The Dark Side of Aromatase Inhibitors, Part 2

The Dark Side of Aromatase Inhibitors – Part 2

I have so much to say in this post that I don’t even know where to start. I guess you could say this one is a bit of a rant. And that promise to work on being less wordy – well, not today!

I’m a firm believer that a good rant now and then is a good thing, even a healthy thing, so that’s one reason I’m sharing about my experience with the dark side of aromatase inhibitors.

First of all, many women hesitate to talk about the nasty side effects of AIs because they don’t want to be perceived as complainers or whiners.

What does this say about me? I’m not sure, but guess what? I don’t care.

I say if you don’t speak up, your doctor will just naturally assume (and rightfully so) that everything’s fine. If a whole bunch of us don’t speak up about whatever the issue might be, why should we expect things to ever change?

Can complaining a bit be a form of advocacy? I say yes.

As I mentioned in my previous post, the three FDA approved drugs most commonly prescribed for adjuvant hormonal therapy for post-menopausal early stage , HR-positive breast cancer patients are anastrozole (Arimidex®), letrozole (Femera®) and exemestane (Aromasin®).

It should also be noted that such drugs are also sometimes used for other purposes, such as treatment of metastatic breast cancer and even for prevention purposes.

AIs have been proven to be effective in preventing recurrence. This is a good thing and it’s important to take them and keep taking them if one has been prescribed for you and you are able to tolerate it.

I am not suggesting and would never suggest that a woman do otherwise.

The side effects of all three of these drugs are similar and include bone loss, weight gain, fatigue, hair loss, vaginal dryness, loss of libido, joint pain, insomnia and bone fractures to name a few. And of course, some of these same side effects also affect some women taking Tamoxifen.

The AI drug of my original oncologist’s (I’ve had five oncologists due to various reasons – trust me, I’m really not that difficult a patient) choosing was Arimidex®. I started on it shortly after finishing up chemotherapy and have been on it for two and a half years.

I am taking a short break at the moment because, well… because of that dark side.

At every oncology appointment since I began my adjuvant hormonal therapy, I was asked the same question; you might very well know the one, are your side effects tolerable?

Finally, at my most recent appointment I said, “No, they are no longer tolerable.”

Stating this was really hard for me and it was a very unpleasant appointment for a whole variety of reasons that I won’t go into, but I had reached a breaking point of sorts as far as side effects go…

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Shortly after I began taking Arimidex®, sleep issues due to leg pain and leg cramps (to name a couple) started up. Aches and pains in my joints/bones became significantly bothersome 24/7. I began to feel like an eighty year old woman when trying to get out of my car, rise from a chair, sit through a movie or just move around period. In addition, quite quickly after beginning on the drug I gained fifteen pounds (am I actually admitting this so publicly?) Last winter I was diagnosed with osteopenia (bone health previously was excellent) and this spring it became nearly impossible for me to walk to the stop sign at the end of my street because of the crippling effect on my feet and toes. Before the drug, I was used to walking two to four miles a day by the way.

I could probably write an entire post on each one of these side effects, but I’ll spare you too many details!

And I get pretty annoyed when my issues were/are brushed aside or attributed to normal aging.

I’m just not buying that. Why not?

Well, because I’m not that old, because I know my body and because I can pinpoint when my side effects/symptoms kicked in.

The bottom line is these issues became bothersome enough that I finally said enough and forced myself to finally admit (to someone other than dear hubby) that the side effects were no longer tolerable.

This is a difficult thing to say to your oncologist; at least it was difficult for me to say it to mine because my oncologist was adamant about me staying on Arimidex®.

I feel damned if I do and damned if I don’t.

I want no regrets down the road. After all I have done everything in my power so far to keep the cancer beast at bay.

Why would I stop now?

Sometimes you have to listen to your body. Sometimes you have to follow your gut. Sometimes you have to take a break.

I am sharing about my experience for the same reasons I share about so many things, in the hope that it might help somebody else feel less alone and more empowered to not suffer in silence.

I know many women out there are suffering in silence.

At every single support group meeting I attend the conversation always circles back to the side effects of these drugs. Someone always brings it up. Just the other day I received an email from a woman who wished to remain anonymous, but she gave me permission to share her reasons for keeping quiet about side effects. She had this to say:

” … the most troubling side effect is my lack of libido. Not only do my oncologists seem lost about this troubling effect, I don’t feel worthy enough to really push to get answers because 1) It’s embarrassing and 2) I feel lucky to even be alive; I feel like this side effect is small in comparison to what other women are going through.

I just needed to share this with you.”

Again, there’s that guilt thing… and not feeling worthy to discuss bothersome side effects with one’s doctors or push for answers is just wrong.

I also know that non-compliance is a huge issue with these drugs. Many women are not taking their little white pill for the recommended five years.

Is this a problem? Of course it is.

Do I understand why so many women stop? You bet I do.

I will even admit that I have seriously considered being deceptive about my own compliance. I have considered tossing my little white pill in the trash while pretending to take it.

Can you believe that?

Ultimately, I decided the heck with that deception nonsense.

So, what am I going to do from here on out?

My plan is to stay off all AIs for two months or so. I want to see how my body responds. I want to see if things improve. I want to see if I start feeling better.

My oncologist did say to me, “Nancy, you won’t go back on if you go off because you WILL start feeling better.”

This logic seems quite twisted to me.

I don’t necessarily agree with the not going back on part of her prediction, and this is one reason (only one) that we parted ways.

So I will detox for a bit and then switch to Aromasin®. For me taking a short break and then switching things up and trying a different drug is the best option right now.

Is it the best one long term?

Who knows, but I’m comfortable with my decision. It feels reasonable.

I wish there were better options. Women deserve better options.

I know that doing everything in my power to prevent recurrence matters – a lot, but my quality of life matters too.

Why must I choose between the two?

Why must anyone?

And finally, please read this outstanding write-up by the amazing Dr. Attai, who asked for input from the #BCSM community regarding side effects of Tamoxifen and AIs. Many thanks to her for wanting our input and then presenting her findings at the recent meeting of the Annual Meeting of  the American Society of Breast Surgeons. Maybe the medical professionals ARE listening, or at least starting to!

