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Is Taking a Break from Your Aromatase Inhibitor Med a Good Idea?

Is Taking a Break from Your Aromatase Inhibitor Med a Good Idea?

I am always on the lookout for information and studies about the dreaded, drugs we love to hate – aromatase inhibitors. I have written about these drugs quite a few times. They definitely do have a dark side, for some of us anyway. Read my most recent post about staying on them beyond five years here. In this post, we’ll discuss taking a break from your AI medication.

I get emails frequently from women struggling with the side effects asking for my advice. I always stress I do not give medical advice here on the blog or anywhere else. Mostly, what I offer is validation and a forum for discussion. 

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

What I do suggest is to make sure your doctor knows about your concerns and issues. Everyone deserves validation and when applicable, assistance in managing side effects.

And simply asking you if  your side effects are tolerable or not, is NOT offering assistance.

So don’t settle. Start with being frank – discuss your issues and yes, I know it’s not always easy. Get validation. Then discuss options. Then make decisions that are right for you.

What options?

There aren’t that many good ones, but here are a few:

1. Basically, you can stay the course and put up with the side effects, until you can’t, or until your ten years are up, whichever comes first. (Sounds kinda like a jail sentence, right? And now there’s talk of a “life-time” one.)

2. You can try doing some things that might help such as:

Try increasing exercise to help alleviate joint pain. Movement is good for many reasons. Get a few motivation tips here.

Think about trying to shed a few pounds, if you know you should. It might help you feel better, in general.

Try making diet changes that may or may not help with hot flashes. Don’t ask me what the diet changes are, I’ve just heard there are some things you can try. A bit of Googling might be needed.

Have a frank discussion with your gynecologist or other specialist to address issues such as low (or no) libido, vaginal dryness and/or atrophy or whatever your issues might be.

Try some “how to get a better night’s sleep strategies” (that’s a seperate post).

Bottom line, there are things to try. Don’t suffer in silence. Just do not. Another thing I like to suggest is keeping a journal or log about your issues. Take it along to appointments so you have documentation.

3. You can consider taking a break now and then. Of course, you should discuss this first with your oncologist.

4. And of course, you can say, ENOUGH, I’m done and stop taking them. It’s your call. And no one gets to judge you for it.

Now, I will address #3 – the possibility of taking breaks, which was studied and the results presented in this article, Intermittent Letrozole Similar to Continuous Administration for Extended Breast Cancer Therapy.

A reader (thank you) sent me the link about a recent study that took a look at 5,000 postmenopausal women who had been diagnosed with hormone-positive, early stage breast cancer and who had completed five years on endocrine therapy (aromatase inhibitors).

Half of the group was randomly chosen to receive continuous letrozole (anastrazole), meaning every day. The other half was put on an intermittent cycle, specifically meaning, daily for nine months, followed by a break for three months. That was for years 1-4. During year five, treatment was daily again.

Speaking as someone who has taken a couple short breaks, this idea makes a lot of sense to me. My breaks have been relatively brief, one being about a month and another about six weeks. I admit, I’ve also just skipped a pill here and there sporadically. Just because. I hate them.

Every time I have taken a break, perhaps like you if you have done the same, I wait. I wait to see if I start feeling better. And then I wait a little longer. And then a little longer. And then, I start to worry about staying off too long and head on over to the cupboard where I store the darn pills and start taking them again.

Here’s the thing, my breaks haven’t really been for that long. So, I’m not sure if I truly started feeling better or not.

Taking a break for three months in years 1-4, would certainly seem to give a person a better idea about if she were truly feeling better or not. In 90 days, you could probably feel a big difference. Or not. Either way, it might help you figure out what you want to do.

Does this make sense?

Oncologist #4 (I’ve had five and no, I am not a difficult patient) and I discussed taking breaks a while back. Her thought process was, once I went off and started feeling better, I’d never go back on.

Well, that doctor/patient relationship didn’t last, not because of the above mentioned discussion. There were various other issues that made me decide to find a different oncologist, and I am glad I did.

And yes, she was wrong. I did go back on and I am still on Aromasin (exemestane) – so there!

The results of the study were perhaps not striking as far as QOL improvement. However and most importantly, there wasn’t much difference in disease-free survival at the end of five years for the two groups, so maybe the results are striking, after all. Depends on how you look at things, I guess. As this article states: 

During a median 5 years’ follow-up, the primary endpoint — disease-free survival — was similar between groups (86–88%). Quality-of-life measures like vaginal problems, sleep disturbances, musculoskeletal pain, mood, and physical well-being were slightly better in the intermittent therapy group at 12 months.

For some women, this might be something to try because for some, a slightly improved quality of life might be a huge deal. Knocking off, or knocking down, one or two side effects, might make a difference. Or not.

