Has anyone changed from Anastrozole to Exemestane?

Posted by rozv @rozv, Jan 7, 2024

I had DCIS 16 yrs ago and developed memory/cognitive issues along w hair loss, joint pain,etc with Tamoxifen so had to discontinue it after 2 years. There were no other AI's back then so that was the end of my treatment . I was diagnosed with a new DCIS in the opposite breast in Feb 2023.. I had surgery, radiation and began Anastrozole in May. The joint pain and insomnia became severe within 2 months with an average of 3 hrs of sleep a nite/napping during the day, heating pads on my knees and back, etc which impacted my life style and marriage. Then I started to experience brain fog/memory issues so discontinued the Anastrozole with a month long break. The joint pain and insomnia resolved, and the memory issues have improved but are still an issue.
I just started on Exemestane 2 days ago and am wondering if anyone else is taking it and what their experience has been?. Thank you for your input and best wishes on your journey.

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I am on Exemestane, with Propel. Water supplement with electrolytes, it's a game changer. Little to no side effects.
I have lunch every day relatively the same time . With exemestane and Propel after lunch. Really great!

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It was the terrible joint pain I had on anastrozole - so after 11 months, I was switched to exemestane. It took 2 too 3 months but the joint pain (hands, toes, shoulders) faded with time. I was able to make my 5 year mark. Not sure if I had cognitive issues as I was already retired. Good luck. Choose what's right for you.

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I was initially on Anastrazole, for 4 months and developed both trigger thumbs. I went on a 3 week break and went to O.T. and the thumbs resolved. Then I started on Exemestane. I started to get trigger fingers in several but could easily work it out under warm water, had stiffness, foot pain and a few other things. I stuck it out and I am at the 2 yr mark. The triggers went away and some of the stiffness and foot stuff is improving. No sweats, but I do notice I like my apartment cooler than I used to. I do cry easily but I am a sensitive person. I am sticking it out and taking it a month at a time. I am 86 soon. Oh, my oncologist did tell me that many of her patients start to see improvement especially in the stiffness at about the 2 to 21/2 yr mark.

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Profile picture for mistymar @mistymar

I started on Anastrazole and did fine for the first few months. Of course brain fog and a little achy but nothing I couldn’t deal with and of course the brain fog could have been from the chemo or radiation. By 9 months though, it had gotten to the point where I was looking for the guy with the knife, everyday stabbing pains somewhere - just moved around. So we went to exemestane. Again fine for about 3 months then weight gain (10# in a week with no changes to diet or exercise, had to do 24 hr liquid fast to stop it) followed by extreme fatigue. While not sleepy per we, I would nod off in the middle of things, a bit afraid to drive later in the day. He did tests to rule out other causes, all neg. Then the insomnia hit - barely able to get 3 hours a night which made the fatigue worse. Felt weak, unable to do much so stopped going out. Didn’t want people to have to stop and wait for me. Along with this was elevated bp, heart rate, difficulty using my hands/thumbs (not really trigger thumb, just swelling and pain, thought it was arthritis). At about 18 months onto this, Told me to stop for 4 weeks and I took 6 because I didn’t even feel human till 4weeks. By then, few afternoon naps, 6-7 hours sleep, normal bp, back to my mile+ walk daily without stopping every 2 minutes to catch my breath, stopped forgetting what I was going to do and the pain/swelling in hands went away. He wanted me to restart, won’t entertain lower dose like every other day. Within 2 weeks it all started to come back. BUT no pain. I’m now about 2 1/2 weeks into Letrozole and we’ll see. Hopefully the exemestane works for you. Everyone reacts differently to each one and we have to eliminate the effects of the medication (no estrogen effects) from actual side effects of the drugs themselves. My oncologist says he’s had some patients who don’t tolerate any but we have to give them a try.

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@mistymar

I started Anastrozole three years ago. It’s a struggle. I have taken three breaks of about four to six weeks. I tried Exemestane but couldn’t notice any difference. The drugs’ mechanism of action may be different but the lack of estrogen seems to cause the same problems. I was determined to get through five years because I have a high risk of recurrence.

