Is there anyone that had estrogen positive cancer, without use of AI?

@auntieoakley i think it works, but one size fits all doesn’t seem correct. I find it interesting that Femara insert states 20% dosage is effective. I have not seen this , just what was posted. I’ll research this. I don’t upset anyone, but I fine think the dosage ‘should’ be one size fits all. Thanks Chris for being a great mentor. Hugs

There are other situations where a new drug is recommended at a standard dose, and, over time, studies show that a lower dose can be as, or almost as, effective as the original one. And the 'usual dose' size is reduced to reflect that. [I wrote a study on the pharma industry and am basing this on that practice as explained to me by senior managements.]

Another point is that some drugs are so critical, and can be life-saving, that the goal us to get the drug on the market and avaliable for all at a dose believed to be universally-beneficial. And then monitor and tweak the dose as more results accumulate. It's an imperfect balance but the goal is to get viable drugs at least available ASAP.

Are you referring to an OncotypeDX result or score? Only asking as there are other Oncotype tests as well and they can get confusing.

I doubt that dose makes any difference. The goal is to stop your adrenals from producing estrogen. A full dose will reliably do that. I was just making the point that you can start off by alternating days, or even continue that way, according to my doc. If you look at the half life of an AI and how long it takes to reach steady state, you can figure out that alternating days probably means a steady state high enough to be effective. Again, my doc concurred.

Nevertheless I took a full dose. I just posted on another thread that the frequent discussion here of side effects sometimes seems to forget the cancer risk that prompted us to consider these meds in the first place.

I would/did endure many side effects to feel safer from a recurrence. That said, I understand some really cannot continue.

With hormonal drugs, I would speculate that it takes some time for the body to adjust so I would always hope people would give them time. Side effects, in some cases, lessen.

I am grateful for my Femara (letrozole). After 5 years the Breast Cancer Index test told me that I no longer benefited but I would have loved to have done 7-10 years if effective- even with bone loss and joint pain.

Here is the text of the insert:
Pharmacodynamics
In postmenopausal patients with advanced breast cancer, daily doses of 0.1 mg to 5 mg Femara (letrozole) suppress plasma concentrations of estradiol, estrone, and estrone sulfate by 75% to 95% from baseline with maximal suppression achieved within two-three days. Suppression is dose-related, with doses of 0.5 mg and higher giving many values of estrone and estrone sulfate that were below the limit of detection in the assays. Estrogen suppression was maintained throughout treatment in all patients treated at 0.5 mg or higher.

Letrozole is highly specific in inhibiting aromatase activity. There is no impairment of adrenal steroidogenesis. No clinically-relevant changes were found in the plasma concentrations of cortisol, aldosterone, 11-deoxycortisol, 17-hydroxy-progesterone, ACTH or in plasma renin activity among postmenopausal patients treated with a daily dose of Femara 0.1 mg to 5 mg. The ACTH stimulation test performed after 6 and 12 weeks of treatment with daily doses of 0.1, 0.25, 0.5, 1, 2.5, and 5 mg did not indicate any attenuation of aldosterone or cortisol production. Glucocorticoid or mineralocorticoid supplementation is, therefore, not necessary.

No changes were noted in plasma concentrations of androgens (androstenedione and testosterone) among healthy postmenopausal women after 0.1, 0.5, and 2.5 mg single doses of Femara or in plasma concentrations of androstenedione among postmenopausal patients treated with daily doses of 0.1 mg to 5 mg. This indicates that the blockade of estrogen biosynthesis does not lead to accumulation of androgenic precursors. Plasma levels of LH and FSH were not affected by letrozole in patients, nor was thyroid function as evaluated by TSH levels, T3 uptake, and T4 levels.

If there has been anything posted in this thread that is factually inaccurate, it would be great if you could correct it.

I agree with you that one size does not fit all, or should not fit all. @windyshores talks more at length about this. In all the years I took these therapies, not one of my doctors ever tested my estrogen levels. These are not new drugs so it seems like if 20% letrozole is effective that a lower dose should be considered by doctors, especially for patients like you who tried but had too many side effects.
The doctor I had would never have even considered it. I had my ovaries removed and still had 5 years of tamoxifen, before switching to anastrozole. I was in my 30s at the time so there was still way too much estrogen flowing. Lol
These are just my personal experiences, I would hope that they can serve as a point of hope that you can get a better experience. If I had known then what I know now, I would have advocated for myself more.
I know you tried endocrine therapy but I don’t remember which drugs you tried, did you try letrozole? How long ago was this?

@auntieoakley , thank you for your comment. I was prescribed Anastrozole and took it for 32 month (2 & 3/4 yrs) At around 2 years I started having hip pain , debilitating pain & I felt about 80+ yrs old - I’m 69. Very active & it was affecting my quality of life from morning to night. I could barely get in and out of my car. I did PT, had X-rays, exercised through the pain the best I could. Walking which is always been my saving Grace , was too painful for me to do. I stopped Anastrozole mid April. My hip pain is gone. I feel like my old 😊 self again. It is a very personal decision to take or not take med. it’s not an easy decision. My hubby and I discussed at length. Research and read studies etc as well as posts on this forum. Both sides w/ an open mind. I feel it is a good decision For Me.
I will see my oncologist in August and will let him know my decision. I am pretty sure he will be ‘upset’ w/ me. It is his job, ‘blinders on’ , to keep me cancer free or lessen the chance of reoccurring cancer. I understand that, but he needs to treat each patient as an individual, and I don’t believe he is. We will see.
I so appreciate the comments and caring posts that’s everyone offers. We are in this together and can learn so much from each other. ❤️

Not every person can take every drug. I remembered that you had pretty bad issues with one of these. It isn’t like you didn’t give it a try. I would hope your doctor understands your point of view about quality of life. I would hope he would continue to monitor and make recommendations as needed. The doctor I have now is amazing and he makes recommendations and then let’s you decide what part of that works or doesn’t work for you.
Wouldn’t it be nice if they were all like that.

Regarding dose for AI's: if the med is effective at, say, 20% of usual dose, meaning it suppresses estrogen produced by the adrenals post-menopause- then wouldn't the side effects be the same regardless of dose? Are all the side effects from estrogen suppression?

My oncologist did say that I could do alternate days to reduce side effects, but I still wonder how a reduced dose would reduce side effects when estrogen suppression would happen with alternate days as well.