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Is It Reasonable to Take a Break from Your Aromatase Inhibitor Medication?

Is It Reasonable to Take a Break from Your Aromatase Inhibitor Medication?

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. 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. 

What I do generally 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?

If so, did you go back on eventually?

Are you on an aromatase inhibitor or tamoxifen?

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Is it reasonable to take a break from your aromatase inhibitor medication?

39 thoughts on “Is It Reasonable to Take a Break from Your Aromatase Inhibitor Medication?

  1. I tried Tamoxifen twice and the side effects were terrible. …mainly mood swings, joint pain and hot flashes that were far more severe than menopause. My oncologist had me switch to Arimidex and it was better at first until I started feeling like a dried up old prune! Seriously, like an 80 yr old woman (I’m 61). So I’ve been on a break for about 2 months and I feel so good I may never go back. Quality of life is so much more important to be than quantity.

  2. I took Tamoxifen for 5 years followed by an Aromatase Inhibitor for 4 years with which I was administered Zometa injection on a 6 monthly basis to help my bones.. My doctor told me to stop the medicine and I have been off it since the past 4 months or so.I still feel tired but am managing to get along. I even drive my car around once a week or so and do housework.I’m almost 73 years old and take medicines for diabetes and blood pressure.

    1. Shehnaz, I am glad you are getting along alright. It must feel good to be done with the meds, well, certain ones anyway. Thank you for sharing. My best to you.

  3. I did the buffet plan of anti-hormone therapy, meaning I tried them all (all three aromatase inhibitors, and Tamoxifen as well, even though I’m post menopausal.) I took some breaks, but none longer than 8 weeks. I will say that in my opinion both with my personal experience and with women I work with who are on these medications, Arimidex seems to cause the most joint pain and vaginal dryness. I encourage people to try the other ones before they give up, and it seems like everyone responds differently to the different AIs and Tamoxifen. I stopped my drugs after 3 1/2 years, because it’s a quality of life issue for me–I’m willing to take the risk. The last thing I would add that there’s a study showing that acupuncture can help with the joint pain from AIs. https://www.cancer.gov/news-events/cancer-currents-blog/2018/acupuncture-aromatase-inhibitor-joint-pain

    1. Laurel, I have visited that same buffet. Still one selection to go. You are right – everyone responds differently, so it’s worth switching before stopping altogether. QOL parameters are different for each of us as well. Bottom line, it’s an individual choice. Thank you for sharing.

  4. I was on Anastrozole for 6 months right after treatment. Horrible side effects. So she switched me to Letrozole. I’ve been on that for 8 months, and the joint pain is almost intolerable. I was in the bathroom at the mall and could not stand up from the toilet. Had to slide off, go on my hands and knees, and was able to slowly stand up. Enough is enough. I am 71, and too young to feel this way. I want to enjoy the years I have left.

  5. I recently saw my medical oncologist. I had pushed and pushed for a breast cancer index to tell me how beneficial the AI were for me. I had a 6mm tumor, slow grower, and clear margins and lymph nodes. My oncologist told me the breast cancer index was used after 5 years to determine whether or not the patient should stay on it for 10 years. I told her there was no way I would stay on them for 10. She then went to a computer program which calculated my risk of getting the cancer elsewhere in my body at about 8%. She said she thought my risk was even lower – more like 5%. Taking an Ai reduces my risk to about 2%. She was very dramatic and said I should consider very carefully whether to go off the AI. To me it was a no brainier to opt for quality of life. However, I am still taking the pills. My mother died at 68 of uterine cancer. I am 67. She died because at 47 she needed a hysterectomy but refused because she was afraid of menopause. While uterine cancer is not hereditary (so the doctors say now) I don’t want to make the same mistake as my mother and go off the AI because I don’t want to deal with the side effects. I have a very physically demanding vacation coming up and I will go off the AI then because my body needs to perform at optimal levels. I hate the AIs and what they do to me. Whether I will go back to them when my vacation is over I don’t know. Thanks for listening.

