds and now weigh less than I did at diagnosis, and no longer have joint pain as an SE from Femara.  This weight came off without exercise, as I have had three surgeries since the beginning of the year.

SailingWind

Look up changing how you exercise. For me variety not the amount made a difference. If you are a walker try walking as fast as you can and then slowdown when you have reached your limit. Then do it again. If you don't like to do weights or can't get to a gym get resistance stretch bands.

Warrior_Woman

SpecialK - Thanks for the heads up about the Ensure.  I really need to get better at reading labels.  

Anonymous

I'm not sure if I've gained or not, truly. I've been on arimidex for months now. It feels like I can't lose weight, but is that real?  I think I've got more meat on my hips than I used to, even at my current weight, and that feeling is new. I blame arimidex for the inability to lose weight as quickly as I used to, but it could be simply meno as well. My MO told me the older we get  the less calories we need and the more we need to exercise.  I thought I was doing that, but....

 I lost 10 lbs during chemo and have gained it all back to my pre-dx weight (I was 122 at lowest point during AC; I'm 5.8 inches) but now weigh between 132 and 134 depending on day and water retention.   I wonder my body's "normal" weight--132--is right, if I'm fighting it by trying to lose more, and I wonder if my idea that I should get back to closer to my chemo weight is a bad thing. 

In other words, am I being realistic about wanting to get lower than 132?  With ILC and post-meno, everything I've read says that the lower BMI I have the less recurrence chances I have.  

I exercise like a fiend, eat about 90% plant-based organic, little to no grain,  tons of green leafy veggies and fruit, and SpecialK shared her anti-inflammatory diet with me, which took off a couple of pounds, but I got lazy and didn't follow it exactly .... I have plans to try again.

My husband says I look great. I have suffered from BDD (body dysmorphic disorder) in the past. I struggle with this issue, and I'm grateful for this thread, and forgive me for going on so long. 

Sparkle2014

CLAIRE - you are less than normal weight at 132 and 5 feet 8 inches- go take a breather...  you could be 145 and still a great shape and weight... 

how did you feel when you first went on Tamoxifen - were there a lot of SEs or very few for you? curious..  I need to go on it  -but scared weight gain.. thanks!

Anonymous

Hi Sparkle2014, thanks for the reality check!    I had no side effects except for hip soreness after sleeping (at times) and my hands were kind of stiff first thing in the a.m. but nothing like the Arimidex.  I didn't get sick, didn't seem to gain weight, etc.  

Claire