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

Discussion
Comment receiving replies
@katehanni

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...

Jump to this post


Replies to "You are welcome. And As @auntieoakley is pointing out I am absolutely not recommending anyone stop..."

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.