Okay, I’m done – for now! Thanks for reading!

If you’ve been on an AI or Tamoxifen, what side effects have you experienced?

Have your doctors been helpful in dealing with side effects?

Have you stopped taking a drug due to side effects?

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The dark side of aromatase inhibitors, part 2
Good-bye Arimidex®…

 

559 thoughts on “The Dark Side of Aromatase Inhibitors – Part 2

  1. I have been on Arimadex for about 3 years now and I am at my wits end. I can’t stand the pain any longer, my legs have swelled up and while I try very hard to keep a positive attitude, it has been a nightmare. I can’t sleep at night and can prove that with my FitBit. My husband could not believe the amount of awake time that showed up because I Can’t Sleep!!! He is scared to death of me going off the drugs but I have to say I am so tired of hobbling around like I am 90 years old. I have a 12 year old granddaughter and I am supposed to chaperone a field trip this week. I thought if I take enough Motrin, I’ll be able to do it, and I will go, but the toll it’s going to take on me is going to be rough. This is not me, I am active, love baseball and going to the stadiums to watch MLB games, but I can no longer walk to the darn park. I go to bed at night because once I lay down, the pain subsides for a while. My oncologist is going to advise against going off these drugs, but life isn’t worth living if you dead waking up in the morning knowing you are facing another day of pain. Of the ladies that have quit taking this stuff, have you noticed a difference pretty quickly? I know I should go for the full 5 years but just can’t do 2 more years. How did all of you know when enough was enough? Everyone in my family and my friends are horrified that I want to quit….makes me feel guilty on top of all the other emotions, but I just can’t do this anymore. Advice?

      1. Hi my mums also having hell have you started taking every other day yourself yet if so has it helped and did tte hospital say its safe or not I wish you well

      2. i’ve been watching lectures from oncologists and pathologists etc for weeks. They all say, ‘if you don’t take the drug, if you take a break you are not getting benefit. It doesn’t stay in your body and work for two weeks while you take a break etc.’ so either you take it and don’t skip it or dont do it. I can’t do it.

    1. I was diagnosed with stage 1 breast cancer, my onco score is 19 and finished my 4 weeks of radiation therapy. I took Arimidex for 15 days only because I wasn’t sleeping at all! 2 hours a night is the most I can get along with the other adverse side effects such as nausea, vomiting, bouts of constipation and diarrhea, and I was crying all day. I was so desperate when I talked to my oncologist about not sleeping that he prescribed Ambien. With Ambien i had nightmares and still didn’t get sleep. So he switched it to temazepam. It didn’t work either. I was at the end of my tether, I developed a trigger thumb, my right knee was swollen and very painful I had to get cortisone shots for my knee and thumb. My joints ached so much that just getting up from a chair or my car was very painful. I was 57 when I got diagnosed with breast cancer. I didn’t use to have joint aches before I took arimidex. I was later on diagnosed with depression and anxiety and had to take lexapro and trazadone. My oncologist decided that I should stop taking arimidex, wait 4 weeks then start taking Fermara. I was getting better sleep with trazadone and lexapro then I took Fermara from June 1-6 and my world turned upside down again with the same effects like arimidex. I can’t, I just can’t continue with this medication and turn into a zombie like state every morning, with stiff joints and aches and nauseated and vomiting and not sleeping. I’ve read a lot of articles about breast cancer and aromatase inhibitors and their effects on the physical body and the brain and I got scared. I’m a banker and in my head I could formulate ideas about investments and financial matters. When I started taking arimidex my brain became foggy which really, really scared me. All of a sudden I was groping for words, I could not remember names and events which just took place a day ago. It was a big eye opener for me. I could be dead in 6 months if I continued taking arimidex or Fermara or maybe still alive but feeling like a wasted 90 year old woman struggling everyday. I have prayed and wrestled with the decision that I need to stop doing this to my body. My onco score is 19 which means that the percentage of cancer coming back is only 12%. I would rather live with that than living in agony everyday. Living with a good quality of life even for a short time is definitely better than living longer but with struggles and agony. I took 12 weeks of medical leave, went back to work for 2 weeks then had a relapse because of Fermara. I’m going back to work on July 2nd and I really hope to put all of these behind me. Right now I’m sleeping better and eating better ( before breast cancer I weighed 130 lbs at 5’2, then down to 110, now back at 115). Arimidex and Fermara, even for short term use ( a total of one month) turned my life upside down like a nightmare that drove me to desperation and anxiety. Now I’m slowly returning to my old self, smiling, laughing and singing. My arimidex days were so sad and depressing that I lost my passion for singing, for how can I sing if I was always crying?

      1. Rose, and all,
        I am so glad to find this blog. I am too, got the ontype DX score of 17. My oncologist told me my 11% recurrence/spread byond my breast is only when I take Tamoxifen for at least 5 years. I had the surgery and took the Tamoxifen for 6 months. Side effects kicked in such as hair loss, memory loss, vaginal bleeding/discharge, blurred visions, and decreasing white blood cell count..among other things. Oncologist told me it is not “typical” to have lower white blood cell count, and the uterine cancer is “only” 0.1%. I am like you Rose, still working full time. Losing my mind/memory is very frustrating. Losing lots of hair every time when I shampoo is terrifying. The worst is that I am most likely toxicating my body now and may have the chance to get another new type of cancer is truly frightening.
        The reason why I was given Tamoxifen is due to my osteoporosis. Three weeks ago, I decided to drop both Tamoxifen and Fosamax. I became a vegetarian, eat almost 100% organics food, and prepare food at home as much as I can. I try to stay active as much as I can.
        When I see my oncologist, I know he will offer the other toxic option AI. I know AI doesn’t have the cancer side effect like Tamoxifen, but it will accelerate my osteoporosis. And of course, another stronger bone drug will be offered to offset that negative impact on bone from AI.
        The 11% recurrence/spread rate of my BC with taking either Tamoxifen or AI is only covering the next 10 years. I wonder why there is no stats about what happens after the first 10 years.
        I am not sure where I am heading and it’s a bit scary to travel this somewhat lonely road. But I am I found you ladies to share your journey and feelings.

