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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
@dmr4ever appreciate your response. I am a medical professional and therefore fully understand those “rare” side effects. Reading a PDR makes you not even want to take an aspirin! I’ve tried to review the risk of being off but that’s difficult because most of the time they don’t fit the circumstances. I’ve been to 1 site that said my risk on/off the medication was <1% difference and that I shouldn’t have even done chemo or radiation (too late!). But they only look at staging. Not at the Ki67 or oncotype. Another said they couldn’t give me any numbers because I’d already had chemo. Yet another said it was only to determine if I should continue ai past 5 years. So I am, I think like a lot of us, following the recommendations of our oncologist who will almost always err on the side of caution (ie - standard of care). And also that unrelenting fear that “if I stop the medication I may feel better but could that make the tumor come back so I should just stay on the medication or maybe shorter lifespan but better quality but then would I have to go through all this again if it comes back and would I or should I just stop, live my life and if it comes back accept I’ve lived long enough, or just stay on the meds and hope that there won’t be much damage, it’s only 5 years or should I ………….” that constantly sit in the back of my overactive brain. Ah well, we are surviving and I think a lot of it is these forums that open up the “we are not alone” and the “no, your not crazy” dialogues. Thanks to all who participate and help keep us sane and let us open up to someone who will listen and sympathize.
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@mistymar
I also wanted to mention that my sister was diagnosed a year after I finished chemo. Her diagnosis was much better than mine. She didn’t need chemo and only had a lumpectomy and radiation. She couldn’t tolerate Anastrozole. But she isn’t high risk.
I had chemo, double mastectomy, two positive lymph nodes, radiation and a borderline high Ki67. My sister and I are examples of how different diagnoses have a huge effect on whether or not we take AIs.
I hope the standard, undifferentiated model physicians use for prescribing AIs gets more accurate. But that’s probably not realistic.
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@mistymar
Yes! The conflicting statements from various doctors erodes trust. I have gotten different advice about my Ki67 score from my radiation oncologist and the oncologist I had through chemo. I changed oncologists after the first one pushed Verzenio and was evasive about my staging. My surgeon recommended my current oncologist. He is more open about my prognosis.
There’s a lot of controversy about Ki67 accuracy depending on individual labs’ ability to perform the test. It’s hard to rely on a test that is so inconsistent between labs.
I suspected my first oncologist of prescribing Verzenio based on his relationship with Lilly. I honestly believe he was getting paid to prescribe it as well as using patients for research purposes.