Concerned about the side effects of anastrozole

So sorry that you got that very rare side effect. Maybe it was an one-off? Do you dare try one more time?

I am scared to not be on the medicine. When I called my oncologist’s office they told me to not take the medicine till my appointment. I am going to ask my oncologist to change me to another medication. Anyone on exemestine? What side effects have you had? I would appreciate any feedback.

It is not always the medicine causing a reaction, but sometimes the fillers. I switched from anastrazole to letrozole and when I still had a sensitivity, switched to another manufacturer and finally to the brand name, to which I had no reaction. You find an aromatase inhibitor you can take but I encourage you to try different manufacturers- and/or brand name- before giving up. (There is also tamoxifen....)

Do you know what your recurrence risk is? If it's very low, your oncologist might be open to your skipping the anti-hormone drugs. I don't know if you had any genomic testing done but some of the tests, e.g., the Oncotype DX, yield a recurrence risk score based on the cancer tissue submitted to the company. Knowing your risk number can be very helpful. I tried anastrozole and did not tolerate it at all but have a low risk of recurrence so discontinued the drug.

No hair loss but alot of joint pain.

Yes, I definitely plan on trying another medicine. I think I will ask my oncologist to make the prescription for brand name only.
Thank you both for your replies!
God Bless you both!!

My risk level after 5 years of taking Anastrozole my risk level is 11%. Advised to continue taking 🙁

I don't know if this makes any difference but when I look at numbers that are predictive, e.g., the odds that something will happen, I sometimes look at the obverse as well for perspective. When I first had a cancer diagnosis followed by lumpectomy every recurrence number took on a disproportionate importance in a certain sense and I treated them differently than I would have any other predictive number. I work in finance and economics so I'm used to looking at numbers, assessing their importance and putting them in the perspective with respect to other data points.

This may not affect your decision in any way but one way to look at this is that an 11% chance that X will happen is also an 89% chance that it won't. I think recurrence numbers are so imprecise and problematic and emotion-inducing in the first place, that it helps to see look at the non-recurrence number as well.

Another way to think of it is that if 1 in 8 American women get breast cancer, someone who has not had breast cancer has a 12.5% chance of developing it and 11% is lower than that though admittedly far from the 0% that we all would love to be assured of.

@marker I wanted to continue my aromatase inhibitor, letrozole, after 5 years but I did a test called the Breast Cancer Index, which tells you two thing: risk level and whether extended meds are of benefit.

I got high risk, but no benefit from further meds.

Maybe ask your doc about this test. I found it myself and my doc is now using it and it is also now in the NCCN guidelines.

Just adding I would have been so happy to continue taking letrozole. I felt safe while on it.

As for side effects: I am helping a friend who has to do chemo. She would be so grateful to "just" do hormonal meds.