      1. Are any of you taking any of these drugs like exemestane
        Because your breast cancer
        Spread to your bones, and can
        You go off for a couple of weeks.
        I have severe sciatic pain, along with other problems..

    1. Patricia – I was very interested to read your post. I’m leaving in a week for a three week trip that will involve lots of walking and have considered taking an AI break in order to be more functional and in order to enjoy this experience more! I’m wondering how you did. Could you tell a big difference in your pain levels and was it noticeably helpful to you to go off? Also – how hard was it to go back on at trip’s end? Wishing you all the best!

  6. I feel that, if I were to take a “break” from the Arimidex, I would be one of those patients who would never go back. I do mental warfare with myself a couple times a week. I know my oncologist would never support the idea. She gets nutty over the idea that I might possibly skip one pill by accident. I’ve been taking it for 22 months (yes, I am counting). In my heart of hearts, I just really want to stop all of this and return to my “normal” self. The only thing that keeps me on this pill is when my husband said to me – “If you stop taking it and the cancer comes back. I couldn’t live with myself.”
    When I read about some of the side-effects other women describe, I realize I may be fairly lucky – but, still – I hate it!

    1. Leann, Your husband’s words have a familiar ring. I tell myself the same thing all the time – like every day I swallow my little white pill. Thank you for taking time to comment.

  7. I believe in breaks, it could help emotionally more than physically. I went on a break and never went back on them. I had every side effect and some I had on chemo. I felt their was nothing left of me. My oncologist did want me to feel better. I recently went on bone medication Fosamax but the generic of course. It has been proven to help protect the bones against cancer recurrence in your bones. I tried the Boneva to take it once a month, seems I forgot who I am and how my body reacts to a lot of drugs. I got a 48 hour flu! I love this blog it has always helped me and I feel I can say anything and not be judged. Anyway they are always trying to get me back on something but I don’t want to go back on them

    1. Wendy, It sounds like you’re comfortable with your decisions, so that’s what matters most. Thank you for sharing and thank you for the kind words about the blog.

  8. I tried 3 different AI’s and Tamoxifen. Had what I considered QOL issues with all including headaches, severe hot flashes, joint pain to the point where movement was almost impossible, vaginal dryness, general skin dryness/cracking/bleeding, severe depression, etc & to name a few. I took myself off the meds without consulting my oncologist. I was afraid he would talk me out of it. I should say I am 64 & had a oomph just to feel safer. To my surprise, my oncologist didn’t try to talk me out of it. He is very pro QOL. I do have to do tumor markers every 3 months & regularily scheduled scans. I still ache some & suffer from fatigue which could be natural aging. Where I am much improved is in mental clarity. Moodiness & depression is gone. I guess I should be worried about foregoing a proven method to help progression but I’m not. I rarely think about it. When I do I feel acceptance that whatever will be will be. In the meantime I want to enjoy life as much as possible. I was not living life while on the meds. Just my story. Not for most but made sense for me. Gentle hugs to all!

  9. After a month of going back and forth about starting Tamoxifen, I finally decided to go for it. I hate it! I’ve been on it since October and I don’t know how much longer I can tolerate it. The hot flashes are so intense, my hair has completely thinned out (after finally having hair again after chemo), I’m moody, depressed, no sex drive at alll, and just feel off. But the thought of having a recurrence scares me more. I am 43 with 4 kids and an ill husband as well. There doesn’t seem to be any other alternatives.

    1. Katie, We hear you. Hopefully your oncologist knows your issues. There are things to try to help alleviate some of them, so be sure to ask for guidance in managing side effects. Good luck. Thank you for sharing.

