Aromatase Inhibitors: Did you decide to go on them or not?

Looks like my previous reply was edited. Interesting. That hasn’t happened before.

Is raloxifine worse than the others for you or is this your first try on endocrine therapy? It seems like on systemic treatments they should be able to figure out how to help you feel better! I can laugh about myself feeling 100 because I am so young comparatively to many here. But that does not mean it is ok to feel that awful.

I was afraid of Taxmoxifen because I thought it would make me feel like I do now. So, I decided to try raloxifine. This was my first try. I didn't even go through hot flashes because I felt so emotionally horrible and got right on estrogen after my experiences of feeling crazy around age 48.. I knew it would happen when i was deprived of all estrogen and here I am.

Are you on any estrogen therapy now? I'm already 80. I'd like to have these last few years be happy ones and my estrogen therapy ruins chances of that.

oops, I meant to reply to Chris in the above.

You did, it’s all good. I am not, I took tamoxifen and anastrazole combined total 15 years. I am 55. So my decisions will be based on different goals than you. I believe the years I have gained is worth the grief I have endured. I cannot say that I will always be willing to endure the next and the next treatment,but right now I still have a sense of humor about things. My doctor says inside I am a 70 year old woman, so I guess that means I only feel 100. Lol

That is how I felt. I took Anastrozole for 2 years - stopped taking about 3 weeks ago. After about 7-10 days started feeling back to normal. Well normal for a 68 yo 😊

Many of us have very few side effects. I would try it, though yes, with stage zero DCIS you may have more latitude than those with more serious cases. Noone can say.

When I was diagnosed because of the location of the tumor we started Anastrozole six weeks before surgery to shrink the tumor. I was never told if that was successful or not but was excited after surgery and a clear PET scan and looked at this drug as an "easy" way to manage my cancer since I opted out of radiation and chemo that was suggested as "preventative". We talked about staying on it for 10 years, to "make sure". I overlooked the side effects in the beginning, insomnia (I would sleep when I could) joint pain, digestive issues, etc. but after I had taken it for 18 months my blood pressure had jumped over 40 pts., I was diagnosed with osteoporosis, I was in such terrible pain with my joints that I ended up in PT. At that point I decided at the age of 76 to quit the medication as quality of life is more important to me than the number of years on this earth and I have been off of it for 7 months, it is the best I've felt in two years. It is a personal decision, not entered into lightly, I am trying to take each day at a time, I am scheduled for a mammogram soon and pray that all will be clear. If not, I will deal with it then. All the options had similar or worse side effects so I wasn't interested in "experimenting". Stay tuned, may your journey be one of peace and confidence in the decision you make being the right one for you.

@whr - your reply brought tears to my eyes. I woke this morning pretty achy and hip & feet pain. I was wondering how long it takes of being off of Anastrozole before the achiness goes away. I’ve been off 1 month, the overall fogginess & not feeling like myself has pretty much gone away but aches are still there everyday. Some days better than others.
I am so very happy that you are feeling so much better. There is hope for me I pray. I see my oncologist at end of month & I hope he does push me hard to take something else because I don’t think I want to. I believe my risk is quite low. Blessing to you, whr and may you continue to feel great and in good health. Thank you for your comment - I needed to hear that!