    2. I have been on tamoxifen for 4 months and stopped the other day due to bad insomnia, hot flashes, moodiness, fatigue and muscle weakness. That was enough for me, feeling crabby and exhausted every morning. Almost immediately after stopping it I slept for 12 hours! I don’t care, would rather die in 5 years than take this awful toxin.

  2. There are a lot of holistic options the Health Studies Institute gives for prevention of cancer returning. I am trying to read more about these. It is hard to sort out what to believe. They are very anti-Pharmacy, stating all the corruption with the patents on drugs etc. I have been on anestrozole for 1 3/4 years. It is awful. For a short time, I took 1/2 pill every day. My doctor talked me into switching meds and taking the full dose. I have been on that one for about 3 weeks and am starting to feel terrible again. I am going to back off to 1/2 and try to read up more on alternatives.

    1. I’m 65yrs old woman have been on Arimidex for just a short period of time (3months). I was diagnosed with breast cancer last October 2016 and had my surgery in December and radiotherapy in March. The pain gradually kicked in after a month and the thought of having to be on this drug for the next 5 years isn’t a pleasant one.
      I have loads of side effects. The worst being the joint and muscle pain that results in me dropping items due to my loss of strength and of hand grip.
      I try walk a lot 10,000 steps a day (5kilometers) and do tai chi but I’m struggling with it. I try not to take any pain killers other than paracetamol. I suffer terrible head pains and loss of sleep. I’m single and have to pretend to my lover that everything’s ok. But I’m exhausted when he stays and takes me days to get over it. Previous to this I have been a very healthy active woman. I feel anxious about my future.
      I’m due to see an oncologist in couple weeks. The last one I saw wasn’t helpful last time when I mentioned my pain. She seemed annoyed with my complaining and offered a change to tamoxifen. I had already been told by my surgeon that it wasn’t a drug for my age so I’m not happy about that.
      Would it still be effective to take arimidex every other day or 1/2 the dose daily?

      1. Eileen, I am sorry to read about your side effects. Please discuss all of them with your oncologist. If he/she seems annoyed, so be it. You deserve validation and help in managing things. I have not heard of a doctor suggesting the efficacy of the AIs still holds if you do every other day or half the dose. Worth asking your oncologist, of course. I do know some women have taken short breaks. I took one for a couple months. Good luck at your appointment.

        1. Nancy: Thank God I found this blog that you have started, I found it tonight, and am so grateful to
          find I was not going crazy………….I had breast cancer, stage one in Dec. 2015, and 4 weeks of
          radiation and then started Anastrozole……everything was fine………in the beginning I had a little
          of nasea, but overcame it, took expensive probiotics and it seemed to work……then on the 6th
          month, over night I became like an old woman, everything ached and my body seemed broken,
          and I was using a cane………..it was a real puzzle to me……..so I spoke to my oncologist and her
          nurse said to stop it……………so I did for 11 days and she wanted to put me on something else
          but I had to go overseas and did not have time to get the new medication, so I went back on
          the anastrozole and the pain did not return……but of course I could not sleep, I had terrible
          leg cramps, feet cramps, but I held on………….and it was okay for 1 year, I mean I could handle
          all the little problems……….I took magnesium supplements for the cramps, expensive kind,
          and 1 year passed and then it became very very bad………I had develped carpal tunnel syndrome
          and was operated for it………and then the trigger thumb started……..and then my knees started
          to lock………….so the nurse said to stop and take a vacation……..which I did, a wonderful 45
          day vacation, I started sleeping again, it was such pleasure, pure pleasure…….the pains had
          gone…….my trigger thumbs I put into splints to see if they would get better, one thumb did,
          the other is still bad, but less than when it was very bad…….and then I started my new medication
          exemestane, the first 2 days were terrible, I had like a terrible stomach pain, ………so bad that
          I stopped………….stopped for 7 days to heal my tummy, and now I have taken for last 3 days
          I eat 2 tablespoons of peanut butter and then take the pill, my stomach pain is gone…….but can
          you believe………3rd day into pill and my knee is hurting and I am using a cane again………..just
          like that in 3 days the muscle pain, the cramps and now I can not stand up on my leg…….my knee
          wants to buckle……..I am really thinking seriously of not taking anymore of these pills, I am 71
          and want to live a long life without this kind of pain……..but I am spooked into taking them……
          I wonder, really wonder if they do more harm……….I guess it is like a Russian Roulette game…….
          One of my very dear girlfriend who had breast cancer has stopped taking the pill, she could not
          take it anymore. And ones Libido is totally gone. For a young woman this is very very tough. I
          am not young, so I am not whinning…………anyways Nancy, thankyou for opening up this blog
          as I did not realize so many other women had the same symptoms………..I was really wondering
          why my thumbs were giving out as well as my knees……….Hopefully soon they will find something
          more efficient that will not make us feel like old old women……….Thanks again Nancy, you are an
          Angel, God Bless You!! Georgina I wonder what the alternative medication is, and if it has had any
          success?

          1. Georgina, Welcome! I’m glad you found my blog too. I hope you find some of my posts and the accompanying comments helpful. Thank you for sharing your thoughts and thank you for your kind words!

          2. Yes I too want to say THANK YOU Nancy for this blog. Last night I read a lot on here and just sat and wept, because I realize that in spite of the “professionals” attitude that I’m just not coping well, that they don’t hear many complaints, that I just need to get more exercise,….blah blah blah,…it’s not true, women are suffering just like I am. I’m actually a pretty tough cookie, with a high tolerance for pain. I’ve survived 2 car accidents and been run over by a horse, so I know I can handle pain.

            I guess what means the most about finding your blog is, I know you and all these ladies “get it”. Prayers for you all.

      2. I know I’m getting in on this conversation late, but I just had to say I know exactly what you are going through. I was on Tamoxifen the first two years post surgery/radiation. The Tamoxifen was bad, but now I’ve been switched to Exemestane (Aromasin), and I am miserable. In addition to the joint pain/ hot flashes/poor sleep I was suffering on Tamoxifen, I now have muscle aches, headaches, my eyes hurt and feel strained often, my bones hurt, and I my body’s thermostat seems completely shot. If I don’t take the pill with a really good breakfast I am nauseous all morning. I’m exhausted all the time, and cannot even open a bottle or a can, or core an apple, because I have lost all strength in my hands.

