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.

rosa1935 | @rosa1935 | Oct 12 9:36am

In reply to @kayleenchilds "Do you take it in the morning or at night? Thank you for sharing!" + (show)

I take it in morning x

celestebradham | @celestebradham | Oct 12 12:44pm

In reply to @kayleenchilds "Hi~ thanks for sharing your experience! I have wondered if taking the drug in the morning..." + (show)

For me- time of day didn’t seem to make a difference. It has made me to know my body better. I journal or jot down how I’m feeling, and tracking what I’m doing- things I need to do daily, 5x a week 2x a week. Mentally and physically it’s working.
DON’T be hard on yourself !!

Zebra | @californiazebra | Oct 12 1:50pm

I’ve been on Letrozole for almost 4 years and will continue. I have some off and on knee and shin pain from it but not unbearable. It’s probably contributing to hair thinning but I take two the meds that do that too. I think it’s responsible for dry skin. Not causing any issues I can’t live with and I typically don’t do well with meds. Best of luck.

lizr5678 | @lizr5678 | Oct 12 1:56pm

Thank you for the post. I am 76 now. July 2023 I had a lumpectomy for HR2+ and lymph nodes were clear. I am on anastrozole one year now and say to self, that the side effects are not that bad. Some brain fog, lightheadedness and low energy. Because of a high calcium score, I have seen a cardiologist and have moderate atherosclerosis. Rather than a statin, doctor would like me to try Repatha. I am researching and of course looking into coverage with insurance.

1ek | @1ek | Oct 12 3:28pm

If you have issues with other AI’s, ask about Tamoxifen instead. It is not offered to post menopausal women, but depending on your specifics, it can be almost as effective as AI’s (it can have other side effects - increased risk of blood clots & uterine cancer).

Thing is, you have to ask about it - the guidelines Oncologists use don’t suggest it for post menopausal women.
I declined AI’s because I have osteoporosis, and I didn’t want the loss of bone density that AI’s cause. As soon as I asked my oncologist about tamoxifen she said it makes sense in my case.

mistymar | @mistymar | Oct 12 4:46pm

In reply to @jesusmaryjoseph77 "I have taken Anastrozole for two years. Then started taking cholesterol meds Ravastatin and my muscles..." + (show)

I was put on rosuvastatin (Crestor) at the start of all this so it was difficult to determine what caused my problems - surgery, tests, stress, etc. I had severe muscle cramps, a bad episode with left knee (3 wks after surgery, tested, NOT a dvt) weakness. First chemo was horrible but then I stopped rosuvastatin and had minimal problems with next 2 infusions. Dr wanted me back on it so I did and last infusion just about killed me - actually sent to cardiology because of symptoms but I stopped rosuvastatin and most side effects went away. I won’t take another statin. Particularly with these drugs my concern is doubling up on medications with same side effects could be crippling.
I did find an article in the Journal of Clinical Oncology comparing Anastrazole and exemestane. Percent of patients with side effects were almost the same (18.6% exemestane, 18.9% anastrazole). Also anastrazole more affects bones but while exemestane does spare the bones, higher percentage with cardiac effects - atrial fib, clots and strokes. Am currently researching letrazole. The question of how to decide is difficult but because of elevated Ki 67 and positive oncotype, I do feel safer thanking an ai. But then EVERYTHING has side effects so we just have to take what we are most comfortable with.

rosa1935 | @rosa1935 | Oct 13 7:15am

In reply to @kayleenchilds "I am only 8 days off Anastrozole and feel SO GOOD! Have you looked at raloxifene?..." + (show)

I ended up in hospital on a holiday to Spain January 25th 2022 with pulmonary embolism and docs there said it was Anastrozole and bisphosphonate, thst I was taking at the time that caused the clots. My oncologist, when I returned home, said totally untrue but never put me back
On the bisphosphonate!! That’s another reason I got rid of him as my oncologist

jesusmaryjoseph77 | @jesusmaryjoseph77 | Oct 13 9:53am

In reply to @mistymar "I was put on rosuvastatin (Crestor) at the start of all this so it was difficult..." + (show)

Thanks so much for the input. I now can discuss more with the doctor. 😊

kayleenchilds | @kayleenchilds | Oct 13 9:55am

In reply to @rosa1935 "I ended up in hospital on a holiday to Spain January 25th 2022 with pulmonary embolism..." + (show)

That must have been terrible to happen on your holiday! My dr says raloxifine has a better record as far as bone loss goes, which is one of the reasons I am considering it. The other AI’s are known for causing osteoporosis. If you are on bisphosphonates and Anastrozole are you having side effects? I do worry about taking meds with the same or similar side effects. I take simvastatin as well and haven’t had a problem with it.

rosa1935 | @rosa1935 | Oct 13 10:12am

In reply to @kayleenchilds "That must have been terrible to happen on your holiday! My dr says raloxifine has a..." + (show)

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🤣