  10. Disclaimer: I may have said all this before…………………….but you asked
    Yes, I hate, hate, hate the little pill. Mine is the pukey, ochre yellow one, letrozole. I first took anastrozole which I started Sept. 13, 2016, the day after my last radiation treatment. The first couple weeks were uneventful, I mean no appointments, no tests, I was finally free! I was movin’ on down the road to forgetting or at least not obsessing about breast cancer.
    Then I started getting headaches. Of course then there were the hot flashes. And the sleepless nights with the hot flashes and the headaches. Then about 4 weeks into my magical 5 years, my arms and hands would go painfully numb at night. Along with the hot flashes and the headaches, sleep was becoming almost non-existent. I would roam around the house to shake out my poor arms and hands. I had never before had such an issue.
    Never. I had to wear boxing gloves (splints) to bed.

    Did I mention I hated that pill?
    At all my 6 week follow up appointments, I mentioned the hands. I asked about possible carpal tunnel. I blamed it on the pill, I got all the dismissive remarks from all of the docs. It was like they couldn’t talk to you about it. It was like they ignored my concerns and were adamant that it was not a side effect.
    They all just looked at my scars and my “tan”, squished the boob a little and said everything was looking really good.

    Of course, I did a lot of research online. I went to as many official medical sites, drug sites, even the drug makers said carpal tunnel was a rare but possible side effect. I found so many blogs about the side effects and found those women were having the same difficulty talking to their doctors about their pains.
    And then I found you, Nancy. I found you on the Dark Side. Thank you for letting us all talk about what we are not allowed to talk about with anyone else it seems. Not even our doctors.
    Why is that? (And have you noticed, Nancy, that when you post any question having to do with AI therapy, the response is immediate and very popular?)
    I tried to keep the ole’ positive attitude. I tried to not dwell on the pain. I tried to “wait it out”
    in hopes my body would “get used to the drug”.
    I write this not to discourage any woman from at least trying the pill and staying on the regimen.
    You may be one of the lucky ones, please do not let my experience cloud yours………..
    I really want to stay on the regimen, I really don’t like to complain, it is not my nature.
    I really don’t want cancer again. I really want my life back. But I really realize, the life I once had is gone.
    After 8 months of “nasty zole” I had seen my onco at my 6 month follow up who said, sure, why don’t you take a week off and see how you feel.
    One week off, of course that was to prove me wrong. I wasn’t going to get any relief, he knew that.
    I took 3 weeks off. No, I didn’t get any relief. I then started the second pill, letrozole.
    By this time, the carpal tunnel was so bad, there was only one thing to do and that was demand a referral to a hand doc.
    After the awful nerve conduction test, they said, yup, you have severe carpal in the right and mild on the left. Surgery on the right was scheduled.
    The surgery did stop the night time numbness and pain. Carpal tunnel cured.
    But by the time a month and a half had passed, the right wrist and thumb were not feeling better.
    I took another 10 days off of the pill, no relief there.
    Like you said Nancy, you are too scared to death not to take the darn pill.
    As a matter of fact, it got so bad, I finally went back to the hand doc who then said,
    “yup, you have De Quervains, not unusual for someone who has had carpal tunnel.”
    He gave me the cortisone/novocaine shot and sure enough, within a week or so
    De Quervains cured!
    Finally, finally, I was somewhat pain free.
    And I don’t get the headaches as much any more.
    And I don’t get the hot flashes as much anymore.