I am the primary caregiver for my adult daughter who has Complex Regional Pain Syndrome. She has had a stroke and pipeline surgery for a complex double aneurysm. This is my reason for trying to push through the horrible side effects.

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Profile picture for dmr4ever @dmr4ever

@mistymar

I started Anastrozole three years ago. It’s a struggle. I have taken three breaks of about four to six weeks. I tried Exemestane but couldn’t notice any difference. The drugs’ mechanism of action may be different but the lack of estrogen seems to cause the same problems. I was determined to get through five years because I have a high risk of recurrence.

I am the primary caregiver for my adult daughter who has Complex Regional Pain Syndrome. She has had a stroke and pipeline surgery for a complex double aneurysm. This is my reason for trying to push through the horrible side effects.

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@dmr4ever I feel for you. And it is difficult to determine what are actually side effects of the meds and what are side effects of what the meds do - ie take away estrogen. It seems like a lot of the listed side effects for all these meds are the same as menopause - the brain fog, mood swings, fatigue, insomnia etc, etc, etc. The only way to tell sometimes is to come off the meds and see what happens but then there’s that tumor on the background. And side effects can be different on each one - didn’t have the insomnia on Anastrazole and didn’t have the bone/joint pain on the exemestane. Still too early to tell what Letrozole has in store for me and then possibly Tamoxifen. My onco won’t entertain low dose (every 2-3 day dose) but I see a lot of that in these forums. Maybe consider asking about that if you haven’t already. May help keep you on the meds with fewer bad side effects to be better able to care for your daughter. Will keep you in my thoughts as we go through this journey. Only a few more years right?

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Profile picture for sboston1 @sboston1

@sjburkie
I have been on Anastrozole for three years. Joint pain and hot flashes terrible. Are you have either of these symptoms? I also had a total hysterectomy which has caused more of a drop in estrogen. sboston

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@sboston1
Lots of people having trouble with Anastrozole and Letrozole. I chose Exemestane and Propel chaser which has electrolytes in it. Little to no side effects. If you switch you have to give your body a chance to adjust too. Talk with your doctor!! I can't imagine, living with joint pain and hot flashes for that long! Switching too soon, is really tough, I read that here from a woman that switched too quickly. Use your doctor's guidance to make the appropriate switching schedule. Are you getting infusions too, with either chemo or Herceptin??

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Profile picture for angele2times @angele2times

@sboston1
Lots of people having trouble with Anastrozole and Letrozole. I chose Exemestane and Propel chaser which has electrolytes in it. Little to no side effects. If you switch you have to give your body a chance to adjust too. Talk with your doctor!! I can't imagine, living with joint pain and hot flashes for that long! Switching too soon, is really tough, I read that here from a woman that switched too quickly. Use your doctor's guidance to make the appropriate switching schedule. Are you getting infusions too, with either chemo or Herceptin??

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@angele2times
Thanks sp much. I will talk with my doctor. I appreciate you! šŸ˜

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Profile picture for sboston1 @sboston1

@angele2times
Thanks sp much. I will talk with my doctor. I appreciate you! šŸ˜

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@sboston1

Good Luck with your journey! May the road have less bumps for you!

šŸ™‚

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Profile picture for mistymar @mistymar

@dmr4ever I feel for you. And it is difficult to determine what are actually side effects of the meds and what are side effects of what the meds do - ie take away estrogen. It seems like a lot of the listed side effects for all these meds are the same as menopause - the brain fog, mood swings, fatigue, insomnia etc, etc, etc. The only way to tell sometimes is to come off the meds and see what happens but then there’s that tumor on the background. And side effects can be different on each one - didn’t have the insomnia on Anastrazole and didn’t have the bone/joint pain on the exemestane. Still too early to tell what Letrozole has in store for me and then possibly Tamoxifen. My onco won’t entertain low dose (every 2-3 day dose) but I see a lot of that in these forums. Maybe consider asking about that if you haven’t already. May help keep you on the meds with fewer bad side effects to be better able to care for your daughter. Will keep you in my thoughts as we go through this journey. Only a few more years right?

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@mistymar

Thanks for your kind and thoughtful words. It’s good to know we are not alone.

I haven’t tried Letrozole yet. That will be my next step.

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