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

Posted by celestebradham @celestebradham, Jan 4 10:38am

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. .

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@elliej

Yes, great factual response. We have to understand the statistics as they pertain to us, individually. I refused AI treatment after Stage1 treatment including surgery and short term radiation. Factored in: stage, age, Onco Typing, current bone density, all factors being weighed. Risks and side effects outweighed benefits. AI treatment has multiple side effects. Do loads of research as it pertains to You. God Bless😘

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I made the same decision. ILC Grade 1, stage 2, .7mm tumor, lumpectomy clear margins, no lymph nodes involvement. Genetic score 5, so very low risk. Had 5 days of the more intense radiation. Reducing my chance of recurrence from less than 3 percent after radiation, (according to oncologist), was not worth giving up the quality of life I have and want to continue at this point. I am 68. I wholeheartedly accept the fact it is a risk, but one I choose to take. Good luck to everyone!!!

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@irenegoody52

Im in the same boat. I have decided not to take estrogen blockers due to almost your same issues. My radiation oncologist felt i do not need them because of my age, 72, and my tumor was small was removed and with radiation he felt my reoccurencr was less than 5%. I also went go oncologist and she thinks i should take 20 mg of tamoxifen but with all the side effects, depression etc. Im not going to. They seem to tell everyone the same thing. I have also read studies where 10 mg of tamoxifen is just as effective with lower side effects. I know its confusing and these are hard decisions to make.

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I am a 71 year old woman who has always enjoyed good health. I had a very small tumor and subsequently a lumpectomy. I had no cancer in lymph nodes or in margins. Next week I begin 5 days of radiation on partial breast only. My oncologist doctor has prescribed me 20 mg of tomoxifin to begin after radiation. I have done extensive research on this drug and will not be taking it as prescribed. Studies that I have read indicate that 10 mg of tomoxifin every other day or 5 mg daily produces the same results and far less side affects. I am planning to start 10 mg every other day but will switch to 5 mg daily if need be. 20 mg seems to be the standard prescribed without taking into consideration that every woman’s cancer may be different. For me it is a personal decision after extensive research from several countries. I am comfortable in my decision as at 71 years old it is about the quality of my remaining years.

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I have been taking Anastrozole for five years. Very few side effects . Fatigue and minor joint pain. Now I am having pain and a pop when I bend my thumb. I try not to but it’s hard not to. Could this be from the drug. My oncologist told me to see an orthopedist. I certainly don’t want surgery very upset

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@judithkk

I am a 71 year old woman who has always enjoyed good health. I had a very small tumor and subsequently a lumpectomy. I had no cancer in lymph nodes or in margins. Next week I begin 5 days of radiation on partial breast only. My oncologist doctor has prescribed me 20 mg of tomoxifin to begin after radiation. I have done extensive research on this drug and will not be taking it as prescribed. Studies that I have read indicate that 10 mg of tomoxifin every other day or 5 mg daily produces the same results and far less side affects. I am planning to start 10 mg every other day but will switch to 5 mg daily if need be. 20 mg seems to be the standard prescribed without taking into consideration that every woman’s cancer may be different. For me it is a personal decision after extensive research from several countries. I am comfortable in my decision as at 71 years old it is about the quality of my remaining years.

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I applaud your decision. My course is very similar to yours, and with the intent of being as thorough as possible, I did 20 rounds of Radiation, and am on my 3rd AI…Exemestane, every other day. I see my memory flying out the window! I am so emotional, showing up as anger toward those I love. I’m also 71, and this is simply “not me” as I know me! I’ve decided to take a whole month off of the AI, and see if I return to “me” as I know me to be. It’s just not worth it to lose myself. My family needs me…I need me!

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@katrii

I applaud your decision. My course is very similar to yours, and with the intent of being as thorough as possible, I did 20 rounds of Radiation, and am on my 3rd AI…Exemestane, every other day. I see my memory flying out the window! I am so emotional, showing up as anger toward those I love. I’m also 71, and this is simply “not me” as I know me! I’ve decided to take a whole month off of the AI, and see if I return to “me” as I know me to be. It’s just not worth it to lose myself. My family needs me…I need me!

