1. < Breast Cancer

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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mariecarder | @mariecarder | Jun 20, 2023
In reply to @sheilaelaine "Thank you for your sensitive and thoughtful response. I appreciate it. I have been on Tamoxifen..." + (show)
@sheilaelaine

Thank you for your sensitive and thoughtful response. I appreciate it.

I have been on Tamoxifen for four years -- with at least 6 to go. I had a very aggressive triple positive tumor -- thankfully caught early. I was very healthy then and able to tolerate high doses of chemo and lots of radiation. After four years on tamoxifen I am like an 85 year old version of myself at 50.

I know what you are saying and I do try to have perspective but some days I wonder what I am fighting for when I have so much difficulty tolerating Tamoxifen. I did ask the head of endocrinology and my oncologist and they were not able to recommend anything different.

It isn't just weight gain, it is devastating hot flashes and sweats and nausea and fatigue. I am in constant pain and I have lost my vitality. It is not a life I recognize. I was a runner. I ran 10 kms every day. I was fit and health and trim. I was strong physically and I worked hard to take care of myself with good healthy food and health supporting habits. I am not even remotely that person any longer and I cannot even look in a mirror. It is devastating.

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I'm so sorry for how hard that must be. I have just started taking Tamoxifen and have mild side effects- mild hot flashes and tiredness but I don't know if the tiredness is from life or the Tamoxifen? So far I haven't gained weight yet but I am trying to watch it. This cancer journey is hard and no one tells you about how the journey just keeps going well after the initial treatment. Hang in there!

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daisy1282022 | @daisy1282022 | Jun 21, 2023
In reply to @sheilaelaine "Every single woman I know who is on Tamoxifen is unrecognizable from their former selves, me..." + (show)
@sheilaelaine

Every single woman I know who is on Tamoxifen is unrecognizable from their former selves, me included.

I weighed 120 pounds my entire life. I weigh 180 pounds.

Exercise, restricted calories, fasting etc etc are just bad advice that puts the onus on the patient, dismisses the real agony of uncontrollable weight gain, are entirely ineffective, and let's health care providers off the hook.

I think that the medical community needs to take this seriously and stop making assumptions about the habits of the tamoxifen user. It is insulting. I went through all of the calorie counting and restrictive diets and exercise and etc. I actually had a health care provider tell me one week that the reason it wasn't working was because I cooked my vegetables and I should eat them raw. Two weeks later the same woman told me that I should be cooking them .

When are health care providers going to listen? It is the drug that is causing the problem, not the patient. I think the only reason that there are no good studies on this is because if women knew what this drug does to you, no one would take it, and there are no good alternatives right now....How about a little more honestly and less nonsense?

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I took Tamoxifen about 2 months, then I developed hot flashes, sweats day and night, swelling of the eyes, leg and foot cramps, etc.. I decided to stop Tamoxifen about three weeks ago, my side effects are still persistent now. I should not follow my onco's suggestion, she convinced me with lowest dosage 5mg per day, and stop any time when I feel side effects. Now I have to wait to see how long the side effects will go away.

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1 reply
angelat | @angelat | Jun 22, 2023

I only lasted 6 weeks on Tamoxifen taking 10 mg every other day. Hot flashes and nausea 4 days in which was tolerable compared to 5 weeks in, I had horrible stomach cramping, swelling in face with rash and constant itchiness face and “lady bits “. It was unbearable and I know most women are strong and able to persevere but I just can not. I feel like a failure. Thank god so far I do not have cancer, only ADH but I deal with anxiety everyday with this decision.

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jun 22, 2023
In reply to @angelat "I only lasted 6 weeks on Tamoxifen taking 10 mg every other day. Hot flashes and..." + (show)
@angelat

I only lasted 6 weeks on Tamoxifen taking 10 mg every other day. Hot flashes and nausea 4 days in which was tolerable compared to 5 weeks in, I had horrible stomach cramping, swelling in face with rash and constant itchiness face and “lady bits “. It was unbearable and I know most women are strong and able to persevere but I just can not. I feel like a failure. Thank god so far I do not have cancer, only ADH but I deal with anxiety everyday with this decision.

