Concerned about the side effects of anastrozole

Thanks! That's probably what my Texas oncologist meant. He seems to care about his patients, which is a welcome change. On the other hand, he has told me that he is concerned about the cancer going to places other than my breast(s). I think it is because my tumor is 95% estrogen positive and my oncotype was 29--although I didn't find that out until 17 months had passed, thanks to the Illinois oncologist who refused to order anything.

Since my surgery I learned that he also blocked a different patient from securing an oncotype on her stored tumor, which my Texas doctor has told me is illegal. I wrote to the hospital where this man practices and made them aware of his lacksadaisacal attitude toward even seeing his patients, in person (only two times in 8 months) and got no response at all. I've heard many stories since then, from people who I have known for years, of other instances where he "didn't want to get dinged by Medicare" and the patient was the loser in that equation.

If you could tolerate an AI or tamoxifen, that 95% estrogen score would mean they would be pretty effective. I am not sure why there is such variety in our responses to these meds. I am very sensitive to foods and meds but was pretty able to tolerate letrozole as long as I took a long walk every day. Mystifying.

@einnoc you can call the Oncotype company (Exact Sciences as I remember) for an explanation of your 29 score. With such a high estrogen score, there must be an explanation.

Chemo is recommended for scores over 26 but you are close, so maybe at 78 the risks of chemo would be more important than benefits.

I wish there was a way for you to manage side effects of hormonal meds. I could not tolerate generic anastrazole so switched to generic letrozole. I could not tolerate that so I tried brand name (Femara) and could tolerate that. Toward the end of my treatment I did find a generic I could tolerate but I was happy with brand name despite the cost. I wonder if that could help you. Swimming in a warm pool?!

I am 73 and get the quality of life thing! So sorry you have been so adversely affected.

ps Still mystified by your score.I had 95% estrogen score with a grade 3 cancer that also had lymphovascular invasion (lymph vessels in my case) but my Oncotype was 8. A low score does not always mean it is a "good" cancer but indicates that chemo won't be of benefit. I am 9 years out.

I have to start it in a week. I’m dreading it!

@denisesjourney123 with all respect to those who have suffered, I would just say, anecdotally, that most of the women who took aromatase inhibitors that I know did not have big problems. I would add, protect your bones if your DEXA shows osteoporosis.

My oncologist wants me to take Anastrazole as my Onco score was 21. I am post menopausal. I had my Estradiol E2 blood level tested and it is less than 5 (LabCorp doesn’t go lower than a 5 for testing this). That’s low for a post menopausal woman. Please help me understand why I should take the same dose as a woman whose E2 level may be 10 or 15 or 20. Why are we all given the same 1mg dose when our E2 levels may be all different? It seems to me that some of us are getting too much medication, some aren’t getting enough medication while a portion of us may be getting just enough. Could this standardization of dosing be causing the bad effects some women get?

absolutely!!! I had 3 months on anastrozole. I started my next 90 days on it again with a renewal of my prescription. The side effects made me quit after two weeks. What happened with the second batch?? I think it's the manufacturing. I found a lot of different manufacturers on line. I've said this before, but it's worth repeating for new people to this site. I think it depends of the manufacturer.

I took Accord brand name throughout my five years. Dry few side effects some loss of hair trouble with dishes but the. That has always been a problem. Otherwise found it to be totally bearable

I took Accord brand for five years very few side effects except diahrea but I have a bad stomach before some hair loss otherwise got through it

@vkroger what was your ER score from pathology, and your PR score?

These meds reduce estradiol below detectable levels, by eliminating estradiol produced in the adrenals.

The drug insert for Femara (letrozole) states that a 20% dose achieves that undetectable level. However I am not sure what difference the dose makes and would love to see studies. To me, either estradiol/aromatase is suppressed or it isn't. Even with a 20% dose, if effective, we would have the same symptoms since the symptoms are from estrogen deprivation, right?

That said, try switching manufacturers or switching to a different AI. I ended up taking brand name Femara though at the end I found one generic I could tolerate.

With all respect to those you know that had no problems, those of us, including myself have had horrible side effects. I was not the same person, joints hurt all the time, no sleep etc.
I am off Anastrozole for two weeks and then we will try another one..... I wish everyone the best but some have a hard journey with AI's.