        I’m trying to “tough it out”, hoping it will get better, but the more I read the more depressed I’m getting. Why do people act like this isn’t the reality of the situation? Why do I hear so many people say, “oh such-and-so was on that,…and she never had any problems with it!”?

        1. Kelly D., thank you so very much for your honesty. I have been given a prescription for Exemestane and am struggling with how to proceed.

          After a year and a half on Anastrozole, I stopped taking it about 4 months ago because I could no longer tolerate how it was affecting my sleep — I was waking up exhausted because of the vivid nightmares I was having. I didn’t realize how mentally “foggy” I had become until my mental clarity started to return — it was a disturbing revelation in many ways.

          I had a double mastectomy because I wanted to increase my chances, if even by one or two percentage points, of never having to deal with breast cancer again — I will not go through chemo again.

          I had a complete hysterectomy many years ago, but my oncologist tells me my adrenal glands are still producing enough estrogen to concerned about cancer showing up somewhere else in my body — hence the need for “preventive” drugs.

          But quality of life is everything to me. If taking these drugs makes me depressed and so full of pain that I become a burden to those around me, what is the point?

          Am I “allowed” to “go there”?

          1. {{Debbie}}

            Last Thursday I followed up a long letter (detailing how horrible my symptoms were!) with a phone call to my oncologists office, asking for a prescription for some pain meds. I asked for Tramadol, because I have taken those off and on after various surgeries and they don’t make me sick like anything with codeine in it, and for me at least, Tramadol is non-addictive.
            It also doesn’t make me feel weird or loopy.

            I am now taking one 50 mg Tramadol every six hours, and the pain levels have gone down remarkably. I’m still tired, still have some pain, still have the stuck thermostat, etc,…but I can live again.

            It was really hard for me to get my mind wrapped around the idea that I have to take pain medication on a regular schedule, but I think this is the only way I will be able to survive while continuing this evil, toxic drug.

            Would something like this be a possibility for you? I hope and will pray that things get better for you–this is the hardest thing I’ve ever been through,…I imagine much the same for you.

  3. I too have a lot of side effects which are getting harder to deal with. I lasted a whole month on arimidex but between the depression, lack of sleep and brain not wanting to shut down and be quiet while I was trying to sleep, I quit taking it. Was put on aromasin almost a year and a half ago and I wonder if I’ll last 5 years. I sleep better but I ache and hurt so bad. Everyone is right. I get up moving like a 95 year old lady. My toes, feet,knees elbows and everything hurts. I have to work full time and struggle daily. We all struggle and most people don’t realize what we are going through. Please take care. Don’t ever give up . Prayers to you all!

    1. {{Shannon}}

      Please see above reply to Debbie. Can you talk to your oncologist about your pain? I understand exactly how you are feeling!!

      1. Thanx for responding to my complaints. I did go back and read the reply. I’ve been handed back over to my family doctor for my follow up care. He has just recently prescribed Celebrex and I’m also trying physio. He recommended time off to see if things improve but can only afford to take a week now. I’ll keep booking my holidays when I feel I’m at my limit and hopefully I can ride this through. Take care. And thanx for caring

  4. I’ve been on anastrozole for not quite a year and suddenly just over the past week my left hip joint started giving me a fit and i had a day of really severe bilateral thigh and knee pain – definitely in the bone, not muscle, but I notice an unusual achiness in general after exercise and I am resting the hip. I have been cycling more than usual and I had just been out on a walk on pavement the day before the pain really started but I have never had a pain like this, and as I said this is not post-exercise muscle soreness. I called my oncologist’s office and talked with the nurse, so to help identify the cause they are having me to hold the anastrozole for 3-4 weeks and then start back, if the pain subsides and then resumes on restarting, they will know it is that; if it doesn’t change in that time, then they will do some x-rays to see what else may be be going on.

    I do very much appreciate my oncology office. Summit Cancer Care out of Savannah, Statesboro GA. Good people.

  5. I am just about in tears thank you for all your comments it makes me feel so much better. I have been on all three types of pills I am now 70 years old and I’ve started having bad symptoms after 8 months on letrozole it’s now been a little over a year and I’ve been on the other two pills and I have so much leg pain that I am thinking about having to get a handicap sticker for my license plate. I have an appointment to see my oncologist in late August we are currently out of town I have now stopped all pills and will wait and see if my leg gets better.

    1. Loren, Hi there, how did you leg go when you went off your medication? I went off of Anastrozole for 45
      days and all the pain left, no cramps, sleeping like a baby………but am back on another pill, exemestane and
      into 3rd day and leg pain is back and am using a cane…….I am 71 and will take this pill a little longer, give
      it a chance…….but it really is wonderful to be off the pill………just found this blog, am so happy to hear that
      all these women have the same symptons as I do. God Bless You! Sincerely Georgina

  6. Started arimidex 2 years ago, crazy rash appeared above lip, purple spots. Spoke with oncologist countless times! Denied it was arimidex but finally switched me to aromasin 1year later im in AL HELL! Still denying its the AL. Mouth ulcer developed took 8 months 1 culture 1 biopsy of “some bacterial” growth. Then 2 sores on my hand developed into a painful situation feb-july i suffeted until biopsy finally taken they have determined its a reaction to meds ! FINALLY I HAVE PROOF. Also same purple rash above lip is in my ears. Also developed trigger thumb several months ago. I agree about lack of sleep but my pcp has given me flexaril and its been good. I have come to conclusion that im getting rid of oncologist when i see him in august because to leave me on a dtrug thats killing me is not my ideal of care. When these meds started i suddenly developed allergies to every med they put me on! There is something going on chemically with my body and i know its the AL. Im ready to quit this no matter the percentage! I agree with others it the quality of life thats important! Being TOO sick to live is not living.

