Did you gain weight on Tamoxifen? What helps?

Posted by creeder @creeder, Jan 15, 2022

I have been placed on a low dosage of Tamoxifen and I have noticed a considerable weight gain in my midsection. It almost makes me depressed as I am being more cautious with my food intake as well as completing 60 minutes of exercise at a fitness center daily. It is so frustrating to see no results! The scale seems to keep going up with no regard to increased healthy habits. Has anyone else had this problem and will it level off soon or continually get worse. Is it worth it????

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@creeder, it's not good when weight gain also causes poor mental health. I'm bringing @brinacarmen @azlane @betsyk @auntieoakley @kspicer @bwag @djwc @heidi47 into this discussion as they've been there.

Creeder, are you currently on any other treatment? Have you heard of intermittent fasting?

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Hi Creeder! Some of us have been there. I just completed my first year of Tamoxifen. I didn’t have severe symptoms at the beginning, but I lost my period (probably drug-induced menopause) after 10 months of treatment and then everything changed. Night sweats, hot flashes, weight gain, and mental fog. I had lost a lot of weight before starting Tamoxifen, so gaining weight was very frustrating. I have been able to control it by switching all carbs (pasta, bread, rice) with frozen vegetables. I don’t eat less, just eat smarter. It helps a lot!! I also walk, not much, but enough to keep my caloric burn higher than my intake. Hope this helps!! Hang in there!

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Hi @creeder, yes I gained weight on tamoxifen. The trade off of no estrogen feeding my cancer, was instant menopause in my 30’s. That meant weight gain, my horses looked at me as if to say “really?”, I managed to keep it reasonable by eating smarter and increasing my exercise but I did gain anyway.
I lost a ton on chemo so I had a bit I could gain back before it was a net gain. Then I lost most of that after I started anastrazole. Then when I quit smoking 7 years ago, the battle of the bulge began again. That’s when I gave up and put drawstrings in all of my skirts.
To answer your question, I do feel it was worth it, to keep the cancer at bay. Like you, my weight was important to me, but at a point I had to learn to go easy on myself. Being fit is important, but if I let the cancer grow then what will the weight matter. I am glad I finally quit smoking too, but it sure added to the struggle.
How long have you been on tamoxifen?

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I so agree with Chris. Like her, I had tons of chemo and got down to a healthy weight. Tamoxifen for 2 years yielded "tree trunk legs" and puffiness everywhere. I eat well, but not a vegetarian. Now on Anastrozole, that type of weight gain is gone. I think trading a little weight gain for knowing that the estrogen feeding link is broken, is well worth it. Nevertheless, you need to be comfortable with yourself. Sometimes just changing fashion styles will help, new make-up, new hair....It's just important not to let the weight gain lead to other health problems which might lead to other health problems not related to cancer. And...any amount of exercise is a plus. We don't all need to turn into marathon runners. Wishing the best for you!

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Hi Creeder I feel you ! My experience with tamoxifen was weight gain and lots of other side effects that after 9 mos ,of serious suffering , my oncologist took me off of it. Because I was having an upcoming surgery , it was actually good timing to go off. I am seeing her next week and we are going to try Arimidex which I believe is anastrazole. Let’s see how that works
In the meantime I am avoiding all animal products and exercising a lot , taking Dim and Oncoplex, eating tons of veggies and doing intermittent fasting as my oncologist said there is clinical data backing fasting as helping prevent recurrence
I truly want to adjust to one of these estrogen blockers as I never want to experience this again Tamoxifen made it impossible for me to work or enjoy life. I couldn’t bear 4 more years of it.
I pray you find your way with one of these drugs. Or that they come up with something doable for us !

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@brinacarmen

Hi Creeder I feel you ! My experience with tamoxifen was weight gain and lots of other side effects that after 9 mos ,of serious suffering , my oncologist took me off of it. Because I was having an upcoming surgery , it was actually good timing to go off. I am seeing her next week and we are going to try Arimidex which I believe is anastrazole. Let’s see how that works
In the meantime I am avoiding all animal products and exercising a lot , taking Dim and Oncoplex, eating tons of veggies and doing intermittent fasting as my oncologist said there is clinical data backing fasting as helping prevent recurrence
I truly want to adjust to one of these estrogen blockers as I never want to experience this again Tamoxifen made it impossible for me to work or enjoy life. I couldn’t bear 4 more years of it.
I pray you find your way with one of these drugs. Or that they come up with something doable for us !

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Hi! @brinacarmen! I’m very interested in the intermittent fasting that your oncologist informed you about. Also, what is Dim and Oncoplex? My oncologist has given me no other hope then the anti hormone drugs that have made me so sick I can’t function. I have tried all of them and Exemestane twice. She said Tamoxifen was my last hope. It sits on my counter opened as I just can’t make myself take it. The side effects and the damage to other organs just doesn’t seem worth it. Of course I do t want my cancer to come back but, I also don’t want to destroy the rest of my body and there is no guarantee my cancer won’t come back! I was stage one ductile carcinoma. I had 3 weeks of radiation and my Oncotype was a 9. I want to try other options but feel a little lost and frustrated in this process. Help?

