Community Member
5 months agoHi Ladies,I started a conversation about Tamoxofin,but some people added non related stuff. Therefore my original question got blotted out,So I am trying again. Please only Tamoxofin stories. The good ? The bad? The Ugly? The very very Ugly. Please help me make a decision ! I just need facts from anyone who has tried it,succeeded,failed,endured or quit Thankyou so much and sending love to all.
Accepted Answer
Your request for real experiences with tamoxifen is completely understandable - hearing from others who've been through similar treatment decisions can provide valuable perspective. This community has many members who have navigated hormone therapy decisions and may be willing to share their experiences with both the benefits and challenges they've encountered. Remember that everyone's response to medications can be different, so discussing these community insights with your healthcare team can help you make the most informed decision for your specific situation.
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Community Member
5 months agoHi Carole, I started Tamoxifen June 13,2025. Not very long to offer that much feedback. I can share that I have experienced a lot of nausea, I take the medication at noon. My appetite is very small, I feel fatigued by 5:00 p.m. I have some pain in hips and thighs at night. My doctor told me to start taking medication before bed. I haven’t had hot flashes like I was told I would have. I hope this helps you Best of luck with your treatments
Community Member
5 months agoThanks Mayo let’s hope others give there input also so we can document .
Community Member
5 months agoHi Carole, I’m new to the tamoxifen game too. Started June 16, 2025. I take it before bed. Noticing some moodiness and fatigue. That’s it so far.
Community Member
5 months agoHi Carole. I’ve been on Tamoxifen for almost a year. Like you all I read was terrible things and I was scared to begin but over 20 years in Oncology research I know how cancer grows and can return. I don’t want the cancer to win. So that first day I took and was nervous. I would say the first 2 months of taking 20mg I was definitely tired and maybe a bit moody but it all subsided as my body adjusted. No hot flashes. No issues sleeping. I take it first thing on an empty stomach and that first month I lost 11 pounds and it has stayed off. Almost a year in I have dry skin and thinning hair (I started rogaine) but that is all. Other than that I wouldn’t know I was on it. My Onc said ALOT of women have no issues, you just don’t hear about them, just those that do!!! Makes sense. It’s your body and completely your call but I would give it a shot, you could be one of the lucky ones. If not you decide what to do. I just get sad when I see cancer patients refuse the meds and it comes back. I’ve seen it a lot in my job. There’s no guarantee mine won’t come back but I don’t want to regret anything plus I have a 10 year old I want to be here for. Good luck. Wish none of us were dealing with this
Community Member
5 months agoI am 65. I was told Tamoxofin is usually prescribed for women who have not yet gone through menopause. I am on Anastrozole.
Community Member
5 months agoBetsy E I was told the opposite. Tamoxofin after menopause
Community Member
5 months agoCarole, I’m an RN and aware of many on preventive Tamoxofin, that would not benefit Triple negative cancers, but helps prevent hormone positive diseases. Honestly, most seem to manage through symptoms and are on this prevention medication years. Best wishes.
Community Member
4 months agoI have been taking for 10 months. Initially some fatigue but that is gone. No problems
Community Member
4 months agoThanks everyone As I am going to be traveling for 2 months I will wait till my 6 month mammogram and then decide in December My brilliant oncologist followed a 15 year italian study and the results for 20 a day versus 10 every other day are the same ! You may want to ask your onc about the italian trial
Community Member
4 months agoHi Carole. Any chance you have the journal article with study readout? The only version I have ever seen was studied in DCIS, not invasive. Thanks
Community Member
4 months agoI was 51 and had invasive lobular carcinoma, estrogen/progesterone positive, cancer cells in sentinel lymph node, HER2 negative . Mastectomy of right breast, chemo, then radiation. Started on Tamoxifen. I hated it. Horrible hot flashes, fatigue was unreal, dizziness, mood swings, and brain fog (chemo brain too). They switched me to Anastrozole once I showed my hormones were reduced to the point of post-menopause. That’s been worse for me. Instant weight gain, pain in all of my joints, fatigue, dizziness, and brain fog. However, it’s not this way for everyone. Just felt I needed to add my version which hasn’t been too pretty.
Community Member
2 months agoYour request for real experiences with tamoxifen is completely understandable - hearing from others who've been through similar treatment decisions can provide valuable perspective. This community has many members who have navigated hormone therapy decisions and may be willing to share their experiences with both the benefits and challenges they've encountered. Remember that everyone's response to medications can be different, so discussing these community insights with your healthcare team can help you make the most informed decision for your specific situation.
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