Anyone NOT gain weight or diet successfully on Tamoxifen?

TennisPink

I am looking for only successful stories here regarding Tamoxifen and weight control/loss. I have read post after post on people's stories of weight gain on every BC discussion board..5 lbs all the way up to 80lbs and countless stories of people saying their diets didn't work and neither did exercise. So.. I am hoping to there are a few of you out there who either didn't notice any weight changes, or did notice but managed to shed off the pounds with diet and excercise even if it took much longer.

I know there have to be some of you out there, so please share!! And share your tamoxifen diet tips!

I start will Tamoxifen in August when I finish radiation so I am hopeful that I can still finish shedding off the weight I have worked so hard to lose over the past 5 weeks

Carlsoda

I haven't started tamoxifen yet, but my MO told me to lose some weight while doing rads since one of the SE's is weight gain. I wonder if the gain is associated to menopause weight gain? Either way, I took her advice and have been steadily losing. I really hope I don't regain the weight. Good luck to you! I am starting on August 15th.

kcat2013

TennisPink I've been on Tamoxifen for about 1.5 years and have not had a problem with weight gain. I'm currently at a healthy weight for me. I haven't done much diet wise since starting Tam. other than eating a lower carb diet than I had prior to breast cancer. The lower carb diet is not for weightloss--it's to keep my blood sugar in check. I'm not diabetic but my A1c's having been creeping up ever since treatment. I'm not strictly low carb, just more mindful of my food choices. Hopefully Tamoxifen won't be a problem for you either. I imagine there are quite a few other women like me where weight gain hasn't been a problem but we just don't talk about it since it's not a problem.

ksusan

The only thing that's worked for me is 13-hour fasting and no simple carbs at a very light dinner (plus exercise). This is holding my weight steady.

coraleliz

Weight gain isn't a given. I'm almost done with my 5year plan & have not gained weight. I had to quit running because of my knees & feet. I've experimented with anti-inflamation diet but have had problems sticking with it. More for joint pain relief that's either related to getting older or perhaps Tamoxifen

Lou10

I was on Tamoxifen for about 9 months and, during that time, I lost 15 lbs I had gained from chemo. I didn't do anything to try to lose the weight, it just came off. (Unfortunately I had to switch to an aromatase inhibitor, and gained 25 lbs on the first one.)

katcar0001

I am one of those who lost weight on Tamoxifen--maybe too much--but I have stabilized. You might be fortunate and not gain weight. I do have a healthy diet--I eat animal protein only once a day (usually eggs, fish, poultry), eat "good carbs" like oatmeal mixed with creamy buckwheat for breakfast, and I don't eat much sugar other than fruit, honey in my tea, and a piece of dark chocolate. I rarely have milk products. I also keep the alcohol to no more than 4 glasses of wine per week, and I keep active (walking, gardening and some dancing). The weight issue may be a different story when I switch to an AI, blerk.

LtotheK

I am not an expert by any means, except what happens to me personally. Chemo put me in perimenopause, my estrogen is 1 point from menopause at this point. I immediately gained 5 lbs--like in the course of a couple of months. I did not gain on Tamoxifen in the 5 years on it prior.

I have read a lot on the subject, and it seems that this question of insulin resistance as we get older means what we eat should change. I have been using Eat for Life as my general guide, and it is really this: eat fruits, vegetables, beans, seeds and nuts. I throw extra things in there, like alcohol and candy when I feel like it. But I did really notice that things like donuts would set me back for what seemed like weeks between water and actual weight gain.

I also use Lose It on my phone--very helpful to show just how much over my goal I often am, even when thinking about it. I don't get to the gym as often as I should. I loathe it, plain and simple! I also read that for women of a certain age, slow and steady cardio beats the HIIT type workout. I lift weights, that also helps with the metabolism. All age related for me, not Tamox per se.

Lvbugs

I have been on tamoxifen for a little over a year and have lost 20lbs. The only thing I've changed was pay more attention to what I'm eating and try to reduce the carbs some. I do exercise, but no more than I did before

Gully

Count me in as well!. I have been on Tamoxifen for almost three years and have not gained weight despite the fact that chemo slammed me into menopause at the age of 46. I am an avid runner and try to limit " white foods" that are high in carbs. But thats it. I eat when I am hungry and dont when I am not.

