1. < Breast Cancer

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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

ram33 | @ram33 | Nov 9, 2023
In reply to @kathyomaha55 "I just completed my 5 years of AI. YEAH!! It's a long journey - but you..." + (show)
@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.

Jump to this post

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?

REPLY
1 reply
kathyomaha55 | @kathyomaha55 | Nov 9, 2023
In reply to @ram33 "Congrats on completing the 5 years. Constipation was a problem for me on the first drug..." + (show)
@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?

Jump to this post

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.

REPLY
flowergal | @flowergal | Nov 9, 2023
In reply to @3dogngt "Thank goodness for this forum! It keeps me from thinking I'm going crazy. I was anastrozole..." + (show)
@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!!!!!

Jump to this post

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.

REPLY
celestebradham | @celestebradham | Nov 9, 2023

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 💪🏻

REPLY
debby100 | @debby100 | Nov 12, 2023
In reply to @kathyomaha55 "I just completed my 5 years of AI. YEAH!! It's a long journey - but you..." + (show)
@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.

Jump to this post

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 .

REPLY
View MoreView Less
Please sign in or register to post a reply.