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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Profile picture for kathyomaha55 @kathyomaha55

I just completed my 5 years of AI. YEAH!! It's a long journey - but you can do it. I was on anastrozole for the first 11 months - then was switched to exemestane. My hand join pain on the first drug was intolerable. Mostly my side effects were insomnia & hot flashes, my hair thinned a bit - but not really noticeable. I take CALM for sleep in gummies - it's basically magnesium. Also any AI just sucks the moisture out of your body - so dry hair/skin, etc. My worst side effect from that was chronic constipation. Well - 9 days after stopping the AI, no more constipation - it's wonderful. They asked me to take it for another 5 years - so 10 years total, and I refused. It was only going to reduce my chances of reoccurrence by < 3%. 5 more years is just not worth it to me. I'm 68 now. I had stage 1 with lumpectomy, no lymph node involvement, 21 radiation treatments, no chemo. I'm hoping the insomnia will resolve itself eventually.

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Congrats on completing the 5 years. Constipation was a problem for me on the first drug anastrozole and I'm only a few days into exemestane. How did you treat the constipation?

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Profile picture for ram33 @ram33

Congrats on completing the 5 years. Constipation was a problem for me on the first drug anastrozole and I'm only a few days into exemestane. How did you treat the constipation?

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Well - the Calm helped because it's basically magnesium. I took 4 gummies at night (for sleep & the constipation). Metamucil - I found some chocolate cookies that I could stand to eat, I'd eat 4 cookies a day. I didn't care for the powder in water. And Finally it got so bad I used Colace (2 to 4 tablets a day - the generic form). That really helped when the other 2 things were not moving things along. It didn't seem to matter how much water I drank or how much fiber I ate - it was never enough on it's own. The other thing that ticked me off - both my regular doctor & the oncologist acted like this was something trivial & waved me off. Same thing with the insomnia. I mean I got tired but Never sleepy. I'd lie in bed for hours awake. Sometimes I still do. The doctors do not realize these items really affect the quality of life. I meant to add - it took about 3 or 4 months on exemestane for my hand pain to go away, but it did. Went from a 7 to a 0 or 1.

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Profile picture for 3dogngt @3dogngt

Thank goodness for this forum! It keeps me from thinking I'm going crazy. I was anastrozole until the migraines did me in. The reclast infusion made me so sick I couldn't function let along gat out of bed for several days. Of course, that sent me into migraines again. I'm now waiting the headaches out in order to begin exemestane. I have chronic Lyme Disease that flares up at least once a year. I have had this for 15 years so I know what that is. Does anyone else have chronic Lyme and what can I do? My doctors don't seem to know. In the meantime I'm barely functioning and have 5 more years!!!!!

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I am to start AI medicine in two weeks after radiation finishes.
I also have chronic Lyme disease. It has flared twice since I was diagnosed. One of the ongoing symptoms from that is migraines.
I would also be interested in knowing more about others responses to treatment.

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Currently on exemestane, for 1 1/2 months. So far so good. I am
Hoping this one will work for me … I take it in morning with breakfast. Anastrazole DID NOT agree with my body. And put me in a “tail spin”. Took almost a month before I felt almost back to myself. Good luck 💪🏻

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Profile picture for kathyomaha55 @kathyomaha55

I just completed my 5 years of AI. YEAH!! It's a long journey - but you can do it. I was on anastrozole for the first 11 months - then was switched to exemestane. My hand join pain on the first drug was intolerable. Mostly my side effects were insomnia & hot flashes, my hair thinned a bit - but not really noticeable. I take CALM for sleep in gummies - it's basically magnesium. Also any AI just sucks the moisture out of your body - so dry hair/skin, etc. My worst side effect from that was chronic constipation. Well - 9 days after stopping the AI, no more constipation - it's wonderful. They asked me to take it for another 5 years - so 10 years total, and I refused. It was only going to reduce my chances of reoccurrence by < 3%. 5 more years is just not worth it to me. I'm 68 now. I had stage 1 with lumpectomy, no lymph node involvement, 21 radiation treatments, no chemo. I'm hoping the insomnia will resolve itself eventually.

