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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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gigibuilds | @gigibuilds | Jun 25 7:48pm
In reply to @auntieoakley "In my humble opinion, what you are missing is actual communication with your doctor. In this..." + (show)
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In my humble opinion, what you are missing is actual communication with your doctor.
In this digital age of everything happens in an instant, and conversation doesn’t really happen, this is further exacerbated by overbooked and overburdened doctors offices.
It seems as if they are pretty much giving you everything from soup to nuts in your treatment. This makes sense since there are multiple ways to target this cancer. If this is true, I might ask why, it might be that there is something in your cancer that is a little worrying.
I took a boatload of endocrine therapy and I don’t view as debilitating.
I am not crippled in any way. Yes there are some arthritis issues but I am have always been very active and it would be expected. I am still very active and ride horses and take care of my property.
My thoughts are that I would not risk going through all of that again, not even by 1.6% based on someone else’s experience with a drug.
Did you talk to your oncology team about this worry?

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Yes, I have spoken with my oncologist about my concerns. She agrees that 1.6% isn't a huge benefit. I'm looking at it from a cost-benefit analysis and the cons outweigh the pros.

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anatomary | @anatomary | Jun 26 4:18pm
In reply to @gigibuilds "I am a very active 65 year old with good bones and not overweight. Diagnosed with..." + (show)
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I am a very active 65 year old with good bones and not overweight. Diagnosed with IDC - stage 1 with a grade 1 tumor. Had 6 rounds of chemo, a double mastectomy and am currently going thru additional 14 rounds of Herceptin because I was triple positive. Doc wants me on an AI for 5 years but computer program shows it helping me with a recurrence by a whopping 1.6%. It doesn't make sense to me to take such a debilitating med that will cripple me for 1.6% more of protection. My doc seems to be in agreement with my logic but continues to push AI. What am I missing in her argument?

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I don't think you are missing anything in her argument; other than AI is what we currently have for treatment - and recommend. All the drugs recommended, or in use, have gone through clinical trials and deemed safe for use by our Food and Drug Administration (FDA) - BUT we don't have full data on long term effects for 10-20 years out from initial use. So folks, we are de-facto building new information for the next generation of BC patients as we go through our individual journeys. I am grateful for the survivors ahead of me because their info helps me make an informed decision about choices (drugs, treatment plans, BMX or not). BC is so individualized, and LCIS being only 10-15% of BC, so under-studied we are almost shooting in the dark about what type of effects any treatment will have on our overall physical, and mental, health.

It is a good thing you did a deep dive and found AI drops occurrence by whopping (LOL) 1.6%. I agree with you that that is not much for any associated future side-effects. The 1.6% is probably an average which means some people had a lower probability of recurrence and others had a higher. Nonetheless, at 1.6% I would probably decline and live my best life without continued treatment.

BUT keep in mind that the computer program used (or software calc ran), or any research article you read on longterm prognosis and effects of a drug, is only one of probably several. There could be differences in averages, or percentages, reported because each research project (even if on the same topic) has a different pool of persons/patients participating; and this will shift rates/percentages of recurrence, etc. reported between projects. So one research article, or software program (this to has a margin of error because the program was feed data generated by one, or possibly several, research projects) is not enough to make any decision. There is not typically a wide range of difference between data sets and possible outcomes...otherwise the drug would not be approved by FDA for use. But there is always individual responses to any drug that may or may not contribute to larger issues down the line.

You could look for another software package to run your individual risk for recurrence - or do a deeper dive into research on AI and longterm effects. OR if this is the software of choice believe the stats, know for some recurrence is higher and others lower, and go from there. But you're right 1.6% reduction is not much...and maybe not worth the risk for possible side effects - debilitating or not! Good luck with the decision process...

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brightlight66 | @brightlight66 | 2 days ago
In reply to @bloncape "I think the 53% of reduction, to which this article refers, is prevention in women who..." + (show)
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I think the 53% of reduction, to which this article refers, is prevention in women who are at risk for developing breast due to genetic factors or family history, for example, not for women who already have breast cancer. I have read that the risk reduction benefit from taking an aromatase inhibitor (AI) for 5 - 10 years after being diagnosed with ER+ breast cancer and after having had surgery and possibly radiation is 40% to 60%.
I was told that my chance of recurrence was 12% without taking an AI.
If I took an AI for at least 5 years, my risk would be between 7.2% and 4.8%. I had MANY side effects from anastrozole, the worst being severe depression and an overall poor quality of life. I was encouraged to try exemestane, but I declined. The hope of potentially reducing my risk of recurrence by less than 5%, was not worth feeling so awful for 5 -10 years, so I decided to stop taking anastrozole after 2 1/2 months. That was 4 years ago. I will be 75 in May. So far, I am doing well. I walk every day and eat a good diet.
I am not suggesting that anyone stop taking these drugs. It's a difficult, personal decision. Just know that it is your decision to make based on your situation and how you feel. I wish you all well. Try to be at peace with whatever decision you make. Sending hugs.

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@bloncape How was your risk of recurrence assessed? I'm trying to find out for myself and the Predict Tool seems to measure survival, but I'm not clear. Trying to make my own decision about quitting aromatase inhibitors, so any information will be helpful. Thanks.

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brightlight66 | @brightlight66 | 2 days ago
In reply to @gigibuilds "I am a very active 65 year old with good bones and not overweight. Diagnosed with..." + (show)
Profile picture for gigibuilds @gigibuilds

I am a very active 65 year old with good bones and not overweight. Diagnosed with IDC - stage 1 with a grade 1 tumor. Had 6 rounds of chemo, a double mastectomy and am currently going thru additional 14 rounds of Herceptin because I was triple positive. Doc wants me on an AI for 5 years but computer program shows it helping me with a recurrence by a whopping 1.6%. It doesn't make sense to me to take such a debilitating med that will cripple me for 1.6% more of protection. My doc seems to be in agreement with my logic but continues to push AI. What am I missing in her argument?

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@gigibuilds Which computer program determines risk recurrence? Trying to figure out my own risk and appreciate any helpful information. Thanks.

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gigibuilds | @gigibuilds | 2 days ago
In reply to @brightlight66 "@gigibuilds Which computer program determines risk recurrence? Trying to figure out my own risk and appreciate..." + (show)
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@gigibuilds Which computer program determines risk recurrence? Trying to figure out my own risk and appreciate any helpful information. Thanks.

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@brightlight66 I don’t know the name of it but ask your doc. My current oncologist is not a fan of it - says it’s old and out of date. Sorry I couldn’t be more helpful

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jardinera25 | @jardinera25 | 1 day ago

https://pmc.ncbi.nlm.nih.gov/articles/PMC7460580/
This NIH research article from 2020 discusses at LENGTH how " AIs aren’t side effect-free; frequent adverse events involve the musculoskeletal system, in the form of bone loss, AI-associated arthralgia (AIA) syndrome and autoimmune rheumatic diseases." It compares various estrogen supressing drugs. I myself went off two AI drugs since it affected cardiovascular blood pressure tremendously; the following drug, Fulvestrant, a SERD, affected my musculoskeletal system with severe pain, so I only took it for 3 months.

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