AIs are the worst. And I don’t mean Artificial Intelligence.
I mean Aromatase Inhibitors.
They are the category of drugs given to “hormone positive” (“HR+”) “post-menopausal” women after “active treatment” to lower their risk of recurrence and “increase survival rates.”
There were a lot of quotation marks in that last sentence, and that’s “purposeful”.
Let’s break it down:
“Hormone Positive” which is often indicated as HR+, is a breast cancer which has receptors for estrogen or progesterone or both. Tamoxifen is a drug that blocks estrogen receptors on cancer cells in premenopausal women. Aromatase inhibitors are drugs that reduce estrogen production in the body for post menopausal women.
“Post-menopausal” in the cancer context is often referring to an early, chemically or surgically induced, menopause. Going naturally into menopause over the course of years is much different than being slammed into it in a matter of months, weeks, or days.
“Active Treatment” refers to the chemotherapy, surgery, radiation, and immunotherapy phases of cancer treatment. After you’ve completed the protocol for your cancer, or when you show no residual disease, you are considered done with active treatment. The problem with this label is that now people (the patient included!) assume you are done. For those with HR+ breast cancer, the current standard of care includes 5-10 years of tamoxifen and/or aromatase inhibitors.
Studies show that taking AIs for 5,7, or 10 years can “reduce recurrence”. However there are so many side effects for the rest of your body. I’m at the point now where I’m questioning if the side effects are worth it. A year ago I would have thought any side effect would be worth avoiding risk of recurrence. WOW, did I not understand what they meant by joint pain!
As of today, I’ve been on Letrozole for nearly 7 months. Because the medication reduces estrogen everywhere in my body, I’m have significant joint pain. Like, bending down or reaching for anything or getting into the car or out of the car or tying my shoes or…. You get it. Daily life causes pain and makes me emit a grunt like a 90-year old grandpa.
As I mentioned, a normal woman going through menopause may over time experience a number of side effects that really suck- like brain fog and joint pain and hot flushes and night sweats and weight gain. Breast cancer survivors (like me) are hit quickly with side effects and then also discover that the AIs magnify these already pronounced menopausal impacts.
Here’s why: estrogen normally plays a cardioprotective role by regulating lipids and promoting vasodilation, and it is crucial for maintaining bone density. In just 7 months, I’ve seen significant decline in both bone density and in my lipid health. It’s really depressing for an otherwise very healthy person (this thought always reminds me of The Devil Wears Prada quote- “I’m just one stomach flu away from my goal weight”… “I’m just one chemo/AI/treatment away from healthy”)
Anyway, I’ve been doing a lot of research on estrogen, on the pros and cons of AIs, and out of the box solutions being explored (like micro-dosing GLP1s). There’s a lot of exploratory stuff out there in the world of breast cancer treatment and vaccines, and I know that in the next few years the standard of care will shift. But for now, there’s nothing specific I can point to that I can take advantage of.
And so I’ve been powering through my days, modifying workouts but still doing them (“movement helps!” Say the experts. You know what I say to that?- Shhhh….). I’ve been downing ibuprofen. I added Claritin to my morning cadre of supplements as some say this can offset Letrozole (my AI) joint pain. And last but not least, I’ve switched to a Whole Food Plant Based diet. I feel better food-wise, but my body just hurts to sit, it hurts to stand, it hurts to walk. If only I could lie down all day…?
Yesterday I hit my breaking point. Work has been stressful and that doesn’t help- but I decided I’m done with this AI. My doctor and NP agreed to a short break and then I’ll try a new AI- perhaps the side effects will be less. We’ll see.
In the meantime, I’m starting my temporary Letrozole Vacation now. Metaphorical palm trees and sunny days ahead, fingers crossed.
Just a pretty pic of my whole food plat based diet shopping at the farmers market. Better than a photo of joint pain.