Severe side effects after only 7 weeks Anastrozole. Next drug?

Posted by kayleenchilds @kayleenchilds, Oct 11 11:18am

I have ALS and LCIS. I had a lumpectomy in July 2024 and began Anastrozole. After 7 weeks the burning scalp, hair falling out and vision problems were so bad I had to stop. Now I don’t know which drug to try. I have to decide by Oct 30th. Can anyone out there tell me of your experiences? I am 72. Also it is so wrong and confusing that LCIS is called lobular CANCER in situ but it isn’t cancer!

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

Ooops I meant that to say ALH (atypical lobular hyperplasia), NOT ALS!!

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I’m 72 also and found my lump 18 March 21. Had lumpectomy, chemo and radiotherapy . I was perscribed Anastrozole to get rid of my oestrogen and it caused joint and back pain with the back pain extremely painful. I also had change in sight and brain fog. I fought to have meds changed to exemestane with my
Oncologist fighting me all the way!! His attitude was that tge new meds wouldn’t make any difference!! I found a Breast care nurse who had a new prescription for Exemestane sent to my GP surgery in July 2023. I take this every second day. Needless to say I got rid of that oncologist. My back isn’t any better but I’ve now been perscribed with 30/500 Co codomol and these help the pain. I also do exercise and physiology. It’s your body so fight, like me, to get what you want . Be strong💪💪💪💪

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This photo is just to show you there are oncologists thst say taking exemestane every second day is no problem

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I’m 61. Anastrozole did not agree with me at all. Took a break from it for about a month to feel right again. (A lot more to story but too long) started Exemestane- joint aches and insomnia. Tried taking at night and the every other day .Took a break for a couple weeks… started acupuncture (she’s an oncologist) and some supplements. Started Exemestane ( I take everyday in the morning) again and am doing better. Walking, yoga, and pranayama… I’m okay with my new normal. My daily routine has a few more additional items I do and I believe they all help.

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I’ll keep an eye on this thread because I have been on ananstrazole for over 7 months now and have bone and joint pain, back pain, mood swings (estrogen, I know), brain fog, weakness. Makes it hard to do much. I wasn’t really bad, just constant. Oncologist recommended change to exemestane 2 visits ago but I declined because I “wasn’t that bad” and the same side effects exist with all the ai meds. Last visit, he took me off because as he said - I shouldn’t have to live in pain. Just 6 days off and I already feel better and more mobile. So I also have to decide what to try next and they report more cardiac effects with exemestane so scares me a little. So as I said, I’ll watch this and thanks in advance for all who answer and help us out.

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@celestebradham

I’m 61. Anastrozole did not agree with me at all. Took a break from it for about a month to feel right again. (A lot more to story but too long) started Exemestane- joint aches and insomnia. Tried taking at night and the every other day .Took a break for a couple weeks… started acupuncture (she’s an oncologist) and some supplements. Started Exemestane ( I take everyday in the morning) again and am doing better. Walking, yoga, and pranayama… I’m okay with my new normal. My daily routine has a few more additional items I do and I believe they all help.

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Hi~ thanks for sharing your experience! I have wondered if taking the drug in the morning might work better than at night. My horrible side effects were mostly at night. I may try that with the new drug. I am looking at raloxifine or exemestane. I definitely am going to start yoga again! Glad you are doing better💐

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@mistymar

I’ll keep an eye on this thread because I have been on ananstrazole for over 7 months now and have bone and joint pain, back pain, mood swings (estrogen, I know), brain fog, weakness. Makes it hard to do much. I wasn’t really bad, just constant. Oncologist recommended change to exemestane 2 visits ago but I declined because I “wasn’t that bad” and the same side effects exist with all the ai meds. Last visit, he took me off because as he said - I shouldn’t have to live in pain. Just 6 days off and I already feel better and more mobile. So I also have to decide what to try next and they report more cardiac effects with exemestane so scares me a little. So as I said, I’ll watch this and thanks in advance for all who answer and help us out.

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I am only 8 days off Anastrozole and feel SO GOOD! Have you looked at raloxifene? It looks like blood clots are the main concern. How do you decide?!

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One thing I have found helpful in these situations--get some actual statistics. Find out what your odds of recurrence/spread are with and without an aromatase inhibitor. For example, let's say it reduces metastasis by 50%. That sounds worth it. But what if your basic odds are only 4% chance of spread? Going down from 4% to 2% might not be worth the side effects. Sorry to add math in to an already difficult situation, but basically just ask your oncologist and factor that in to your decisions.
That said, I've been on letrozole for close to 24 months without any problem Both my oncologist and I think it is the only thing keeping my aggressive cancer at bay for the time being. Anyone have any positive experiences that might help others?

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@rosa1935

I’m 72 also and found my lump 18 March 21. Had lumpectomy, chemo and radiotherapy . I was perscribed Anastrozole to get rid of my oestrogen and it caused joint and back pain with the back pain extremely painful. I also had change in sight and brain fog. I fought to have meds changed to exemestane with my
Oncologist fighting me all the way!! His attitude was that tge new meds wouldn’t make any difference!! I found a Breast care nurse who had a new prescription for Exemestane sent to my GP surgery in July 2023. I take this every second day. Needless to say I got rid of that oncologist. My back isn’t any better but I’ve now been perscribed with 30/500 Co codomol and these help the pain. I also do exercise and physiology. It’s your body so fight, like me, to get what you want . Be strong💪💪💪💪

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Do you take it in the morning or at night? Thank you for sharing!

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I have taken Anastrozole for two years. Then started taking cholesterol meds Ravastatin and my muscles were killing me constantly. I thought it was the Anastrozole but I stopped the Ravastatin and now just a little sore so I think I’ll continue Anastrozole for now. Thanks for everyone’s input.

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