Advice on Exemestane

@ksue3 you say a risk score of 34 makes you continue the meds. Where does this come from. I have looked up risk scores online but If you answer that you have been diagnosed, they tell you they can’t give you a number. I’m 73, did lumpectomy, chemo and radiation. My doctor does tumor markers and while I understand there is a lot of discussion about their accuracy , it still adds to the picture. Mine have never returned to normal and twice now have bounced back to before treatment levels. So like you, whenever I have thoughts of stopping these meds, it makes me wonder if there’s something there that makes this test go up that will wreak havoc if I stop controlling it with the medications. Have currently been off exemestane for 10 days, already feel a little better. If it continues, I won’t go back on this drug as there isn’t quality of life there, but he will want me on letrozole which may take me back to where I was on Anastrazole. If there is another test/score etc that may help clarify the need for these meds, I would want to see that number.

@mistymar I was referring to my ONCO score done on the tumor after surgery. That score of 34 is considered in the high range. That made chemo a recommendation, which I did at age 83. The tumor was labeled aggressive. So, those things make me try to continue the Exemestane. I am in bad shape with bone density and was prior to starting this cancer path. Various meds have been tried over many years, so I fear falling or just having a bone break. A couple of years ago it was discovered that my kidneys were throwing out calcium and so bones weren't absorbing it. My goodness, what next? There is longevity in my family so I am not ready to risk have a recurrence of breast cancer. Will be 86, but still active and productive. Wish the side effects would level off. I wonder if it ever does.

@sally484 so true! This is one of those side effects they just don’t talk about. I did go through chemo which may have started the damage (actually yawned one morning and felt my lower teeth shift!). Had a broken crown but went into dentist after chemo, near end of radiation and aside from that, no problems, x-rays were good. Then started ai (Anastrazole, now exemestane) and developed moderate periodontal disease (pockets, bleeding) and have just finished the 4th crown and had 1 filling that loosened and finally (2 yrs out) had first 3 month recheck with no bleeding. While they mention mouth problems with the chemo, they don’t say it can be permanent and it is never discussed with the ai therapy unless they want to start bone meds.

@ksue3 I kind of followed your same pattern, kind of in the same boat. Also afraid of the side effects of continuing these meds vs stopping them with all this in the background. I had mild osteopenia when all this started, put on Ca/D3 once daily, increased to twice daily when started ai therapy. Also take fish oil, UC-II cartilage with boron (bone & joint) and recently added vitamin K2 because research shows it helps direct the calcium to the bones over blood vessels and kidneys. Maybe recheck that what you’re taking has K2 (K1 doesn’t help!). I also try to walk daily and do strength training 2-3x/week. My last dexa scan was normal.
Thanks for the reply and wish you continued strength in your way forward.

@mistymar I am sorry you are having problems with your teeth as I am. Do you feel as if your jaw has shifted? My bottom teeth in front are completely crooked. The only thing that will straighten them is braces. I've never had such a problem with my teeth aside from a chipped tooth on top in the front wich was due to an accident when I was a kid.

I was started on Anastrazole. I had short episodes initially (headaches, nausea, dizziness) that would go away in a couple weeks. Pain started at about 3 months on the meds. Generalized hip and lower back aches which I could deal with but then the sharp stabbing pain that would move round - left ankle, right hip etc - to the point where even meds didn’t help and some days it was non-weight bearing. At 9 months, he said “you shouldn’t have to live in pain” and stopped for a month before starting exemestane. I take it in the evening because the instructions are to take after a meal. Not always hungry at breakfast so this is the only meal I eat on a regular basis. (Mention this because I see some take it at bedtime - is this empty stomach or taken with a snack?) anyway, still the lower back discomfort but no major pain. My main side effects are extreme fatigue that started about month 4 followed by insomnia 3 months later. I also feel weaker than I think I should - could be related to the fatigue - but I just can’t do what I used to be able to do. Currently I’m lucky to get 4 hours a night. Magnesium helped for a couple weeks but then not much. He did a 1 month medication vacation late last year and things started to improve but worsened again after I went back on. So far, the only thing offered I to stop this one and try letrozol but that seems to be the worst of the lot so declined for now. And yes, my hair is thinning on this medication.