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

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@sequoia

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.

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Replies to "Kate, I so appreciate your information on Natural AIs. I’m noting info. I was on Anastrozole..."

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...