Help! I am an idiot on my AI med
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Anonymous
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Help me - I have to take an aromatase inhibitor long term (5-10 years) in order to reduce my breast cancer recurrence.
AIs are given to post-menopausal women to eliminate the estrogen that some (my) tumor feeds on, but the lack of estrogen is giving me serious brain fog. I can't locate words. I feel like I have dementia. I'm dropping details on important personal and work related tasks that are having serious consequences. To compound things, I have ADHD, so it's even worse and my ADHD meds do not seem to have the impact they previously did. Is there anyone out there who has experienced this side effect of AI medication. Did it subside? Did you get used to it and find work arounds to manage it? I'm on Letrozole - are other AIs less likely to do this? I may survive breast cancer, but I will be broke and unemployed/unemployable. Thoughts? |
Anonymous
| I don't have any experience with that medication. I am mid-40s and in perimenopause and was having terrible brain fog, have trouble with word recall, making dumb mistakes at work. Someone suggested magnesium l-threonate (magtein) and it has really really helped me with brain fog. Maybe take a look at that? |
Anonymous
Were you already in menopause prior to starting AI? |
Anonymous
Yes, but I don't ever remember having this degree of trouble, and it was mostly during perimenopause. Once I was in full menopause, the memory and word finding difficulty went away pretty much. I've been in menopause for 4 years, and this med shuts the estrogen down even more. I literally can't find common everyday words multiple times a day and have to "talk around them" and people's names -- forget about it! |
Anonymous
| Talk to your oncologist |
Anonymous
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How long have you been on Letrazole? I've been on it for 3 years. The first year was definitely the worst but now I barely notice those symptoms. I do have to be careful to eat healthy, and get good sleep (which can sometimes be hard on letrazole/AIs). One night of crappy sleep and I have brain fog, word loss etc
I also take Trazadone which helps with sleep. Talk to your oncologist. Also, some people have worse side effects and do better on different AIs (Anastrozole, etc). It's not uncommon to switch. |
Anonymous
| Since you were already 4 years post-menopause, it may not be the lack of estrogen so much as just garden variety side effects of the med. I didn’t notice significant brain fog on Letrazole and I was in perimenopause when I started it (then again, maybe you are accustomed to operating at a higher level than I do in general, lol). It might be worth considering a different AI. Definitely talk to your oncologist. |
Anonymous
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I'm 15:26 PP. I also wanted to add, that if your oncologist isn't receptive to helping you deal with side effects, find another oncologist.
My first oncologist had a terrible bedside manner and was very unsympathetic. I switched and my new onco is fantastic. |
Anonymous
Thank you for this encouragement. I may switch docs. I have not been happy about some interactions with the doc. How did you find your new oncologist? |
Anonymous
I did talk to the doc, and will try a switch, so hopefully the new medicine won't be as bad. |
Anonymous
| OP, I’m on the same med and relate to everything you’ve described. You are not alone! It’s so very frustrating. Like one poster said, I feel improvement when I’m eating, sleeping, and exercising optimally, but that's a constant struggle because of a busy life and a lot of fatigue as well that I feel is directly related to the meds. |
Anonymous
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By any chance have you had COVID recently? Anomic aphasia (trouble finding the right words exactly as you describe) as well as brain fog have been reported as some of the longer-lasting COVID effects. The good news is that they think it only lasts months, and goes away.
Maybe not your case at all but just another possible explanation. |
Anonymous
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I am OP. I came across this thread when doing research, and I wanted to update my experience with brain fog and the aromatase inhibitor so others could benefit.
The cause of my extreme dementia like brain fog turned out to be significant depletion of vitamin D by the aromatize inhibitor. My vitamin D dropped from 35 to 20 in a matter of weeks after starting medication. Once my vitamin D dropped, my calcium also dropped, which then made my PTH shoot up. The combination of low And high PTH was what really made me feel terrible. In addition, the medication made me anemic which contributed to fatigue. My oncologist at Georgetown was terrible and refused to figure this out, run any blood work, or consider the mechanism by which the medication could be causing my problems, even though there is plenty of research about aromatase inhibitors, estrogen, depletion, and vitamin D depletion. She just kept trying to switch me to another aromatase medication, and since the AIs have a similar mechanism, switching didn’t help at all. The problem was solved by taking large doses of vitamin D until I reached about 35 to 40 ng/dl level. The brain fog disappeared. I’m grateful to my PCP, who listened to my suspicions about the vitamin D connection when my oncologist would not, and advised me about vitamin D supplementation, and provided repeated orders for vitamin D and other blood work so that I could monitor my vitamin D levels and response. For another PP, who asked, I had Covid a year prior to this brain fog incident, but it didn’t cause me any problems and I didn’t have any long Covid or cognitive after effects. The blood work, symptom tracking, and going on and off the medication showed that the AI was the problem and that I needed to take significantly bigger doses of vitamin D while on the AI. |
Anonymous
| That’s for the update, OP. I’m glad you are doing better! |
Anonymous
| Oh, so sorry. I hope things get better for you soon. I am undergoing treatment for BC right now and I am worried about the adjuvant therapy too. Don’t want it. |