Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@traci999

With all respect to those you know that had no problems, those of us, including myself have had horrible side effects. I was not the same person, joints hurt all the time, no sleep etc.
I am off Anastrozole for two weeks and then we will try another one..... I wish everyone the best but some have a hard journey with AI's.

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Hope you can try a different manufacturer or even brand name. I am struggling with Evenity which others sail through. It isn't that I don't understand, believe me. And I
lost bone on Femara (doc did not want to prescribe Reclast due to afib).

But in the context of cancer, it is sometimes hard to see people scared off by posts online from even trying AI's, so I just post for balance. I did not deny the suffering and said I respect your experiences. I just hope people will at least try.

Good luck with your treatment and I hope things improve whether you try another one or go off entirely.

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@windyshores

Hope you can try a different manufacturer or even brand name. I am struggling with Evenity which others sail through. It isn't that I don't understand, believe me. And I
lost bone on Femara (doc did not want to prescribe Reclast due to afib).

But in the context of cancer, it is sometimes hard to see people scared off by posts online from even trying AI's, so I just post for balance. I did not deny the suffering and said I respect your experiences. I just hope people will at least try.

Good luck with your treatment and I hope things improve whether you try another one or go off entirely.

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Thank you so much for your post. I don't mean to scare people, but I guess I probably do but I honestly don't mean too. I guess my experience was not what I was thinking it would be. I am 55 and was thinking I would breeze thru this, and it didn't work like that for me. I go this next Friday to my oncologist so prayers he recommends one I can take. I wish everyone who has ever been thru this horrible disease the best and thank you for your kind words.

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@windyshores

@vkroger what was your ER score from pathology, and your PR score?

These meds reduce estradiol below detectable levels, by eliminating estradiol produced in the adrenals.

The drug insert for Femara (letrozole) states that a 20% dose achieves that undetectable level. However I am not sure what difference the dose makes and would love to see studies. To me, either estradiol/aromatase is suppressed or it isn't. Even with a 20% dose, if effective, we would have the same symptoms since the symptoms are from estrogen deprivation, right?

That said, try switching manufacturers or switching to a different AI. I ended up taking brand name Femara though at the end I found one generic I could tolerate.

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I’m ER 100% and PR 60%. I’m upset that women get the same dosage of medicine without blood work being done to 1) determine your baseline Estradiol level and 2) periodically check Estradiol levels after being on an AI. Seriously, isn’t monitoring numbers all about research? My Estradiol level is already the lowest in range at < 5, why should I take a full dose of any AI? Women need to question this theory. We are all different and should be treated like individuals … not treated with standard meds. That’s not fair to anyone.

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@vkroger

I’m ER 100% and PR 60%. I’m upset that women get the same dosage of medicine without blood work being done to 1) determine your baseline Estradiol level and 2) periodically check Estradiol levels after being on an AI. Seriously, isn’t monitoring numbers all about research? My Estradiol level is already the lowest in range at < 5, why should I take a full dose of any AI? Women need to question this theory. We are all different and should be treated like individuals … not treated with standard meds. That’s not fair to anyone.

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This comes up on this forum all the time and I ask every time: if the goal is reducing estradiol below detectable levels (and you may be well above that since testing stops at 5), what difference does dose make? if a 20% dose and a 100% dose both reduce estradiol below detectable levels, and the result is side effects from estrogen deprivation are the same, what difference does it make what dose we take? I actually asking the question. I don't see my oncologist anymore but if I did I would ask it.

ps great to have 100% estrogen score- the meds should work well according to what I have been told!

My oncologist told me I could take Femara alternate days. I never did, but that is one option. They tend not to suggest cutting pills due to inconsistency of dose and not sure if it is extended release. If not extended release, maybe your doc would let you do 1/2.

Some meds are weight-based and the company uses an average weight of, say, 150 (Evenity) and when dose does matter, that is a disservice to us small folks.

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@colleenyoung

Hi @tinalove, welcome to Connect.
You'll notice that I moved your message into the Breast Cancer group.

Anastrozole belongs to a class of drugs called aromatase inhibitors. You can find out more about them and what to expect here http://www.mayoclinic.org/tests-procedures/hormone-therapy-for-breast-cancer/basics/what-you-can-expect/prc-20015050 On the list of side effects of anastozole, hair loss is listed as an uncommon side effect.

It would be nice to get a first-hand experience for someone who has taken hormone therapy. I'm tagging @luladavis @maureenkarras and @lecase to see if they will join this discussion.

Maureen wrote a while back about side effects of exemestane, one of the other aromatase inhibitors https://connect.mayoclinic.org/discussion/dry-skin-red-itching-burning-and-peeling/ and Lecase asked about the pros and cons of anastrozole and tamoxifen. https://connect.mayoclinic.org/discussion/can-anyone-speak-to-the-proscons-of-arimidex-vs-tomoxifen-ive-been-on/

Tina, what kind of breast cancer did you have and what treatments? How are you doing?

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I have been taking exemestane along with zoladex and I have fatigue, brain fog, and pretty severe joint pain. I'm not sure which drug is causing the side effects.

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@traci999

With all respect to those you know that had no problems, those of us, including myself have had horrible side effects. I was not the same person, joints hurt all the time, no sleep etc.
I am off Anastrozole for two weeks and then we will try another one..... I wish everyone the best but some have a hard journey with AI's.

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Can you ask for a lower dose? The half life is 50 hours. Maybe every other c day?

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@vkroger

Can you ask for a lower dose? The half life is 50 hours. Maybe every other c day?

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I meet with my oncologist next Friday to discuss my options. I never thought of that so thanks I will ask.

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@traci999

I meet with my oncologist next Friday to discuss my options. I never thought of that so thanks I will ask.

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@traci999 alternate days was immediately offered to me by my oncologist and is apparently quite common. I am still not sure why side effects would be better if it works to suppress estrogen, but my doc did suggest it. I stayed with the full dose but it was always an option to skip a day between pills.

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@windyshores

@traci999 alternate days was immediately offered to me by my oncologist and is apparently quite common. I am still not sure why side effects would be better if it works to suppress estrogen, but my doc did suggest it. I stayed with the full dose but it was always an option to skip a day between pills.

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Thank you for this idea. I will mention it to my oncologist. I’m willing to try anything.

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@traci999

With all respect to those you know that had no problems, those of us, including myself have had horrible side effects. I was not the same person, joints hurt all the time, no sleep etc.
I am off Anastrozole for two weeks and then we will try another one..... I wish everyone the best but some have a hard journey with AI's.

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I agree. I’m struggling so bad. Joint pain. Hair loss. Hurt all over. Brain fog is horrible. Emotions. I don’t even recognize who I am anymore. They switched me to letrizole and I am not seeing much different at all. It’s horrible to have to just live this way.

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