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.

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

Tamoxifen doesn't actually decrease estrogen. It blocks estrogen receptors. In fact over time apparently it can increase serum estrogen!
https://pubmed.ncbi.nlm.nih.gov/9168075/

"Conclusions: Long-term tamoxifen therapy can be associated with increased serum levels of DHEA, E1, and E2. Elevated serum estrogens may explain tamoxifen's estrogenic effects and may represent a mechanism for the development of drug resistance."

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@auntieoakley

This was not meant to be adversarial, just informative. If you think my comment is not aligned with Mayo values, I apologize. I will report myself.
I just clicked on that link and it went to the research news page on breast cancer.org.
I am not nudging you to not share facts, I might be nudging you to either post the links as Colleen has asked on another page of all of us, or stick to personal experience.
I might be nudging this conversation to expand to include more than tests available for risk, and bone health, as I believe an expanded conversation encourages more people to post, not just more posts.

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I did post the links to three different studies citing the 50+% non-compliance rate fir women discontinuing anti-hormone therapy within the first 5 years. I don't see them here so don't know where they went. But it was requested that I provide the sources for that statistic, and I did, and if anyone wants more information, please message me privately.

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I tried a couple of aroma inhibitors, neither worked for me the side effects were terrible. I could barely get out of a chair I felt like I was a hundred years old yet I was 69 every muscle ached and I shuffled when I got out of my chair. My doctor gave me a third but I have to admit I didn’t take it. I looked at my risk and decided not to. It’s up to each of individual to decide what’s right for them no one can make that decision for them. I knew the stats but put my quality of life first. Good luck on what you decide.

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@callalloo

I did post the links to three different studies citing the 50+% non-compliance rate fir women discontinuing anti-hormone therapy within the first 5 years. I don't see them here so don't know where they went. But it was requested that I provide the sources for that statistic, and I did, and if anyone wants more information, please message me privately.

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I would appreciate if you put again the link of no compliance with 5 years anti estrogen treatment.
Thank you

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Just for balance, I will again say that I took letrozole for 5 years with little joint pain and found it very tolerable. I miss it, because it made me feel secure!

I am sorry for those who suffered on these meds but for others reading this forum, many of my friends also did 5 years relatively comfortably.

We all have different risks and have had different cancers and treatments. And some of us do want quantity of life versus quality to be around for our kids! So motivation varies.

I tried generic anastrazole first and reacted immediately to the ingredients. This is a sensitivity and different from a side effect over time. I switched to letrozole and then to brand name and was fine. Exercising 45 minutes minimum helped what few pains I had, but exercising for less than that tended not to help.

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@windyshores

Just for balance, I will again say that I took letrozole for 5 years with little joint pain and found it very tolerable. I miss it, because it made me feel secure!

I am sorry for those who suffered on these meds but for others reading this forum, many of my friends also did 5 years relatively comfortably.

We all have different risks and have had different cancers and treatments. And some of us do want quantity of life versus quality to be around for our kids! So motivation varies.

I tried generic anastrazole first and reacted immediately to the ingredients. This is a sensitivity and different from a side effect over time. I switched to letrozole and then to brand name and was fine. Exercising 45 minutes minimum helped what few pains I had, but exercising for less than that tended not to help.

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Thank you so much for posting. I took dose #3 last night of generic anastrozole last night and I’m terrified waiting for the side effects to begin. I had a lumpectomy and a re-excision in April and now face a mastectomy and recon-
struction on June 22-which is laughable-I had a spinal fusion one year ago to the date. It was good to hear a somewhat positive take on the meds. I just hope my hair doesn’t start getting thin. I know that’s vain, but it is what it is.

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@jaynep

Thank you so much for posting. I took dose #3 last night of generic anastrozole last night and I’m terrified waiting for the side effects to begin. I had a lumpectomy and a re-excision in April and now face a mastectomy and recon-
struction on June 22-which is laughable-I had a spinal fusion one year ago to the date. It was good to hear a somewhat positive take on the meds. I just hope my hair doesn’t start getting thin. I know that’s vain, but it is what it is.

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None of my friends had trouble with anastrazole. Forums are creating what you call "terror," because people with side effects post. I sympathize with them because I am sensitive and even intolerant of many meds.

Keep in mind that with this hormonal drug, it takes 7 days to reach steady state. And because side effects are mainly from hormonal changes, which I believe have different effects over time, I observed that side effects did evolve. But over a long period of time.

There are options to take a partial dose by alternating days. The Femara insert says that 20% of the normal dose is effective. My doc said I could take it every other day to reduce side effects. However I don't really understand how that could be, since if the med is effective enough to eliminate estrogen, the side effects would be the same, regardless of dose!

Anyway, I would try to focus on the positive benefits of anastrazole and the fact that many many women tolerate it just fine- with all due sympathy for those who don't.

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@monigue

I would appreciate if you put again the link of no compliance with 5 years anti estrogen treatment.
Thank you

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I'll send by the private message option in a few days. Just have to find them again. I don't want to clutter this thread or inadvertently start a new topic.

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@jaynep

Thank you so much for posting. I took dose #3 last night of generic anastrozole last night and I’m terrified waiting for the side effects to begin. I had a lumpectomy and a re-excision in April and now face a mastectomy and recon-
struction on June 22-which is laughable-I had a spinal fusion one year ago to the date. It was good to hear a somewhat positive take on the meds. I just hope my hair doesn’t start getting thin. I know that’s vain, but it is what it is.

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There’s nothing wrong with acknowledging your feelings. You should have seen the look on my surgeon’s face when I told her I would miss my hair more than my breasts. I ultimately did not need chemo, but I did have hair loss with the AI. A Swiffer in every bathroom and cleanest rooms for the last 5 years…

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@windyshores

None of my friends had trouble with anastrazole. Forums are creating what you call "terror," because people with side effects post. I sympathize with them because I am sensitive and even intolerant of many meds.

Keep in mind that with this hormonal drug, it takes 7 days to reach steady state. And because side effects are mainly from hormonal changes, which I believe have different effects over time, I observed that side effects did evolve. But over a long period of time.

There are options to take a partial dose by alternating days. The Femara insert says that 20% of the normal dose is effective. My doc said I could take it every other day to reduce side effects. However I don't really understand how that could be, since if the med is effective enough to eliminate estrogen, the side effects would be the same, regardless of dose!

Anyway, I would try to focus on the positive benefits of anastrazole and the fact that many many women tolerate it just fine- with all due sympathy for those who don't.

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I took tamoxifen for a number of months and felt its estrogenic effects almost immediately. Fear of possible resultant endometrial polyps or cancer or DVT scared me off the drug. I have been taking anastrozole for a few months and find the side effects less noticeable. For me it does seem to affect hair texture and may cause some insomnia and depression, although the latter may be more related to aging and having BC in the first place. I sometimes skip my dose and often contemplate quitting the drug, but for now I take the pill because I don't want to have to confront this disease ever again. Unfortunately it only reduces that probability by half. I would suggest that the younger you are the more important it is to take an estrogen blocking precaution if you are ER+ because BC is statistically more aggressive in young women and you have more years for possible recurrence.

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