Why are dosages for estrogen suppression drugs one-size-fits-all?

Posted by gldilli @gldilli, Mar 28, 2023

Why is the dosage for Anastrozole (and any other AI) the same for everyone no matter your weight or size? Does this-one size-fits-all approach have an impact on side effects, risk of recurrence, etc. I’d like to know what the medical community has to say.

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Profile picture for karenschmitt @karenschmitt

@karenzm
Disclaimer first: I am 69 and am just 6 months in on my cancer journey.
I had extreme side effects and am concerned about heart and bone health from Letrozole so I reduced dose to every other day after reading a NIH study.
I also started working with a Functional Medicine Doc who is giving me testosterone pellets (that include an AI). He also gave me a DIM supplement to remove any estrogen metabolites. Testing 6 weeks out are good, and I feel almost normal again!

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@karenschmitt

I am wondering about the same thing, what is DIM supplement? What did your oncologist say about the DIM supoplement?

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Profile picture for karenschmitt @karenschmitt

@karenzm
Disclaimer first: I am 69 and am just 6 months in on my cancer journey.
I had extreme side effects and am concerned about heart and bone health from Letrozole so I reduced dose to every other day after reading a NIH study.
I also started working with a Functional Medicine Doc who is giving me testosterone pellets (that include an AI). He also gave me a DIM supplement to remove any estrogen metabolites. Testing 6 weeks out are good, and I feel almost normal again!

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@karenschmitt hi Karen I had terrible joint pains afterletrozole prescribed in 2018. My breast cancer was caught early had 15 sessions of radiotherapy. I told my consultant I had no quality ty of life so stopped the drug. I have rheumatoid arthritis according to my rheumatologist be,cause, of the drug!!!!!!! Who knows if I would have got other.wise seems a coincidence. Hope you can make a good decision for you

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Profile picture for karenschmitt @karenschmitt

@karenzm
Disclaimer first: I am 69 and am just 6 months in on my cancer journey.
I had extreme side effects and am concerned about heart and bone health from Letrozole so I reduced dose to every other day after reading a NIH study.
I also started working with a Functional Medicine Doc who is giving me testosterone pellets (that include an AI). He also gave me a DIM supplement to remove any estrogen metabolites. Testing 6 weeks out are good, and I feel almost normal again!

Jump to this post

@karenschmitt Those testosterone pellets sound veery interesting to me to help with bone health. Where did you find a Functional Medicine Doc who will do it?

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Profile picture for karenzm @karenzm

Everyone's comments are very helpful. For me.. I was diagnosed with IDC stage 2 (June '23), 2 chemo rounds, lumpectomy (3 positive lymph nodes), 30 rounds of radiation. NO family history that i know of, BRCA negative (40), Letrozole started Sept '23. took 10 day break to try Anastrozole and it was terrible on my gut so back to Letrozole. The damage to my body since being on Letrozole is extreme osteoporosis, trigger finger surgery on all 10 fingers! still lots of finger pain, now foot pain, the dryness 'everywhere' is ridiculous! hot flashes non-stop, muscle pain, extremely fidgety, difficult to sleep. I eventually went to Letrozole 3x wk and over time, it wasn't as bad as in the beginning but it was very clear what this was doing to my body. March '25 had my ovaries removed. I love to garden, and other outside things and i just hurt! Just switched to Exemestane in Jan '26 but that is just as bad, maybe i need more time to get used to it? my quality of life is getting worse by the day and Im sure many side effects will not be reversible. Im having to decide if i want to continue on this path of destruction to my body or risk cancer returning. I just don't know what my risk level is?
Of course Drs wont tell you its ok to stop or reduce the amt as they are or feel responsible if cancer returns so unfortunately they have to go by the books. They also told me estrogen testing is not reliable so making med decisions on these results are not solid. Can anyone tell me if they used Exemestane and how they did on it? and if anyone stopped after 3-5 years and did they return to normal or have permanent damage? My Dr also said that cancer can return in a different place and that scares me. I know everyone is different but i just need to hear other experiences to make my decision. I recently stopped all meds but wonder if that's not a good idea? please help

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@karenzm
I’ve taken all 3 AI and Tamoxifen. Had brain fog and pain on all of them but became suicidal on exemestane and Tamoxifen with the manufacturer being Aurobindo. I’m playing with dosages for Letrozole manufacturer Breckinridge. Feeling crummy.

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Is there any other option...my estrogen is already extremely low and I have osteoporosis but they are still recommending letrozole...really don't want to hurt my body more

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Profile picture for she55 @she55

@karenschmitt hi Karen I had terrible joint pains afterletrozole prescribed in 2018. My breast cancer was caught early had 15 sessions of radiotherapy. I told my consultant I had no quality ty of life so stopped the drug. I have rheumatoid arthritis according to my rheumatologist be,cause, of the drug!!!!!!! Who knows if I would have got other.wise seems a coincidence. Hope you can make a good decision for you

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@she55 what is radiotherapy

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Profile picture for karenschmitt @karenschmitt

@karenzm
Disclaimer first: I am 69 and am just 6 months in on my cancer journey.
I had extreme side effects and am concerned about heart and bone health from Letrozole so I reduced dose to every other day after reading a NIH study.
I also started working with a Functional Medicine Doc who is giving me testosterone pellets (that include an AI). He also gave me a DIM supplement to remove any estrogen metabolites. Testing 6 weeks out are good, and I feel almost normal again!

Jump to this post

@karenschmitt wish i could find a functional doctor that takes insurance...tried a few free consults but so expensive.

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Profile picture for richandjanice @richandjanice

Is there any other option...my estrogen is already extremely low and I have osteoporosis but they are still recommending letrozole...really don't want to hurt my body more

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@richandjanice I was diagnosed at 72 with stage 1 ILC & I had weak bones already. I was hesitant to take any blockers so my oncologist prescribed a half-dose (10mg) of Tamoxifen which helps protect bones but with fewer side effects. I started it Jan. 1st & am doing fine so far! Just a thought.

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Profile picture for richandjanice @richandjanice

@she55 what is radiotherapy

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@richandjanice
I believe that is radiation.

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