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Advice on Exemestane

Posted by ram33 @ram33, Nov 7, 2023

I've been prescribed Exemestane after severe jaw pain from Anastrozole. The listed side effects of both drugs are terrifying to me. Even more terrifying after the pain I suffered from Anastrozole. Looking for any advice about Exemestane like what time of day to take it? I've read a few posts on starting with 1/2 dose for a bit and slowing increasing. Anyone do that and find it helpful? Really interested in any advice on what to do or not to do to try moving forward. Thank you in advance.

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ksue3 | @ksue3 | Apr 3 1:25pm
In reply to @mistymar "@ksue3 you say a risk score of 34 makes you continue the meds. Where does this..." + (show)
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@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.

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@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.

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mistymar | @mistymar | Apr 4 12:46pm
In reply to @ksue3 "@mistymar I was referring to my ONCO score done on the tumor after surgery. That score..." + (show)
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@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.

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@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.

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sally484 | @sally484 | Apr 4 3:02pm
In reply to @mistymar "@sally484 so true! This is one of those side effects they just don’t talk about. I..." + (show)
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@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.

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@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.

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sally484 | @sally484 | Apr 4 3:21pm

I am so sorry you are going through this. Hopefully, we can get us both fixed!!!

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jwmusic65 | @jwmusic65 | Apr 5 7:48am
In reply to @mistymar "@ksue3 I kind of followed your same pattern, kind of in the same boat. Also afraid..." + (show)
Profile picture for mistymar @mistymar

@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.

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@mistymar I take AlgaeCal which is available OTC. Oncologist prescribed Fosamax but that comes with its own set of side-effects. Not interested in any other prescribed meds. Have tolerated both chemo & radiation & now a pill (Anastrozole) which has its own downside regarding my bones so I enrolled myself in physical therapy plus I walk and ride the stationary bike at the local Rec Center almost daily. I think more oncologists should read this blog as part of their extended education! They need to walk-the-walk vicariously!

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mistymar | @mistymar | Apr 5 10:04am
In reply to @sally484 "@mistymar I am sorry you are having problems with your teeth as I am. Do you..." + (show)
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@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.

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@sally484 very definitely! Th primary was when I had 3rd chemo infusion. I yawned one morning and actually FELT the lower teeth shift. Initially thought I just imagined it but could tell fryer that it hit differently. But now, 2+ years into ai, they’ve moved even more, those that were a little crooked are now way off and I’ve started to have law problems on the left (the shift was to the right) which I attribute to the difference in the bite.

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sally484 | @sally484 | Apr 5 1:33pm

I am so sorry to hear you are having these problems with your teeth. I couldn't, for the longest time, figure what was going on with my teeth. No one ever told me that the AI's affected your teeth. If they had, I would have thought about it more. In fact, I think I read it on here about someone having problems with their jaw bone. Even then, I didn't think much about it. I had been on Exemestane for 1uite awhile and didn't have a problem. Until, one day I went to brush my teeth and all my lower teeth were going sideways and crooked. I'm kinda fussy about my teeth, so I was heartsick. Now, I think the only thing that will fix them is braces. My bite is off, and I bite the inside of my mouth when I chew. It makes me really upset!

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angele2times | @angele2times | Apr 7 1:52pm
In reply to @mistymar "I was started on Anastrazole. I had short episodes initially (headaches, nausea, dizziness) that would go..." + (show)
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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.

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@mistymar
Hi
I take the Exemestane at lunch time with lunch. I sit down and eat then take the pill. I am tired at night and sleep. I decided that having some symptoms for half a waking day might be better, for sleep and other side effects. Just new at this drug, so far so good. A little more tired but, a lot of that is weather related as it is spring here, or trying to be spring! Also, the pill. Having a real struggle with taking HERCEPTIN though, I don't have Metastatic breast cancer. Had mastectomy and chemo. 74 and not sure about this every 3 weeks for a year?? Anyone have any rate of success with this? Any advice from monitor or patients.
To help me decide, of course, it's my decision just really confused about this right now. any facts would be greatly appreciated, and knowledge is power!!

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karenzm | @karenzm | Apr 19 5:39pm
In reply to @sally484 "Exemestane was the 1st AI prescribed to me and the one I took the longest. That..." + (show)
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Exemestane was the 1st AI prescribed to me and the one I took the longest. That was 5 years ago. I also took Anastrozole. My teeth are now a mess and my jaw cracks everytime I eat. I had to have a back molar pulled due to an abscessed tooth. ALL of my teeth have shiffted. My bottom teeth across the front are completely crooked and my top teeth have shifted somewhat..............not as bad as the bottoms. I had my two front teeth replaced years ago due to a chipped front tooth. They also started to move and had to be replaced. I am now off the meds, but the damage has been done. I didn't have alot of aches and pains, but my teeth are ruined. If I had to do it again, I don't know if I would.

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@sally484
oh my that is terrible. That is my exact concern, what are these meds doing to my body that are not reversable. scary that our options are cancer returning risk or serious damage to your body.

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angele2times | @angele2times | Apr 19 6:45pm
In reply to @angele2times "@karenzm Ok, cancer is a puzzle, dry eye to get Relief to drop in your eyes..." + (show)
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@karenzm
Ok, cancer is a puzzle, dry eye to get Relief to drop in your eyes twice a day each eye two times will feel very good after the first drops are in. I brush my teeth in the morning 2 drops both eyes. Brush my teeth at bedtime 2 drops each eye again. Relief, my doctor approved this. Hard candies to suck for dry mouth will help with this. Vagina dry use lubricant from CVS Astro Glide. Even if you don't have sex right away, this will help. Then, you can go back to sex. Sorry !! AI are hormone blockers so you should be able to tolerate one of those. But you put your foot down, about taking something again that didn't work for you in the first place!! Sea Sponge real one, will help with dry skin and flakiness. Hydrating shampoo too for your hair. Good luck, just started with EXEMESTANE, we will see. Hopefully only small bumps!!

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19 days on Exemestane, with Propel. Work8ng soo....... far!! Keep everything crossed!!

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| @karenzm reacted with "hug" to your comment on Sun, Apr 19.

@karenzm
Ok, cancer is a puzzle, dry eye to get Relief to drop in your eyes twice a day each eye two times will feel very good after the first drops are in. I brush my teeth in the morning 2 drops both eyes. Brush my teeth at bedtime 2 drops each eye again. Relief, my doctor approved this. Hard candies to suck for dry mouth will help with this. Vagina dry use lubricant from CVS Astro Glide. Even if you don't have sex right away, this will help. Then, you can go back to sex. Sorry !! AI are hormone blockers so you should be able to tolerate one of those. But you put your foot down, about taking something again that didn't work for you in the first place!! Sea Sponge real one, will help with dry skin and flakiness. Hydrating shampoo too for your hair. Good luck, just started with EXEMESTANE, we will see. Hopefully only small bumps!!

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