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.

You had a recurrent IDC of L breast now...22 years after a mastectomy and now you are 70?
What is your treatment plan, going forward, now with your left breast?
I more than hear you about the low level headaches. I am living it. I am taking anastrozole.
And you had the h/a's with tamoxifen, B/P elevated presently and now you stopped?
Your oncotype score is very good...mine was 14. And I am 70 too.
No radiation/chemo for me either. Just the AI. A rock and a hard place.

REPLY
Profile picture for Rubyslippers @triciaot

On 20 mg Tamoxifen, the first few weeks I had warm flashes and more moody. My eyebrows thought they might want to be a unibrow 🙂 Extra brow hair grew more in between my brows (not a lot) and some above my natural brow. As the body adjusts to the change of hormones, it leans toward a higher level of testosterone - ergo the unibrow. It was easily tweezed away. By 6 weeks, I seemed to settle into difficulty with thermal regulation- no hot flashes, but if I overheated, like in a hot car, or standing in Texas summer heat, my body took a longer time to cool off. My hair thinned some. I was more likely to cry at sad movies. I do have a slight vaginal discharge, a thin milky-like substance. It is caused by an pH imbalance from the tamoxifen, it does not bother me. I have not had any vaginal infections. I do not douche.

Before the cancer, I had vaginal dryness, vaginal atrophy, and osteoporosis. After taking tamoxifen, the vaginal issues were reversed, no atrophy. Tamoxifen can act as an estrogen agonist (promotes estrogen like action) in other parts of the body outside of the breasts. With taking Reclast my DEXA scores at the hips have improved to osteopenia, my spine has improved but is at -2.5.

At 3 months on tamoxifen I started having headaches 24/7. Not migraines. My regular doctor went through every possibility for headaches, found nothing, and I had a brain MRI. The radiology report said they found nothing remarkable (thank you very much!!) But that was good news. I saw the neurologist on staff at the cancer center and the conclusion was that the tamoxifen was causing the headaches. I changed to 5 mg, and the headaches have gone away.
Interestingly, I’ve noticed more head hair growing in. I have this fringe most noticeable in front of my ears, about 5 inches long. That’s about the right length for the time I switched from 20 to 5 mg - when maybe the higher testosterone dropped.
I have not had any bone or joint pain on tamoxifen. I started on tamoxifen at age 68, three years ago.

Jump to this post

Thanks for your details of the experience! Every drug I'm put on seems to be too strong & cause some annoying side effect, some debilitating like joint & muscle pain, the worst being affecting my BP severely. I'm coming to realize at 76 that my quality of life is very important & I have to advocate for myself, not just go along with the cancer Doc's adherence to "FDA" protocols.
Thanks again,
Patty

REPLY
Profile picture for briarrose @briarrose

There is so much information here, it's hard for me to process everything.
I had stage 1 and lla plus 2 areas of ductal hyperplasia all in both breasts. Had a bilateral mastectomy in May 2025. Started Anastrozole 1 mg. in June. Just had my bone density test. At age 68 all was normal, now at age 70 I have osteopenia in my left hip. Is it the AI after only 3 months or a natural occurrence?
I have headaches daily. Very annoying. B/P systolic can not get below 140 despite being on 3 B/P medications and 2 recent dose increases. Oncotype was 14, no chemo indicated, no radiation. I am also a heart patient and this drug surely is potentially dangerous with my heart condition but my cardiologist gave the go ahead for me to go on it. Just some joint aches, nothing major. Some skin itching & redness also. The headaches are my main issue plus watching my blood pressure. I thought Tamoxifen was only for pre-menopausal women. Is this an option for me? My breast oncologist said no 3 months ago. Will be seeing her next week. Lots of thoughts here, but confused as to the way to go. This is my first post-op visit with her since starting the AI. Anything I should focus on during my visit with her? Thanks so much...

Jump to this post

@briarrose
I had Letrozole for few months. First came the aura headache every week along with dull pain in the head, then a full blown migraine that woke me up at night and lasted a few days. Now I switched back to Exemestane which gives me mild petechiae. I don't think all the side effects come from lower estrogen. They could be the reactions to inactive ingredients in the drugs. Try to see if switching to Exemestane would help. I can put up with joints/muscles pain, but headaches are terrible! You're a tough one. I can't stand headache every day. I only take Exemestane every other day to prevent severe petechiae. I hope once my body is used to the drug, the petechiae will go away and I can take it every day. Best wishes to you.

REPLY
Profile picture for myoga @myoga

@briarrose
I had Letrozole for few months. First came the aura headache every week along with dull pain in the head, then a full blown migraine that woke me up at night and lasted a few days. Now I switched back to Exemestane which gives me mild petechiae. I don't think all the side effects come from lower estrogen. They could be the reactions to inactive ingredients in the drugs. Try to see if switching to Exemestane would help. I can put up with joints/muscles pain, but headaches are terrible! You're a tough one. I can't stand headache every day. I only take Exemestane every other day to prevent severe petechiae. I hope once my body is used to the drug, the petechiae will go away and I can take it every day. Best wishes to you.

