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 was sent this from my doctor. It’s long but has some good information.

REPLY

Sending good wishes to you! I wouldn’t jump to conclusions, just yet. Everyone’s experience with AI’s is individual…my advice is focus on a good “Radiation experience”…being open to using lotions and protecting your skin all you can. This is so important! (for your comfort) I’m on my 3rd AI…taking it every other day, rather than daily. It’s also something I can skip a few days on…and feel okay (like over the Holidays). Yes, it affects me, and I’m learning to manage the pain with extra rest (time to knit and read!)…I guess I’m saying, Don’t get too far ahead of yourself, and remember: everyone’s journey is unique.

REPLY
@giavida

Thank you for your information. I received a lumpectomy in November, 2024, for invasive malignant hormone + breast cancer. The cancer was caught early, and I feel good at the moment. I begin 15 rounds of radiation in a week or so. My oncologist is prescribing anastrozole beginning in March, after radiation. The side effects scare me, to be honest. I already have joint pain due to osteoarthritis. I have two knee replacements. I am 73 years old, and doing pretty well, but I do not want any additional health issues as side effects. I am researching the benefits/ risks of AI therapy. I am leaning towards avoiding the medication, and using a healthy diet and exercise, as well as meditation to keep me healthy. I understand there is a slightly increased risk of reoccurrence of cancer, however I think the risk is worth the absence of side effects. I am still researching before I talk to my oncologist- the information on this site is very helpful. Thank you.

Jump to this post

I was diagnosed exactly 10 years ago at 58. Insitu. Nuclear grade 3. I opted for mastectomy to reduce my chance of a recurrence. It was 30% estrogen positive. Not really considered estrogen driven. My onc wanted me to take AI. After reading up, the side effects etc. I opted out. She tried to convince me to just try it and if bad side effects, stop. I refused. 10 years later all is good. I'm vigilant about follow up and try to watch diet and exercise. I wasn't willing to risk getting another type of cancer to prevent recurrence. I wasn't willing to live with those side effects. I'm not telling a younger woman or any woman to do what I did. It's such an individual decision. But here I am 10
Years later cancer free without taking it. Do what works for you.

REPLY
@giavida

Thank you for your information. I received a lumpectomy in November, 2024, for invasive malignant hormone + breast cancer. The cancer was caught early, and I feel good at the moment. I begin 15 rounds of radiation in a week or so. My oncologist is prescribing anastrozole beginning in March, after radiation. The side effects scare me, to be honest. I already have joint pain due to osteoarthritis. I have two knee replacements. I am 73 years old, and doing pretty well, but I do not want any additional health issues as side effects. I am researching the benefits/ risks of AI therapy. I am leaning towards avoiding the medication, and using a healthy diet and exercise, as well as meditation to keep me healthy. I understand there is a slightly increased risk of reoccurrence of cancer, however I think the risk is worth the absence of side effects. I am still researching before I talk to my oncologist- the information on this site is very helpful. Thank you.

Jump to this post

i opted not to take AI for my stage 1 ER positive bc but did radiation.
2.5 yrs later it came back same place and now i take AI with no noticeable effects…some of us apparently escape dramatic effects which i didnt know at the outset

REPLY
In reply to @cw2024 "Agree!" + (show)
@cw2024

I dont believe this study is about recurrence. It is about using AI and Tamoxifen to prevent first occurrence cancer in women who don’t have cancer. So the 53% has nothing to do with actual cancer patients. If I’m reading this wrong please help me understand.

