Looking for research re: taking AI drugs vs not taking them

Posted by celestebradham @celestebradham, Jan 4, 2025

I am currently taking Exemestane. I’m 61. Took a while but I’m doing well on it (doing yoga, pranayama and acupuncture). I now have osteopenia after taking it six months. I’m trying to find research on taking AIs vs not taking. What I’m finding there is not much difference between taking and not taking. But more likely to get arthritis and osteoporosis.
Can anyone post links. .

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for sdbonniea123 @sdbonniea123

@celestebradham hi - I’m 62 also and just newly diagnosed. May I ask about your stats? (Size, type etc?). I’m considering skipping endocrine therapy. But also I think even two years on it (kudos to you!) has to have given you at least some more protection than you had before! ❤️

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@sdbonniea123

Hello,
I had IDC and DCIS in my left breast. IDC was 7mm and too small for an onco score. The DCIS was 4cm. I had a lumpectomy and reconstruction on both breasts. 15 rounds of radiation with 5 rounds of a booster(only 15 days).My cancer was at the 5 o'clock position. It was found by my mammogram.

I am not remembering what I previously wrote. I was treated at MD Anderson in Houston. My surgery was 6 hours, first removal of cancer and then plastic doctor did her magic. When my final pathology report came back one margin was not large enough and I had another surgery. The endocrine therapy was tough on on body mentally and physically.

Stay strong- ask questions and take notes, have a friend go with you to all appointments if available.
Let me know if there are any other question you have.

Look at the bottom of the Mayo site and you will see a group. We Zoom every Monday at 7pm central time. The ladies there are very knowledgeable.

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Profile picture for sdbonniea123 @sdbonniea123

@celestebradham hi - I’m 62 also and just newly diagnosed. May I ask about your stats? (Size, type etc?). I’m considering skipping endocrine therapy. But also I think even two years on it (kudos to you!) has to have given you at least some more protection than you had before! ❤️

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@sdbonniea123

I was Grade 2, No stage or some say Stage 0..

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Update: I am off all AI drugs and have tried them all. I ended up with insomnia again and that did it for me. I currently have arthritis in my left knee and fingers, and elbows . I was stage 0 grade 2. No onco score due to my IDC was 7mm and told they couldn’t do a score on tumor that size. I was on them a little over 2 yrs.

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Profile picture for sdbonniea123 @sdbonniea123

I have just been diagnosed with early stage BC. My tumor is 5 mm, ER+ 80% 2+, PR 90 3+, ki67 - 15 HER2 negative. MRI showed no lymph involvement. I just received a word that I am BRCA negative and now just waiting to schedule lumpectomy. My surgeon said she is not going to even do a lymph node sentinel check at this time because the “tumor is so small.” My question then is about endocrine therapy. I struggle daily with my physical and mental health already due to autoimmune and menopause. I already have very little energy, and depressed and have brain fog and I am extremely scared about what effect endocrine therapy is going to have on me. I understand the importance of it, but I’m weighing risk versus reward at this point. I’m 62 and neither of my parents lived past 67. If I had metastasis in 10-15 years I might actually be ok with that. Predict says my chance of metastasis are very low but it’s still really scary. I also understand I can try and then stop if I have bad side effects but I would like to hear some stories from people who opted out completely and are still doing well. Thank you!

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@sdbonniea123 I am 72 & was diagnosed in August with stage 1 ILC. My tumor was 7 mm & I also had no visible lymph involvement. I had a clean lumpectomy, a 5-day radiation treatment & I take a half-dose (10 mg) of Tamoxifen, which helps protect my bones & has not given me any bad side effects. Some women our age with early-stage breast cancer choose to forgo hormone therapy & I was nervous about it too. But I have 14 pets that need me to stick around long-term & so, this is my treatment plan! It's been a pretty easy road for me (So far! Fingers crossed!).

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Profile picture for celestebradham @celestebradham

Update: I am off all AI drugs and have tried them all. I ended up with insomnia again and that did it for me. I currently have arthritis in my left knee and fingers, and elbows . I was stage 0 grade 2. No onco score due to my IDC was 7mm and told they couldn’t do a score on tumor that size. I was on them a little over 2 yrs.

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@celestebradham my tumor was 7 mm ILC & I did get an onco score, which showed no benefit from chemo. I take a half-dose of Tamoxifen (10 mg) & have no real side effects. It's been a good solution for me.

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Profile picture for jmab @jmab

@sdbonniea123 I am 72 & was diagnosed in August with stage 1 ILC. My tumor was 7 mm & I also had no visible lymph involvement. I had a clean lumpectomy, a 5-day radiation treatment & I take a half-dose (10 mg) of Tamoxifen, which helps protect my bones & has not given me any bad side effects. Some women our age with early-stage breast cancer choose to forgo hormone therapy & I was nervous about it too. But I have 14 pets that need me to stick around long-term & so, this is my treatment plan! It's been a pretty easy road for me (So far! Fingers crossed!).

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@jmab - wonderful to hear and thanks for sharing! Sounds like you found a middle ground that works for you. ♥️

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Profile picture for Justin McClanahan, Moderator @JustinMcClanahan

Hello @sdbonniea123,

I combined your discussion with an existing discussion on whether to take medications or not, titled:

"Looking for research re: taking AI drugs vs not taking them"
- https://connect.mayoclinic.org/discussion/research-taking-ai-drugs-vs-not-taking-them/

Here, you can meet other members talking about when to take or not take medications and how to make an informed decision.

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@JustinMcClanahan - thank you. Someone mentioned a Zoom support group on Monday nights but I can’t find the info on it. Can you please direct me?

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Profile picture for sdbonniea123 @sdbonniea123

@JustinMcClanahan - thank you. Someone mentioned a Zoom support group on Monday nights but I can’t find the info on it. Can you please direct me?

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A good source for research papers is Pub Med. You can search for published research there.

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Profile picture for celestebradham @celestebradham

Update: I am off all AI drugs and have tried them all. I ended up with insomnia again and that did it for me. I currently have arthritis in my left knee and fingers, and elbows . I was stage 0 grade 2. No onco score due to my IDC was 7mm and told they couldn’t do a score on tumor that size. I was on them a little over 2 yrs.

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@celestebradham I was on AIs for 2 1/2 yrs and finally got do I could not hardly manage to get in and out of car due to hip pain. Walking was difficult. I quit it. Been off for 4 yrs. Scans are good so far 🙏🏼. Blessings to you.

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