    1. I fully agree I have been dealing with joint pain all summer. At first, I thought it was my shoes, and then I thought it was my mattress. I have slept at the top of my bed and at the bottom of my bed and still wake up stiff and unable to move around. I saw my oncologist. He said it is probably coming from the Arimidex. Sunday, I had pain in my tailbone and I could barely scoot around to the bathroom. I have had pain in my left and right hip, cramps in my knees, and lower back. The tailbone pain was the worst because I could not walk. I plan to come off of Arimidex with the approval of my oncologist for one month. Your right it is the quality of life.

  7. My heart goes out to you Lin and all those who are suffering with the side effects of AIs – Here is my AI story: I have stopped AI’s after 18 months with the agreement of my oncologist due to unbearable side effects. We came to the decision together based on my particular case and absolute risk stats. I was on anastrozole and then on exemestane and had taken 2 drugs holidays over the period that proved the symptoms were directly related to AI’s. We agreed that I had given this treatment my best shot. I am unable to have Tamoxifen due to a chemo related Pulmonary Embolism. I decided in my case that I could no longer function and the drugs were literally ruining my life. My symptoms were anxiety and depression, palpitations, acute and chronic fatigue, eye problems, carpel tunnel, joint pain, cognitive impairment (fuzzy brained!), constipation and diarrhoea and more. I was also concerned about longterm bone density problems (I refused bisphosphonates – a personal decision). It is indeed important to stress every case is different, and many people report that they do not suffer in this way, but I wish to share here that I now have my life back – for me, being on AIs was a living death. However if my circumstances had been different or if they change in the future, I would never say never to revisiting the AIs. At present though my body is telling me “NO!” My oncologist has said that having made an informed decision I would never be judged by them now or in the future.

  8. I’m so glad I found you! So sorry for all of this craziness for all. I finished chemo in December after a double mastectomy (final surgery next week for implants) , and started Extemestane (Aromasin) In January. So here I am, looking up all these symptoms thinking I am going out of my mind. My doc put me on 3.75mg of Effexor to ease hot flashes about 8 weeks ago (GREAT…a medication for my medication side effects!!), and it does work (who knew, a strong anti-depressant would ease hot flashes?). I now deal with all above mentioned side effects, the worse being swelling of hands and feet, muscle and joint pain..and just pulled my calf muscle the other day and couldn’t walk for three days. Yes, I have become that 90 year old woman. Ugh. I have been so strong for the last three years; when I found out I had breast cancer my reaction was “bring it on bi&*hes!!” as I lost my precious 15 year old daughter to suicide three years ago. Yup, hate to whine about the greasy skin from Effexor, weight gain and all over crap feeling from Aromasin…but who am I??! Admiring all who are toughing it out with the meds and hope to be able to do the same but then, maybe not! xo

  9. Hi Nancy, I’ve been a long time reader and follower on Twitter. I appreciate what you do for the BC community. I found myself in a deep dive on Google last night searching for AIs and hair loss. I was dx’d in 2008 (ER+/PR+, chemo, rads). This October I will be 9 years NED. I’ve taken an AI since 2009. I was pre-menopausal at the time of my dx but wasn’t a candidate for Tamoxifen (long story), eventually choosing to remove my ovaries and start an AI. I first started on Arimidex and immediately experience most side effects you shared. The crippling pain in my feet and hips was not something I could endure. I finally said something and my oncologist put me on Femara. I felt somewhat better but my hair started to thin out. Again, not ok. Finally, she put me on Aromasin and I’ve been taking that for at least 6 years (yes, she wants me to stay on an AI for the recommended 10 years). I have joint pain in my feet and wrists, low libido, dryness and now it looks like I’m developing hair loss again. The hair loss has been slow but it’s definitely happening. I have an appt with my onc next month and I’ll definitely say something. Mostly because after 8 years of being on this drug, shouldn’t I have some choice to stop taking it. I’m really interested in hearing from your or your readers, if they’ve taken Aromasin as long as I have and was hair loss a major side effect for them. Thanks!

    1. Wendy, Let me first say, I understand. My hair is pretty horrible and I have a few other issues. Still, as of now anyway, I am staying on Aromasin for the duration, in other words for the full 10 years. My oncologist and I discuss this in depth at every appointment. Sigh…Definitely bring up your hair concern and any others, of course, with your oncologist. I’d be interested in what she says. As for you having a choice about stopping or continuing on this drug, you definitely do have the final say! These are tough decisions. Again, I understand. I’ll likely be writing about AIs again. And hair…Thank your for sharing.

    2. Wendy, Hi there, I am new to this blog, only on meds for 1 and a half years, and heard about the hair loss,
      so asked what I could do to hold that off……….if it is any help………..they recommended that I take biotin fast
      dissolve 5000mcg 2 daily plus B-12 quick disolve 50000 mcgand then I added on Collagen 4 a day……..my hair has not fallen out, it
      has thinned out…..but still have hair, they say that Biotin makes your body make more hair, so if some falls
      out, it is replenished with the Biotin. Don’t know if it will help you, but it is worth a try……I am religious about
      not missing a day…..now then I have not been as long as you have been on the pills. In your 9 years have you
      not taken a vacation off the pills? God Bless You, and anything you have on hair loss I would appreciate hearing
      about. Sincerely , Georgina

    3. Ah yes,..hair loss! I neglected to mention that in my other response to a comment. I’ve lost over half my hair on these drugs in two years!

  10. Hi
    I have been reading some of your posts and it is comforting but also concerning to read about all of these side effects of these drugs that everyone is experiencing. I was diagnosed with stage 2 breast cancer in February, this resulted in a partial mastectomy and some of my lymph nodes being removed. Rightly or wrongly I have turned down the chemo and radiotherapy and obviously the herceptin but 2 months ago I started taking Exemestane (aromasin). All I can say is that I actually felt well until I started taking this drug and now I just feel dreadful so much so that I decided last night to stop taking it. I do have an appointment with my doctor in a couple of days time but I cannot help feel that anything that makes me feel so ill cannot be good for me. I also cannot imagine taking this drug for the next 5+ years especially if it can have such a bad effect on me. My hair is falling out big time, I keep losing all sensation in my legs and feel that at times to put one foot in front of another is a real effort. I have also constant nausea, fatigue and insomnia and this is just after 2 months of taking the pill. How can this be good for me? and yes I am scared about what the future holds but I also cannot continue on feeling as bad as I do. I do hope you don’t mind me sharing this with you all. Thank you

    1. I’m new here and have been diagnosed with Stage 1A, HER2+, ER/PR+ breast cancer. Can I ask why you turned down treatment with chemo and herceptin? I want to do the same thing.