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@auntieoakley

Hi @creeder, yes I gained weight on tamoxifen. The trade off of no estrogen feeding my cancer, was instant menopause in my 30’s. That meant weight gain, my horses looked at me as if to say “really?”, I managed to keep it reasonable by eating smarter and increasing my exercise but I did gain anyway.
I lost a ton on chemo so I had a bit I could gain back before it was a net gain. Then I lost most of that after I started anastrazole. Then when I quit smoking 7 years ago, the battle of the bulge began again. That’s when I gave up and put drawstrings in all of my skirts.
To answer your question, I do feel it was worth it, to keep the cancer at bay. Like you, my weight was important to me, but at a point I had to learn to go easy on myself. Being fit is important, but if I let the cancer grow then what will the weight matter. I am glad I finally quit smoking too, but it sure added to the struggle.
How long have you been on tamoxifen?

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I appreciate your feedback and will discuss my concerns with the doctor. I have been on Tamoxifen since about August. I am 71 years of age, no lymphnodes were affected with my surgery and they considered me a stage 0. I did have 5 radiation treatments consecutively and was very hesitant about putting the added chemical of Tamoxifen in my system. I am continuing with screening at Mayo every 6 months....so that is my concern. I am truly trying with healthy eating and exercise to have no effect. That is where my frustration lies. I have already gained approximately 8 pounds and I do not want to be vain about how I look but I am really feeling down about this. Maybe changing to anastrozole would help.

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@bethab

Hi! @brinacarmen! I’m very interested in the intermittent fasting that your oncologist informed you about. Also, what is Dim and Oncoplex? My oncologist has given me no other hope then the anti hormone drugs that have made me so sick I can’t function. I have tried all of them and Exemestane twice. She said Tamoxifen was my last hope. It sits on my counter opened as I just can’t make myself take it. The side effects and the damage to other organs just doesn’t seem worth it. Of course I do t want my cancer to come back but, I also don’t want to destroy the rest of my body and there is no guarantee my cancer won’t come back! I was stage one ductile carcinoma. I had 3 weeks of radiation and my Oncotype was a 9. I want to try other options but feel a little lost and frustrated in this process. Help?

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Hi ! There is so much data on intermittent fasting !! During chemo , after chemo my oncologist gave me a paper which I can’t find. I am trying to copy link of one I found on breast cancer.org It says to fast for over 13 hours at least. I skip dinner

The supplements I take were recommended by an MD that works at the hospital He recommended DIM by Enzymatic Therapy , which is the one he trusts based on studies. He also recommended oncoplex which is a clinically tested product
(Glucoraphanin ). And Turkey Tail mushroom by Host Defense This is in addition to the tamoxifen I was taking not in place of Right now this is all I am doing until I start Arimidex
I suggest you look up all three supplements and any studies done on them. Just to confirm this was in addition to an aromatase inhibitor. Some women who just couldn’t tolerate any of them , rely on a vegan diet and these supplements, they just roll the dice but I don’t want to be one of them. I pray I do better with Arimidex. I am a massage therapist and personal trainer so being in unbearable joint pain is not an option

I tried to attach link to the intermittent fasting benefits for breast cancer and non recurrence but couldn’t !!!!

Hope this helps !!

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@colleenyoung

@creeder, it's not good when weight gain also causes poor mental health. I'm bringing @brinacarmen @azlane @betsyk @auntieoakley @kspicer @bwag @djwc @heidi47 into this discussion as they've been there.

Creeder, are you currently on any other treatment? Have you heard of intermittent fasting?

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I completed 5 radiation treatments after lumpectomy. And yes I am interested in intermittent fasting and intuitive eating. Maybe they would help.

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@brinacarmen

Hi ! There is so much data on intermittent fasting !! During chemo , after chemo my oncologist gave me a paper which I can’t find. I am trying to copy link of one I found on breast cancer.org It says to fast for over 13 hours at least. I skip dinner

The supplements I take were recommended by an MD that works at the hospital He recommended DIM by Enzymatic Therapy , which is the one he trusts based on studies. He also recommended oncoplex which is a clinically tested product
(Glucoraphanin ). And Turkey Tail mushroom by Host Defense This is in addition to the tamoxifen I was taking not in place of Right now this is all I am doing until I start Arimidex
I suggest you look up all three supplements and any studies done on them. Just to confirm this was in addition to an aromatase inhibitor. Some women who just couldn’t tolerate any of them , rely on a vegan diet and these supplements, they just roll the dice but I don’t want to be one of them. I pray I do better with Arimidex. I am a massage therapist and personal trainer so being in unbearable joint pain is not an option

I tried to attach link to the intermittent fasting benefits for breast cancer and non recurrence but couldn’t !!!!

Hope this helps !!

Jump to this post

Allow me to post this for you. I hope this is the one you were wanting.
https://www.breastcancer.org/community/podcasts/intermittent-fasting-20210122
@creeder here is the link from breast cancer.org about intermittent fasting.

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