Advice on Exemestane

@angele2times
thanks for your reply - agree that could be the reason. i will discuss with Dr and maybe give Exemestane another try. I do drink a lot of water but not electrolytes so that's a good suggestion. Thanks

@celestebradham
thanks for your reply.
wow you sound very similar to me. i dont remember my mm but i also had IDC on left side almost under arm pit. surgery in 2023 and im still sore. I was negative for BRCA testing for 40 - all negative. lumpectomy and 30 rounds of radiation. 2 of 7 lymph nodes were positive and removed (this is the part that makes me nervous). i was on estrogen for years which im sure caused this mess. stopped immediately when i found out about cancer in Aug '23. also i had full hysterectomy - i feel my risk is low so Im conflicted putting my body through these AI's. i too struggle to sleep, everything dry (eyes, mouth, etc.... so sex is painful which puts me in the no desire category.

@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!!

@angele2times
Here you go
https://dailynews.ascopubs.org/do/reduced-dose-exemestane-noninferior-standard-daily-dose-postmenopausal-women-early-er

@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
Letrozole is standard protocol here, I read enough and know myself well enough, to keep away from Letrozole, because I have read enough. it is truly not for me. But also everyone is so different. But, started on Exemestane on Monday, time will tell. The test score they are talking about is Oncotype Score, I might have spelled the score type wrong but it's close. Mine was 27, hormone blockers are made to block your body from making to much estrogen.

What do you mean that your hasn't returned to normal? Please explain?

@angele2times my Oncotype was elevated which is why I did the chemo. Said it decreased my chance of metastatic disease from 20% to less than 1. Not sure it was the right decision but I did it. Mine was grade 2 IDC, high Ki67, 100% estrogen responsive but lymph nodes were clear (yea) and of course oncotype positive. My oncologist uses the ca 27-29 as a tumor marker. Initially at 92 (normal is less than 37). Went down to 69 post treatment and stuck there. Then when I started ai, it started back up to 87 when he did pet scan and brain mri (both negative). Then suddenly 1 month later, went back to 69, then 59 then to 52 and stayed in the 50s for 9 months. He wasn’t concerned because it was stable. Went to 6 month recheck and it went back up to 90. Gave it 6 weeks and stayed there so redid the tests and still no areas of interest but test is till in the 80s. So I’m back to 6 week bloodwork and rechecks. Been on Anastrazole and had to change to exemestane about 16 months ago but only been off for about 2 weeks and already feel 50% better. I’ve read the same - that letrozole is the worst of the bunch but as I said, not sure I’m comfortable coming off these meds and not much left to try.

@karenzm
A suggestion: Discuss with your PCP or breast oncologist about prescribing you Estradiol Vaginal Cream - 0.5% - insert x 14 days then x2 per week. This will also help with UTIs.
It's important to keep the vagina lubricated and not so dry it's impossible to enjoy sex.
And it will be a plus on cutting down the # of UTIs you may be experiencing.
This vaginal cream is very helpful and you will get your desire back.
Also, I hear you about your 2 positive lymph nodes. I had 1 positive out of 12.
Yes, I am nervous too. I understand completely.
All the best to you!

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.

@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.