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

FYI
I was diagnosed in March 2018. Surgery showed stage1, close to stage0, ER+, PR+, Her-, no cancer cells in 2 lymph nodes, no cancer cells in marginal tissue...had tumor oncotyped and scored a 19, which lead to 20 radiation treatments and a hysterectomy. After all that, my oncologist also wanted me 3-5 years on an AI. Tamoxifen was a no go due to blood clots 40 years ago due to BC pills, the other two..Holy shit! The side effects....I was 64 when diagnosed I had/have 4 young grandsons and 4 young great nieces and I am/was an active person in love with the outdoors. I gave up the meds, have a wonderful honest oncologist and personal doctor. So you ask what do I do for checkups? I have a mammy once a year, and a, I believe, breast MRI with dye every year. I am hoping with having some sort of breast checkup every 6 months...anything new will be caught.
I am not ignorant nor closed minded to the fact it may appear elsewhere, but you know what, that's another story.
My best direction to anyone is trust your personal doctor and oncologist, but remember you live it or are living it, they are not. Be honest and open and knowledgeable. Blessings up, Girls!

I also had a mom and sister with breast cancer and did the genetic testing. Everything was negative including BRCA but had 2 mutations of unknown significance, one for melanoma, which I've had and the other was breast cancer. I was sent to an oncologist who prescribed AI. I read all the side effects including bone loss and at 68 years old don't want to risk it. And of course for all the side effects there's another drug. I don't take any prescription meds at this time and don't want to go down that rabbit hole! What I do instead is watch the Zeno estrogen, meaning hormones in foods and BPH in plastic water bottles, exposures to chemicals ect. After extensive research I believe these hormones are the cause of cancers, not natural estrogen. I have decided to try that route of elemiating them from my diet and also exercising. I eat Whole Foods including grass fed beef, organic chickens and eggs. wild caught fish, and even though it's more expensive, it's cheaper than these drugs. It's worth a try! Also now qualify for 2 mammograms a year and have regular checkups including blood work, and of course prayers!

@saucy
I thought staying away from BPH in plastic bottles would be the easiest thing until I saw this article by Dr. Mercola....seems to be a hidden danger in quite a few things. From my perspective with my second tumor being neuroendocrine, I wonder if my body was affected by the hidden BPA.
https://articles.mercola.com/sites/articles/archive/2016/04/13/bpa-canned-goods.aspx?v=1611603546

Yes they are in just about everything. Europe doesn't allow them in any products! I also read that the replacement for BPA's is also bad!! Also products with GMO's use Monsanto's roundup, my dad died of Non Hodgkins Lymphomia which they suspect was caused by roundup! The only way to avoid those products is through organic since Monsanto has fought very hard to not have to label foods that contain GMO's!

I've read that about 60% of women have no side effects on AI's. Of course they do not post - if they are having no problems. I personally met some women at a breast cancer luncheon that were at the 5 year mark - so they were going to stop taking it. They had had NO side effects at all. So you really do not know unless you try the drugs. I took anastrozole for 1 year but my Hands hurt so much - there was no way I was going to hit the 5 yr mark, let alone 10 years. I was switched to Exemestane, which is SO much better - I think I can go the full 5 years now. I still have hot flashes and insomnia I started taking CALM for the insomnia, it really works!! I use the gummies. Good luck in the decision you have to make. We all make our own choices. Get all the information you need - but you may not have any side effects.

Sorry it's been 2 months since I first signed up and asked about AI's. Yes I've been taking letrozole for 2mths. Found a Breast cancer doctor that specializes in metastatic bc and he talked me into taking abemaciclib 150mg, took for a month and got progressively more and more tired, diarrhea felt horrible. The dose was lowered to 100mg a month ago and I feel much better. Am also getting zoledronic acid infusion 1x month as the bc stage 4 has spread to my bones. Unfortunately, I've become anemic and my white cell count is getting lower. But I feel grateful to be where I'm at. I do have a question... has anyone received the vaccine while on meds, I'm due to get my first dose Thursday and nervous about it being too much for my system to take. Thank you.

Mjay, I’m so sorry that Armidex (Anastrozole is the generic name), caused memory loss/brain fog. I started off with anastrozole as my first AI after surgery and radiation. I has horrible memory loss/brain fog while taking that also. I thought I was sliding into dementia at 64 years of age. I was really frightened by that side affect. Plus my husband would make fun of me for not being able to remember the simplest things. It was AWFUL!! It was this web site when I started reading it, that tipped me off to the possibility that it was the meds causing brain fog, not any problem with my brain itself. My doctor switched my meds. and the brain fog went away. I’m currently taking Exemestane and that’s better for me-but not like the good old days before breast cancer reared it’s ugly head in my life. I so grateful for reading other women’s symptoms, problems, and issues that they have had through this journey. Thank you to each of you posting on this sight!! I don’t know what I’d do without each of you!

@junec I get my first covid injection on Saturday. So far, I'm hearing that the first dose is uneventful, but that the second dose can give some people flu-like symptoms. I also learned that the CDC recently altered its recommendations on the timing of the second dose -- that second doses of the Moderna and Pfizer vaccines can be given up to six weeks after the first. This is good news for many of us. For example, I have a difficult surgical procedure coming up ap. three weeks after my first dose, and, under the circumstances, will be grateful to postpose the second dose for another two weeks, giving my body more recovery time.

Thank you, I hope your procedure is very successful.

Thanks for your reply. I can so relate. I'm 64 now. Husband is ok but sometimes loses patience...."Oh, go back. I forgot my list"! I will see how it goes as I don't know how much of my depression/brain fog is cancer fear and/or Covid fear! Life did hand us a curveball this past year! I'm due for the Covid vaccine soon so hopefully that will give me a little mental break. Other than the brain fog, worse at some times than others, and tight finger joints upon waking, I don't have many other side effects, at least not that I know of now, thank God. I'm just worried since I have some genetic links to dementia that AI's may exacerbate it and memory won't come back fully after discontinuing. It would be interesting to know if anyone did the 5-year course of AI with brain fog/memory issues and how they fared after discontinuing, i.e., did the brain fog lift or were they permanently impaired. Thank you all for sharing your insight and experience.