Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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Profile picture for trixie1313 @trixie1313

@brinacarmen
I was started on anastrozole, then letrozole, and finally exemestane. Everyone reacts differently so what was a problem for me may not be a problem for you.

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That's exactly right! About 56% of women can tolerate them, the remainder are lost to followup. Which is unfortunate as we can't accurately know if they did or did not have a recurrence of their cancer.

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Also, Turkey Tail mushroom (PSK is the active agent which is prescribed in Japan and the Japanese have a 4% lower mortality rate from cancer than we do in the US...Chrysin, DIM, Zinc, Grape Seed Extract etc. are all natural AI's.

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Yes I made the change last week from the AI's to natural AI's which my naturopathic MD prescribed. It's a long list of supplements that all block aromatase, but my side effects to all three AI's made it intolerable for me.

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Profile picture for brinacarmen @brinacarmen

Can you tell me what the third one is ? Tamoxifen didn’t like me at all

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@brinacarmen
I was started on anastrozole, then letrozole, and finally exemestane. Everyone reacts differently so what was a problem for me may not be a problem for you.

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Profile picture for Dee Chase @deechase

Aromatase inhibitor - essentially means it's a hormone blocker

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Thank you !!!

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Profile picture for brinacarmen @brinacarmen

I have another dumb question. What does Al stand for or is it A1?

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Aromatase inhibitor - essentially means it's a hormone blocker

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Profile picture for brinacarmen @brinacarmen

Can you tell me what the third one is ? Tamoxifen didn’t like me at all

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I have another dumb question. What does Al stand for or is it A1?

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Profile picture for trixie1313 @trixie1313

@crazydaisy
Five years? Nope...Unfortunately, I'm on the 10-year plan due to the neuroendocrine cancer of the breast. What I have found though is not to settle for problems with AIs, but to move on to another one if the first or even the second don't work out for you. I was so depressed with the pain and all the other side effects of the first one that I have been pleasantly surprised by the third one I tried and have been doing fairly well on that for a year now.

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Can you tell me what the third one is ? Tamoxifen didn’t like me at all

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Profile picture for magmcdonah2 @magmcdonah2

AI’s are more effective in post menopausal women. I’m on the border so starting with Tamoxifen and following my hormones to switch over to AI. Reading the side effects is overwhelming.

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Reading the side effects of any medicine can be overwhelming. Many of us did fine on AI's. My only tip is to walk longer than 20 minutes. My doc said she heard that from many people. Pain at first and then it gets better if you walk longer. I finished my time on an AI and almost feel I felt better while on it! But honestly it just means I am that much older 🙂

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Profile picture for Chris, Volunteer Mentor @auntieoakley

Try not to overwhelm yourself with thinking about the side effects. Remember there are more people who have little to no side effects than there are people who have severe side effects. You know what they say about an unhappy customer telling more people than a happy customer does. Same is true here. I have always had hot flashes, sometimes excessive, but do able. I now have to deal with the inevitable bone loss from very early menopause. But my eye is firmly on the prize and I am still here to complain about it. I am one week shy of 18 years from original diagnosis. If you do start to have troubles, you can always come here and talk about it.
Can you say more about your cancer journey? It sounds like you might be younger than most, if you are just shy of menopause. Are you a young survivor?

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I’m 58, but because of my exogenous hormone use they weren’t quite ready to declare me menopausal even though my labs look that way. So repeating labs in few months to confirm. I took my first dose of Tamoxifen this morning, I’m trying to not read all the negative side effects. Thank you.

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