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

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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Profile picture for angele2times @angele2times

@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.

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@angele2times, did you try it yet?

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Profile picture for nanato6 @nanato6

Thank you for your quick reply. I also had a lumpectomy with no node involvement. A protein beam wasn’t offered. I didn’t think tamoxifen was an option for us post menopausal gals. I’ll mention that if the other AIs are a problem. Best to you!

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@nanato6 I had stage 2 lobular cancer with no lymph node involvement. Along with the oncologist, I decided against hormone therapy due to my age, almost 80. I was also told that Tamoxifen was not given to postmenopausal women. I had 5 days of radiation, with no side effects or damage to the skin. I recently had a follow-up appointment with my surgeon. He said I would continue to have follow-ups with the breast clinic every 6 months and an annual mammogram. Good luck to you and all of us on this journey.

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Profile picture for callalloo @callalloo

Trigger Finger and heightened risk for Carpal Tunnel Syndrome are both a submenu, in a sense, of the arthralgia side effects of aromatase inhibitors. One study noted their frequency and that they might be being overlooked by patients as arthritis or general 'aging.'
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Increased Risk of Carpal Tunnel Syndrome and Trigger Finger in Women Using Aromatase Inhibitor Medications

CONCLUSION: Our study demonstrates that females who used AI medication were at increased risk of developing CTS or TF within 1 year of use. 
https://meeting.handsurgery.org/abstracts/2020/HS25.cgi
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Incidence and Treatment Efficacy of Trigger Finger in the Breast Cancer Population on Aromatase Inhibitors

Conclusions: This study demonstrates for the first time the incidence, treatment outcomes, and surgical risk factors of trigger finger in patients on AI therapy for breast cancer
https://pubmed.ncbi.nlm.nih.gov/34078170/

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@callalloo thank you for posting about these studies. I’ve been on Letrozole for nearly a year & within the prior month have developed numbness/weakness in my thumb & pointer finger pincer grasp. Over the last two+ weeks this has evolved & worsened to a pain on the underside of my thumb to pain running through the connecting tendon to my finger & my thumb’s knuckle joint “sticking” or “popping.” I need to update my oncologist of the new developments.

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Profile picture for brooklyn22 @brooklyn22

@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?

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@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?

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Profile picture for angele2times @angele2times

@rosiebee
You know your body better than anyone. Make sure you look at all the facts for you and decide what you want to do. Do your own research and bring all questions to your oncologist to discuss. DCIS is probably the "best" kind of cancer to gt as it doesn't have a high recurrence rate in most people. However, is does reoccur, as mine did 26 years later!! Sucks to get cancer !

Good luck, always consult your doctors.

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@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?

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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.

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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.

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Profile picture for angele2times @angele2times

@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!!!!

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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…

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Profile picture for angele2times @angele2times

@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.

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Thanks.

Sent from AT&T Yahoo Mail on Android

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Profile picture for angele2times @angele2times

@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!!!!

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@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!

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