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Topic: Tamoxifen and Weight

Forum: Hormonal Therapy - Before, During, and After —

Hormonal therapy medicines can be used to lower the risk of early-stage hormone-receptor-positive breast cancer from coming back, shrink or slow the growth of advanced-stage or metastatic hormone-receptor-positive breast cancers, and lower the risk of developing breast cancer in certain women who are at high risk. They work by lowering the amount of estrogen in the body or by blocking the effect of estrogen on breast cancer cells.

There are several hormonal therapy medicines, including, tamoxifen (Nolvadex, Soltamox), Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole).

Hormonal therapy is usually prescribed for multiple years. Common side effects include hot flashes, joint pain, fatigue, and bone thinning.

Note: This is a safe place to share YOUR experience, not to be influenced or influence others. Please contact your doctor about any questions or concerns you may have if you are currently taking hormonal therapy.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Mar 23, 2021 02:23PM

PebblesV wrote:

Hi everyone,

I've been on Tamoxifen for just over 2 years now and have found it nearly impossible to lose weight. In fact, the opposite has happened where I gained weight. Keep in mind before I started tamoxifen, I had lost ~30 lbs. just through healthier eating and exercise. I gained this back since starting tamoxifen and despite mimicking what I did previously to lose weight and exercising more, I just can't seem to lose weight at all on tamoxifen.

Does anyone have similar issues? Or different even, have you been able to lose or maintain your weight while on tamoxifen and how? Any advice?

This is the only side effect I've been experiencing - other things that people mention like joint pain or hot flashes etc. I haven't had. So, since it seems to be tolerable to me despite this weight gain, and my husband reassures me he still loves and finds me attractive when there's more of me to love LOL, I continue to take tamoxifen dutifully... but wondering if there's a way to balance taking tamoxifen but also being able to get to a healthier weight.

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 5, 2021 05:56AM Veeder14 wrote:

HI PebblesV

I’ve got the same problem, it’s impossible to lose any weight even with increased exercise and eating a healthy diet. I’ve been on Tamoxifen just over 2years also. Gained the weight at the beginning of taking it but at least haven’t gain more due to intense exercising. I can relate to your frustration. I plan on bringing up the issue with my MO next appt but I am not to hopeful in finding a solution. I wonder about patients taking half a dose if they have the same weight gain. Change in font I don’t know how to adjust

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Apr 5, 2021 03:44PM beach2beach wrote:

yup, can't lose any weight. I was always pretty thin. Once I started the tamoxifen it kept piling on. Finally stopped at about 15lbs. Exercise, watch what I eat, nothing helps to lose it. :(

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 6, 2021 01:28AM PebblesV wrote:

Hi Veedeer14 and beach2beach - thanks for chiming in and commiserating. I’m actually on half dose and have the weight problem. I don’t seem to have any other SEs but the weight is a big one. Have also been on tamoxifen 2.5 years.

My oncologist did say 10-15 on weight gain could be linked to tamoxifen but anything beyond that had to be other factors. I swim for an hour 3x a week, it burns tons of calories, can’t believe I still can’t lose weight with that!

If any of us discover and healthymethods to lose weight while on tamoxifen, please share!

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 7, 2021 12:14AM cyathea wrote:

Yes, this is an issue for me as well. When I complained to the PA at my last immunotherapy appointment she said that estrogen helps the body regulate weight. Since Tamoxifen is suppressing estrogen it makes it very hard to lose weight even with a good diet and exercise. That said, lack of exercise has been a problem for me in the last few years so I’m trying hard to “get back on the horse” after chemo/surgery/radiation treatment

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Apr 7, 2021 10:02PM PebblesV wrote:

cyathea thanks for sharing and that absolutely makes sense re: estrogen regulating weight. Good luck getting ‘back on the horse’ - totally understand it. Hopefully you can find an exercise you enjoy, I’ve only been motivated to swim because I like it, but I have difficulty doing anything else!

So this will be an interesting test... my oncologist just told me I can pause tamoxifen for a month as I had some concerns with thrombosis side effects of the COVID vaccine and just got my shot. And with other issues we discussed re: weight gain this would be a good test to see if I can lose weight over the next month. He doesn’t want me to be off it more than a month so I’m going to try and lose all the weight I can this month! If I can lose weight this month then we know it’s the tamoxifen. If I can’t then we know it might be the extra cookies I sometimes have LOL.

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 9, 2021 05:04PM PebblesV wrote:

Just posting some things I found online re: Estrogren and weight gain/loss. Note that my intent is to stay on Tamoxifen and try to find what to eat, how to exercise, etc. to help counter a weight gain impact. But also this one month break that my oncologist suggested (which I get the COVID vaccine) might be helpful to jump-starting weight loss again. We will see! I will post my progress on this thread. https://www.bioagehealth.com/lose-weight-this-year... "ESTROGEN

Estrogen is directly involved in metabolism and maintaining a healthy weight, including helping to regulate glucose and lipid metabolism. When your estrogen levels drop, your metabolic rate declines and your body begins to store fat. In other words, you gain weight.

