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How did you wean off or stop Anastrozole? Any problems?

Posted by wabbit9 @wabbit9, Jul 6, 2023

Anyone have any problems?

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Chris, Volunteer Mentor | @auntieoakley | Jul 9, 2023

I stopped after 10 years and frankly never noticed a difference. I had taken tamoxifen for 5 and then anastrozole and maybe the job they did was done.

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Gini Pariseau | @ginip | Jul 10, 2023
In reply to @windyshores "I would expect there would be no side effects to stopping. The body probably adjusts naturally..." + (show)
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I would expect there would be no side effects to stopping. The body probably adjusts naturally by slowly restoring estrogen produced by the adrenals. My doc did not mention any weaning. I am so fragile and reactive that I did it just in case but I feel sure, from my doc, that it was not necessary! I do miss the protection though the Breast Cancer Index test told me I had no further benefit after 5 years.

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Yes! The Breast Cancer Index test was a very helpful tool in making decisions!

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wabbit9 | @wabbit9 | Jul 10, 2023
In reply to @windyshores "I actually did taper down. Noone told me to. I did it quickly. No problems. It..." + (show)
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I actually did taper down. Noone told me to. I did it quickly. No problems. It may have been fine to just stop.

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I have been on it for 5 years and am so sick of these miserable hot flashes! Mammograms clean.
So I'm tapering off myself before I see my Dr in Sept. Wish me luck...

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wabbit9 | @wabbit9 | Jul 10, 2023
In reply to @ginip "Yes! The Breast Cancer Index test was a very helpful tool in making decisions!" + (show)
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Yes! The Breast Cancer Index test was a very helpful tool in making decisions!

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I can't find any reference to it on Medline plus or Mayo clinic. Makes me question its validity.???

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Chris, Volunteer Mentor | @auntieoakley | Jul 10, 2023
In reply to @wabbit9 "I can't find any reference to it on Medline plus or Mayo clinic. Makes me question..." + (show)
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I can't find any reference to it on Medline plus or Mayo clinic. Makes me question its validity.???

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No need to question the validity of this test.
Here is a link to guidelines and an understanding of it.
https://www.cancernetwork.com/view/nccn-now-recommends-breast-cancer-index-for-predicting-benefit-from-extended-endocrine-therapy
But if you are tapering off with an expectation of the hot flashes, I just want to tell you I got a mean surprise. I have been off for 3 or 4 years and the hot flashes did not subside. It could be all about timing and all that but I will be curious to hear if it is different for you.
Have you talked to your doctor about this test, or about the hot flashes?

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micheleandrew | @micheleandrew | Jul 10, 2023
In reply to @ginip "I got as much feedback from medical advisors in stopping taking Anastrozole as I did starting..." + (show)
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I got as much feedback from medical advisors in stopping taking Anastrozole as I did starting it - Not much. I felt like I got the same info that an adult gives a child - what is going on is no big deal and offer a bandaid (Tylenol and Bengay). In their effort to get us to the 5 year plus goal, our ability to analyze and determine what is best for our added quality of life consideration is insignificant or at the very best of limited consideration. It is a hard and lonely decision to make and not made casually.

Having said that each of us experience some form of side effect(s) that bring us to the point of deciding not to take Anastrozole. My stop date was April 3, 2023. Many of the more manageable side effects stopped within a couple of weeks. However my most problematic side effects (brain fog and muscle/joint knee pain) continued which caused me confusion and concern. My research gave me a very welcomed perspective that said these particular side effects can take 2-3 months to recover. I am so happy to say i am sharing this comment feeling relieved of these last two side effects and celebrating g every day.

I found side effects are associated with starting on Anastrozole. When you stop taking it you experience the recovery at different instances. I would not call those side effects. It is more the timeframe of recovery.
I want to emphasize the burden of arriving at this decision. I don’t think any of us make it casually. In the end I would hope that pharmaceutical companies and medical prescribers will, going forward, consider that we hopeful users have their quality of life as a reasonable side effect to mention up front!

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Thank you for your thoughtful comment. I am struggling with side effects (I think) - brain fog, fatigue and the joint pain/stiffness is manageable. It's the cognitive and psychological (mood) that I'm trying to figure out if it's the anastrozole or something else. I've been on it now for 2.5 years. Sitting still at my desk, working is very hard - I feel like jumping out of my skin, difficulty focusing. When I'm moving in my garden, walking - I feel more like myself. Thank you for sharing, I feel like my Dr. has led me to believe that these SE's should improve over time.

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wabbit9 | @wabbit9 | Jul 10, 2023
In reply to @auntieoakley "No need to question the validity of this test. Here is a link to guidelines and..." + (show)
Profile picture for Chris, Volunteer Mentor @auntieoakley

No need to question the validity of this test.
Here is a link to guidelines and an understanding of it.
https://www.cancernetwork.com/view/nccn-now-recommends-breast-cancer-index-for-predicting-benefit-from-extended-endocrine-therapy
But if you are tapering off with an expectation of the hot flashes, I just want to tell you I got a mean surprise. I have been off for 3 or 4 years and the hot flashes did not subside. It could be all about timing and all that but I will be curious to hear if it is different for you.
Have you talked to your doctor about this test, or about the hot flashes?

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Thank you! I won't be seeing my Dr until Sept. I'll discuss it then.
Your link is convincing.
Thanks again.

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windyshores | @windyshores | Jul 11, 2023
In reply to @wabbit9 "I can't find any reference to it on Medline plus or Mayo clinic. Makes me question..." + (show)
Profile picture for wabbit9 @wabbit9

I can't find any reference to it on Medline plus or Mayo clinic. Makes me question its validity.???

Jump to this post

@wabbit9 As @auntioakley wrote, the Breast Cancer Index is now part of the NCCN guidelines, like the Oncotype.

I learned of it from breastcancer.org from posters I trust, and my oncologist at the time had not heard of it. Her comment to me was "Now I plan on using this for my other patients." Presumably it is part of many oncology practices now that it has been studied and included in the guidelines.

I had wanted to do 7 years because I read that 7 is as good as 10. I miss the feeling of being protected but I am 8 1/2 years out now.

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wabbit9 | @wabbit9 | Jul 11, 2023
In reply to @auntieoakley "No need to question the validity of this test. Here is a link to guidelines and..." + (show)
Profile picture for Chris, Volunteer Mentor @auntieoakley

No need to question the validity of this test.
Here is a link to guidelines and an understanding of it.
https://www.cancernetwork.com/view/nccn-now-recommends-breast-cancer-index-for-predicting-benefit-from-extended-endocrine-therapy
But if you are tapering off with an expectation of the hot flashes, I just want to tell you I got a mean surprise. I have been off for 3 or 4 years and the hot flashes did not subside. It could be all about timing and all that but I will be curious to hear if it is different for you.
Have you talked to your doctor about this test, or about the hot flashes?

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I am 80 years old. How old are you?
Could your age be influencing your continued hot flashes?
I'm really hoping mine disappear!

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1 reply
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Chris, Volunteer Mentor | @auntieoakley | Jul 11, 2023
In reply to @wabbit9 "I am 80 years old. How old are you? Could your age be influencing your continued..." + (show)
Profile picture for wabbit9 @wabbit9

I am 80 years old. How old are you?
Could your age be influencing your continued hot flashes?
I'm really hoping mine disappear!

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I had my ovaries out at 38 after chemo and before radiation. The came 5 years of tamoxifen and 10 years of anastrozole. The long answer is I am not yet 60, and I am not sure if I would still be having ungodly hot flashes without all of that. I am still burning up all day every day and half the night.
Did you have hot flashes before you started endocrine therapy?

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