REPLY

Hi All,
New member here and breast cancer patient (post-meno, E+P+, PT2, PN1a, Grade 2, surgery, chemo, radiation, AIs, OncoDX 25).
I'm a researcher for a living, so I'm one of those irritating patients that researches everything to death to make sure I'm well-informed. 😀 This is offered in NO WAY as a replacement for medical advice, just to share what I've learned in my travels. As always, your mileage may vary. 🙂
I too have been struggling with the issue of AIs, and have researched the pros and cons of each (already been through Anastrozole and Letrozole, and supposed to start Exemestane next). A couple things in case they're useful:
1. Whether or not an AI is worth the tradeoff of side-effects/potential damage vs. recurrence risk is a VERY important decision for you. One tool mentioned here is the (very well researched) Predict Breast cancer tool (be SURE you're using the latest version (v3) as they update their models based on new data). It allows you to provide details on your cancer type, then lets you turn treatments on or off to see how they could impact your outcomes. In my case, the difference taking AIs would make to my risk reduction is 1% difference at year 5, 2% at 10, and 3% at year 15. For someone who's not tolerating them well and scared of damage, this'll be critical to know.
2. There are outstanding oncologists everywhere, and hopefully you have one. But be aware that in some systems, that onco has been told that the protocol is "AI or Die" and they have to relentlessly stick to that script regardless of the actual relevant data for you. For them, it protects from liability if they don't offer it, but be aware, that may not always be the final answer. (At the risk of offense, I'm so tired of videos of old, white drs. telling women to stop the complaints and just "suck it up and take the medicine." Let's see you do it.) :-Z
3. Many people (and drs.) will mention that figure of AI "reducing your risk by 53%." If that no.'s accurate, be aware of this. That's 53% of your RISK of recurrence, NOT a 53% chance you'll get cancer again. Often misunderstood (and good to scare you into AIs). So for example, if your survival odds are 97%, the AI's impact is 1.59% (53% of 3%). Of course, if you have a scary-high risk of recurrence, you may well calculate that every bit of additional help is worth the price you may need to pay. But again, just be sure you're an informed patient.
4. Finally, there's a LOT of legit research going on around other natural forms of aromatase inhibition (the function that makes estrogen in your body). Some foods (top are button mushrooms, cruciferous veggies (ex., broccoli), fermented foods, MANY more easily found online) in addition to the impact of a high fiber diet and exercise to inhibit aromatase production. Actual research you can look up to help women who can't (or don't want to) tolerate AIs. Is it the same as an AI med? Likely not, but you can sure have a big impact if you decide not to go the AI path.
I hope this is useful for anyone here. Appreciate everybody in the conversation. Kelly

REPLY
@kcalhoun

Hi All,
New member here and breast cancer patient (post-meno, E+P+, PT2, PN1a, Grade 2, surgery, chemo, radiation, AIs, OncoDX 25).
I'm a researcher for a living, so I'm one of those irritating patients that researches everything to death to make sure I'm well-informed. 😀 This is offered in NO WAY as a replacement for medical advice, just to share what I've learned in my travels. As always, your mileage may vary. 🙂
I too have been struggling with the issue of AIs, and have researched the pros and cons of each (already been through Anastrozole and Letrozole, and supposed to start Exemestane next). A couple things in case they're useful:
1. Whether or not an AI is worth the tradeoff of side-effects/potential damage vs. recurrence risk is a VERY important decision for you. One tool mentioned here is the (very well researched) Predict Breast cancer tool (be SURE you're using the latest version (v3) as they update their models based on new data). It allows you to provide details on your cancer type, then lets you turn treatments on or off to see how they could impact your outcomes. In my case, the difference taking AIs would make to my risk reduction is 1% difference at year 5, 2% at 10, and 3% at year 15. For someone who's not tolerating them well and scared of damage, this'll be critical to know.
2. There are outstanding oncologists everywhere, and hopefully you have one. But be aware that in some systems, that onco has been told that the protocol is "AI or Die" and they have to relentlessly stick to that script regardless of the actual relevant data for you. For them, it protects from liability if they don't offer it, but be aware, that may not always be the final answer. (At the risk of offense, I'm so tired of videos of old, white drs. telling women to stop the complaints and just "suck it up and take the medicine." Let's see you do it.) :-Z
3. Many people (and drs.) will mention that figure of AI "reducing your risk by 53%." If that no.'s accurate, be aware of this. That's 53% of your RISK of recurrence, NOT a 53% chance you'll get cancer again. Often misunderstood (and good to scare you into AIs). So for example, if your survival odds are 97%, the AI's impact is 1.59% (53% of 3%). Of course, if you have a scary-high risk of recurrence, you may well calculate that every bit of additional help is worth the price you may need to pay. But again, just be sure you're an informed patient.
4. Finally, there's a LOT of legit research going on around other natural forms of aromatase inhibition (the function that makes estrogen in your body). Some foods (top are button mushrooms, cruciferous veggies (ex., broccoli), fermented foods, MANY more easily found online) in addition to the impact of a high fiber diet and exercise to inhibit aromatase production. Actual research you can look up to help women who can't (or don't want to) tolerate AIs. Is it the same as an AI med? Likely not, but you can sure have a big impact if you decide not to go the AI path.
I hope this is useful for anyone here. Appreciate everybody in the conversation. Kelly

Jump to this post

Thank you for taking the time to reply. My children 28,30,32 are very research driven boys and they have been helping- as they say “DYOR” do your own research, but I swear it’s like a rabbit hole and many are done by Pfizer …. Celeste

REPLY
@celestebradham

Thank you for taking the time to reply. My children 28,30,32 are very research driven boys and they have been helping- as they say “DYOR” do your own research, but I swear it’s like a rabbit hole and many are done by Pfizer …. Celeste