An estrogen deficiency also contributes to insulin resistance, which turns your body into a fat-storage machine. In addition to triggering weight gain, low estrogen affects where fat settles in your body. When estrogen levels fall, you begin to accumulate belly fat, even if you don't gain weight overall.

https://www.medicalnewstoday.com/articles/321837#m...

One form of estrogen called estradiol decreases at menopause. This hormone helpsTrusted Source to regulate metabolism and body weight. Lower levels of estradiol may lead to weight gain.

How to manage weight gain

Maintaining a healthy weight, even if it is related to an estrogen imbalance, begins with eating well and staying active.

A healthful diet to manage weight means:

  • avoiding processed foods
  • eating lots of fruits and vegetables each day
  • staying hydrated by drinking lots of water
  • avoiding soda, juice, and alcohol
  • including whole grains and lean proteins along with healthful plant-based fats

Being active is also very important for managing (lack of) estrogen-related weight gain. In addition to regular cardio exercise, such as jogging, swimming, or walking, people should add in strength training to help build muscle and promote healthy bones."

https://www.webmd.com/menopause/guide/menopause-we...

"The impact of estrogen. In animal studies, estrogen appears to help control body weight. With lower estrogen levels, lab animals tend to eat more and be less physically active. Reduced estrogen may also lower metabolic rate, the rate at which the body converts stored energy into working energy. It's possible the same thing happens with women when estrogen levels drop after menopause. Some evidence suggests that estrogen hormone therapy increases a woman's resting metabolic rate. This might help slow weight gain. Lack of estrogen may also cause the body to use starches and blood sugar less effectively, which would increase fat storage and make it harder to lose weight.

Actual study of weight gain and Tamoxifen https://pubmed.ncbi.nlm.nih.gov/22588672/

All three trials demonstrate that weight gain occurs primarily within the first 12 months of active treatment in a subset of patients. In the prevention trials, weight gain does not differ between anastrozole, tamoxifen and placebo and also did not differ between anastrozole and tamoxifen in the treatment trial."

Encouraging (or not?) study that says that despite being obese or not, Tamoxifen can still be as effective regardless of weight... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46767...

"The hazard of breast cancer recurrence was the same among obese (BMI ≥30.0 kg/m2) women as compared with underweight and normal-weight women (BMI <25.0; hazard ratio [HR] = 0.98, 95% confidence interval [CI] = 0.80 to 1.18).

For women with lymph node–negative, ER-positive breast cancer, obesity was not associated with a material increase in recurrence risk or a change in tamoxifen efficacy. However, because obesity was associated with increased risks of contralateral breast cancer, of other primary cancers, and of overall mortality, it may influence long-term outcomes for breast cancer survivors."

And finally one woman's personal story of how she managed to lose weight while on Tamoxifen...https://pinkhope.org.au/tamoxifen-one-womens-exper...

"The most upsetting side effect that I have experienced while taking Tamoxifen is the weight gain. I have spoken to many women regarding this and it is the BIG one!... I have researched the effects of Tamoxifen and weight gain countless times. I can say that MANY women report weight gain but my Oncologist keep saying it is not due to the medication... Then I heard about "Clean Eating" which I started this year. Why did I not know about this earlier? I decided to try it for nine weeks to look good for my best friend's wedding, while also doing my two personal training sessions per week. Outcome = I dropped 7kgs and my body fat dropped nearly 4%."

Anything italicized is a quote from that article. As for me, will report back in on how I far with a month break from Tamoxifen. If I'm able to lose weight this month, but can't when I start Tamoxifen again despite doing the same things from an eating (trying to eat cleaner, less processed, cut carbs and sugar) and exercise (swimming and weights for me!) standpoint then we know Tamoxifen is definitely the culprit! Hopefully during this month I can jump start the weight loss and then keep it up post-Tamoxifen, even if its at a slower rate would be better than nothing or gaining, which is what happened to me originally.

The pups (Domino and Finley) are cheering me on LOL!

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 9, 2021 05:19PM Beaverntx wrote:

Pebbles, please be aware that the half life (basically the time it takes for the level of a drug in your body to decrease by half) of Tamoxifen is so long that it is likely that there will be at least a bit of Tamoxifen in your body at the end of your month off. That said just to ask you not to be too disappointed if your weight loss efforts do not meet your hopes and expectations. I was losing weight regularly before starting Tamoxifen and saw a dramatic decrease in the rate of loss almost immediately so I have no doubt that there is a relationship between the drug and one's weight!

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 9, 2021 05:30PM PebblesV wrote:

Beaverntx - Yes, I'm aware and you are spot on, that's probably why my oncologist was OK with a month but not with 6 weeks. And like you, I had actually lost 30 lbs. between my initial diagnosis in August 2018 and when I started taking Tamoxifen in Jan. 2019. Then, since Jan. 2019, I've gained back those 30 lbs.! So definitely a correlation, but I'm still going to see if this one month break even with some Tamoxifen still in my body can jump start a little weight loss and I can find a way to maintain it, even if it needs to be at a slower rate, when I start to take it again.

