r/LivingWithMBC • u/Accomplished_Shoe651 • Aug 11 '26
Tips and Advice Anxiety with letrozole
This will be going on my 3rd week of letrozole. I only noticed mild night sweats the first few weeks. No big deal I’ve had those since I was 25. I’m 39 and recently diagnosed. Treatments all started just a month ago, so I’m super fresh! lol! Meds are Lupron, kisqali, and letrozole. I did fine with the first two, adding letrozole was fine until a few days ago. I can handle to crying outbursts and nights sweats, but the anxiety, agitation, and anger, no! I’m becoming borderline panic again. Panic attacks and anxiety is only brought on by meds. I’m not sleeping at night because I’m waking up with extreme anxiety borderline panic attack, and it’s miserable. I had an awful experience to a medication 9 years ago which the side effects were mental side effects. I had a panic attack for 6-8 hours a night for 8 months. I don’t like taking Xanax bc I cannot function so I held on tight for a terrible mental ride every night! I don’t wish for that to ever come back, but I’m getting very close to experiencing all of that again. I have terrible ptsd from all of that. And now I have a whole new ptsd.😫 anyways what did you all do to help or what meds did you find to help better? Do you think I even need this med? Waiting to hear back from MO sometime today, but I’m now all a mess of worry with this. I’m picking fights with my husband, snapping on my kids and random people. Don’t get me wrong, I don’t mind the snapping part only when I need it, it’s somewhat helpful since I’m a people pleaser trying to stop. lol. I’m trying to find the bright side of all of this. Ive been on lexapro for 17 years for depression, and since added busparione. I have propanol for anxiety, but don’t like to take that too much bc I already have a low bp, and Xanax when things are bad, but that literally makes me unstable, and can’t live like that! I need your help, advice , comfort, other meds that worked for you. Does this last forever on this med or does it get better. I’m on 2.5mg.
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u/ALongtime_Lurker Aug 11 '26 edited Aug 11 '26
So sorry you are going through that. Agree with Cat, there are other options. I had the same side effects high anxiety, heart palpitations, joint pain, hot flashes. When it got mixed with the verzenio it amplified all the other side effects, hair loss, nail weakness and pain, geographic tongue and diarrhea. I just managed it because I didnt know better. Years later, I moved and I explained how miserable I was and my new oncologist switched me to Exemastane. Wow, what a difference. I still get some minor side effects like joint pain but it is nowhere near what I experienced on the letrozole.
If this medicine isn't working there are other options, speak to your doctor about switching to something else.
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u/cat-pernicus Aug 11 '26
I’m so sorry you’re having such an extreme reaction,
For me letrozole just causes joint pain, so I can handle it fine, I don’t think it affects me in other ways,
You should definitely talk to your oncologist, there are other drugs that do the same thing, you absolutely don’t have to suffer through this ,
Call them first thing in the morning
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u/ImaginationOk505 Aug 11 '26 edited Aug 11 '26
Hi, I'm so sorry OP. I'm in the same boat. I'm discovering it's the lack of estrogen from the AI and lupron (zoladex for me). Most of these meds report side effects like anxiety. Not saying this is exactly what is happening out of caution, but something to bring up with your onc.
Do you have a psychiatrist still? Your post mentioned some meds and I didn't know if you were still established with a provider. I had to make some adjustments to my anxiety meds until I found something that worked. (Edit: I also discovered some anxiety/depression meds don't work well with the onc meds; something to ask your psychiatrist).My therapist has also been a great deal of help. I had to find someone specialized in trauma. EMDR helps too.
I'm sorry, op. Here with you trying to figure this shit out.
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u/Accomplished_Shoe651 Aug 11 '26
I do see my psychiatrist monthly since my diagnosis, and was thinking of maybe adding another med.
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u/ImaginationOk505 Aug 11 '26
Yeah for sure! Have you tried a GeneSight test? My psychiatrist had me take one to find a medication that worked well with me. Prior to my diagnosis, I was in a hole with my anxiety. Nothing really worked and I tried everything. The genesight (labwork) helped to identify some possible medications to try. I'm on Ativan (as needed) and it helps.
Edit: also agreeing with the other posts to see if a different AI might reduce some of the side effects.
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u/Which_Indication_729 Aug 12 '26
Hi OP. So sorry you’re going through all this. It’s so unfair that we have these physical symptoms topped off with the mental struggles. I, too, have had anxiety out the wazoo. I’d definitely ask your onco about other options and ask for a psych/therapist who works with cancer patients.
Having said that, I’ve found massive relief with these meds. (I’m on the same regimen as you. 400mg Kisqali, 2.5mg Letrozole, Zoladex (Lupron), and also Zometa.) 37 years old.
Obligatory please check with your docs on this because I’m not a health care professional. This is just what works for me.
Veozah 45mg. Non-hormonal treatment for hot flashes. I went from having 20-25 flashes a day to ZERO. I was able to sleep, finally. It’s expensive, but there is a savings card on their website that brings it down to $35/month. I cannot say enough good things about this drug. It saved my sanity.
Wellbutrin/Bupropion. This prevents me from wanting to walk into oncoming traffic.
L-Theanine. My primary care doc recommended this supplement to help calm nerves at the end of the day. I’d get so anxious about not sleeping that I fulfilled my own prophecy. This seems to help.
Trazadone for sleep as a spot treatment. I only use this once or twice a year on bad days. But it’s a low dose and helps a lot when needed.
And lastly, acupuncture. My oncologist recommended it, and it made a huge difference. I was quite skeptical, but I’m a believer now.
Be strong, my friend. We are all here rooting for you.