If you’re having side effect issues on one of these drugs, but aren’t sure you want to stop altogether, this might be another option to mull over and possibly discuss with your oncologist.

So, is it reasonable to take a break from your aromatase inhibitor medication?

Maybe so.

What do you think?

Have you ever taken a break from a prescribed medication or thought about taking a break?

If you did take a break, did you go back on eventually?

Are you on an aromatase inhibitor or tamoxifen?

 

Is it reasonable to take a break from your aromatase inhibitor medication? #breastcancer #meds #endocrinetherapy

Linda

Sunday 28th of May 2023

This pill is ruining my life. I cannot sleep, I gained an immediate 20 pounds, I feel about 15 years older, I break down and cry easily, my breathing as been affected (am using an inhaler now), my hair is thinning rapidly, my left arm is so painful at night I must take a prescription dose of ibuprofin, I alternate between constipation and diarrhea so bad I can't leave the house. And I have osteoporosis.

I don't want to live like this.

Patom

Wednesday 10th of May 2023

I was on Anastrozole for 6 months which did zip for my uterine sarcoma. Then he switched me to exemestan for another six months, also not effective. Though I have no reproductive system left the seeded cancer cells have spread to my liver and intestines.

Thanks to an emergency hysterectomy in 2019 during the pandemic, I now have an enormous incisional hernia--roughly the size of a basketball.

Since the tumors are continuing to grow and the hernia is both unsightly and ungainly, I wasted to have the abdominal wall rebuilt and since I was going to be wide open for that, I thought might as well take the tumors out too.

My doctor doesn't like the idea (though the abdominal repair surgeon does).

My feeling is the drug is not helping and makes me feel down, not creative at all (I am a writer and painter), and the tumors are growing--so why should I continue on it for another 10 years?

And why doesn't he seem to care about my quality of life?

I am not happy when I am not writing. And I am not depressed. I am thoroughly frustrated!

Anyone else have similar experience of these drugs slamming their own creativity shut?

Anyone else need surgery for something else and their cancer doctor opposes it?

Judy

Thursday 2nd of June 2022

They tried to put me on those meds and I refused. Quality of life was more important to me. I had stage 1 with a lumpectomy. It's been 8 years and there's been no recurrence. I went on the Breast Cancer Predict site and put in the characteristics of my tumor and they predicted the chances went up 1% if I did not take aromatase inhibitors. All that suffering for a 1% difference? Not worth it. Do your research and make sure what you read is not sponsored by a drug company or anyone who has a lot to gain for your misery.

Julie

Wednesday 15th of September 2021

Hi All! I was diagnosed at 54, and I'm 58 now. Stage 1, lumpectomy, then another surgery to clear margins. No lymph node involvement. 6 chemos of TC, then 15 radiation treatments. Tamoxifen for about 3 years, then switched to anastrozole in spring 2021 because I'm now post menopausal. That lasted for about a month then I couldn't stand the intestinal side effects of bloating, diarrhea, and diminished appetite. Plus my cholesterol jumped to 340 (never high before). All typical side effects of body aches were the same as being on Tamoxifen.

I took a break for one month then switched to Letrozole. I still have bloating & GI issues with this med, but not as severe. Going to have cholesterol rechecked in Oct. Same body aches I've tolerated since taking Tamoxifen.

I cannot believe I have to live with this crap (no pun intended)! To me, this is poor QOL. Has anyone else experienced the same side effects on these meds?? I didn't read about anyone else with these gastro problems.

Patti

Thursday 2nd of June 2022

@Sheila,

I have the same issues. So sick and tired (literally) of it. Been on Anastrozole for 11 months.

Sheila

Sunday 27th of March 2022

@Julie, yes I have the same issue with my stomach I'm on anastrozole currently on a 6 week break

Stephanie

Wednesday 2nd of June 2021

I am 42, diagnosed with ER+, PR+, HER2- at 37. I had a bilateral mastectomy. I was on Tamoxifen for two years then it started causing painful ovarian cysts and I had a complete hysterectomy. I then started Anastrazole and have been on that for 2 years. I don’t think I can take it anymore. The hot flashes, night sweats, horrible mood swings, insomnia, depression, and ZERO libido are making life almost unbearable. But. I am scared to death of reoccurrence. I just had the scare of my life 2.5 weeks ago. I was doing a breast exam and found a lump! I had an ultrasound and MRI taken and the lump showed enhancement as well as an enlarged lymph node. I had a lumpectomy on the 21st and everything was benign thank God! That scared me so bad. I really don’t know what to do. I took 5 days off of the Anastrazole because the anesthesia made my insomnia worse and I almost snapped from lack of sleep. Any advice? I’d sure give almost anything for a magic wand right about now.

Steph K.