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I am on third AI exemestane which I am tolerating. The hand joint pain in the night wakes me up . It does go away after 30 minutes in the morning. The anastrozole and Letrozole were painful head to toe ! The past year I had lumpectomy (2nd one) chemo and radiation . ER + So I will need the pill for 5 years . I feel like I got over every hurdle fine till I went on pill …5 years is a long time . I just had yearly mammogram and NO suspicious masses !!! I will continue herceptin till March then have port removed . This is a great place to read what others are going through to know you’re not alone. The lingo is so foreign when you’re scared and trying to find your through it all . Thanks to all who put the info on their journey here .

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Profile picture for debby100 @debby100

I am on third AI exemestane which I am tolerating. The hand joint pain in the night wakes me up . It does go away after 30 minutes in the morning. The anastrozole and Letrozole were painful head to toe ! The past year I had lumpectomy (2nd one) chemo and radiation . ER + So I will need the pill for 5 years . I feel like I got over every hurdle fine till I went on pill …5 years is a long time . I just had yearly mammogram and NO suspicious masses !!! I will continue herceptin till March then have port removed . This is a great place to read what others are going through to know you’re not alone. The lingo is so foreign when you’re scared and trying to find your through it all . Thanks to all who put the info on their journey here .

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@debby100
About to start herceptin and Letrozole, I had horrible bone pain and muscle pain with chemo.
I think I want to start exemestane instead of Letrozole? I am 74 years old, I think my oncologist will go along with my new plan. Cross your fingers. I want minimal side effects and certainly don't want to go through menopause again!! Horrible first time! Chemo was incredibly awful, with major joint paint and muscle pain still!!
Wish you luck! Keep posint everyone! It's good information.

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Both Anastrozole (1st trial) and Letrozole (#2) initially stared out fine with me, no side effects.
However, 3 months into both my headaches were severe at times. I am a migraine sufferer. Sometimes the headache was migraine-like (throbbing right temple) or more scary was an overall pressure in my head or forehead that felt like I was going to have a stroke. Tylenol ES 1000 mg. daily was just about a constant, along with ice packs on my head - day time or night time going to bed.
Off Letrozole for 7 days now, headaches have improved but can still occur, not as severely.
Seeing my breast oncologist today. Expecting Exemestane now. I am 10 months into the AIs so I have a very long road ahead of me. Hoping the headaches will not be a major problem on Exemestane.
But as we all know...nothing is a given on our journey! The very best to all!

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Profile picture for ram33 @ram33

Congrats on completing the 5 years. Constipation was a problem for me on the first drug anastrozole and I'm only a few days into exemestane. How did you treat the constipation?

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@ram33 I take something I found online called "Emma". I asked my oncologist about the ingredients, (as well as an alterative medicine physician I visit), and they were both in favor of me taking it. The constipation dissipated and my digestion has honestly never been better. I've been on Exemestane for a year now, and feeling really good as far as digestion goes. Still some muscle stiffness and lack of sleep, but MUCH better than things were on either Anastrozole or Letrozole. This fight is not for sissies, but aren't we lucky there are way to beat cancer? The treatments are tough but temporary. So worth it! Hang in there.

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Profile picture for briarrose @briarrose

Both Anastrozole (1st trial) and Letrozole (#2) initially stared out fine with me, no side effects.
However, 3 months into both my headaches were severe at times. I am a migraine sufferer. Sometimes the headache was migraine-like (throbbing right temple) or more scary was an overall pressure in my head or forehead that felt like I was going to have a stroke. Tylenol ES 1000 mg. daily was just about a constant, along with ice packs on my head - day time or night time going to bed.
Off Letrozole for 7 days now, headaches have improved but can still occur, not as severely.
Seeing my breast oncologist today. Expecting Exemestane now. I am 10 months into the AIs so I have a very long road ahead of me. Hoping the headaches will not be a major problem on Exemestane.
But as we all know...nothing is a given on our journey! The very best to all!

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@briarrose
Same with me. Started with anastrozole, joint pain and severe finger stiffness. Letrozole next, heavy head turned into migraine. One time it was so bad that it woke me up at night. I’m back on exemestane now, 7 months so far so good. Hope you tolerate exemestane well.

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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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