      1. I was told with stage 1 bc chemotherapy was not appropriate. Double check that recommendation. You can get very good 2nd opinion online! I have stage 1, less than 1cm tumor, lumpectomy, iort. No lymph nodes, slow growing cancer. Diagnosed at age 68. So lucky to not need chemo or radiation beyond iort (inter operative radiation therapy) I have estrogen Sensitive cancer. This rec may not be appropriate for other kinds of bc.

        I have 19 months more of arimidex. I have fatigue, foggy brain, achy joints and muscles. I walk every day for 30-40 minutes. It really helps. I also do weights from “save our bones” website, free online. I pay special attention to the areas where I have osteoporosis. This has really helped.

        I am so happy…..because happiness is a decision…….I am so thankful for such great docs, a really good prognosis, early diagnosis. More life with kids, grandkids and hubby.

    2. Hi Sue, you are very brave………all those thoughts that you mentioned above I have had……….to stop or
      continue…………I wish we had more information, ……………cause even though I say God Bless the pharmaceutical
      companies who found this drug, at times I think……….its a pretty good business, and it sure seems to be
      harming a lot of us………..so I have many thoughts, as I think you do too. Sincerely Georgina

  11. Wow! I am so happy to find this site. I had a double mastectomy 5/16 , 7 weeks of radiation and anastrazol for 15 months. I could not do chemo due to multiple blood clots , pre-cancer. My Onc.keeps telling me she never heard of these side effects! I’ll direct her to this site, since I’m obviously not the only one have every one of these horrible side effects. Best of luck to all.

  12. Just found this link & signed up for updates from Nancy’s Point – right now I am questioning WHY I have to take Anastrozole for 10 years – Yes, I know the statistics & my re-ocurrance percentage is under 10% if I follow my Oncologist’s recommendations. It simply does NOT MAKE SENSE to subject myself to the annoyances of this tiny pill & the associated infusion for 10 years. I am 69 & have always led a very active life but now my body joints ache, my feet hurt etc… However, after reading a sampling of these responses I am feeling FORTUNATE that my list of complaints are still bordering on “annoyances” – started Anastrozole in February 2017 (Surgery/Diagnosis Jan 2016 – Stage 2, Invasive – 18 nodes removed) . It is my intent to learn/educate myself to make an intelligent decision … R

    1. Rah, Welcome! And thank you for signing up for my updates. You don’t have to take Anastrozole for ten years. It’s up to you. Only you can decide what is tolerable as far as side effect issues. I am choosing to stay on Aromasin, but I just take it one year, actually six months, at a time. Sometimes thinking in shorter chunks of time helps make it seem not so overwhelming. Thank you for sharing and good luck with things.

  13. So happy to read all of your stories. I am 62 years old, diagnosed with stage 1 er + her – invasive ductal cancer last year. Luckily, my lymph nodes were clear and my oncotype was a nine. I have been on aromatase inhibitors for one year. On Femara I found that my hands would lock closed with cramping, and my Onc switched me to arimidex. Generally the arimidex has been better for the last 8 months, but this week the muscle cramps in my legs have really increased. Life is tough when I can’t sleep. Your stories have brought me great relief as I was sure I had blood clots in my legs…..now I know. Thank you.

  14. I am so happy to find this site. I hope you will forgive me for posting as my side effects are not as bad as the ones I’ve been reading about. However, I feel I just have to talk to someone. I was diagnosed with with a ductal carcinoma in my upper inner quadrant of my left breast in January. My mammogram did not show a lump, just a fuzzy spot. The doctor and the imagining office was so very thorough and was determined to get to the bottom of the fuzzy spot. She did every test in the book. The weirdest was the MRI. I swear that that goofy table was designed by a contortionist with Circ d’Solel.
    I had surgery in Feb. 2017. The tumor was very small and the surgeon removed the entire milk duct and 4 lymph nodes. There was no cancer in the nodes. The surgery was same-day surgery and went so smoothly that I was able to call my family and friends immediately after surgery. I KNOW I’m blessed! The only post op problem I had was a necrosis which developed on the incision where the surgeon had inserted a gama probe. It is healing well.
    I’ve been on anastrozole since March. I too wonder why in the world I have to be on anastrozole. If my cancer was so small and if I continue to religiously have yearly mammograms, I wonder why I have to be on it?
    At first the only side effect I had was what I call a “woosh” — a major hot flash. Much greater than the hot flashes during menopause. However, now I am having stomach problems. About once a week I get upper stomach pains and loads of gas. The area is where my gallbladder was. But I had that removed in 1965. I called my oncologist’s office and got to speak to her nurse. She passed it off and said she would tell the doctor. She said that she did not know of this problem as a side effect. I looked on the web and stomach pain IS a rarer side effect. In fact, I found this out on Accord Pharmaceutical’s website as they make the generic Arimedex.
    To complicate the situation, I am also hypothyroid which makes me very tired due to the fact that in 2008 I had to have my thyroid removed due to a 1 cm tumor on my thyroid gland. When I was hyperthyroid I had all this energy, My endocrinologist has the personality of a dead fish. No bedside manner what so ever. My gp did blood work and found my thyroid count to be low so I went the next month to the endo and she said my count was normal and to come back in a year. You’d think she would want to check this again in a few months. I’d switch endo drs but they are all in the same practice.
    Another complication is my fasting blood sugar level is creeping up as well as my blood pressure.
    I am insulin resistant and DO NOT want to be come diabetic. I am on drugs, but this really concerns me.
    Have any of you had these side effects? I’ve found ladies in the U.K. who have posted things about these two
    things creeping up. My gp just increased my bp meds and now they make me lightheaded and dizzy.
    Now my legs are also feeling weak. I cannot stand still for long periods.
    Between the hypothyroidism side effects and the side effects from anastrozole, I feel like I’m between a rock and a hard place. Please forgive me for ranting, but I just do not know what to do.
    I do not have an appointment with the oncologist until January 2, 2018. If this continues I will make an appointment with my oncologist before that. I do not want to speak with her nurse on the phone and have her pass it off. I know my side effects are minor and I AM extremely lucky. I hope you all will be feeling better!

