Did you gain weight on Tamoxifen? What helps?

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.

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?

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.

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?

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?

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?

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?