Here's hoping... on the positive, it's barely anything, but I did drop one whole pound in the past few days since I was off Tamoxifen, so we will see! And yes, I ate. Just trying to eat cleaner.

Oh and curious, you said you saw a dramatic decrease in the rate of loss but you were still able to lose weight? If so, can you share some tips of what you did to at least continue the weight loss, even if at a slower rate? Frankly that would be better for me than the weight gain that happened to me.

Thank you!

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 9, 2021 06:28PM bcincolorado wrote:

Good thread.

Gained a lot on it. Ate salad 2 meals a day and oatmeal for breakfast. Exercised like crazy and nothing. MO laughed when I complained about not being able to lose. He basically told me to not worry about it. Meds were keeping me alive and stay on them. So I did and forgave myself over it since not my fault.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/6/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/14/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/29/2016 Femara (letrozole)
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Apr 9, 2021 09:16PM Beaverntx wrote:

Pebbles, well, the rest of the story is that the rate of loss decreased until it no longer existed! I had continued healthy eating and upped my steps per day to 12,000. A flare of trochanteric bursitis provided the final blow to losing since I had to decrease my level of walking.That and being a pandemic couch potato contributed to regaining 40 lbs. I am currently rebuilding my strength and the increased activity has helped with a small weight loss, hoping that continues! Unfortunately, I inherited my mother's high blood pressure and cholesterol tendencies and the extra weight body style of my father's family. My mother was about 5ft3in and weighed just over 100 pounds but began treatment for high blood pressure on her 40s

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 10, 2021 03:32AM gb2115 wrote:

Late to this thread, but yeah, tamoxifen and weight. At the 4 year mark I'm actually losing a couple pounds but losing muscle mass, and all the pudge is going to my belly. I guess I would be called skinny fat. It's making me sad because none of my summer shorts fit. MO told me this week that it's totally the tamoxifen. I'm pretty tight on what I eat, if I cut back I would be very hungry. I tried for a couple of days and kept waking up at 1 am with nauseous hunger. Going to try to increase exercise a bit but with tendon pain and pelvic prolapse, well, can only do so much. I think I need to work on acceptance.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Apr 10, 2021 06:49AM Veeder14 wrote:

PebblesV

I had a 4 month break from Tamoxifen and lost weight. I had only been on it for 4 months also. After a few weeks off of it my stomach upset was gone and I no longer had trouble sleeping. I hope you can loose weight while on your month break

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Apr 10, 2021 09:01AM SpecialK wrote:

I have not been on Tamoxifen, rather was on aromatase inhibitors, which are a different kettle of fish as they suppress the adrenal supplied estrogen created by aromatase. I gained during chemo and initially on anti-hormonals and found that I also could not lose weight despite very brisk daily 5 mile walking and limiting calories to 1500 per day of really sensible food, essentially Mediterranean diet. This approach had always worked for me previously and I was very frustrated because "on paper" it should have! I didn't cheat and used MyFitnessPal to track both exercise and every single bite of food I ate. I eventually was successful with weight loss when I tried an elimination diet and no exercise (due to surgery) and determined, at least for me, what I eat seems to be more important than how much. I eliminated sugar, soy, dairy, gluten, peanuts, corn and eggs. I ate lean clean protein, non starchy vegetables, and low glycemic index fruit. I mostly ate whole foods - much like the Whole30 plan, with very little processed things, and used nut milks in place of dairy. I really didn't use much portion control, was more mindful of what the percentages of my plate were filled with - 25% protein, 25% allowed starches (sweet potatoes/brown rice/quinoa), and 50% vegetables. This resulted in a slow but steady loss over six months of 23 lbs with literally no exercise, and I was not hungry. Or hangry, lol! This loss allowed me to return to my pre-diagnosis weight and even a few lbs lower. The eliminated foods are commonly regarded as either heavily sprayed with pesticide, or foods that people are sensitive or allergic to - eating them can create, for some, a state of inflammation that makes weight loss difficult to impossible. I also wanted to point out that Tamoxifen does not suppress estrogen, it blocks it on breast cells. The reason it is prescribed to pre-menopausal women is to allow circulating estrogen to do the beneficial things it does - for the heart, bones, brain, skin/hair, etc. There are a number of studies that have shown that Tamoxifen does not cause weight gain, but reading posts on this site tell me that for a lot of people it does. For some people Tamoxifen can actually elevate the levels of serum estrogen relative to progesterone and lead to estrogen dominance, which can result in weight gain - particularly belly/hips/thighs. It might be worth having your estrogen levels checked to see if they are high as this may be why you are experiencing difficulty losing weight - not too little estrogen, but rather too much. Wishing you all the best - I know how annoying this state of affairs is!

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)

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