Tamoxifen has been good to me with very few SE. According to my MO I will be doing 10 years of hormone therapy now and wants me to switch to an AI .....so now I am trying to decide if I want to switch to an AI in January for a slight benefit in the chance of recurrence for the duration of the 10 years. I think I will as long as I dont gain weight...the second that scale starts climbing I will switch back to Tam!

Good luck in your decision!

Gully

snorkeler

After four years of tamoxifen, I am still the same weight. I try to be active and go for walks, but I'm not a big fan of working out. I'd rather eat less than exercise more. Reducing wheat products seems to have flattened my tummy a bit. Right now I'm still premenopausal, but I do worry about what will happen in a few years after "the change."

TwoHobbies

I was able to lose weight on tamoxifen. My BMI was right near 25 when I was diagnosed so I wanted to lose some to be more firmly at a good BMI. I started by giving up grains,sugar, dairy and I lost 13 pounds. I'm now on anastrazole and just got congratulated yesterday by my doc for not gaining weight back- 2years of tamoxifen, almost three on AI. I exercise a lot now and continue to limit grains, milk, sugar. I typically eat nuts for breakfast, salad for lunch and meat and veggies for dinner. I follow the 80/20 rule. My 20 is usually Mexican food and occasionally I have some chocolate or a frozen fruit bar. I also do the intermittent fasting by taking my nuts to work and I usually don't eat until 10:30 to 11:30.

I used to be hungry all the time so a diet didn't last past day 3 and I think It was from eating all carbs that I thought were good for me. I wonder if I was developing some insulin resistance.

Maybe I've taken my experimentation farther than some. I read that fasting glucose above 86 showed more recurrence. Since I had already had a local recurrence I decided to try to get my FG down. It was 92 ish. So I bought a meter and periodically test my Fasting glucose and sometimes after meals and now my blood glucose is rarely above 80.

Heidihill

Twohobbies, I wanted to do the same experiment and borrowed a glucose monitor. I just couldn't get the nerve to prick myself though. Anyway I knew my fasting glucose was low (from my doctor's quarterly workups) but I was more interested in postprandial spikes. I guess I will never know.

I also managed to lose weight on both tamox and AIs. A 17 hour daily intermittent fast for a whole year (except for vacations) kickstarted my weight loss. Daily exercise helps to maintain it.

Frill

Thanks for this thread because I'm really worried about this SE. My weight has fluctuated since puberty. I have to keep an iron fist to lose or maintain now. I have lost 20 pounds during chemo, but I still need to lose 20 more to be "normal".

Like y'all have said - tracking it all. I swear I have online weight tracking going back to the 2000s lol.

Being overweight is a cancer precursor too, so it's almost - no it is a no win situation.

amylsp

I've been on Tamoxifen for 15 months and have lost 12 lbs that I gained during treatment. The weight definitely comes off more slowly than it used to, so I've really had to work on being patient ( I averaged about a 1 lb loss per month)! I do moderate exercise 60 minutes a day (speed walking or the treadmill at Planet Fitness) about 3 times a week, portion and snack control, and eat a low carb diet with minimal processed sugar. That seems to have worked well for me. The excess weight I still carry is located almost exclusively on my belly. That seems to be the hardest place to lose weight, imo. My goal is to try and lose 5 more lbs, and hopefully lose it from my belly not my butt!

solfeo

I have been on tamoxifen since November. I had a lot of weight to lose and had already made a lot of progress before I started the tam, and have lost 62 lbs while on tamoxifen (129 lbs total). I have 19 lbs to go. I track my weight with MyFitnessPal, and I didn't notice a slowing of the weight loss after tamoxifen, but it has slowed down the closer I get to my goal weight. I think that is normal.

I follow a ketogenic diet (very low carb), modified some for ER+ cancer (no dairy, low animal fat, and some other restrictions), and I walk around 5 miles per day. The first few months on tam I wasn't exercising nearly as much as I do now, though. I think carbs are key. I've noticed around the boards that most of the women who are losing or maintaining weight on tamoxifen are limiting carbs in some way. The ones who are gaining even with calorie restriction and plenty of exercise are generally eating a lot of carbs, especially grains because we have been led to believe they are so healthy (I no longer think so). Even whole grains have a big effect on blood sugar. I don't eat grains and if I cheat it will be on something gluten-free. Even single-meal carb splurges usually raise my fasting blood glucose for around 5 days. It's never worth it.

