Timing of aromatase inhibitors (AIs) - taking day or night?

@pktaylor59
Find another oncologist.
It’s absolutely inappropriate for the nurse to tell you that your cancer will come back if you don’t take one of the meds. It’s like asking a magic eight ball. The studies have shown that the 10 year survival rate is about 30% higher. That number is misleading. It’s based on the cohort of the total study population. It’s more complicated than the pharmaceutical industry makes it appear.
For example, if you have a personal overall 10% risk of dying from your breast cancer without taking any medications your overall risk with AIs is 7%. It’s a percentage of a percentage. I recommend Googling what the percentage rate truly means. True survival rates are so individual and personal (based on your stage, success of chemo, surgery, radiation etc.) that no one should believe that death or survival is inevitable with or without the meds.
My oncologist pushed Verzenio on me. The toxicity was life threatening. I stopped taking it after 10 days. I changed oncologists. My new oncologist was capable of comprehending the statistics. There was a 2% overall survival rate with the drug. But that number is based on only those patients who were not forced to stop the medication due to toxicity. So it makes the actual study statistics nearly invalid.
The quality of life issue is also very personal. Medical professionals often lean towards treatment regardless of toxicity. And we patients have every right to choose whether we are willing to allow a doctor to make that choice for us. I personally prefer to refuse to allow medical practitioners to choose how I live and die. I have been taking Anastrozole for 2.5 years. I’ve tried Exemestane — no difference.
I have taken four breaks of up to a month to manage my side effects. I feel terrible all the time and don’t get out or exercise enough. I now have osteoporosis (of course). I haven’t yet decided to stop the medication. But I am leaning towards stopping. The most ridiculous part of dealing with the side effects is all the specialists I see who tell me that AIs, chemo and radiation have no impact on my worsening health. They don’t know. And that makes everything the say quite literally useless to me.

@pktaylor59
I had to take Anastrozole in the morning as I had insomnia when I took it at night.

I first took Tamoxifen for a couple of years until my dr. switched me to Anastrozole. I got another breast cancer (in the other breast) anyway 4 years after the first. Now I don’t feel confident about the outcome while on this drug.

@beyourownadvocate
Thank you so much! I will try morning then! I had insomnia bad when I took it last time. Maybe that was my problem?

I just started Anastrozol. Took it for two days in the morning after breakfast. Later in the evening i was feeling very foggy in my head and cloudy vision. Took my BP which is normally 120/80 or 128/78, etc. after taking that pill it was 148/78. It scared the crap out of me. I have never had a BP like that in my entire life. Im 66 YO. Anyone else experience higher than normal BP.? I stopped taking it at the direction of the nurse. No alternative suggestion. Then the nurse/doctor told me to go to my PCP if my BP continue to be elevated. WTF????? What can i do now? I dont need BP medication. I never had high BP. Any suggestions are appreciated.

@dmr4ever Your last statement is what really hits home. I understand they’ve never been through this in most cases so they don’t know what we are actually going through. I get a lot of the “the medication doesn’t cause that” when I mention something. I do a lot of my own research. Been through chemo but it’s been over 2 years now so I shouldn’t still be tired or have brain fog etc. developed tinnitus on exemestane, not a listed side effect, but I found an article stating up to 56% of women on exemestane develop it. Weight gain! Claim is ai doesn’t cause it, just redistributes fat to mid section and harder to loose weight. These from multiple areas - PCP, Oncologist, surgeon. I’m currently on a med vacation - supposed to be 4 weeks but I’m currently at 6 because it seems like this is the first time in 3 years I’ve actually felt almost good. I’ll call this week and see what he wants me to do but have a list of things that I’ve noted are different off the meds and will let him know even if they aren’t listed as a typical side effect.

Maybe this has already come up, sorry if so. I’m supposed to start an AI after DCIS diagnosis in 5 months ago. I’m really worried about side effects—already have osteoporosis, and went through menopause years ago. Are there tests to see how much estrogen is actually circulating in your body prior to using an inhibitor? I feel that my estrogen level might already be very low, and trying to suppress it any lower may do more harm than good. It would be nice to have a baseline number, to help evaluate the AI dosage and effects. Maybe I am misunderstanding the whole mechanism of the treatment?

@mistymar
I saw my oncologist last week and have decided to stay on anastrozole because I am high risk. After my recent break I switched to taking it at bedtime instead of mornings. I only feel marginally better off the drug. That helps with the nausea.

It may help if you review your risk of recurrence vs any actual harm the side effects may cause. You’re an individual not a statistic.

It’s a shame that no studies follow up with patients about real life side effects.

I worked on editing drug inserts for a medical publisher and am very familiar with the long lists of side effects for drugs. Doctors only talk about the most common ones. And they dismiss everything else. If a side effect is lower on the list, in the single digits, doctors decide it’s too rare for anyone to experience. That attitude is just lazy.

@orienteer
Women’s endocrine systems naturally produce testosterone which is quickly converted into estrogen. The body makes female hormones even if we have diminished levels of estrogen due to menopause and/or surgical removal of ovaries. Our serum estrogen is likely very low but AIs block testosterone from being converted to estrogen. This starves cancer cells of that converted estrogen.
You’re right that side effects may be related to the AI drugs’ mechanism of action as much as the lack of estrogen. It’s kind of amazing that researchers found that cancer can feed on these very small amounts.
The struggle is real. And the decision we have to make about taking AIs is hard every single day.

@pktaylor59
I initially had to take it in the morning because of sleep issues. I’m over two years in now. Last month I switched to bedtime dosing because of nausea. I only occasionally have sleep issues at this point. Managing the side effects is an ongoing battle. I have taken four separate breaks from the drug since 2023. I am high risk so I keep trying.