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. .

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

I would also love to see research on taking AIs or not. Having been through diagnosis, lumpectomy, stage one a, 7MM, single foci, ER positive PR positive HER2 negative, I made the personal decision to have radiation only. I am 68 and I'm choosing quality of life over the apparent small decrease AIs will provide to recurrence risk. My genetic risk factor is extremely low as well. It's a risk but one I am willing to take. I would not make this decision if I was not so early stage with all the right indicators of low risk of recurrence. It's such a tough decision.

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There is research out there. Ask your doctors to give you specific studies with dates when they were completed to discuss the pros and cons. Not everybody can take an aroma taste inhibitor for a variety of reasons. It’s difficult to read the medical jargon for the average patient, but you can ask your oncologist to explain to you the pros and cons, depending upon your type of cancer, how your odds of survival improve or not with the use of an AI medication. In my case, with ER positive and PR positive breast cancer taking an AI inhibitor lowers my risk for a recurrence of breast cancer. Doesn’t lower it by 100%, but it is done all or nothing decision. My breast cancer team and my oncology team are the best sources I have found for information on issues like this. There is no one-size-fits-all out there. But depending upon your type of cancer and a host of other variables, they should be able to give you some indication of where your risk of recurrence will be if you can take an AI versus what your risk would be if you do not take an AI. The date in the five years I have been a breast cancer. Patient is increased significantly so what might’ve been a recommendation five years ago may not be the recommendation they would currently give.

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@katrii

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 didn't stop taking it all together, but did start taking it every other day. So far, I still have the same trouble with my brain fog, but it may take awhile to leave your system. I haven't talked to my dr. about doing the "every other day" thing, but will next time I see him. I'm a little afraid of stopping altogether as it does stop the estrogen. However, my sister in law had the same cancer and it made her so tired, she laid down in the street and fell asleep! They got her up and onto the sidewalk. She stopped taking it and is doing fine and that was quite a few years ago. She is in her 80's now.

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@sally484

I didn't stop taking it all together, but did start taking it every other day. So far, I still have the same trouble with my brain fog, but it may take awhile to leave your system. I haven't talked to my dr. about doing the "every other day" thing, but will next time I see him. I'm a little afraid of stopping altogether as it does stop the estrogen. However, my sister in law had the same cancer and it made her so tired, she laid down in the street and fell asleep! They got her up and onto the sidewalk. She stopped taking it and is doing fine and that was quite a few years ago. She is in her 80's now.

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My tribe! I take Exemestane every other day, per dr’s advice…and thank goodness retired a couple months ago. I’m only 71, and have always had a sharp memory. Now, however I am daily starting stories, and forgetting 3 sentences in WHY I was telling it, or where I was going with that! It’s almost funny. I refuse to panic, but it’s fairly disturbing. I’ve been on it for 6 months, so 4 1/2 years to go???

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I’ve been on Exemestane since July 23. I niw take it every second day but unfortunately, Anastrozole, ruined my back. I was on that fir 2 years. Ladt oct I went on hols for 4 weeks and stopped taking b the exemestane. I had never felt so well and had no problem when walking. I was afraid to stay off it completely so I started taking b it again when I came home. Yesterday, I got letter confirming my 4th mammogram, after breast cancer, anc it’s on 12 May. I’m happy, but extremely nervous, thst it’s early this year. Last year it was in June. The worry is never ending. I’ve uploaded a screenshot of a new medication here in UK. It’s for your information.i always, even if it’s not for me, pass on info because it coukd help someone. Keep strong💪💪💪

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@wyowyld

I would also love to see research on taking AIs or not. Having been through diagnosis, lumpectomy, stage one a, 7MM, single foci, ER positive PR positive HER2 negative, I made the personal decision to have radiation only. I am 68 and I'm choosing quality of life over the apparent small decrease AIs will provide to recurrence risk. My genetic risk factor is extremely low as well. It's a risk but one I am willing to take. I would not make this decision if I was not so early stage with all the right indicators of low risk of recurrence. It's such a tough decision.

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I’m just sending you this for your info. It was released here in uk couple days ago. Stay strong 💪

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Capivasertib (Truqap) combined with fulvestrant is (recently) approved in the US for certain types of advanced breast cancer.
https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.35238

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@katrii

My tribe! I take Exemestane every other day, per dr’s advice…and thank goodness retired a couple months ago. I’m only 71, and have always had a sharp memory. Now, however I am daily starting stories, and forgetting 3 sentences in WHY I was telling it, or where I was going with that! It’s almost funny. I refuse to panic, but it’s fairly disturbing. I’ve been on it for 6 months, so 4 1/2 years to go???

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I know how you feel! My memory is awful! Sometimes I think it's getting worse and sometimes better. Who knows? I forget easily...........where I put something, or things that used to come easily to me,no longer do. I am 71 and I suppose it could be my age, but I have my druthers. It's very frustrating. Thank God for my husband who helps me alot!!! For people that don't understand.............I hope and pray that you never have to deal with this!!

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