[Hopeful]

Carolyn,

I believe you are right, that many of the changes we experience due to bc drugs are permanent, not temporary, as the doctors want us to believe. I think we should be advised of that in order to make a fully informed decision to do treatment before hand. My permanent changes include tinnitus from the Femara and a drippy left nostril from the Herceptin. My hair has also thinned considerably. I went off the AI's at exactly 3 years; I did not have chemotherapy. I get the occasional carpel tunnel like twinges that I did not have before AI's, but no aches, and my energy levels are the same as they have always been. However, the sexual side effects of the AI's have been severe. My rads onc that I still see told me that efficacy was seen for 2 years on the AI's, and she was fine with me stopping. My onc didn't put up much resistance, he said they picked 5 years arbitrarily to do the clinical trials, and that is why they rx for that duration. He said the drug companies are probably unhappy that they didn't push for ten years at the start, it would be more profitable.

I am currently 60 years old; was dx at age 52. Take care, and best of luck to you.

Hopeful