Anyone taking low dose Tamoxifen for high risk chemoprevention?

light1candle

I am a post-menopausal woman who was recently diagnosed with LCIS, a high risk condition, and was offered the usual chemoprevention choices of tamoxifen, raloxifene (Evista), or exemestane. I would like to do what I can to ward off BC, but I find the side effects and risks of these drugs daunting, especially since I have a number of pre-existing conditions which complicate matters.

I saw a thread on this site for women considering low dose tamoxifen (10mg, 5mg, 2.5mg, 1mg or alternate day dosing) which had some good links to studies that indicate that lower doses of tamoxifen than the standard 20mg may possibly be effective. Most of the women who posted already had BC and were taking anti-hormonal drugs as an adjuvant treatment. Some were intrigued by the idea of low dose tamoxifen, hoping to reduce side effects, but many were not comfortable (or had docs who were not comfortable) changing up a treatment which is the standard of care.

This leads me to ask if anyone who is on chemoprevention for a high risk condition has talked to their docs about low dose tamoxifen? I understand that many who might benefit from the risk reduction of anti-hormonals, choose not to take one due to concerns about risks & SE. However, taking something seems better than taking nothing to me, so I plan to ask my doc about low dose tamoxifen. I'm particularly interested in hearing from anyone who has taken a lower dose of tamoxifen -- what dose did you decide to try? What was your doc's reaction to the idea? What has your experience been like

Barb

fuzzdog

I was just searching about low-dose Tamoxifin options and was glad to see you had posted this question.   Although it looks like there were no replies!   I am curious what you may have found out and what you decided to do for yourself.        I had a small, stage 1, grade 1 breast cancer that was removed a couple of months ago.   I am pre-menopausal and Tamoxifin is recommended to me.   The low dose option is appealing.  Would love to hear what you found out about it, if anything.  Thank you!

Moderators

Hi fuzzed, and welcome to BC.org, although we're sorry you've had to join this great community!

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Bethane

I am taking 10 mg for the third attempt. On day 5 but will be stopping again due to side effects of constant headache, wavy/dizzy feeling in my head, shakey feeling all over, muscle pain, uterine pain (causes uterine cancer) and. Decided tonight I need to sleep since I've only been getting about 3 maybe 4 hours sleep with this synthetic drug. I will be seeing a holistic MD to detox and determine natural alternatives

Brengun

Hi, I am 2.5yrs post diagnosis and have been on 20mg Tamoxifen for 2 years. In that time I have developed Tinnitus, Super Ventricular Tachycardia and had two veins burst in my eye. I am super sensitive to medications now and am on baby dose for the SVT, half of 100mg aspirin to stop clots and I couldn't even take escalopram for depression at all. In view of my side effects on Tamoxifen 20mg, I have dropped my dose myself to 10mg. This may or may not increase the chance of cancer returning but if I die of a blood clot or stroke or heart attack or go blind, I think breast cancer would be the least of my concerns.