My bloodwork is always perfect so there have been no health consequences to this lifestyle. Several parameters have improved greatly.

TwoHobbies

Heidi, if you get the fine gauge lancets it doesn't hurt. Just try it once and see. It has been very interesting and motivating for me. I've tested all my typical meals, and have great post prandial glucose avoiding grains and sugar, usually not out of the 80s range. Now I'm starting to test my cheat meals. Also revealing. My favorite Mexican meal only 103. Sushi meal112. Waffle with strawberries and banana, no syrup or powdered sugar and 3 pieces bacon-169. Yikes what a differencce.

labelle

I also think carbs are the key to successfully controlling weight. I lost over 20 lbs when I started on a Paleo diet about 3 years ago (naturally low carb, although you don't count carbs or anything else) and have kept it off without any problems by continuing to eat Paleo. Since I started on Tamoxifen about 6 months ago, I've gained about 3 lbs due to cheating on my diet. No big deal for me as I went into this a bit on the thin side but I do think Tamoxifen is making it harder to stick to my diet. I'm having carb cravings too often these days and that is a monster I thought I'd slain years ago. Maybe it's just that Tamoxifen seems to make me a bit blue and eating carbs gives me some kind of boost. Anyway, I don't think gaining weight on Tamoxifen is a given, but I do think it makes it harder to stick to one's diet for a variety of reasons.

Raili

I took Tamoxifen for 5 years and did not gain weight. I also didn't lose weight (because I wasn't trying to).

keepthefaith

I gained about 10 lbs since DX, but since then have managed to get rid of it. It was def harder and really had to cut back on my calorie intake. Maybe my age and already low metabolism...

cookiegal

I gained weight on the AI's and due to SE's switched to Tamox.

I have lost about 10 pounds the past year. I am close to my pre-cancer weight.

It's hard and slow for me, but Tamox is not the worst.

(said the lady with the cookie avatar)

solfeo

TwoHobbies - you might already know this, but you can mitigate those blood sugar spikes after a cheat meal by taking a brisk 20 to 40 minute walk around 20 minutes after the meal. I generally try to walk after every meal because it gets me back into fat burning mode more quickly.

My usual fasting blood glucose is between 70-75 and I shoot for no change before and after meals. I do get a small spike in the mornings from my morning green tea of all things. I guess it's from the caffeine in the tea (I was surprised to learn caffeine can raise blood sugar in some people), but it doesn't usually go above 80. When I cheat it goes up into the 80s for several days. Still not bad but I like to keep it as low as possible, and it has shown me that there are consequences from cheating that persist beyond the immediate effect.

TarheelMichelle

I was on tamoxifen as treatment, not preventive, and did not gain weight. I gained a LOT of weight shortly before I was diagnosed (it was one of the symptoms that sent me to the doctor in the first place). Once I began anti-hormonal cancer treatment, I lost weight and was thinner than I had ever been. Ah, the cancer diet. ;-)

I went through menopause while on Tamoxifen and didn't notice any change in appetite or weight afterward.

I pay a bit more attention to my glucose levels than most women, because I had gestational diabetes. I have always had high fasting levels (95-110). Strangely, when I started another cancer treatment that made some cancer patients diabetic, it had the opposite effect on me, and my fasting levels dipped intothe 80s. I went off that treatment, but my weight and my glucose levels stayed low -- I attribute that to becoming a vegetarian. When I started eating a little bit more meat, to help my blood, my glucose levels inched up a bit.

Researchers say that we all have very individualized responses to treatment. It's no surprise that we have unique side effects, too.

TwoHobbies

Solfeo, I have seen exercise definitely helps on the blood glucose front. I went back to see if I exercised after that waffle meal, which I ate for dinner. I see I walked only 15 minutes that day but I'm not sure what time. At any rate, as you said, it encourages me not to cheat, or eat a less damaging cheat meal.

Tarheel, research also shows that foods have different effects on different people, which is kind of how I started down this glucose testing path. https://www.sciencedaily.com/releases/2015/11/1511...