Aromatase Inhibitors: Did you decide to go on them or not?

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.

I feel your pain. If I get a pain anywhere, my first thought is is it cancer. I think we have cancer PTSD and I don’t know if it will ever get better; it may just be our new norm, unfortunately, but you are not alone. Sending peace and 💗

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.

Well, I find it very interesting that I received a call from a pharmacist from Anthem Insurance today who pointed me to the Veterans Affairs website (veterans often have PTSD) and they have a whole list of natural AI's that are mycological that they prescribe to their patients. They even give statistics and note the 13 clinical trials. As an example Turkey Tail Mushroom, which is prescribed in Japan for all cancer patients (along with chemo, radiation and surgery) the active ingredients are PSK and PSP when taken 1 - 3.6 grams per day for 1 to 36 months have a 9% absolute reduction in 5 year mortality from cancer. The effects are more evident in patients with breast, gastric or colorectal cancer...

I really like this blog spot. Some of the others will not allow any talk of natural AI's which unfortunately I'm relegated to due to lack of tolerance or toxicity to the current AI's. This blog is the best! I am worried that we moved to an area that has a horrible level of healthcare, no capacity due to rapid influx of residents and lack of medical care...I'm hoping now that I've sent the request for appt at Mayo in Phoenix that I can get in soon. I just noticed that I'm losing weight again without trying and just feeling unwell generally and I don't know if it's detox from the Letrozole or if I've had cancer appear as a distant recurrence (had mammogram/ultrasound follow-up last week and nothing showed up)...it's just so unnerving when you've had cancer it's like for me everything now has a different color to it i.e. I assume it's cancer not a common cold or headache or UTI...anyone else feel that way?

Yeah I just had an 1.5 hour conversation with Anthem Insurance's Pharmacist assigned to Geriatric Cancer Patients who have psychiatric diagnosis. She agreed that my decision to stop the AI's was the right one, mostly based on what happened in my brain...even though I had EVERY side effect listed as common, and a few of the serious ones as well. We discussed the bloodwork for testing estradiol levels and she agreed with that as well. She's not giving me advice so much as knowledge that she's sharing from internal resources that we, the public, cannot see! She's able to look up all of my natural AI's and tell me if it's effective, unproven or ineffective which is super helpful in terms of my confidence level. I was hoping to get into Mayo Clinic down in Phoenix but no response yet to my query.

@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.

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.

I think we all feel this way, and in my area the healthcare is mostly a joke. I travel an hour or three depending on what we need for almost all care. The first several years I was afraid of everything but not wanting to see a doctor for anything. Now, I am afraid of everything and the doctors don’t want to see me. Go figure. My oncologist is amazing, an hour away.
I believe we can all take whatever works best for us, but we do have to be careful about what we promote here. I was very surprised at how many people read these threads, who do not ever comment. We wouldn’t want someone to read our post and think it was ok to take something not helpful or even harmful to them. It is our responsibility to think of the community as a whole.

Thank you Kate. Information is never more than o want to know. 🙂 I do not have an Onco Type number, so I really do not have a feel for my risk of reoccurrence. When I asked oncologist, he just said they did not do it. 🤷‍♀️ Knowledge is power and we have to advocate for our own health and well being. I was concerned that the same dosage of Anastrozole (1mg) was given to everybody - a stage 4 mastasized (sp) cancer patient & one that had DCIS, no nodes involved and had a mastectomy. Also a 250 lb woman snd a 150lb woman. Seems like the treatment/doses should be different, but all cancer patients are treated as a One Size Fits all. 🥲 I pray for you. Please keep us informed as to how you are doing. Thank you Kate for the information. It appreciated.