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Profile picture for mistymar @mistymar

@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.

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Replies to "@dmr4ever Your last statement is what really hits home. I understand they’ve never been through this..."

@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.