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

Kate, I so appreciate your information on Natural AIs. I’m noting info. I was on Anastrozole for 2 years and a month ago stopped, due to pain and overall serious ill feeling. A few week off the med the ill feeling lifted but the pain is still with me and a week ago I developed a trigger thumb. How long / over what time had your tried the different AIs?
Blessings to you & thank you for the information. This blog/forum truly is the best.

You are welcome. And As @auntieoakley is pointing out I am absolutely not recommending anyone stop their AI's and try the natural ones...unless they make that decision on their own and due to total intolerability of the three AI's which I tried all three of. The Anastrozole, which btw my mother took successfully for 5.5 years, was no issue for her. I have a different metabolism and a unique history which caused serious issues for me. So to directly answer your question I tried Anastrozole generic, Exemestane Generic, Aromasin Brand to see if that would be any better and the last trial was Letrozole. Anastrozole I was on only one week and the side effects were unbearable, and by unbearable I mean every side effect noted, I had including a mental breakdown where I had suicidal ideations which if you knew me you'd know is not my personality at all. But I do have PTSD from an assault I suffered in 2006 and have been being treated for it since then, and my psychiatrist told me that he had never had a patient go on any AI's that could mentally tolerate them. I unfortunately fall into that category...he's even skeptical that I may have the same issues with the natural AI's which I have not started yet as I"m allowing the Letrozole work out of my system first.

The Exemestane and Aromasin were nearly identical issues for me. I was on fire and doing great for 2.5 weeks on each of them, then suddenly out of no where was staring at a shotgun and imagining not being alive would be better than how I was feeling. So then my oncologist (who get no feedback from or dialogue with, mostly due to COVID 19 and his lack of staff who are either out with COVID or who have quite medicine altogether due to the pandemic (Arizona doesn't have great mask wearing or vaccine compliance) so we have very little healthcare here and Oncology is no different at this time. The letrozole was fantastic for about 2 weeks, then again I had the sudden occurence of suicidal thinking.

We are all different and respond differently to these AI's. Some people have no notable side effects and I wish, literlly would sell my right arm to have been able to tolerate them. They are truly the silver bullet for hormone positive breast cancer if you can tolerate them. In my case I cannot. So I'm exploring the natural AI's, I will give them a go and hopefully the side effects are less and I don't have those feelings again. It's super scary for my family and myself to even consider that I might kill myself, but equally as scary that I cannot tolerate the three AI's offered to me so I may end up with a recurrence or metastasis sooner than my oncotype dx score would indicate if I could take AI's or Tamoxifen.

The other thing to note is that my risk of distant recurrence with the AI's is 4%. Chemo was not beneficial in my case would have done more harm than good. My tumor was 1A, Grade 3, Ki67 of 34% so strong aggression/proliferation but when I called my radiologist and asked him what my percent of recurrence would be if I could not tolerate the AI's and he said that they normally double the score so my odds are possibly 8-10% of a recurrence in the next 9 years. I think I can live with those odds on the natural AI's or without if I can't tolerate them.

One thing I truly wish the medical industry would do is track those with cancer who are "lost to followup." It's very hard to make an apples to apples comparison of recurrence risk if you don't know how many people lost to followup actually had a recurrence.

Now to your point about the joint pain. The letrozole made every bone and joint in my body hurt. When I stopped almost 2 weeks ago I thought it would subside but it didn't so I am taking Calcium and Omega 3's and vitamin D3 all of which help and it is getting better now...

Probably more than you asked for but wanted y'all to have the full picture because I don't want anyone to make a decision about their medication based on my situation!!!!

Love you all...

Well I just came up with a thorough list, with citations and documents which I uploaded here:

Yes and you will see two key things: A whole host of supplements that are natural AI's and an entirely new diet meant to starve cancer by creating an environment in the body where cancer cannot survive. An alkaline Diet as opposed to an acidic diet, primary whole raw vegetables and alkaline reverse osmosis water. My hope is that by stacking up all of the natural AI's together, as my naturopathic MD has done, that will give a better aromatase inhibition than taking nothing since I cannot tolerate the AI's. The list will have a few citations (sorry I'm slammed at work) and will contain all the natural AI's plus natural immune boosters and dietary changes.
SuperSmart Natural Anti Aromatase Support: The AI's in that supplement which is prescribed in France, and effective according to the French cancer mortality tables are: See the attached photo of the label for this product. It's in French so I'll break down what each thing is:
- Chrysin: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7063143/ , DIM https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059820/ ,
- GrapeFruit Extract: https://www.nature.com/articles/s41598-021-86599-z Zinc,
- Vitamin D (which in low levels causes increased breast cancer risk) https://themenshealthclinic.co.uk/using-natural-products-to-control-oestrogen/ there are citations within this UK article,
- "liberal Green Tea and Stinging Nettle Tea" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074486/,
- Flax Seed (cited in above link) and many more see the label attached. Then whole raw flax seeds ground up (aromatase inhibition) for the best quality.
- Melatonin for my type of breast cancer: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778514/#:~:text=Melatonin%20reduces%20the%20development%20of,inhibits%20aromatase%20activity%20and%20expression.
- Turkey Tail Mushroom, who's active ingredient (PSK) that is prescribed to every cancer patient in Japan and hey have 4% lower mortality from cancer than the US. The clinical trial was small but here it is: https://bastyr.edu/news/general-news/2012/11/fda-approves-bastyr-turkey-tail-trial-cancer-patients
- White button Mushrooms as AI's:https://pubmed.ncbi.nlm.nih.gov/16740737/ I know there is a clinical trial but this article is just affirming what the prior trials showed. Grape Seed Extract: https://pubmed.ncbi.nlm.nih.gov/16740737/

For those who cannot tolerate an aromatase inhibitor, have your tried a different manufacturer,, or a brand name version? I could not tolerate Arimidex or generic Femara but could tolerate brand name Femara. I later found a generic I could tolerate- different manufacturer.

Another approach would be alternate days, or a half dose each day. The Femara insert actually says that a 20% dose works.

I don't understand how natural inhibitors would be any better in terms of side effects. I mean, if they work, then they are also suppressing estrogen and you would expect the same side effects from no to low estrogen levels, right? If there are no such side effects, then I would think they are not working.

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.

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.

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.

@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.

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.

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?