  15. It’s been really interesting these posts, so glad I found this site. Was diagnosed 2011. Was on tamoxifen for 5 years, which to be honest wasn’t too bad. Then I got switched to ARIMIDEX. Since taking it, have had the most horrendous muscle and joint pains, so,I have so, sometimes I can’t even hold my iPad or lift a kettle. Spoke to my onc, who said I could switch back to tamoxifen. Two months post switch and the pains are just as bad as before. Anyone else switched back? How long before the side effects started reducing?

    1. In short, I was diagnosed and successflly treated. I have tried all 3 inhibitors in the last 2 years. I have taken several breaks as all the side effects have been unbearable over time. I started taking Osteo Bi Flex in late August and it truly did help alleviate some of the bone and joint pain. However, I’m exhausted from lack of sleep and my midsection is huge. I’m ready to quit all together. Thank you all for sharing your experiences. It helps us validate for one another that the side effects are real.

  16. I am stage 1A triple pos breast cancer. Bi lateral mastectomy and 5 mos of chemo and a year of herceptin.
    I was told that Tamoxifen was just as impt as the chemo . That my risk of recurrence is significantly higher without the Tamoxifen and then the AI’s when I’m in biological menopause. He ordered the menopause blood work at my final visit after my last herceptin treatment. He also said that tamoxifen simply doesn’t work on menopausal women, but everything I search said both pre and post Menopausal women are taking Tamoxifen and the post M women are taking tamoxifen and AI’s.

    I struggled to be well and was happy to lose a LITTLE weight after treatment and i was mortified by the prospect of the Tamoxifen side effects. Dr and PA and GP all said I need to be on ‘something’ for the hormones. I pleaded with them all that i was very upset and didn’t want to take them. I apparently am metastatic , based on seeing some of my hospital records online. NO one has ever used that term with me. No one has told me what my Onco score or what an onco score is.

    I sat ont he tamoxifen for a month and took it, crying , pretty much every day for the first week.
    It didn’t take long before i was totally miserable. Astoundingly dramatic and disgusting hotflashes and night sweats, sleeping issues, itching skin, muscle and profound joint pain, headaches, PMS emotions daily, feeling like i was starving literally all day every day no matter how much I ate. I don’t know how much weight i put on, i definitely erased all the weight i lost in treatment and post surgery. I lost track of the side effects. Depression, couldn’t remember vocabulary. THe end of the line was when my hip and the bones in my feet started to hurt and I could no longer walk up my own stairs without pulling all of my weight up with my arms on the rail, one step one foot at a time. If I get up or sit down i see white blinding light it hurts so badly. I told the PA and my oncologist all of this every time i saw them. My PA said, the knees? Arthritis, join the club! I’m only 51 and didn’t have full blown arthritis in my knees or hips and my foot bones didn’t hurt nor did my hands both hurt just by my living, not even using them. The appetite was misery. No satiating my hunger. It was humiliating. HOrrible. THey didn’t care, minimized it. That’s all i can describe it as because no one took me seriously.

    I stopped. I quit and told them and the oncologist said wait until Nov when you’re a year out from your last period and take a break and then you can try an AI.

    Also the PA said , ‘you don’t normally hear about joint pain with Tamoxifen…AI’s yes but not Tamoxifen…’ (She’s also a breast cancer survivor). So what, I HAD not just joint pain but my knees have permanently been destroyed and my hip damaged and i feel like i have early stage alzheimers because i can’t find words or names when I’m speaking. I was told the only Anti Depressant i could take was Effexor (i’ve reluctantly been on wellbutrin) . Effexor also causes weight gain and anxiety and suicidal thoughts and other things despite it supposedly being a drug to make you ‘happy’. I did not accept it. 53 days was all I could last. I reached out to people on facebook. one cancer survivor who was lucky enough to have no side effects called me selfish and irresponsible because i had kids and if she has to ‘take a little pill’ to be around for her son she’ll do it. Meanwhiel she is only taking a little pill if she has no side effects which she claims and doesn’t seem to be impacted. Another lady reached out and said she was asked by her dr if hse could do it for just a year and she did. I couldn’t even make it two months. A year would leave me in a wheelchair. No question. Fat, sweaty, in a wheelchair, sleep deprived, itchy, ugly, balding, whatever was left of my life as a woman would be gone. I thought i woudl get my life before cancer back and better. This is ruining my life. I was pressured to get my depression under control and told i have ‘mental illness’ and need to be on anti depressants (I quit the wellbutron two days before my dr visit because it’s not freaking working, of course i fell apart w hich really bothers me that this drug is so powerful that after two days i’m almost committable . That’s not right. And they’re minimizing me and my concerns and telling me i have to take AI’s and it’s only a matter of if I have to have my ovaries removed or have a shot and take AI’s. Not if I will but how I will do it. They do not hear me that this is not going to work for me. I am insignificant and unheard wherever I go. My life is over. My spouse was not there for me during diagnosis, recovery, treatment and he hasn’t touched me in over a year. I have three kids , i’m an artist. So I’m too old to be visible to the opposite sex, i’m unemployable outside of mcdonalds or a grocery store, i’m totally uninsurable, and now if I don’t destroy any hope i have left by taking AI’s, i’m a bad mother, a wreckless self centered mentally ill person who is exaggerating things and I’ll get cancer again. I dont think i was even supposed to be born at this point. Truly.

