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Aromitase Inhibitor

A MyBCTeam Member asked a question 💭
Pittsfield, MA

Has anyone opted not to take an AI? I just cannot tolerate the side effects any longer ....

December 23, 2013
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A MyBCTeam Member

I have had Stage i ductal carcinoma, ER+ and HER2+. Had TCH chemo, no radiation, BMX. Tamoxifen almost killed me, as in 6 months, it caused severe disruption in lipids, resulting in almost complete blockage of a major coronary artery; I had to have a CABG and refused to take Tamoxifen any more. My oncologist recommends 5 years of aromatase inhibitor, and I am on a year of Herceptin. I am VERY reluctant to use aromatase inhibitor (arimidex prescribed). Here are my thoughts.
1. Why is the dose the same for everyone regardless of age, weight, immune status, other health conditions? This is unlike any other drug I can think of, and I'm a health professional.
And why are there no studies comparing outcomes of those on Aromatase inhibitors with "natural diet"s?
2. The side effects of these inhibitors are bone demineralization and not uncommonly aseptic necrosis of the jaw. This is a serious issue, especially for those over 65. Numerous other side effects even if one is not in pain.
3. Alternative sources of aromatase inhibitors include button mushrooms, cruciferous vegetables, and other foods which can be researched on line. These natural approaches are used by bodybuilders to prevent their testosterone from being converted to estrogen (this is the function of aromatase). A careful diet may be a natural way to get this product without suffering.
4. While the widely accepted fact is that aromatase inhibitors reduce the odds of recurrence by 50%, finding the odds of recurrence for one's particular type and stage of cancer is a daunting task. Many of the studies are old, the treatment approaches vary widely from lumpectomy to BMX, and what chemo is used, radiation etc.
5. What I did find on line, was that for women over 70 (I'm almost there!), people died of complications of the drug or other health issues rather than recurrence of cancer! So that gives one pause as complications can include blood clots, cardiac damage, severe demineralization of bone, reduced activity, a lot of pain, fatigue, etc.
6. I have just about decided to vote for Quality of Life over this medication. This does not mean I'm doing nothing!! I Have altered my diet to include food sources of aromatase inhibitors and antioxidants and to remove all sugar and most carbs (carbs ESPECIALLY SUGAR feed cancer cells). Exercise 30 min a day (aerobic is important because oxygen starves cancer cells). Weight loss is a big plus because estrogen is produced in fat cells. The less you weigh, the less estrogen that fat can produce to "feed" cancer cells.

I hope this is helpful. :)

June 26, 2015 (edited)
A MyBCTeam Member

I've had terrible side effects with tamoxifen and arimidex. Minimal side effects with exemestane. Talk to your oncologists about switching to a different medication. Best wishes to you.

December 29, 2013 (edited)
A MyBCTeam Member

I'm on aromatase inhibitor therapy now; have been for over one year. Arimidex resulted in chronic severe joint pain. Then switched to Exemestane and have minimal side effects. With my first round of cancer, I tried Tamoxifen. For me, it was the worst. Hope this helps. Best regards.

December 29, 2013 (edited)
A MyBCTeam Member

I am a textbook case of AI, getting excruciating pain right when the textbook has reported, 6 months of Anastrazole and 6 weeks of exemestane after switching from Anastrazole. I took some drug holidays between my pain episodes and based on the cellular half life of exemestane and a study published, I presented my case to my medical oncologist and since then I had been taking exemestane 3 times a week only. My estradiol level was undetectable and my recent mammogram is negative. The pain is still there but not as severe like before. I am determination to complete my 2 years of AI in July 2024. I have read somewhere that AI effects remains after taking it for two years so. I can't wait to be able to walk normally not like a penguin soo

February 22, 2024
A MyBCTeam Member

Nice to read the comments. I am in the same boat as many. My point in this rambling blog is that it is so challenging and frustrating to get information about estrogen blocking therapy. I was recently prescribed on anastrozole. Like many, I was not warned about how difficult this might be for me. Within two days of starting, I had all the muscle and bone pains--that, I expected. Day 3, I started with severe nerve pain and my vision was affected. I tried to stay on anyway, but the pain escalated. I will be meeting with my oncologist in a couple weeks to determine alternatives. Several years ago, doctors suspected that I may have Lupus, but tests did not confirm it. The nerve pain at the time felt just like what I had on anastrozole. I researched and found that aromatase inhibitors can kick in autoimmune disease as well, so I am nervous about going on an irreversible inhibitor such as aromasin. I may give Tamoxifen a try. I am very upset at my inability to get all the information about side effects risk vs. overall risk. Bone fractures, permanent eyesight loss, heart problems, autoimmune problems, possible dementia, blood clots, and other cancer risks, I had asked my oncologist prior to starting about my already below normal white blood cell count after reading that up to 5% of patients have a drop in white blood cell count, but she did not seem concerned. I guess I am the type of person who wants to see a fact sheet that states percentages for each risk. Instead, I am pouring over research articles and the more I read, the more I realize they do not know many of the long term risks and the more nervous I become. I was so hoping that I would be one of the fortunate people who has minimum side effects. My Oncotype score was 15--9% chance of recurrence with hormone blocker. I asked my doctor about my risk without treatment and she told me it would be about double. I researched and some articles say about 50%, but I could only find studies that said 25 - 35 percent reduction. When I try some of the online breast cancer calculators, they show my chance for recurrence as really low although I am assuming the oncotype is more accurate. Also, I just realized that the Oncotype says that I am PR negative while my biopsy result indicated that I was quite positive--this plays into risk as well. I guess it comes down to whether I can tolerate Tamoxifen or not. But I am going in with questions and demands: I want a test that shows my likelihood for blood clots, an ultrasound of my uterus, and I want to know where my estrogen level is now. Wishing everyone the best.

August 11, 2017

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