    BUT, sex is not possible without a lubricant. I never had that issue before.
    My new name is Sahara. Sorry for the TMI…………
    All of my bones are becoming louder and louder. They grind scrape, crackle and rattle.
    It started in my left arm and shoulder. It is now in my neck, spine and ribs and progressing to all other areas. It is so loud, I cringe when I move. When I roll over in bed, I sound like a bag of bones.
    I am not due for the dexa scan till June. My onco just gave me that look when I asked him about getting it after the first year. He said 2 years was the norm. I take more vitamin d and calcium than he told me to take and I had to get my primary to give me the slip to get my vitamin d levels checked. She also had me get an X ray on the left shoulder to see if there was something there.
    All they said was there was some degradation, but nothing to be concerned about.
    Really????
    I feel like if I fall or step down too hard, I will just collapse into a pile of dust.
    So after 2 months of relief in the hands, my left wrist and thumb is really painful.
    Time to visit the hand doc again………..sigh………..
    Sooo, what was the question again?
    Ahh, yes, is it reasonable to take a break from the aromatase inhibitor?
    I had read that study a few months back and it did sound reasonable to me.
    The loss of every molecule of estrogen in our bodies seems a bit extreme.
    A “new normal”. Hmmmm………..
    I understand the mechanics of the drug, and the reason, but the dosages we are given are all one standard. Like we are all exactly alike. But we all need a little estrogen to keep our skin, brains, bones and well, just everything supple and healthy. And what about woman who don’t have the same side effects I have, are they not getting the same “benefit” from the drug that I am?
    I also question the thought that testing our estrogen levels during treatment offers no insight or would be useful to the treatment. I just don’t believe that. Is estrogen the only thing to blame here?

    We are being forced into the dry old prune syndrome with no regard for the real toll it is taking on our bodies and soul. ( Now I feel terrible about thinking about all those little old ladies as dried up old prunes all my life) Now I am one of those and I am only going on 56!

    I am “this many years old” ( jazz hands:)
    I make noise when I stand up.
    I make noise when I sit down.
    I have become generally noisy.
    I bitch more,
    I itch more
    And just might be going crazy

    Oops………oral diarrhea……….did I mention that my face is falling off?
    I have these dry flaky patches of skin around my mouth. And two small patches on either side of the bridge of my nose under the brows.
    I pick at them and they just keep flaking. I goop them up, but like a mud puddle in the desert, the flaking continues. I was always cursed with very oily skin, acne till the mid twenties. greasy hair, never dry. This dry thing is a whole new thing. A bad thing. I was always a well oiled slick chick!
    If you know what I mean….
    Oh hell, I am just falling apart all over!
    Nancy, you once mentioned that you broke it down into 6 month intervals. Goals, so to speak.
    I am approaching 18 months down and 42 more to go………..heavy sigh………….
    I am doing that too. I read somewhere that the first two years of AI therapy were the most important, to see if you get a recurrence in that time. I am looking at 24 months as a goalpost.
    I mutter to myself, we’ll see how I feel then…..
    Let’s hope I can make it.

    I do try to exercise ( I make lotsa noise doing that)
    I am trying to lose weight ( it’s my fault I got cancer because I am overweight)
    I am trying to eat better (yup, my fault again, it was the snickers) (or cupcakes)
    (Mcdonalds dollar menu) (you name it)
    Don’t get me wrong,
    I am grateful to be alive.
    I still try to remain positive.
    But I adamantly question the AI therapy “rules” as they are written now.
    And if I feel like being crotchety, just realize, it’s not me,
    it’s me being deprived of a Snickers bar……….

    Disclaimer:..If all feeble attempts at humor failed, then I apologize……………….
    Ooophff..da…….It’s late…………………I should really be lying down now…………………oooohh………
    …… oowww……….what the hell was that????? ….ooowww……
    Grooaan…. What now?????

    1. Tarzangela, thank you, thank you, thank you.
      You touched my heart, made me smile (snicker a little, maybe) and go “Ah ha! Someone else has numb hands every night, is called Sahara, groans and cracks when she moves, and counts the days, weeks, months she is on the drug.”
      I am at 5 1/2 months on Anastrazole and find the side effects change daily, except for the big three: dryness everywhere, brain fog and trigger finger/hand numbness. My goal is my next check up in October. I may take a break then to see if the misery is just in my head.
      Best of luck to you!