    1. Hey Viki! We all have felt your pain in some way or another. You are not alone and go ahead, rant away! I just completed my first year ( I took about a month off) of anastrozole for the first 8 months and now letrozole. These darn pills are poison, no doubt about it. I ended up with severe carpal tunnel in the right hand and had surgery, now I have De Quervains in the same hand. Not one doctor will admit it came from the evil pills. Even though you can find a hundred scholarly articles and studies regarding AIMSS (aromatase inhibitor-associated musculoskeletal syndrome, yes, it has a name!) and every physical and mental side effect you describe. You will also find numerous articles by people who do validate all of these side effects and their conclusion is that the whole medical field is failing these woman by not addressing, and treating these known side effects. Side effects that cause many woman to quit taking them early on in treatment.
      Even the drug flyer my oncologist gave me before I started the poison said carpal tunnel was a rare side effect, but he denied it to my face with a condescending smile when I told him I suspected I had it.
      I am an artist too, sometimes. My job is working with my hands. I love working with my hands, I am good at it. I’m no dummy either, but I do remember the brain fog right after I started the pill. It was terrible,I thought for sure I was losing it, but I must say, it has diminished and I no longer feel that way.,
      And I know about the guilt, we all know about that , too. you are not alone with that one. Try not to let anyone bully you, especially those who just aren’t living in your shoes. We are all so different, our cancers are all different and none of us wanted it or wants it to return. But not all of us are blessed with huge support networks, rich husbands and good insurance or are big stars who can do yoga and get massages all day long and declare they now try to live a stress free life and only eat fruits and vegetables. (oops, got on a roll there)
      Viki, I found that I need to take a little time, just for myself. Go for a ride, play the radio loud and sing badly , walk on the beach, walk in the woods, just get some fresh air. Air out my head. It helps, You need to do something for you, only you. And NOT feel guilty about it. It’s tough, but be defiant, curse at the sky if you like. Cry if you like. But don’t give up yet.
      I know that I expected to just get back to my life after surgeries and treatments. All I had to do was take a little pill for 5 years, how bad could that be? OMG……….the realization that life has been forever altered and that I will become obsessed with the countdown to 5 years and the worrying…..oh boy, that is constant.
      If I don’t take the pill, will it come back? Will it come back anyway, even if I do? It’s 1 o’clock in the morning, how much sleep will I get tonight?
      All I can tell you is that you are not alone…………..Thank you Nancy, for giving us all a voice……………
      I better go to bed now………………..

      1. i can’t take it. i’m reading all these stories and i can’t take the drug which means i’ll get brain or liver or pancreatic cancer and die. Myentire life a failed unhappy existence . I dont enjoy anything. The idea of going anywhere gives me no joy, i can’t think of anything i like to do except watch great movies and tv shows uninterrupted in a clean house> I dont get to do those anymore. I’m a photographer. I need my hands, i need to be able to get up and down and hold heavy camera gear and use a wacom pen while I edit and type away at my PC. I can’t take them. I’ll find a way to kill myself. I already can’t sleep and i’m exhausted. Thank you for answering and understanding. I wish i had your stamina and light and ability to hope.

  17. OMG! I can’t believe I found this blog! Breast cancer removed last October with two surgeries before clean margins. Cancer had not spread to my lymph nodes. Followed with 21radiation treatments. 4 months in with anastrzol my symptoms began. Trigger fingers, carpal tunnel, one knee swelling, ankle pain. This 59 yo feels like she is 90 by the end of the day. And then to bed and doing it all over again the next day. I cried to my onco because I feel so fortunate regarding my cancer and the fact that I didn’t have to have chemo….I felt guilty about complaining that my joints were hurting. Here I am now trying to decide if it is worth it. My doctor has never given me any percentages not cancer numbers. They were going to put me in a trial of testosterone vs placebo but they said my estrogen was 50 and it needed to be 10???? What does that mean. I called to get back in and they said come back in January. What?..?

    1. Donna,so glad to see your post along with others, but so sorry about what you have to go through. Did you have an Oncotype DX test done? This test should give some statistic indication of recurrence and metastatic percentage if you take meds for the next 5 to 10 years. The test report is mainly used to determine if you need chemo or not. The ideal estrogen level is around 10 pg/ml. Especially if your BC is estrogen positive, the estrogen level needs to be down to that level. Your medicine is supposed to reduce your estrogen production, but unfortunately comes with all these horrible new issues. Try to keep your spirits up and research more. Your hard work and instinct will guide you to the right direction.

  18. Thank you all for sharing your symptoms and pain! Who knew that the adjuvant theraphy was so damaging long term. I am an academic with teaching, writing, consulting and interactional demands that I loved and have been very good at over the years. I had surgery Feb.17/12. Stage 1, encapsulated, 1 lympnode. two levels of radiation and it knocked me out for teaching for the rest of that term. Once the brain fog and fatigue lifted the leh and knee, shoulder and elbow pain began. I saw my oncologist and aked for a “holiday” from letrozole. He scoffed and said try it for a few weeks. The aches and pains hadnt subsided when I saw him again. He said “see” now get back on them. Then it was said the letrozole was to go from 5 to 10 year regime. I couldn’t face 5 more years! I have been a misery and its worse because I still work.

  19. I know exactly what is happening when we take aromatase inhibitors. I was an experiment – a human guinea pig – who voluntarily applied topical estrogen/progesterone daily for two years (HRT). I knew it would help me sex drive, stay youthful and help me sleep at night. Well, breast cancer does not run in my family at all, I exercise four times a week and I eat clean – I am a nutritarian. I was diagnosed with breast cancer while using HRT January 2016. Stage two with 85% ER+ – no chemo, no radiation, double mastectomy. I knew what caused it (HRT) and I stopped HRT immediately. Within one to two months of stopping HRT (before my surgeries), I noticed large dark circles under my eyes and bags to boot. I am slender and fair so it is truly noticeable, not to mention a thinning face with a decrease in collagen generated. After my surgeries, I took Arimidex for six months. I had all the side effects you describe on your blog. I stopped. I am not vain, but it is incredible how we age so quickly when the estrogen is eradicated. I have more wrinkles and the dark circles and the undereye bags remain. I aged seven years in one year. I would never take estrogen supplements to get back the youthful appearance, but because I look like a zombie even with makeup, I am considering plastic surgery. If you know anyone using HRT or estrogen supplements, please advise them to look into the Fall 2015 study on the higher risk of cancer when on HRT. I only found positive press about HRT prior to that study release in Fall 2015. Just my story – hope it helps someone understand it all.

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