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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!

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tonysmom | @tonysmom | Oct 15 1:42pm
In reply to @mir123 "One thing I have found helpful in these situations--get some actual statistics. Find out what your..." + (show)
@mir123

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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I agree. I educated myself on radiation versus no radiation. The radiologist agrees with my situation,so I will not get radiation. Just the surgery and anastrazole.I'm 76 with early stage er+.There are no guarantees either way, but this is my choice. So far ( 3 months) I have been able to tolerate the med.

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engelwags | @engelwags | Oct 16 8:32am

I was on Anastrozole for 2 months and asked to be switched due to extreme stiffness. My oncologist took me off all meds for two weeks (a welcome, symptom-free vacation!) then I started Letrozole. I'm experiencing a bit less stiffness, and definitely nighttime leg cramps. I started taking a magnesium supplement at bedtime and that has helped significantly with the leg cramping. Walking and hydrating are important too. Not a fun process......but the outcome is important.

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kayleenchilds | @kayleenchilds | Oct 16 9:59am
In reply to @engelwags "I was on Anastrozole for 2 months and asked to be switched due to extreme stiffness...." + (show)
@engelwags

I was on Anastrozole for 2 months and asked to be switched due to extreme stiffness. My oncologist took me off all meds for two weeks (a welcome, symptom-free vacation!) then I started Letrozole. I'm experiencing a bit less stiffness, and definitely nighttime leg cramps. I started taking a magnesium supplement at bedtime and that has helped significantly with the leg cramping. Walking and hydrating are important too. Not a fun process......but the outcome is important.

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What time of day are you taking the letrozole?

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engelwags | @engelwags | Oct 16 11:15am

For starters, in the morning. When I was on Anastrozole I switched to nighttime, and it seemed to help for a bit, then things got a bit worse. Still waiting to settle in with this new med..........stay tuned!

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kayleenchilds | @kayleenchilds | Oct 16 12:02pm
In reply to @engelwags "For starters, in the morning. When I was on Anastrozole I switched to nighttime, and it..." + (show)
@engelwags

For starters, in the morning. When I was on Anastrozole I switched to nighttime, and it seemed to help for a bit, then things got a bit worse. Still waiting to settle in with this new med..........stay tuned!

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Thank you~keep us posted!

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sally484 | @sally484 | Oct 17 7:53am

I was on Anastrozole also. but it made me VERY moody. So my Dr. took me off that and put me on Exemestane. I'm not quite so bad now, however, since all these AI's mess with your hormones, I guess it's to be somewhat expected. Hope you are feeling better soon.

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myoga | @myoga | Oct 18 8:27pm

I was on anastrozole for a year. My onco put me on exemestane due to finger stiffness at night. No significant side effects from exemestane for the first 8 months, now I have rashes and skin itchiness. Wonder if anyone experiences the skin problem while on exemestane?

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2 replies
kayleenchilds | @kayleenchilds | Oct 19 11:36am
In reply to @myoga "I was on anastrozole for a year. My onco put me on exemestane due to finger..." + (show)
@myoga

I was on anastrozole for a year. My onco put me on exemestane due to finger stiffness at night. No significant side effects from exemestane for the first 8 months, now I have rashes and skin itchiness. Wonder if anyone experiences the skin problem while on exemestane?

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I have not tried exemestane, but I had very itchy burning scalp while on Anastrozole! It was so bad.

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sally484 | @sally484 | Oct 19 12:30pm
In reply to @myoga "I was on anastrozole for a year. My onco put me on exemestane due to finger..." + (show)
@myoga

I was on anastrozole for a year. My onco put me on exemestane due to finger stiffness at night. No significant side effects from exemestane for the first 8 months, now I have rashes and skin itchiness. Wonder if anyone experiences the skin problem while on exemestane?

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I have been on Exemestane for about a year or so and the side effects for me are being tired all the time and a little weight gain, My moods are iffy, but not as bad as they were on Anastrozole. I've haven't had any skin itchiness or any rashes.

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myoga | @myoga | Oct 19 1:11pm

@kayleenchilds Thank you for your response. I always have some kind of rashes here and there but now it’s more severe. My feeling is that whatever the problems I had before, now they are exacerbated by the lack of estrogen. I hope you feel better soon. Hugs

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