1. < Breast Cancer

stop the madness

Posted by jeaniebean @jeaniebean, Nov 22, 2020

I just stopped taking my AIs. I just cannot take it anymore. In 3 days I can walk again, I have clear brain thinking, my fingers dont ache, my bones dont ache, and I am not afraid anymore......

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 7, 2022
In reply to @windyshores "More people with side effects tend to post on forums, which scares us all. I am..." + (show)
@windyshores

More people with side effects tend to post on forums, which scares us all. I am especially sensitive to medications. I tried anastrazole generic, letrozole generic and then ended up with brand name Femara. My doc also said I could take it alternate days. True compliance is telling doctors about our side effects and working with them to try to reduce them. At least around the edges. I would endure significant side effects to reduce my risk (and am enduring significant side effects on Tymlos for bones) but I have kids who aren't settled yet.

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You are so right! By communicating with your doctors there are often different ways to get good treatment!

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 8, 2022

@callalloo - I can’t believe myself it has been 30 years. There has been a lot of anxiety- especially at the anniversaries and when I had mammograms.
Chemo was bad- it threw me into immediate menopause and has caused autoimmune GI illness that I’m dealing with now due to severe GI reaction with each chemo.

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lisajoann | @lisajoann | Aug 8, 2022
In reply to @windyshores "More people with side effects tend to post on forums, which scares us all. I am..." + (show)
@windyshores

More people with side effects tend to post on forums, which scares us all. I am especially sensitive to medications. I tried anastrazole generic, letrozole generic and then ended up with brand name Femara. My doc also said I could take it alternate days. True compliance is telling doctors about our side effects and working with them to try to reduce them. At least around the edges. I would endure significant side effects to reduce my risk (and am enduring significant side effects on Tymlos for bones) but I have kids who aren't settled yet.

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I agree 100%!
That’s why I posted positive … on my 10th year of meds… 5 years tamoxifen, and changed to Arimidex 6th year… I finish up in April ‘23!
I am high risk… I did all I could do!
Praying after I go off I continue to stay well… it’s a little scary! I had hot flashes at the beginning with tamoxifen… I keep active and walk a lot. I also eat well and pray always!
I feel these drugs kept me alive! My bones are okay… little sore from time to time. Celebrating 60 this month and planning g on many more birthdays to come!
I understand everyone is different… not saying everyone can endure, but for those on the fence… don’t give up to easily. These drugs DO SAVE LIVES♥️ I am proof!
No arguments PLEASE!
This is being posted to let others know EVERYONE IS DIFFERENT! There are happy endings using meds!

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sequoia | @sequoia | Aug 9, 2022
In reply to @cctoo "Update: ultrasound found enlarged lymph node..biopsy said recurring bc....blood tests all normal scans too..Ser oncologist on..." + (show)
@cctoo

Update: ultrasound found enlarged lymph node..biopsy said recurring bc....blood tests all normal scans too..Ser oncologist on Aug 11.

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@cctoo prayers to you.

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sandyjr | @sandyjr | Aug 9, 2022
In reply to @callalloo "I read everything that I could find on anastrozole, including hours spent on Google Scholar, and..." + (show)
@callalloo

I read everything that I could find on anastrozole, including hours spent on Google Scholar, and haven't seen anxiety mentioned as a side effect. Anxiety is sometimes triggered by menopause, e.g., lowering estrogen levels, so maybe a consequence of that effect,, but that tends to decline. General anxiety levels certainly increased from covid, lockdown, political polarity, inflation, etc.

And you're dealing with more than one issue personally so that's a challenge too. I'd review the meds you're taking with your PCP and maybe pharmacist as well to see if there are any contraindications or anxiety side effects. But also realize that you've survived a lot and sometimes the body experiences delayed anxiety as a kind of relief and safety valve. If that sounds possibly explanative, you can put it in perspective and gain distance from it, while doing a lot of self-support stuff like meditating, nature walks, drawing, and other activities to kind of stay grounded in the present that you can control. It sounds simplistic but can be empowering.

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The info that came with my prescription states it and this info from the computer refers to it under nervousness which when you click on it, it goes to anxiety....https://www.drugs.com/mtm/anastrozole.html. I do get plenty of exercise and eat well. I have been on this drug 4+ years and am finding that I seem to be getting more anxious than what I would consider as normal. I am just curious as to if others are noticing this.

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lisajoann | @lisajoann | Aug 10, 2022

I think you must decide what is good for you… you will not know if it is making you anxious unless you stop… then you will question whether stopping is causing anxiety because you are thinking recurrence.
It’s a tough choice… you can only decide.
I guess you have to make the decision on what is more important to you if you find it is in fact the meds that make you anxious.
Sending positive vibes your way♥️♥️♥️

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1 reply
ellerbracke | @ellerbracke | Aug 10, 2022

After reading all the comments about side effects of various estrogen blockers, I want to add some encouraging news as well. I have been taking Letrozole now for about 14 months, and so far, other than some initial moderate joint pain in my hips during the first 4 weeks, have experienced no side effects whatsoever. No hot flashes, pains, stiffness, head shaking, trigger fingers, mental impairment. Just saying: some of us are lucky - I did not realize what I could have had to deal with. Anxiety: some, but not because of medication. Just general worry about cancer coming back, somewhere, sometime.

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anjalima | @anjalima | Aug 11, 2022
In reply to @cctoo "Update: ultrasound found enlarged lymph node..biopsy said recurring bc....blood tests all normal scans too..Ser oncologist on..." + (show)
@cctoo

Update: ultrasound found enlarged lymph node..biopsy said recurring bc....blood tests all normal scans too..Ser oncologist on Aug 11.

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Sorry to hear this update; we all have this possibility lurking ( in varying measure) in our awareness. Sending best wishes for a good resolution. Warm hugs.

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cctoo. Catherine Crowley | @cctoo | Aug 11, 2022

Thank you daw oncologist today and scan and blood tests good he said so only need simple surgery to remove node and See if sny more nodes have cancrr.....no.drugs!!!

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cctoo. Catherine Crowley | @cctoo | Aug 11, 2022
In reply to @lisajoann "I think you must decide what is good for you… you will not know if it..." + (show)
@lisajoann

I think you must decide what is good for you… you will not know if it is making you anxious unless you stop… then you will question whether stopping is causing anxiety because you are thinking recurrence.
It’s a tough choice… you can only decide.
I guess you have to make the decision on what is more important to you if you find it is in fact the meds that make you anxious.
Sending positive vibes your way♥️♥️♥️

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How do we know that als....ex. Anastrasole, etc., prevent recurrence? I have heard they not always do...same with chemo and radiation.

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