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

Life with Cancer is very scary. I was diagnosed with DCIS Breast Cancer in Jan. 2024. I had a Lumpectomy in March of 2024, followed by Radiation. I then started Anastrozole. My back hurt so badly that I couldn't walk without a cane and still had pain during my cruise in Nov. 2024. After seeing two specialists, receiving cortisone injections in my back three times, and doing everything the doctors prescribed, I finally decided that the Anastrozole was the cause of my pain. After 5 1/2 months on Anastrozole, I stopped taking it. My life became "normal" again. I have now been off Anastrozole for 18 months, and I'm pleased with my quality of life. I will continue to have my yearly Mammograms and yearly appointments with my gynacologist.

I believe that my mother took DES while pregnant with me, and an OB/GYN in 1976 strongly believed that I was a DES Daughter. My mother had HER2 positive breast cancer in 2006, had a Mastectomy, and her Breast Cancer returned in 2015. Verzenio was prescribed for her. She died of Breast Cancer in 2016. I am angry that Breast Cancer is still a problem in 2026, and that more companies aren't addressing all of the issues. DES problems are now evident in the 3rd generation Grandchildren, and, hopefully, will not be apparent in the 4th generation!

@sboston1
Hi !

Try Propel a water supplement, with electrolytes, works very well with Exemestane, I have had little to no side effects from the Exemestane so far, on since end of March. Try your current drug with that hopefully that will help.
Yes, it is terribly unfair that we have to endure further trauma, after all that we have been through. Hope this works for you.

@judyj4321
Yeah, tell me about it! They haven't done anything to fight breast cancer to get rid of it. Just more ways to treat the symptoms and no concern for the side effects of the drugs they have given us. We will just have to power through as best we can! I had cancer in 1998 and it returned in 2025 with HER2+ and HER2 negative in same tumor. Same side breast this time with mastectomy, and chemo, and now hormone blockers and Herceptin, no light at the end of this!!! YUCKY!!!!

@angele2times So, so sorry to read this! i believe we need more women in the medical and pharmaceutical fields working towards solutions fo Breast Cancer! Take care of yourself and be your best advocate!

Thanks.

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@angele2times DCIS in 2002, now ILC, mastectomy tomorrow. After researching/discussing/praying/
etc, I told my doc nothing more after tomorrow. I’m 80 and have no plans to live forever, But I respect you for your decisions and hope for the very best for you!
Ever heard of “pinkwashing”? Google it…

Everyone makes their own choice. I will pray for you, but you understand God makes this decision for us. He can not keep us from earthly things. I have to ask you one question?> Do you think you work here,is done?
I never heard of pinkwashing , But I just read today that Creatine helps with neuropathy, muscles, bones, and cancer. And cancer from recurring. I don't have the website address available to me yet. But, when I do, I will send it to you. I was on Creatine for a long time, I felt good and no bone aches. PLUS I checked it out with my Oncologist and she said she was using it!! So, I know I am safe in telling you this. It comes in powder format,
100"% Monohydrate . Walmart sells it and so does CVS. This will help you. I know this!! I respect you, in your decision, and you are a tad older than me. But, my work is not done here. Good luck and I will add you to my prayer list!! Perhaps it will make your journey easier.

Just found info on *AGEs, which accumulate in tendons and fibers as we age causing stiffness and pain. I went further requesting correlation between AGEs intake and the issues AI users have with tendons, collagen, and musculoskeletal pain. My thinking: by managing AGEs intake you may be able to reduce some of the side effects - although this will definitely not eliminate side effects.

“It is biologically plausible that lowering dietary AGEs could be beneficial for connective tissues given the associations between AGE burden and tendon degeneration, but there is no direct research linking low‑AGE diets to prevention or treatment of aromatase‑inhibitor–related arthralgia or tendinopathy in the current material.”

Unfortunately the correlation between AGEs and AI has not been researched. Which probably means there is no financial benefit in researching this topic and/or the population served is low on the research hierarchy.
But if I were taking an AI (I’m on tamoxifen) I would maybe try a low AGEs diet just to see if it reduced aches and pain in joints.

*AGEs: Advanced Glycation End Products
One example is the burnt edges of grilled meats, or excessive browning of sugar on baked/roasted food. Lots on info on the web on AGEs.

@angele2times hi I just read your reply if I may ask were you on tamoxifen or anything ? And then the cancer returned after 26 yrs?

@brooklyn22no I wasn't on anything from 1998 to 2025. Yes, the cancer did return after 26 years. I had a lumpectomy and lots of radiation inn 1998. That seemed to have worked and something radically changed, and I don't know what. I walk everyday, and go to the gym twice per week. I left weights which I really enjoy. Why do you ask?