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Timing of aromatase inhibitors (AIs) - taking day or night?
Breast Cancer | Last Active: Jun 15 9:53am | Replies (96)Comment receiving replies
@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.
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@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.