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

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...

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 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 💗

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.

My Doctor said the FOR is a true diagnosis Fear Of Recurrence. Something we will have to live with but hopefully it doesn’t try and control us. Hugs to everyone🤗🤗🤗

Katehanni: Thank you for your transparency and information. I also have PTSD as a result of sexual abuse beginning as a toddler. That memory had been repressed until I had my radiation treatments in late September; then - Wham! (79 years old now.). My oncologist was concerned about my taking Letrozole because of past suicidal ideations. I’ve started working with a counselor. Began Letrozole November 1, 2021; so, just 20 days ago. So far, ok.

On my own, and without a medical consultation, I’ve also been taking Turkey Tail Mushroom extract for the past several weeks. I liked the reports I read about its use in Japan and some usage here. We’ll see how the combination of Letrozole, counseling, and Turkey Tail Mushroom is working for me.

I see my oncologist in April. I’ll also check out the VA PTSD website. Thanks, again.

Wow this is great information. Thank you so much! I wonder if that possibility is only for advanced breast cancer? I could do that AMA I suppose since there is no dialogue with my Oncologist regarding dosing or anything related to my side effects experienced.

My oncologist was okay with alternate days and I had grade 3. Stage 1. I continued with daily full dose though because for me side effects were tolerable.

@windyshores I’m so glad that your side effects are tolerable. Positive thoughts that that continues. How long has you been on med?

That's exactly what I'm living with. FOR. I wish I could stop that tape running in my head as I know that being peaceful and present is important for creating an environment where cancer won't thrive.