      1. Hey Marilyn! Thanks for the well wishes, same to you too! And glad I made you smile/snicker/and maybe a guffaw? Thanks to Nancy, we all have found a safe place to air our troubles and find out that we are not alone. And not crazy………………….the misery is definitely not in our heads. And you are so right, every day is a new adventure in “what will hurt today”?
        I have a trigger finger now as well as both wrists will be in need of another cortisone shot (can’t wipe my ass without excruciating pain, sorry for more TMI). My dexa scan came back osteopenia and yesterday I had a weird thing happen, I think it was an ocular migraine, which I had to google.
        I was in front of the computer at work when suddenly everything got really distorted, I described it as seeing a water spot in my vision. It was like a circle with the outside edges were zigzagged and shimmery. It grew bigger as time went by. I saw it in both eyes.
        It was terrifying, I couldn’t see all the words and everything was shimmering. I have never in my life had a migraine or anything like this happen to me. I seriously thought I might be headed for a stroke or sudden blindness. Apparently they are considered harmless, if that is what it was, it only lasted about 20 minutes, but boy, did it freak me out for the rest of the day! It’s been bad enough that my eyes are getting worse and worse. I only wear cheaters, but I have 3 or 4 different strengths for different days or tasks. And then, I walk out into the sunshine, I am blinded by the light.
        This is one more thing for me to worry about, especially since our meds can cause cataracts,
        retina issues, etc. So it looks like I should make an appointment with a real ophthalmologist instead of going to the Vision Corner for the “cheap” exam. Another expensive damn doctor to see. Think I will wait till October for that. I will have been on the nasty pills 24 months or 17520 hours or 1,051,200 minutes.
        Or what seems like an eternity…………….. It might be “holiday” time for me then, or maybe I’ll decide to take them every other day, or every 3 days. I don’t know what I will decide.
        And then we have to be blasted with all the pinktober crap, so then I will feel guilty about not taking the pills. Gawd, it is never ending……………………………………

  11. I am so glad I came across this blog..I feel like I’m not alone anymore. Reading all the above conversations has been really helpful. It’s been 3 years since my surgery to remove a 2cm tumor and 14 lymph nodes (drats). I too have spent a long time finding the right Arimidex brand that works for me. I’m not much of a tablet taker but I do take it out of fear of getting cancer again. I have managed to control my symptoms of hot flashes, dry vagina, majority of joint pain and mood swings by changes to my diet. It has worked for me (I think so anyway so I’m sticky with it) LOL …I haven’t given up my red wine though as its the only vice I’ve got left. I found probiotics (happy gut, happy body) have helped with my vaginal dryness, I make fresh veggie/fruit juices everyday and avoid processed and fatty foods. I also train 4 days week at the gym (gym helps with sanity too LOL). It may not work for others but it has certainly made me feel better…alas it hasn’t helped the non-existent sex drive though…my hubbie and I have to work really hard at this to make it happen but I’m determined not to let the medication beat me 😀
    In the last 6 months I have developed muscular problems and swelling (I think it is lymphoma) in my right arm but after reading Tarzangela blog, you’ve given me food for thought that perhaps there is a more underlying issue. I have my specialist appointment soon so I’ll definitely be getting them to test my arm to see if its something other than lymphoma.
    Thank you all again as this blog has been so comforting for me. Take care everyone 🙂 x

  12. I am taking a break now and I feel great! Very little joint pain now, and though I’m still forgetting a lot of nouns (maybe it really is my age!) I am thinking more clearly and able to make better connections and follow through on life.

    Initially I had just run out of exemestane and was dragging my feet on getting the refill. I had been taking one type of aromatase inhibitor then this one for 2 years. Then I had to go through the excrutiating process of filling our FAFSA for both of my college age kids. (Federal student aid forms using past year taxes.) Except this year, it wasn’t so bad! And I decided to stay off until I finished our taxes. And that has gone better than in the past too. Because I can pick up where I left off and not feel like I’m in a fog about what I was doing! It’s no wonder I’ve dragged the taxes out, because I do not want to go back on exemestane. But I want to live and so I will. But I have to say, I feel like I need to say goodbye to everyone before I go back on because I’m afraid the fog will put me back in hermit status because my inability to carry on a conversation while on the medication creates social anxiety!

