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 catlover2020 @catlover2020

You may want to watch Barbara O'Neil on YouTube.
Google and research.
I'm 66 active and couldn't imagine being miserable and decided no. No nodes involved, estrogen receptor. Mastectomy with hysterectomy 2 months later. Lots of plastic taken out of my home. Cotton only clothes. My husband is a messy person. I couldn't be hurting all day in a messy house. Research I'm happy with. Company coming to town, cleaning cause I love the reward. And I'll add organic food only, stored in glass not plastic. Had a cousin die yesterday, I told her palb2 mutation is heredity. My daughter also had DMX .
I eat no red meat, I use DIM, wild yam cream and drink soursop tea.

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Barbara O'Neal is incredible.
Question: Does your breast cancer feed off progesterone?
If so, please check the yam cream for progesterone or call or email Barbaras company in Wisconsin.
If your cancer is feeding off progesterone, it WILL help with osteoporosis BUT it Could actually be feeding your cancer.
Wild Yam cream may be completely different than progesterone cream as most p. Cream is Synthetic. Just a suggestion.

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Profile picture for robbihm @robbihm

Everyone’s story is different. I’m halfway through listening to “The Metabolic Approach to Cancer” by Dr. Nasha Winter and really trying to get at the underlying causes of cancer. I’ve (mostly) removed bad oils, eat organic wherever possible, and have almost eliminated gluten. My goal is to blend traditional approaches (surgery and radiation for me) with natural prevention. I’m a work in progress. My oncologist is not supportive of me shunning the AIs, but I have a 5% chance of recurrence and the AIs would take that to 2.5%, but at a large cost to quality of life. I don’t take anything but a statin and I just don’t want on that slippery slope of taking the AIs and then five other things to combat the symptoms- not to mention hair loss, etc…. I don’t take the decision lightly, but given all my research, I feel empowered I’m on the right path for me and my particular circumstances. (My cancer - invasive, ducal carcinoma - er+/pg+ is slow growing so chemo was inapplicable since it targets rapidly growing cells). No one can get us to 0% chance of recurrence so we all do the best we can.

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Amen. Amen! So affirming!
The BROAD Medical field Includes alternatives. Most Medical Schools lack training outside of pharmaceuticals and are lacking training on the Natural side.
With that said, WE decide what we want in our bodies. The choice IS ours.
And yes, there Are viable options.
Our bodies ARE designed to heal themselves. God provided all that we need. He also gave wisdom to those who have helped in making discoveries with His creation.
Pharmaceuticals are helpful. But we have seen the mass corruption to the point many distrust them.
The choice is Ours as to what is put into our bodies.
But as patients, we EXPECT our doctors to Listen to us, respect our questions etc. and give us more than 10 minutes of “Their” time.

I had such a doctor, a cardiologist, who recently passed away.
He listened, he read the info I gave him WITH ME in his office and we DISCUSSED things together and sometimes it was 40 minutes.
Yes, he even considered my cancer when I questioned him about the possible effects of staying on one of the medicines he had prescribed.
He said “ lets look at the probabilities because thats what WE need to see.”
WE came to a conclusion that staying on that med could be more detrimental to my cancer, and my life than the risk of a stroke.
Hard choice but one made TOGETHER.
Gasp! 40 minutes?
Yes. He would do that for any patient that inquired.
Heres whats extraordinary;
all his patients WAITED for their time With him.
Yes, we would wait 30-40 minutes late in the waiting room because we KNEW while We waited, his current patient was in discussion with him getting the info and assurance They needed.
The choice is OURS for what we put into our bodies.
And the choice is Ours when choosing a doctor.
Choose one who sees you as Partners in your healthcare.
Be seen. Be heard. Be respected.

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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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I am so grateful for you sharing these studies, I could almost cry.
Thank you.

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Profile picture for sequoia @sequoia

@jillianb when I was prescribed Anastrozole following my mastectomy, I had taken for a year with my oncologist just asking mundane questions how ya feeling etc. When I asked him ‘ How do you know this AI is even working- as there was not a baseline of my estrogen level before I started AI and no testing following a period of time taking.’ My oncologist’s answer was “We just take it for granted “. OMG! I was out of there to never go back to him. That is not the correct response! Doctors need to be more in tuned with their breast cancer patients that they are prescribing meds to - IMHO

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My doctor loves the word “empiric/empirically”. They empirically know the AI’s work, they empirically give AI’s to all breast cancer patients, the empiric fuse is 1 mg of Anastrazole even though they don’t do blood work to monitor you. I have her a big NO THANK YOU to the AI’s. No one is giving me a med that they cannot prove that I need and cannot prove is or isn’t working. There is a blood test to check your estrogen level lower that 5 but they won’t order it.

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Profile picture for lilacs777 @lilacs777

You can run Predict calc yourself here https://breast.predict.cam/ altho keep in mind this is just 1 calculator and there are other models, I dont think anyone (including the docs) really know which is the most accurate. The benefits of an AI are greater than tamoxifen for lobular than ductal (in general) from what I was told. However, as mentioned above, it really comes down to a solid discussion with your onco. If your onco has not yet directly told you the percent benefit in survival you would get with an AI, then they need to do that. If they refuse, get a new onco. They should be open to an honest discussion about risk/benefits of the cancer recurrence vs other disease and life expectancy so you can make the best decision for your situation.

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My 70 year old friend got breast cancer 27 years ago. She had a single mastectomy and refused the AI. It just came back in the other breast but it took 27 years. She is extremely glad that she didn’t take an AI. She lives with no regrets.

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There is a real need for more research into the lived experience of people taking AIs. Let’s hope there are some researchers out there who will take this on.

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Profile picture for vkroger @vkroger

My doctor loves the word “empiric/empirically”. They empirically know the AI’s work, they empirically give AI’s to all breast cancer patients, the empiric fuse is 1 mg of Anastrazole even though they don’t do blood work to monitor you. I have her a big NO THANK YOU to the AI’s. No one is giving me a med that they cannot prove that I need and cannot prove is or isn’t working. There is a blood test to check your estrogen level lower that 5 but they won’t order it.

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I tend to be like you, want to hear the evidence. I do a lot of research and have found things they didn't bother to tell me, or research. The biggest was that women with cardiovascular issues (mine was hypertension) shouldn't take an IA. I did for 4 months and got "Labile Hypertension," unpredictable, huge spikes and lows, still plaguing me. I feel like I gave up heart health for this experiment.
Patty

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Profile picture for vkroger @vkroger

My doctor loves the word “empiric/empirically”. They empirically know the AI’s work, they empirically give AI’s to all breast cancer patients, the empiric fuse is 1 mg of Anastrazole even though they don’t do blood work to monitor you. I have her a big NO THANK YOU to the AI’s. No one is giving me a med that they cannot prove that I need and cannot prove is or isn’t working. There is a blood test to check your estrogen level lower that 5 but they won’t order it.

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We have to take charge of our own treatment/no treatment. Good for you. I have changed oncologists and saw the new one last week. He's great!! And the patient portal is current and I find that comforting. It even gives his email address, a first for me with any of my doctors over my 86 years of life. Good luck. Sending good karma your way.

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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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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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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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