Will you feel better after stopping your aromatase inhibitor medication & if so, when? (plus 5 updates)

Will you feel better after stopping your aromatase inhibitor medication and if so, when?

I mean, is that a loaded question or what?

Please remember this blog is never a place to get medical advice. That’s what your care team is for. It is a place to learn, discuss and share experiences and information.

You might want to read and/or download, Endocrine Therapy: The Ultimate Guide to Managing & Making Decisions about Your Aromatase Inhibitor Medication.

I haven’t written about the drugs we love to hate in a while and thought it was time I did. I’m sharing a couple personal updates as well as a couple research-backed updates about these drugs, or more specifically, the management of side effects from said drugs.

So, here’s update #1:

I am done with aromatase inhibitors! Woohoo!

My plan was to stay on for the full ten years. However, I decided to stop a wee bit early. I made it to a little over nine years. At that point, my oncologist and I decided it was “okay” for me to be done. That was about a year and a half ago.

Update: As I understand it, 10 years is no longer recommended. I’ve heard seven is more commonly the goal these days. Please discuss with YOUR oncologist.

So, did I start feeling better and if so, when?

We’ll get to that, but first, let’s do a little recap about aromatase inhibitors, or as I’ve been calling them for years, the drugs we love to hate

Endocrine therapy, also known as hormonal therapy, is treatment used for many early stage breast cancers that are estrogen and/or progesterone positive. When given before surgery to shrink a tumor, it’s called neoadjuvant hormonal therapy. When given after surgery, it’s called adjuvant hormonal therapy.

Tamoxifen, aromatase inhibitors and specific drugs used for ovarian suppression are types of hormonal therapy.

This post focuses primarily on aromatase inhibitors.

What are aromatase inhibitors and why are they prescribed?

There are three aromatase inhibitors (referred to as ‘AIs’ from here on out) that have been FDA approved:

anastrozole (Arimidex®), letrozole (Femara®) and exemestane (Aromasin®).

The names in parentheses are brand names.

If your tumor was ER and/or PR positive, your oncologist might very likely prescribe an aromatase inhibitor after surgery, chemotherapy or radiation as part of your adjuvant therapy treatment plan. The intent, of course, is to prevent recurrence.

It’s noteworthy, too, that AIs are used to treat some types of metastatic breast cancer, usually, in combination with another drug. Our friends with MBC don’t have the option to just stop despite the nasty side effects of AIs. Let that sink in. I don’t say this to diminish an early stager’s experience. I share it because it’s something important to contemplate and remember.

Basically, these drugs block tumor growth by lowering the body’s natural supply of estrogen.

But, as we all know, lowering the body’s natural supply of estrogen also can create problems, for some of us anyway. Snuffing out a woman’s natural supply of estrogen is, well, unnatural.

So why do it?

Because cancer can create more havoc.

The side effects are nothing to sneeze at either and can, in fact, be quite unpleasant, impacting a woman’s quality of life. In fact, despite the benefit, the side effects cause many of us to stop taking these drugs early or even to opt out of starting on one at all.

All that is a big deal!

Some of those unpleasant side effects include: joint pain, muscle aches, bone loss (osteopenia and osteoporosis), bone fractures, lowered libido, hair loss/thinning, weight gain, hot flashes, mental fogginess and sleep issues, to name a few.

If you’re experiencing any or all of these, it’s not fun. At all.

Finally, doctors are listening, validating and trying to come up with side effect management strategies. Or at least more of them are. So, it appears our speaking up about these side effects is starting to pay off.

So, keep on doing that. Keep speaking up about any side effects. Speaking your truths is NOT complaining or whining. Speaking up is how things change and improve.

Some of you might remember a survey I shared about a while back about said side effects. The response to that survey was notable, with 2,353 women and 54 men responding.

Update #2 – A few takeaways from the survey were:

• 111 respondents never started due to concerns about side effects.
• Stage 4 patients were included and reported similar side effect experiences.
• Musculoskeletal and physical changes such as weight gain and body image dissatisfaction were the most commonly reported side effects (from women).
• 41% of respondents noted relief from side effect management strategies that were tried.

41% reporting some relief isn’t all that great. We definitely need better side effect management strategies.

Wait. We need less harsh drugs that cause fewer side effects to begin with!

To learn more about the survery results, visit Dr. Deanna Attai’s blog and read, Endocrine Therapy Survey Results. Thank you, Dr. Attai, for listening to us and thank you for heading up that survey.

Update #3:

Trials have been underway looking at genomic assays such as Breast Cancer Index Test (BCI) and researchers presented results (thus far) at the recent American Society of Clinical Oncology Conference (#ASCO21).

Stephanie L. Graff, MD, FACP summed up those results succinctly:

Researchers presented results from several studies looking at genomic assays, tests that look at the genes of the tumor itself. Some of these trials were designed to predict which patients would benefit from a longer course of hormonal therapy, while another trial looked at whether some patients could omit hormonal therapy completely. Although no clear answers emerged, it was a ray of hope of moving toward “less is more” and more personalized treatment for hormonal therapy.

Source for above: Takeaways from American Society of Clinical Oncology 2021 (ASCO) via Dr. Susan Love Foundation.

You can read the (confusing) details about two studies here and here. (Thank you, Dr. Attai, for sharing the links.)