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Please repeat after me……You are not a failure, the treatment was a failure.
This actually sounds like a horrible reaction! I could not have persevered through that either, and I consider myself to be pretty tough.
Did your doctor consider another type of treatment for you?

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1 reply
drummergirl | @drummergirl | Jun 23, 2023

I had taxol/carboplatin for 12 treatments. I gained a pound/week for the last 5 or 6 weeks, with no change to my diet or exercise. I am small so that is a noticeable weight gain for me. I am now a year past finishing that treatment, but the weight still sticks to me. I now think the treatment may have killed my metabolism. So frustrating….I feel your pain.

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angelat | @angelat | Jun 23, 2023
In reply to @auntieoakley "Please repeat after me……You are not a failure, the treatment was a failure. This actually sounds..." + (show)
@auntieoakley

Please repeat after me……You are not a failure, the treatment was a failure.
This actually sounds like a horrible reaction! I could not have persevered through that either, and I consider myself to be pretty tough.
Did your doctor consider another type of treatment for you?

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Thank you so much for you kind words. They really mean a lot! I was offered no other option than to try 5 mg everyday. For every side effect my oncologist had another medication like hydrocortisone for itching, or a prescription for what was the start of a UTI, but these side effects could be ongoing and I’m just not sure I want to do deal with this. It’s so overwhelming! I see her in August and will discuss further. Thanks again☺️

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1 reply
Rom828 | @jgallagher04921 | Aug 19, 2023

I know everyone reacts to meds differently, but would like to take a poll please. From what you have experienced or been told from drs which meds are worst for weight gain...Tamoxifen or AI's?

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3 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 19, 2023
In reply to @jgallagher04921 "I know everyone reacts to meds differently, but would like to take a poll please. From..." + (show)
@jgallagher04921

I know everyone reacts to meds differently, but would like to take a poll please. From what you have experienced or been told from drs which meds are worst for weight gain...Tamoxifen or AI's?

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I took both tamoxifen for 5 years and anastrazole for 10. I never gained weight until a few years later when I was in a horrible accident, so I don’t think this will be universal.
There are a ton of variables in people, topping the list is genetics and daily life.
Then there is other medical conditions, jobs, family obligations etc, etc.
Are you concerned about weight gain, or gained weight on one of these drugs?

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1 reply
Rom828 | @jgallagher04921 | Aug 19, 2023
In reply to @auntieoakley "I took both tamoxifen for 5 years and anastrazole for 10. I never gained weight until..." + (show)
@auntieoakley

I took both tamoxifen for 5 years and anastrazole for 10. I never gained weight until a few years later when I was in a horrible accident, so I don’t think this will be universal.
There are a ton of variables in people, topping the list is genetics and daily life.
Then there is other medical conditions, jobs, family obligations etc, etc.
Are you concerned about weight gain, or gained weight on one of these drugs?

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I've been on Tamoxifen since June 24th, no weight gain. But dr wants me ro change to AI soon because I'm having my ovaries out next week. I'm nervous to switch to AI, weigh gain being one of several reasons.

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Mentor
Miriam, Volunteer Mentor | @mir123 | Aug 19, 2023
In reply to @jgallagher04921 "I know everyone reacts to meds differently, but would like to take a poll please. From..." + (show)
@jgallagher04921

I know everyone reacts to meds differently, but would like to take a poll please. From what you have experienced or been told from drs which meds are worst for weight gain...Tamoxifen or AI's?

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I assume you want to avoid weight gain rather than trying to add weight? I've been on letrozole for 10 months and have lost a few pounds (normal weight in any case) but that seems totally unrelated to meds--just a bit more exercise and less dessert. Do AI and Tamoxifen actually cause spontaneous weight gain, or maybe just occur at the same time? Hope you get the answers to decide what works for you.

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