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I absolutely understand and agree with your decision as well. I just don’t believe that this is a “one size fits all” approach in prescribing these drugs. I am confident in my decision. Best to you as well!

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@lj22

Hello Kelly and all, I'm new to this forum. I'm 60, had lumpectomy surgeries for Stage 1, Grade 2, HR+, Her2-, IDC + DCIS, and doing radiation now (4 wks). Having a serious dilemma about whether to take hormone therapy or not. Fearful of SERMs (I have PCOS, and my risk of uterine cancer is already higher than general population; plus heart, eye health risks, etc.), and regarding AI's, I already have osteopenia (serious level on lumbar spine).
Trying to better understand the Predict model, which if I understand correctly, predicts survivorship, not recurrence. I can't understand from this model how many of these patients may have had a recurrence, and then may have needed further surgery (lumpectomy, or mastectomy), radiation, hormone therapy, etc. but survived. Running my stats in Predict looks very good regarding survival, but it doesn't seem to be telling me about my odds for recurrence? Please correct me if I am wrong.
I was informed by my oncologist that if I took an AI (Arimidex), I should also take Zometa to combat bone loss. Has anyone followed this route and had success or issues with it?
Ideally, like anyone, I'd like to avoid hormone therapy altogether, due to my personal risks vs. benefits given my decent chances of survival, but I don't fully understand recurrence odds without hormone therapy. Is there a valid tool or study for recurrence, or am I missing something in the Predict model? Thank you for all input. LJ

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I am currently on Anastrozole ( Arimidex) but struggle with bad myalgia and depression as side effects. I don’t like to admit defeat in things so will press on but my quality of life is quite severely impacted. I feel when I reach the two years in mark I will have a rethinking discussion with my oncologist ( she is quite receptive to the quality of life issues these medications raise) as I feel suddenly ‘old’ after 11 months of treatment. It is interesting and supportive to find this forum even though I am UK based.

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Thank you for sharing your experience. This is precisely why I'm so concerned about starting hormone therapy for my lower-risk situation. I'm fearful that the slight benefits may not outweigh the risks. Of course, there are risks with any of the paths forward. I'm glad you have an oncologist with whom you are comfortable, that is so important. Best of luck to you.

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Positive note- started Letrozole 2/6/25. No side effects yet! I am almost 67 years old and quite active, want to continue that path! Good luck!

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@reflector75

I am currently on Anastrozole ( Arimidex) but struggle with bad myalgia and depression as side effects. I don’t like to admit defeat in things so will press on but my quality of life is quite severely impacted. I feel when I reach the two years in mark I will have a rethinking discussion with my oncologist ( she is quite receptive to the quality of life issues these medications raise) as I feel suddenly ‘old’ after 11 months of treatment. It is interesting and supportive to find this forum even though I am UK based.

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I choose not to take them. I'm 66 and want the most out of life. I had no nodes involved. Got a total hysterectomy 2 months after going flat. I take depression medicine daily. I feel great. I do DIM, wild yam cream, and soursop tea daily. December I'll know if all is OK. I trust God and prayers.
YouTube Barbara O'Neil she is amazing. Best to you ❤️

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@judithkk

I am a 71 year old woman who has always enjoyed good health. I had a very small tumor and subsequently a lumpectomy. I had no cancer in lymph nodes or in margins. Next week I begin 5 days of radiation on partial breast only. My oncologist doctor has prescribed me 20 mg of tomoxifin to begin after radiation. I have done extensive research on this drug and will not be taking it as prescribed. Studies that I have read indicate that 10 mg of tomoxifin every other day or 5 mg daily produces the same results and far less side affects. I am planning to start 10 mg every other day but will switch to 5 mg daily if need be. 20 mg seems to be the standard prescribed without taking into consideration that every woman’s cancer may be different. For me it is a personal decision after extensive research from several countries. I am comfortable in my decision as at 71 years old it is about the quality of my remaining years.

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I was prescribed the same. I took had clear margins and nodes involved. I agree, that's doctors go to amount. I am 66 now, 65 when diagnosed. I researched and found out I do not want to take it. I got total hysterectomy and started DIM,
I feel super healthy. I'm a very active person. Research on Claritin has shown some positive results. Stay strong 💪

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