1. < Breast Cancer

Weight gain from Tamoxifen?

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
7318 | @7318 | Oct 11, 2023

On Tamoxifen for 3 months So many SE’s Stopped now for 3 months Finally feeling a little better To see oncologist this month I asked for prescription for Tamoxifen 5mg a day by a different drug manufacturer Haven’t started yet So concerned if I will be able to tolerate drug I was diagnosed in Jan of 2023 at 80 years of age Had partial mastectomy and no radiation.
Invasive Ductal Carcinoma MRI Neg for lymph nodes and Neg in other breast

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renunciate | @renunciate | Oct 12, 2023
In reply to @angelat "Thank you so much for you kind words. They really mean a lot! I was offered..." + (show)
@angelat

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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Have you considered Raloxifene instead of tamoxifen? Im wondering about it for my own treatment and would love to hear your opinions about it.

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1 reply
7318 | @7318 | Oct 12, 2023
In reply to @daisy1282022 "I took Tamoxifen about 2 months, then I developed hot flashes, sweats day and night, swelling..." + (show)
@daisy1282022

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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When I stopped Tamoxifen after 3 months on drug it took 3months for me to finally start feeling better still not 100% Still have Tamoxifen belly
I haven’t started the 5mg of Tanoxifin yet I see Oncologist next week to discuss treatment

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7318 | @7318 | Oct 12, 2023
In reply to @renunciate "Have you considered Raloxifene instead of tamoxifen? Im wondering about it for my own treatment and..." + (show)
@renunciate

Have you considered Raloxifene instead of tamoxifen? Im wondering about it for my own treatment and would love to hear your opinions about it.

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I will discuss this drug with him I believe he mentioned this drug but said it had same S/E’s
The joint and bone pain is very hard to deal with But the sheer exhaustion is so debilitating
Thank you

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