    I think I will plan another break next year. That will give me more hope to get through. I hope other people have a better experience.

  13. Hi Nancy,

    Taking a break and going back on never occurred to me. I was on Aromasin and stayed on until I couldn’t bear it anymore. Perhaps I would’ve stayed on it if I had a break. But this was years ago, so maybe before doctors considered breaks.

    Anyway, as you know, I did #4 — stopped and headed for the hills. My quality of life was at stake. Of course, I don’t recommend this for everyone. It’s just what I did, based on my own circumstances.

    Great post and thanks for sharing the information on the study.

  14. I stopped taking Arimidex ten days ago – after 26 continuous months of taking it – because, quite frankly, the side-effects have become horrible. Early on, people told me I’d experience most of the side-effects I was likely to have within the first month or so. Not so! I. The last six months or so, my side-effects have gone from barely tolerable to totally intolerable. I started making a list of my issues. They include: weight gain, hair thinning, joint pain, insomnia, increased cholesterol, significant swelling in hands and feet, mood swings/depression, leg cramps at night (used to be just calf cramps, but have now expanded to cramps in the arch of my feet and – most painful – cramps in the back of my thigh), I have been put on Prolia because of my calcium deficiency and the fact that the Arimidex is pulling calcium from my bones to replace the calcium in my blood being deminished by the Arimidex, hot flashes/cold sweats AND, most recently, I’ve had period of breaking out in a rash on my arms and legs (itchier than ten thousand mosquito bites).

    To top it all off, at my recent visit to my surgeon for my mammogram and visit with her, I told her about just a few of these side-effects. She is the one who first brought up the idea of taking a “holiday” from the Arimidex. She also said that she has patients who have taken a holiday or stopped completely and are doing well. She said that my particular risk of recurrence is very small, regardless of what I do going forward.

    When I went home and started my itemized list of what I hate about this drug, it became clear to me what my course of action should be. I haven’t talked to my oncologist yet, but I have to be the mistress of my own destiny. No one cares about my quality of life and my health more than I do. I am 61 and my husband is 69. We still enjoy a very active life, traveling, entertaining, and just doing as much as we can in our retirement. How many good years together do we have left with this level of energy? Yes, the Arimidex MAY give me something for all my suffering but – it DEFINITELY takes away something that I cannot get back.

    Sorry this went on so long but, thank you for the soapbox to stand on for a moment.

  15. I took a break from arimidex. Felt I had no choice…I ached everywhere…felt about 200 years old. and because no one could see that, I dont think anyone believed me. My original oncologist finally said sure stop it…if the symptoms go away then it was the pill. The symptoms went away and I stayed off of it for 2 months. Switched doctors and the new doc said try extremasin. So far: 5 weeks and no side effects…at least not body ache. But my skin has taken a nose dive with this stuff, and my hair is getting witchy. I only take it, frankly, for my husband….I would roll the dice and say scr*w this if not for him. Then the 2nd doctor explained that the oncotype was WITH the inhibitors. the chances for re-occurance were higher without. My oncotype was 23. With inhibitors. dang.

    1. Carolyn, I’m with you. I’d likely stop if not for my husband and oncologist both wanting me to continue. We are seriously considering ending at year’s end though. It’s good you switched AIs. I do better on exemestane for whatever reasons too. Wish I had had the OncotypeDX test. Good luck. Hope those side effects keep to a minimum.

  16. I took Letrozole for 5 months prior to surgery for a 10cm tumour, it successfully reduce it to 4cm, and for that I am very thankful to it. I continued another 3 months with no side effects (and 2nd mastectomy) but then side effects started kicking in suddenly with the list discussed above. I carried on with Letrozole for another three months but became aware that, as well as joint pain and balance problems, how much I was also unable to retrieve in language and memory and one day I found I could not even recognize the Ace of Spades when playing cards with a grand daughter: At that moment I knew that this was getting frightening and enough. (and with the various pains some of you have mentioned too getting worse) I stopped taking it and decided it was better without.
    My brain and most of other symptoms have got better but still have some of the side effects and though I stopped a year ago I am not back to the same level I was before though my hair has thickened again. My balance is still off and some neuropathy in my feet.
    Question: are these changes from aromatase inhibitors considered permanent? I have not been able to find much information on that.
    Thank you for your blog – it has helped me a lot.