If I’m surmising correctly, who benefits from these assays might be more nuanced. Study continues. This is important because determining who will and who likely will not benefit from extended endocrine therapy (EET) is a big deal. Meanwhile, we wait for those clear answers.

Source: Tweet (below) from recent #ASCO21 Conference.

Neither MammaPrint or BCI were predictive/prognostic in B-42 study. See my summary attached. Very confusing data though… #bcsm pic.twitter.com/gS9wteKhd5

— patty spears (@paspears88) June 8, 2021

Okay, maybe you will you feel better after stopping your aromatase inhibitor medication, but what if you don’t plan to stop any time soon?

How do you manage the unpleasant side effects now?

Keep reading and note the graphs within the Tweets below.

Update #4 – side effects management strategies

Evidence continues to come in showing that acupuncture helps to relieve aromatase inhibitor-induced musculosketal symptoms.

Source: Tweet below from recent #ASCO21 Conference. Note link to study within Tweet.

#ASCO21. Great news! Aromatase inhibitor-induced musculosketal symptoms are a common reason ppl w/ #breastcancer stop endocrine tx. I was already recommending #acupuncture based on prior results of S1200 (https://t.co/saffgzH4Lw). Glad benefit is durable. #bcsm @DrDawnHershman https://t.co/34qptPobo0

— Tatiana Prowell, MD (@tmprowell) June 7, 2021

Fine and dandy. However, access and cost come into play here for many of us.

Just because a tool is there, doesn’t mean it’s usable for everybody.

Other ways to manage endocrine therapy issues (based on published data) are highlighted in diagram below:

Source: Tweet below from recent #ASCO21 Conference. Link within Tweet but not accessible (to me) due to content payment wall.

The wheel of life #bcsm How to manage side effects of endocrine therapy for #breastcancer – based on published data – Great work and effort of all authors. Thanks @matteolambe @YoungStrongDFCI https://t.co/2qAYsaETYh pic.twitter.com/Vz0d3zHwg5

— Antonio Giordano, MD PhD (@antgiorda) April 21, 2021

To clarify, in each color category on the wheel, the darker the color the more data there is to support the recommendation.

The one thing that comes up again and again is the benefit of exercise. There is no getting around this.

Physical movement is imperative for better health.

Of course, this is true for all of us, cancer or no cancer.

You might want to read my strategies: 13 Tips to Help Manage Side Effects from Aromatase Inhibitors.

Update #5

Again, back to our starting question, will you start to feel better after stopping your aromatase inhibitor medication and if so, when?

Maybe — and hard to say.

Sorry to not be more definitive, but that’s my honest answer to both parts of the question.

Anecdotally, my experience has been positive. I do feel better now that I’m off exemestane. When exactly I started feeling better is hard to pinpoint. One day last summer, when I was recuperating following my DIEP surgery, it hit me – I was feeling better – regarding AI side effects.

I realized I was no longer experiencing quite as much joint pain, which for me, had been one of my worst side effects.

I also had managed to lose a few pounds. Of course, some of that was due to surgery. Nonetheless, I’ve been able to keep it off. Okay, mostly off. And yes, I still have a fair number of pounds to lose, but I have made progress. While on exemestane, I struggled to lose any weight. At all. I still take it off slowly. I mean, really slowly, but I can nudge things along a wee bit easier. And I have not changed my diet and exercise habits. I’m convinced the drugs make weight loss harder and weight gain easier.

Unfortunately, I can’t say I’ve noticed better hair. I’m fearing hair loss/thinning might be permanent. But that might be from chemo, as my hair hasn’t been the same since then. Nor have my lashes and brows, I might add.

Best thing of all, for me, since stopping my AI med is this:

My bone loss seems to have slowed and even reversed itself a tad. Again, woohoo!

My last bone density T- scores showed improvements over the last couple previous scans. The improvements were slight, nonetheless, there were improvements. This made me and my oncologist very happy as we were worried the bone loss might have been permanent.

Bone health is a huge deal. Sometimes, I don’t think this is recognized and treated as such. Not to the extent it should be anyway.

This may or may not give you hope that things might improve for you too. Emphasis on might, as we are all very different here too.

When you do stop, it will likely take some time before you notice changes in how you feel. Things don’t happen over night. At least they didn’t for me.

So, will you feel better after stopping your aromatase inhibitor medication?

Maybe so.

This does not mean I am endorsing stopping early. I am not. Let me repeat, I am not endorsing stopping early or not starting, for that matter.

As always, I do endorse learning all you can, speaking candidly with your care team about side effects (or lack there of), asking for help in managing any side effects that are bothering you and ultimately, making decisions about staying on or going off these drugs that feel right for YOU.

That’s it. Those are the updates I’ve got as of now.

If applicable, do you have any updates to share?

Have you at any time been on an estrogen-blocking medication as part of your cancer treatment and if so, what side effects have you experienced?

If applicable, has your medical team helped you come up with side effect management strategies and if so, which ones worked (or didn’t work)?

If you’re a man and taking an AI med, what’s your experience been like?

What research-backed updates about these drugs did I miss?

If you like this post, please share it. Thank you!

Note from Nancy: Order my new book EMERGING HERE. I wrote it to help others emerging from life-altering challenges — including loss of a loved one and the pandemic. Because your hard matters too.