Weird Tamoxifen Side Effect!?!

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AmyA
AmyA Member Posts: 70
edited April 2019 in Hormonal Therapy - Before, During, and After

During my recovery, I maintained a low weight as recovery burns a lot of calories. Once I was feeling better, my weight jumped up 10-15 pounds seemingly overnight and though I eat healthy, it hasn't budged from that.

Oncologist told me last week that in some cases with Tamoxifen blocking estrogen, that your body will think it's pregnant! It holds that cushion of weight to protect the "baby" and only high intensity cardio can get the weight off.

Anybody else with this? Crazy!

: )

Amy

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  • gb2115
    gb2115 Member Posts: 1,894
    edited March 2018

    This hasn't been my experience (I have not gained weight yet from the tamoxifen), but many women do. Maybe his hormonal theory is why that happen?

    Usually though fast large weight gains (like overnight or over a couple days) are more fluid retention related. But that would probably come and go rather than stick around. I think. Not sure.

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2018

    I've never heard of tamoxifen inducing the body to mimic pregnancy, so that's a new tidbit. Tamoxifen does try to block estrogen in select areas of the body (unfortunately, it also promotes estrogen in other areas, which is why uterine cancer risk is slightly increased). The female body will start to try and make estrogen from body fat if estrogen starts dropping (akin to menopause). If you are slim, your body may start trying to slow/gain weight to be able to make estrogen.

    Basically, Aromatase Inhibitors and Tamoxifen trick your body into thinking it is in menopause......never heard the pregnancy part. I wonder if your doc was thinking birth control pills. Those do try and trick our bodies into thinking they are pregnant.


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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited March 2018

    I am thin to start out with and lost 12 pounds I could no afford last year. Still have not gotten that weight back even on tamoxifen and drinking special order extra high calorie Boost. I have heard of people who gain weight on tamoxifen though. Is it the tamoxifen or something else? Who knows? I was hoping to build up a little reserve. Hopefully, the cardio will work for you and will have other health benefits as well.
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  • AmyA
    AmyA Member Posts: 70
    edited March 2018

    I had a lot of "I've never seen this before" complications during recovery. My body went the opposite of menopause. Periods got stronger and no other menopause side effects. I hadn't heard of this before either but it may only effect a small %.

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  • AmyA
    AmyA Member Posts: 70
    edited March 2018

    Thank you for your replies

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  • ksusan
    ksusan Member Posts: 4,505
    edited March 2018

    Lots of people have weight gain on Tamoxifen, though it's still not listed as a side effect. There's discussion about adding it to the list.

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  • AmyA
    AmyA Member Posts: 70
    edited March 2018

    It definitely should be added. I've had so many unexplainable complications. Some doc's blame tamoxifen while others say no. Who knows! But the weight gain thing is a big deal, affecting many in my opinion.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited March 2018

    I put weight on like crazy with tamoxifen. I also had a slew of other side effects that the MO said couldn’t be related and sounded like I had high estrogen. Actually that can happen on tamoxifen. The tamoxifen blocks the estrogen from getting into the cells and can build up in the blood stream if not metabolized by the liver fast enough. Hair loss, weight gain, greasy skin, acne, moodiness, joint pain, fatigue, brain fog, memory issues and blood clots to name the most common ones. (If you develop a cramp like pain in either leg or you notice it’s at all uncomfortable to take a deep breath or a shallow breath, or it feels like little fireworks going off in your shoulder blade/shoulder area when you breathe in, go to the ER immediately for suspected blood clot). I had my ovaries removed and started Femara. Side effects are minor, I’ve lost the weight without intense cardio and the other side effects from tamoxifen are lessening/disappearing altogether.


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  • Egads007
    Egads007 Member Posts: 1,603
    edited March 2018

    I'm late chiming in here, but OH YEAH! Actually let me clarify....I'm convinced tamoxifen curbs the body's ability to lose weight and/or gain quickly. I ate like a pig during my treatment, it was almost manic lol! I put on about 25 lbs! (yeah pitiful). I tried EVERY eating plan known to man and lost maybe 1/2 a pound. Added exercise, maybe another 1/2 loss.....trust me I was counting every calorie that went in my mouth. It wasn't until I went Paleo that the weight fell off. I know that while I'm on this and start up with wheat, grain or sugar again I'll balloon up very quickly.

    What I was told, and have read is that estrogen is what helps cells burn fat. Declining estrogen then equals declining weight loss and makes it easier to gain. My NP explained that this is possibly why we gain more as we age, especially post menopause. Made sense to me, but I'm no doctor. I can only go on what I experienced..... which was no weight loss no matter what I tried after starting tamoxifen.

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  • 3dognitemama
    3dognitemama Member Posts: 16
    edited March 2018

    Just to add my 2 cents, I had been purposefully losing weight before rads. After going on tamoxifen I quickly gained 20 lbs, even though I was still eating the same, & since tamoxifen inhibits the growing of new muscle mass, those 20 lbs are probably all fat. Bummer! Mine is also around the middle.

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  • AmyA
    AmyA Member Posts: 70
    edited April 2019

    Hi there. Thank you for your reply.


    Yes, I’ve made it a mission to try many weight loss options and weight still holds. I’ve seen my body lean a bit. But that scale remains the same or worse. (The Jerk)


    Do you have a link for the main Paleo diet version you’re following??


    Thanks.

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  • AmyA
    AmyA Member Posts: 70
    edited April 2019

    Tamoxifen is a jerk!

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  • AmyA
    AmyA Member Posts: 70
    edited April 2019

    All on Tamoxifen knows it's no picnic, many side effects. Yes, some are lucky and it actually causes weight loss... This thread is not for you.

    For those who also have experienced Tamoxifen’s hideous rapid weight gain / hold for dear life, have any of you found a diet plan that has successfully moved the needle?

    I have legit done Atkins, low fat / low carb, slow carb, no booze, consistent cardio. Nothing is making this Tamoxifen weight budge. It’s a good 15 pounds and no matter what, they have stuck like glue.

    On slow carb, my favorite so far, my body started immediately looking better. I looked like I lost 10 pounds while the jerk scale said I’d actually gained 2.5.

    Thanks!

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  • ksusan
    ksusan Member Posts: 4,505
    edited April 2019

    Only keto, which I'm not going to use for more than a few months at a time.

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