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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@rosa1935

I’ve stopped both and am now on exemestane since July 2023 which I take every second day. I’m thinking of stopping it completely. I was on Anastrozole for 2 years and the damage is done to my back ftom this medication. But all my oestrogen must b gone by now. Certainly feels like it!! I might just take a rest from exemestane but haven’t decided yet. Exemestane works to keep oestrogen from coming back but a side effect is that it can damage the heart. If it’s not one thing it’s another🤣

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How are your side effects from exemestane? Has your heart been affected?

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@kayleenchilds

How are your side effects from exemestane? Has your heart been affected?

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No. I’ve had 3 ECGs in last year and the results were normal. My back is my problem and thst eas ruined by Anastrozole.

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@rosa1935

No. I’ve had 3 ECGs in last year and the results were normal. My back is my problem and thst eas ruined by Anastrozole.

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So glad to hear that. I appreciate the conversation ~ keep fighting💕

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Letrozole basically the same maybe slightly 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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After six months on anastrazole, I had awful joint pain. I had also gained weight, had brain fog and hot flashes. The oncologist told me that any other hormone suppressant med would give me the same side effects. So he said I could just quit and I felt fine about it. My statistical odds of having a recurrence didn't change very much, and my blood work has been fine. I'm glad he didn't switch me to another medication.

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I am 69 years old. I was put on Anastrozole after being diagnosed with atypical ductal hyperplasia. My oncologist didn't want to put me on tamoxifen because I have the mutated Factor Five Leiden gene. I had horrible joint pain and leg cramps so my oncologist switched me to tamoxifen. I tolerated the drug well, but I started to have a little pelvic pain after two years and I was finding that I had difficulty holding my urine. My gynecologist did a vaginal
sonogram and found my endometrium lining was at 15, when it should be less than 4. No I have have to have a D and C. No matter what medication you are put on make sure you are aware of all the side effects.

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@debbie2721

I am 69 years old. I was put on Anastrozole after being diagnosed with atypical ductal hyperplasia. My oncologist didn't want to put me on tamoxifen because I have the mutated Factor Five Leiden gene. I had horrible joint pain and leg cramps so my oncologist switched me to tamoxifen. I tolerated the drug well, but I started to have a little pelvic pain after two years and I was finding that I had difficulty holding my urine. My gynecologist did a vaginal
sonogram and found my endometrium lining was at 15, when it should be less than 4. No I have have to have a D and C. No matter what medication you are put on make sure you are aware of all the side effects.

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I am so sorry you are having to deal with that. There are so many side effects of each drug it just boils down to which one would be tolerated with the least negative effects! If I only had a crystal ball it would help. Did you have a surgical removal of the abnormal cells for your ADH? I have ALH and I had a lumpectomy and then diagnosed with LCIS. I am 72 and really want to get going on an aromatase inhibitor but….. now stuck trying to choose again. Thank you!

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@debbie2721

I am 69 years old. I was put on Anastrozole after being diagnosed with atypical ductal hyperplasia. My oncologist didn't want to put me on tamoxifen because I have the mutated Factor Five Leiden gene. I had horrible joint pain and leg cramps so my oncologist switched me to tamoxifen. I tolerated the drug well, but I started to have a little pelvic pain after two years and I was finding that I had difficulty holding my urine. My gynecologist did a vaginal
sonogram and found my endometrium lining was at 15, when it should be less than 4. No I have have to have a D and C. No matter what medication you are put on make sure you are aware of all the side effects.

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Hi Debbie, I was on anastrozole and having joint pain and severe leg muscle cramps especially at night. My thinking abilities also effected. I am taking a med vacation and will start on new med in a couple of weeks. Did you stop for awhile before starting tomoxin and if so did you notice any side effects. I have been off meds for about a week and wondering if anyone experiencing side effects while stopping .

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I think each person can have different side effects to each drug. My experience: I took anastrozole for about 6 months - then complained of severe hand joint pain that was about a level 7 (24/7). After ruling out arthritis, I threatened to stop taking all meds unless the drug was changed. I finally got it changed at about the 12 month mark. I was switched to exemestane and it took about 8 to 10 weeks, but my hand pain went from a 7 to a 1. The other side effects, insomnia included, I decided I could tolerate. I'm coming up on my 6 year mark. I stopped the AI at 5 years & it took me about 10 days for all my other side effects to resolve, except for the insomnia. I still get that. They wanted me to take it another 5 years (saying it would lower my re-occurrence rate by < 2 or 3%) - I declined. I'm 69 now. I agree with the person that said to weigh the effectiveness with the side effects. The AI will reduce the reoccurrence rate by 50%, but if your percentage is only 10%, then is it worth it - to reduce it to 5%? Only you can decide. It's getting that percentage of re-occurrence rate out the oncologist that is tricky - I had to really press them on this. Good luck ladies - just make sure you are fully informed about all options.

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@kewt

Hi Debbie, I was on anastrozole and having joint pain and severe leg muscle cramps especially at night. My thinking abilities also effected. I am taking a med vacation and will start on new med in a couple of weeks. Did you stop for awhile before starting tomoxin and if so did you notice any side effects. I have been off meds for about a week and wondering if anyone experiencing side effects while stopping .

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Kewt,
My doctor switched me right away and I did not have a break in between. I think they want to keep your hormones at a certain level. Thank goodness I do not have the leg pain. However, it appears that the lining of my uterus has increased and therefore I need to have a D&C. I will see my oncologist next week to see if he plans on changing medication.

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