Jump to this post

Really good points, Celeste. What a blessing to have your sons.
I'm just going on and on here because I so deeply appreciated when other women were trying to share and be supportive for me in my toughest times, and I'm hoping I can give something back.
We all know that research is often funded by companies who want a particular outcome (usually to sell products), so whether it's good or bad research, you feel like you can't trust it. However, there's a ton of reliable research out there that isn't funded by manufacturers (esp. with BC). We WILL one day find a cure, but in the meantime...
We also know if you get one "definitive" answer, just wait a little and you'll get one proving the opposite. 😀 😀 All you can do is listen to trusted sources, get loaded up on info as best you can then make decisions you can live with, come what may. Only God gets to know all the answers.
Yes, definitely consult with your doctor - not for them to decide but to thoroughly inform you -- it's YOUR life at the end of the day. No matter what choices you make, cancer recurrence is ALWAYS a risk. If it comes back, we won't be able to prove why, whether you did or didn't choose any given treatment (anyone who says you can is selling something). So don't torture yourself. We're just improving our odds and making sure our quality of life now AND in the future is always at the core of our decisions.
Lean into God and have faith you'll be stronger and braver than ever at the end of this ride. < 3

REPLY
@bloncape

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.

Jump to this post

I totally agree with you. I took anastrazole for one year stopping for weeks at a time to relieve the side effects. they were too numerous to list. I started letrozole and although the side effects were different they were bad as well. I had tingling in feet, hands and neck, neurologist told me after many tests that it was not neuropathy, that it was the Letrozole. I stopped it.
this is a terrible medicine given to anyone between 50-100 years old, sort of one size fits all. This is very wrong. If I were 55 years old, perhaps it would be worth it but at 76 years old, it is a miserable way to live for the next 10-15 years. I wish they would do studies for different age groups and assess if this medicine is right for everyone. all the studies are done for younger patients. My body was different at 50, at 60 and at 70. Now that I am 76, my body does not compare to my younger body, so how can this medicine be right for me now . I am confident that I will die from something else and not my stage 1 breast cancer.

REPLY
@kcalhoun

Hi All,
New member here and breast cancer patient (post-meno, E+P+, PT2, PN1a, Grade 2, surgery, chemo, radiation, AIs, OncoDX 25).
I'm a researcher for a living, so I'm one of those irritating patients that researches everything to death to make sure I'm well-informed. 😀 This is offered in NO WAY as a replacement for medical advice, just to share what I've learned in my travels. As always, your mileage may vary. 🙂
I too have been struggling with the issue of AIs, and have researched the pros and cons of each (already been through Anastrozole and Letrozole, and supposed to start Exemestane next). A couple things in case they're useful:
1. Whether or not an AI is worth the tradeoff of side-effects/potential damage vs. recurrence risk is a VERY important decision for you. One tool mentioned here is the (very well researched) Predict Breast cancer tool (be SURE you're using the latest version (v3) as they update their models based on new data). It allows you to provide details on your cancer type, then lets you turn treatments on or off to see how they could impact your outcomes. In my case, the difference taking AIs would make to my risk reduction is 1% difference at year 5, 2% at 10, and 3% at year 15. For someone who's not tolerating them well and scared of damage, this'll be critical to know.
2. There are outstanding oncologists everywhere, and hopefully you have one. But be aware that in some systems, that onco has been told that the protocol is "AI or Die" and they have to relentlessly stick to that script regardless of the actual relevant data for you. For them, it protects from liability if they don't offer it, but be aware, that may not always be the final answer. (At the risk of offense, I'm so tired of videos of old, white drs. telling women to stop the complaints and just "suck it up and take the medicine." Let's see you do it.) :-Z
3. Many people (and drs.) will mention that figure of AI "reducing your risk by 53%." If that no.'s accurate, be aware of this. That's 53% of your RISK of recurrence, NOT a 53% chance you'll get cancer again. Often misunderstood (and good to scare you into AIs). So for example, if your survival odds are 97%, the AI's impact is 1.59% (53% of 3%). Of course, if you have a scary-high risk of recurrence, you may well calculate that every bit of additional help is worth the price you may need to pay. But again, just be sure you're an informed patient.
4. Finally, there's a LOT of legit research going on around other natural forms of aromatase inhibition (the function that makes estrogen in your body). Some foods (top are button mushrooms, cruciferous veggies (ex., broccoli), fermented foods, MANY more easily found online) in addition to the impact of a high fiber diet and exercise to inhibit aromatase production. Actual research you can look up to help women who can't (or don't want to) tolerate AIs. Is it the same as an AI med? Likely not, but you can sure have a big impact if you decide not to go the AI path.
I hope this is useful for anyone here. Appreciate everybody in the conversation. Kelly

Jump to this post

Thank you. I'm on an AI but I didn't know about a higher fiber diet. That's helpful.

REPLY
Please sign in or register to post a reply.