Did you gain weight on Tamoxifen? What helps?

Yes !!!! Thank you !!! You’re awesome !

Hi @creeder! I was 38( now 66) when I went on tamoxifen for 5 years. When I started I was within 5-10 lbs of my high school weight (was low end of normal range BMI). I was aware of the well known side affect of increased appetite before starting tamoxifen. I was bound and determined not to gain weight! Well, I ended up gaining 15 lbs. I did not have any other side affects. I had never been so heavy. I felt at that time, the important thing was that if the tamoxifen kept the cancer from returning, I could live with the weight gain. I hope this helps

You ladies are wonderful!

I posted a question on another post regarding my issues with ER/PR+ DCIS, Osteoporosis & heart issues & the effects of radiation & hormone suppression. I’m concerned because radiation & hormone suppression meds all can cause or contribute to additional life long health issues. One of the moderators, Colleen had offered these suggestions regarding natural hormone suppression that might be beneficial to this discussion. Here’s what @colleenyoung offered as suggestions ~ I hope this helps.
“ You might also want to ask about Integrative Medicine too. There is an incredibly long list of natural substances that have been tested for their estrogen inhibiting qualities. Just scrolling through this journal article made my head spin:
– Natural Products as Aromatase Inhibitors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074486/

Anyone who is considering a non-synthetic aromatase inhibitor should talk to someone qualified in an Integrative Cancer Care specifically. Here's more information about integrative medicine and cancer care at Mayo for example:
– Integrative medicine https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/about/pac-20393581“

I have been taking 20 mg of tamoxifen for 2 years. I noticed an increase in appetite and stopped eating as many carbs as possible. I eat pita bread and lavash as substitutes for bread of any kind. I also avoid all sugars when possible. I noticed that walking quickly for 30 minutes 5 days a week reduced my paunch. Good luck.

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?

Although I agree with more honesty and less nonsense. I would also add back into the conversation. “Cancer” with a big C, because when we are railing against our medicine ( I do it too ) we need to remember this is the monster we are fighting.
I don’t disagree that there will be some hardship and some things are harder than others. If weight gain is absolutely something you cannot abide then please talk to your doctor about trying a different endocrine therapy. Please don’t give this monster another shot at you without a conversation with your doctor.💕
How long have you been on Tamoxifen?

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.

You might need to see a different doctor, get a second opinion. There are too many choices for you to not have even one other try.
Especially if you are 50 and have been on it four years. This is the first choice for premenopausal women, but I would ponder if you were still truly premenopausal.
I had my ovaries removed and then took tamoxifen for 5 and anastrazole for 10. I was 38 at diagnosis. I will tell you the last 19 years have not been easy, but I like to focus on the good things in my life.
I sweat like an ice bucket on a hot day, and feel like someone set my head on fire most of the time, but I keep paper fans close by and have small rechargeable fans around my living space.
If I have a choice between dusting the house and tacking up for a ride. I will take the ride every time.
There are hardships in survivorship, there will be things we grieve in survivorship. I miss my 155lb body, but I love the years I have been able to spend with my husband whom I found too late in life. I love all the time I have spent making sure every member of my family has had the care they deserved. Most of all I love being able to look back on 19 years and say, yep, I did that. I feel like if I can do that (chemo, radiation, 7 surgeries, more chemo, and let’s not forget all that endocrine therapy) I can now take anything life throws my way.
It might be hard but…………..you got this❣️

Ok, I will keep fighting. I am just so darn tired. Thanks for the encouragement!

S