Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?

Annie Oakley was taken everywhere I looked and my little nephew called me auntieoakley when everyone was laughing about it. It works. I currently am not working, as my work is meeting dependent and I am caring for two family members and not really wanting to hop on a plane during covid-19.

I tapered off mine. Half dose every day then half dose every other day and so on.

Go to AMazon and look up SuperSmart Anti-Aromatase Inhibitor which has multiple AI's (written in French so I had to look them all up) in addition, Turkey Tail mushroom (PSK is the active ingredient which is prescribed in Japan and they have a 4% lower mortality rate from cancer than the US does. White button mushrooms. Green Tea Extract and Stinging Nettle Tea which is a natural AI.

Then the dietary changes: Alkalyne water and alkalyne foods as opposed to acidic (starving cancer). Moving to raw, plant based diet (avoiding red meat that often has hormones in it). Meditation, relaxation and diet changes as well as melatonin which is specifically an aromatase inhibitor for hormone positive BC, and Vitamin D3 which helps synthesize and boost. D3 appears to be a big factor as both my regular Medical Oncologist and my Naturopathic Oncologist recommended.

I think I'll be the guinea pig here and I'll let you all know if my estradiol levels drop after I have taken all of this for awhile. I'm a data driven person so although there are no big AI trials for these natural products, I still think stacking them up will add maximum impact for those AI's and we'll just have to see if I'm right!

I’m excited with this new data I’ve been off Anastrozole (1 month) & will be following your info. I Ser my oncologist end of month. I’m sure he will suggest trying a different AI. Will see - bit I would like to stay off of it long enough to see if my pain goes away or subsides. Thank you.

Tell them you should get a reward for taking it, the reward should be time off for good behavior. Lol

I replied on another thread that there are ways to improve tolerance of an AI. Try a different manufacturer or brand name, or switch to another AI. Take every other day or take a half dose (the Femara insert says a 20% dose is effective).

I don't understand the suggestion for a natural approach. Side effects of AI's are from estrogen suppression. If the natural approach works, you would get the same side effects. If you don't get the same side effects from estrogen deprivation, then I would think the natural approach is not working.

The first thing I discussed with my naturopathic Medical Doctor (in AZ that's a thing) is the bloodwork needs to show me, before and after starting the natural AI's, that my estradiol levels are lower after being on them for a couple of months. If you have a copy of the Femara insert, I would love to see it. I'm only aware of the difference in compliance standards in the UK and EU; not the US. First of all it's not just a natural AI approach, it's an entire lifestyle change. Avoiding acidic foods and creating an environment in my body where cancer cannot live (see the books on Radical Remission and Starving Cancer). Basically making my body and mind healthier and boosting my immune system as well as the hope that the AI's will block cancer. It's a very full throated approach I'm taking which has changed almost everything in less than a week about how I eat, drinking reverse osmosis alkaline water, moving to a raw vegetable diet, etc. Avoiding Red meat due to the hormones given to most dairy animals which also get's into cheese/milk etc.

Going this route is much more difficult and life changing than a doctor prescribing a pill which is the silver bullet for 56% of women, the rest of us are left without an option in the regular allopathic community.

Also I'm fully aware that the generics and brands have different side effects. The problem where I live is that I the medical care here is a joke and I cannot get my onco to prescribe all of the different AI's. I tried that with exemestane and brand aromasin and my onco is so short staffed have no dialogue and no way to get him to prescribe me all of the different generics or brands...I'm trying to get an appointment at Mayo which is 2.5 hours from where I live, but I get no response no matter if I call or through the online appointment app. I need a second opinion and if you can provide me a copy of your Femara info showing a 20% dose is allowable, I may be able to try that under a different doctors/Mayo doctors orders. Otherwise, where I live, it's not even a footnote as an option for me. It should be if it's in your Femara insert, but it's not. I cannot afford to have another suicidal event due to the AI's. That's a bit counterintuitive isn't it? Taking something to save my life that for me has these dangerous side effects?

And the only option with my onco is take them as prescribed once a day, or don't. There are no other options offered than tamoxifen.

To be clear, I told my oncologist in the beginning when the Anastrozole was failing me dramatically; that I would try all of the AI's before giving up or moving to Tamoxifen which I'm not a great candidate for either. So I did try them all before making the somewhat radical decision to try naturopathic MD's who in AZ are licensed to prescribe regular medicine as well as natural and oriental medicine. I've never seen this type of system before but glad it exists because the medical care here is abhorrent.

So in my case I did exhaust all of the AI's and couldn't tolerate them. All my onco said was, ok then your done? I'll be "lost to followup" if that happens and more at risk than if I can get any sort of estradiol mediation going with the natural AI's. I'm not kidding myself as to efficacy. I don't believe the natural AI's are as powerful as the prescribed AI's but I don't have other options!

I posted this to another discussion, but I think it bears repeating. Apologies for the duplication.

I follow all the discussion in the Breast Cancer group. I'm most impressed with the critical thinking you do and that you work with your health care teams, research information, and weigh risk and benefits for solutions that work for you. While you share your experiences and what you learn, you do not tell others what to do. Thank you!

That said, I would like to post some thoughts and cautions.

When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. Here is an article from Mayo Clinic that might interest you about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

Always discuss any new treatment, changes in dosage or alternate possibilities with your oncologist.

A few things that many of you have already stated clearly that I would like to underline:
1. While you share the diagnosis of breast cancer, each person's journey is different. How a person responds to treatment will be unique to them.
2. What works for one person may not for someone else.
3. Not everyone experiences side effects from aromatase inhibitors and/or tamoxifen. The people who experience no or mild side effects are less likely to post to an online discussion like this one.

MOST IMPORTANT
Keep this disclaimer in mind https://connect.mayoclinic.org/blog/about-connect/tab/disclaimer/
"All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community."

Did you try Evista (raloxifene)? It's a SERM (selective estrogen receptor modulator), as opposed to an AI. I had problems with the AIs, too, but raloxifene has been a breeze in comparison, plus it has the added effect of strengthening bones. It's expensive, however, depending on your drug plan.