    1. Gay, Someone (sorry, I can’t remember who) told me once that the side effects from aromasin (exemestane) are permanent because its composition is somewhat different from the other two. My oncologist claims the side effects from all are not permanent. I’m not sure some things can be put back in the bottle though, if you know what I mean, and I think you do. Once damage is done, can it be undone? Not sure. I’m sorry you are dealing with side effects even now, a year out. Perhaps things will get better for you. I hope so. But who really knows, right? Time will tell, I guess. Thank you for posing the question. Sorry for lack of an answer.

  17. I have been taking Anastrozole for about a year and a half. At first, I thought I was lucky–no side effects! But they started creeping up on me, slowly, so I didn’t really associate them with the anastrozole. Plus, the only side effect my oncologist told me about was that they might “make you a little stiff.” Ha! I spent the last few months basically laying on the couch, wincing every time I moved. I started looking at survivors forums and comments on blog posts like these. I discovered that a LOT of my problems are linked to the anastrozole–insomnia, joint and muscle pain, now numbness in my hands/arms at night (that was a new one discovered today–I was told it was probably a pinched nerve). Unlike most people, I have lost weight because food just doesn’t taste good and/or I can’t make myself swallow. I found, looking at research from Canada and the UK, that this is also a side effect of the Anastrozole. Currently, I am trying medical marijuana. If that fails, I am planning to opt for quality of life vs. quantity of life. Dementia runs in my family, so I question what good a few extra years are if I’m out of my mind anyway because I didn’t exercise, which is the one thing that can help keep me safe from dementia, because I hurt so damn bad from the meds that are supposed to make me live longer? I’m 55. I would rather have fewer, but GOOD years, than be in assisted living, lost and scared and paranoid, like my mom is now.

    1. Ellen, I’m sorry you have those side effects to contend with. QOL matters. A lot. My best to you as you maneuver your way through all this.

  18. Hello. Found you just today as I was considering taking a “break” from anastrazole. I’ve been on it for a year now and I feel like I’ve aged 20 years. Insomnia, aches in joints and some memory problems. I’m 62 yrs young! My cancer was caught early at 5mm, no lymph node involvement, but onco score of 30, Lumpectomy, chemo then radiation. My last dexa scan should bone degradation in left hip and lower spine. I’ve been taking calcium supplements which my MO recommended. I’m afraid of getting a recurrence because of all I’ve read. I remember my radiologist said that the tumor could have been there for over 10years. Who knows?! I just want to feel normal again and enjoy our retirement. Well thanks for listening.

  19. Thank you for this! I have been really struggling with Letrozole. My worse side effect is not common, but I am nauseous..every..damn..day! I go weeks struggling to keep food down, it is draining me physically and maybe even more so emotionally. I have been debating stopping. My family just doesn’t seem to get how terrible I feel. Thank you for making me not feel so alone!

    So sick of Letrozole!

  20. My breast cancer was stage 3C with 26 lymph nodes removed. Took anastrazole 3 1/2 years and most of the above side effects and finally gave up the anastrazole as I have lymphedema, eye problems, and worst have fallen bladder that hangs below vagina and was very uncomfortable while on the pill. Swelled lower, chafing, couldn’t go anywhere and quit the pill. Feel 90% better and been 1 year since I quit the pill and 5 yrs since cancer surgery, chemo, etc. I am 78 yrs. old and live in a retirement home as side effects made it impossible to live elsewhere (they do the cooking and apt cleaning). At least now I feel alive again. When I first learned I had cancer, my husband had just died 3 months prior.

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