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 callalloo @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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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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Profile picture for Chris, Volunteer Mentor @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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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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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/

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Profile picture for rlsdjt @rlsdjt

I am almost 63 and have been on Anastrozole for approx 6 weeks prior to my surgery, I am now 4 weeks out from surgery and having heart racing issues between 70-132. My normal heart rate is in the 60's. Now, I am basically doing nothing but sitting and I am NOT a sitter. Prior to surgery I walked 3 miles per day and am a speed walker, now I am strolling a short distance, then have to sit down due to my heart rate going so high. The only thing I can think of that could be causing this is possibly that prescription I was on. I am currently wearing a 48 hour heart monitor and am very concerned. So, has anyone else had this same trouble from the Anastrozole and now that I have been off of it for 11 days is this heart issue going to go away or am I going to live with this for the rest of my life. I was also having memory issues and joint pain from the drug.

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Thankfully there are quite a few choices of hormone therapy, I am sorry you have struggled on Anastrazole. There are quite a few folks here who have done well on a second or third choice. Usually after a break to allow the side effects to subside.
I noticed you took the drug for 6 weeks then stopped after surgery, are you 11 days out from surgery?
Has your doctor suggested another medication to try?

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Profile picture for rlsdjt @rlsdjt

I am almost 63 and have been on Anastrozole for approx 6 weeks prior to my surgery, I am now 4 weeks out from surgery and having heart racing issues between 70-132. My normal heart rate is in the 60's. Now, I am basically doing nothing but sitting and I am NOT a sitter. Prior to surgery I walked 3 miles per day and am a speed walker, now I am strolling a short distance, then have to sit down due to my heart rate going so high. The only thing I can think of that could be causing this is possibly that prescription I was on. I am currently wearing a 48 hour heart monitor and am very concerned. So, has anyone else had this same trouble from the Anastrozole and now that I have been off of it for 11 days is this heart issue going to go away or am I going to live with this for the rest of my life. I was also having memory issues and joint pain from the drug.

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It is possible the heart rate go up from med, even without physical activities, including
stress, weather conditions, food, overwhelmed , etc.
I am 82, reasonably active, have paroxysmal arrhythmia and increased heart rate for years , that was under control with med.
After bilateral lumpectomy a year ago I couldn’t stabilized the HR by myself, went to ER, where it was normalized with metoprolol.
Therefore, out of fear for arrhythmia , and heart problem I refused any radiation and/ or chemo after surgery .
I am taking now 1/2 of Tamoxifen for cancer reoccurrence prevention and watch the possible ( hopefully not) side effects.
Since the Tamoxifen is depressing the estrogen the side effects ,as hot flushes , ovarian problem could occurred .
And my chronic UTI is worsened.
But again we have to weight pros and cons of the different med side effect .

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Profile picture for batm @batm

I was only on Arimidex for about a month, the side effects were too much; also experienced an increased heart rate. My resting heart rate should be 60-70, its been floating between 83 and 103. Have no history of heart issues, no family history either. Echo was fine, EKG fine, bp fine, bloodwork fine. Seems coincidental that I’m feeling in now. Anyone else have any heart issues during or after Arimidex?? I’m not willing to try any other AI’s until this is resolved, cardiologist agrees.

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I am almost 63 and have been on Anastrozole for approx 6 weeks prior to my surgery, I am now 4 weeks out from surgery and having heart racing issues between 70-132. My normal heart rate is in the 60's. Now, I am basically doing nothing but sitting and I am NOT a sitter. Prior to surgery I walked 3 miles per day and am a speed walker, now I am strolling a short distance, then have to sit down due to my heart rate going so high. The only thing I can think of that could be causing this is possibly that prescription I was on. I am currently wearing a 48 hour heart monitor and am very concerned. So, has anyone else had this same trouble from the Anastrozole and now that I have been off of it for 11 days is this heart issue going to go away or am I going to live with this for the rest of my life. I was also having memory issues and joint pain from the drug.

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Profile picture for pjsfla @pjsfla

TRUTH ! Agree w the above post " I don’t think any of these drugs are free of some kind of side effects for most of us. We just need to find the one that’s has the least side effects for each of is individually. " So many different AIs to choose from , seems to be a dr's preference, or an individual reaction preference . Cancer has taught me we are all so different . Find what works for you , have confidence in that , and at the least, may the placebo effect positively boost you ! HUGS.

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There are three different AI's, and within those categories, there are different manufacturers of generics, as well as the original brand name. I switched from generic anastrazole to generic letrozole to brand name Femara and then stuck with that for 5 years.

My attitude, with serious cancer or serious osteoporosis, is to do everything I possibly can to tolerate side effects so that I can get the benefit of the meds. With cancer meds, that meant, mainly, for me, movement for 45 minutes/day. Tai chi and walking. Everyone is different.

I think we need to be careful making generalizations about these meds because each of us has a different cancer risk of recurrence, different co-morbidities, different ages, and different motivations. It is possible that many non-compliant patients had DCIS or very low risk Oncotypes.

Mine was grade 3, with LVI. For 5 years, I would have prioritized quantity of life over quality, so I had the best chance of being around for my kids. Luckily Femara did not really affect my quality of life.

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Profile picture for lisman1408 @lisman1408

I switched from Anastrozole to Tomoxifin because of memory loss with Anastrozole. Unfortunately shortly after starting on Tomoxifin, I broke out in severe hives. It appears that I’m allergic to something in Tomoxifin. My doctor then switched me to Exemestane. It’s better for me, but I still have some minor side effects. I don’t think any of these drugs are free of some kind of side effects for most of us. We just need to find the one that’s has the least side effects for each of is individually. It’s certainly not pleasant, but I suppose it’s better than cancer…

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TRUTH ! Agree w the above post " I don’t think any of these drugs are free of some kind of side effects for most of us. We just need to find the one that’s has the least side effects for each of is individually. " So many different AIs to choose from , seems to be a dr's preference, or an individual reaction preference . Cancer has taught me we are all so different . Find what works for you , have confidence in that , and at the least, may the placebo effect positively boost you ! HUGS.

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