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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Profile picture for judithkk @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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Alternative dosing regimen for exemestane
https://jamanetwork.com/journals/jamaoncology/fullarticle/2802824 NB: although estrogen was lowered, study did not look at tumor outcomes, e.g. metastases, local recurrences, etc. on alternative dosing. In other words, the higher dose may be doing more than just lowering estrogen--and whatever that "more" is, is what's preventing the cancer from coming back. BTW, I'm neither an MD nor a scientist.

Alternative dosing regimen for letrozole
https://pubmed.ncbi.nlm.nih.gov/26667449/ Same caveat as exemestane study.

Alternative dosing regimen for tamoxifen
https://pmc.ncbi.nlm.nih.gov/articles/PMC11101371/ Not sure if tumor recurrence was the same as with full dose.

I've never found an equivalent study for anastrozole

Also, if I have misunderstood any these studies, please correct me!

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Profile picture for judithkk @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've always been told that if a woman is past menopause, she will go on an Aromatase Inhibitor, not Tamoxifen. So I'm wondering if there's a reason that your doc wants you on Tamoxifen? Maybe it's because of side effects and other medical conditions?

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Profile picture for peggydobbs @peggydobbs

Alternative dosing regimen for exemestane
https://jamanetwork.com/journals/jamaoncology/fullarticle/2802824 NB: although estrogen was lowered, study did not look at tumor outcomes, e.g. metastases, local recurrences, etc. on alternative dosing. In other words, the higher dose may be doing more than just lowering estrogen--and whatever that "more" is, is what's preventing the cancer from coming back. BTW, I'm neither an MD nor a scientist.

Alternative dosing regimen for letrozole
https://pubmed.ncbi.nlm.nih.gov/26667449/ Same caveat as exemestane study.

Alternative dosing regimen for tamoxifen
https://pmc.ncbi.nlm.nih.gov/articles/PMC11101371/ Not sure if tumor recurrence was the same as with full dose.

I've never found an equivalent study for anastrozole

Also, if I have misunderstood any these studies, please correct me!

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Thanks for posting.

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Profile picture for carolina8 @carolina8

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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I had that popping and eventually pain about 20 years ago, from my Osteoarthritis. The Thumb Orthopedist said I didn't need surgery, it was a slipping joint, and just to wear a special thumb splint every night to bed, to hold it in the proper position. During the day if you need it. I'm still wearing it only at night & never needed surgery! Go on Amazon and enter in the search bar: "Comfort Cool Thumb CMC Restriction Splint." Not that expensive. Hope it works for you!

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Profile picture for jardinera25 @jardinera25

I had that popping and eventually pain about 20 years ago, from my Osteoarthritis. The Thumb Orthopedist said I didn't need surgery, it was a slipping joint, and just to wear a special thumb splint every night to bed, to hold it in the proper position. During the day if you need it. I'm still wearing it only at night & never needed surgery! Go on Amazon and enter in the search bar: "Comfort Cool Thumb CMC Restriction Splint." Not that expensive. Hope it works for you!

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Thank you for the suggestion. Will try it

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Profile picture for katrii @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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You sound almost identical to me. I did chemo radiation and surgery and am on my 3rd AI also. It being, Exemestane. I'm supposed to take it daily, but have decided to take it every other day. It does mess with your emotions and my memory is awful. I've been on this for a couple years now and would like to stop. I have osteopenia, but had that before the cancer hit. Hope everything turns out well for you. Please keep me posted!

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Profile picture for sally484 @sally484

You sound almost identical to me. I did chemo radiation and surgery and am on my 3rd AI also. It being, Exemestane. I'm supposed to take it daily, but have decided to take it every other day. It does mess with your emotions and my memory is awful. I've been on this for a couple years now and would like to stop. I have osteopenia, but had that before the cancer hit. Hope everything turns out well for you. Please keep me posted!

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So thankful you posted! I’ve become quite impatient lately with my inability to focus and remember. So much so that I “declared” I was taking the next month OFF, to see if I felt different. I have not received good feedback in this from my Nurse Sister-in-Law! Do you know the % or Stats we are dealing with? Why, really put ourselves through this?(other than the obvious—no more cancer!) I’m 71, and have just finally retired. I’m seeking solid numbers to persuade me to make the best decision!

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I was on a anastrozole for six months. Every bone in my body hurt I couldn’t focus. I was a mess. I went off and taking my chances. I go back Mid summer for another mammogram. Fingers crossed that I will be OK.🙏🏻 best of luck to everyone. It’s a very difficult decision.

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I had a lumpectomy at 79, chemo and radiation 5 days a week for 6 weeks because I had some lymph node involvement. I refused AI drugs. I recently saw my oncologist for my every 6 month check up and my blood wok showed no return of the cancer. I am now 83. My GP was amazed when he did my latest EKG and said my heart is perfect. I just returned from a trip to Cancun with my family. I had a wonderful time and I haven't gone through any hell like I did with my emotions in menopause, which is why I refused AI.

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