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Aromatase Inhibitors: Did you decide to go on them or not?
Breast Cancer | Last Active: May 12, 2023 | Replies (1190)Comment receiving replies
Agree with all your points. I did see that in the UK compliance on the AI's is 6 days a week not 7, and I found one clinical trial of the elderly where they found every other day created less toxocity for those who were experiencing toxicity on the AI's. Can you send me a photo of the Femara insert? I have the generic Letrozole and never saw that language about every other day...which could have been a better outcome for me. I did try every other day with exemestane (against medical advice) but still had the psychiatric reaction.
You are right it may happen again, but my guess is that even stacking these natural AI's which I will be doing, possibly won't work. That's always a possibility. But what I"m doing to see actual data on whether or not it's working for me is I"m having bloodwork today which should show higher estrogen levels, then I'll have bloodwork a few weeks after starting the natural AI's to see if my estradiol levels have dropped. That's the real key to whether they are doing their job or not. If it shows that it's not working, then I may try Tamoxifen which is in my medicine cabinet but due to the level of endometrial cancer in my family (tamoxifen can cause that), blood clots and strokes; I'm scared to try it...
It's my journey, not for everyone and only because of the near death incidents I've had with the AI's. Again, not recommending for anyone else.
Replies to "Agree with all your points. I did see that in the UK compliance on the AI's..."
Here is the info on the insert: Note that with a half life of 2 days, taking it alternate days (or even every third day) would seem to still mean a therapeutic level. My doc okayed alternate days but I never did it.
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 to 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.
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@katehanni “ I"m having bloodwork today which should show higher estrogen levels, then I'll have bloodwork a few weeks after starting the natural AI's to see if my estradiol levels have dropped. That's the real key to whether they are doing their job or not.”
Your statement above is what I’ve been trying to get doctors to pay attention to. I had a mastectomy in 2019. No nodes involved and I didn’t have to do radiation. I started Anastrozole right away. After taking it for a year+ I asked my oncologist how does he know it is working, as there was not a baseline test of my estrogen/estradiol levels. His answer was “We just take it for granted”. I was not happy with that answer. Flippantly he said ‘I don’t even know if there is a test for estrogen levels. I’ll check on Mayo site”. He did order a blood work estrogen test. Came back “<10”. I didn’t know what that meant. Called office the nurse had to talk with doctor. Came back said that’s good for a person taking AI. I decided to take a test on my own , so saw a Nurse practitioner that focused on women’s hormones. I took a mail in Saliva test - It showed my numbers were low, so meds were doing what they were suppose to do. Unfortunately, the two test are not comparable. Both showed my levels were low like they should be. I was going to follow up when I’ve been off, but have not. I may, as I continue to not take med snd then another saliva test. Maybe.