Jump to this post

@briarrose
By the way, check out this thread from Mayo Clinic Connect. "Timing of HRT, anastrozole - taking day or night?" Lots of recommendations on taking Allergra to help ease the pain. I used it yesterday and this morning I noticed less petechiae. Not sure if Allergra helps, but I decided to give it a chance.

REPLY
Profile picture for sparklegram @sparklegram

I'm following this thread. I took Arimidex for a year and a half and had sever side effects I switched to Exemestane and also had side effects. I'm now taking Tamoxifen and these have their own set! I'm seriously thinking of going back to Exemestane. Not sure yet. I'm waiting for some lab test results.

Jump to this post

Hi Sparklegram,
Are you on Exemestane now? I was on Letrozole for 2 months with severe side effects and switched to Exemestane. Only on week 3 and having stomach issues. No sure what to do and wondered how you were doing.

REPLY
Profile picture for jeaniebean @jeaniebean

I took them for 6 months and the side effects were crippling. It has been 11 weeks now and I am clear headed, sleeping better, still have stiff joints and fingers not bending at all, but those are also side effects of radiation. I now take DIM plus, calcium, Vd3, selenium, Ve, garlic, and an immunotherapy vitamin. Have felt 80% better and improving every day. Went for mammo (1 yr) and ultrasound and should hear from Dr tomorrow. I will not put that poison in my body. It causes too many other issues. The starvation of all estrogen to the brain in that short time has now caused head tremors. No way.

Jump to this post

Hi jeaniebean,
Are you still in remission and off the aromatase Inhibitors?
Asking for myself as I have horrific side effects and am considering DIM and other supplements. Thank you. Mine was invasive lobular grade 3, stage 2B.

REPLY

I just do not understand the science of these pulls that cause terrible side effects!!!!!!!!!!!! what is the proof that cancer does not come back from these horror pills which cause more problems! I am stage Lumina 1A
Oncoscore (3)!!!!!! Slow growing tumor no lymph nodes I may just do radiation and skip these horror sounding pills! I start radiation this week

REPLY
Profile picture for brooklyn22 @brooklyn22

I just do not understand the science of these pulls that cause terrible side effects!!!!!!!!!!!! what is the proof that cancer does not come back from these horror pills which cause more problems! I am stage Lumina 1A
Oncoscore (3)!!!!!! Slow growing tumor no lymph nodes I may just do radiation and skip these horror sounding pills! I start radiation this week

Jump to this post

AI inhibitors inhibit the bodies ability to produce estrogen. People who have had estrogen positive cancers are those for whom an AI inhibitor can help prevent a recurrence of the hormone positive cancer. Certainly there are people who do not react well to medication’s. There are also people who have little or no issues with medication’s.

REPLY

O my! What a dilemma we are in and my situation is definitely not good either.
On anastrozole 1 mg. daily since June 2025. Since then, my systolic blood pressure has never gone below 140...ranges are 140-152. The diastolic (bottom #) is good. These numbers are not severe but not me either. I am usually always below 130. During this time I have had 3 dose increases in my blood pressure medications and, so far, the increases are not bringing it down. Not to mention the low level (sometimes high) daily headache. I have also noted my platelet count is gradually decreasing. My high was 197 in June 2023 & over the past 3 months went done to 142 which is an abnormal result. My breast oncologist brushed this off...simply saying "platelet counts always fluctuate" as well as my cardiologist. He said "the numbers are OK, you don't need to see hematology".
I also have ischemic heart disease which is NOT a good thing with these AIs. Small possibility of a heart attack or stroke. My cancer was "caught early" but that's meaningless for a re-occurrence. Oncotype 14, no radiation or chemo. Bilateral mastectomy (cancer in both breasts). 1 positive lymph node out of 12. My blood pressure and headaches are my main concern. Thinking of exemestane. I am already on Claritin (cetirizine) for a year for allergies. I could live with the petechiae vs. H/A's and increased B/P. But my oncologist said "all AIs have side effects, if you want it, I can change the medication". I said "I will give it more time"...not knowing what I will experience with exemestane. Maybe I am just going in circles here...any thoughts BC support team?

REPLY
Profile picture for brooklyn22 @brooklyn22

I just do not understand the science of these pulls that cause terrible side effects!!!!!!!!!!!! what is the proof that cancer does not come back from these horror pills which cause more problems! I am stage Lumina 1A
Oncoscore (3)!!!!!! Slow growing tumor no lymph nodes I may just do radiation and skip these horror sounding pills! I start radiation this week

Jump to this post

It is possible that you'll have no side effects on aromatase inhibitors. People react differently, and often on a chat the folks with problems post, which makes sense. But that is not the whole view. I've been on letrozole for three years with zero side effects and my bone density is normal. Certainly bad side effects can be intolerable, but don't assume you'll have these side effects. I told my oncologist initially I'd take it and go off it if the side effects were unbearable. And it has been fine. Actually better than fine, as I've outlived my original prognosis.

REPLY
Please sign in or register to post a reply.