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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…

Do you want to read more articles like this one? Click Here.

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®…

 

631 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. Tha’ts actually not true. The half life of most of these drugs is 3 weeks, so you won’t even start to feel better till month 2 off them.

        2. I research everything, and when I saw the side effects that are considered normal for Letrozole (Femara) I freaked. It sounded like just another round of chemo to me. A 5 year round. The only thing missing from the list seemed to be the nausea. For me, it isn’t QUITE that bad, but I’ve only been on it a year. My hair is coming back, but it still just below the ears, and I haven’t been on any other hair-loss-causing treatment since over a year ago.

          One peer reviewed study in either the AMA Journal or one of the Oncology journals studied taking 2.5 mg every day vs every other day. The results were that there was absolutely no difference in results. I try to take mine every day, but if I miss a day, I don’t care, and when the pain gets to be too much, I intentionally skip it so I can function.

          I also question other things. They all say cancer will “probably” come back in 2 years if you don’t take it, but when you read “survival rates” on it, vs not on it, it says that your mortality rate on it goes from 24 years post surgery to 20 years. I don’t know anyone in my family who lived much past 80 to begin with. I don’t even know if I want to live to 90, but I do know I don’t want to feel like 90 at 60, so I can make it to 90.

          The leg cramps are nightmares and they get worse. I also find my hands and joints are stiff. I got my first ever migraine like headache in my life recently, and stopped the femara 1 day and everything changed, in just 24 hours. No headache, no exhaustion, no leg cramps that made me scream (and I have a high pain tolerance. I gave birth without meds). No fuzzy sight, no foggy brain.

          I feel like an arthritic 90 year old, and I am 60, and was in excellent health prior to this merry go round. At my office, even when I was on the “red death” \chemo therapy pump and getting sick to my stomach, I could go up and down the stairs without even thinking about it. Now, just walking from my office to the front office hurts.

          My oncologist is a total jerk, (my former that is, I am searching for a new one), refused to listen to anything, and insisted on doing bone scans, ct scans, MRI’s, sonograms, etc., etc., etc., on places that there was NEVER any indication of cancer, telling me he was POSITIVE I had cancer in the liver and lungs though absolutely NOTHING clinically backed up his claim, and though none of the other members of my medical team agreed with him. Now he is refusing to refill unless I let him do scans that will cost me THOUSANDS of dollars out of pocket. He even rejected the findings of a PET scan that said I was 100% cancer free.

          So, now he has refused to refill the femara, and I’m debating if I should just give it up. If my GP could prescribe it I would stay on it. If an OB/GYN could, I would stay on it, but I cannot deal with the HUGE cost of the tests, the attitude of the jerk, and the pain for a possible 2 to 4 year difference in 20 years from now.

          1. Don’t know if you still read this but should love to know the article you saw the data about survival rates on vs off AIs. I’ve been looking for this info forever! Thanks!!

          2. I appreciate your post and so much of what you shared resonates-especially the side effects that you described. I have been taking Arimidex for 2 plus years. The joint pain gets to me and I’m often convinced that I’ve truly turned 90, somehow. I have to constantly remind myself that I was active woman who walked 2 miles day, immediately following chemo. But as the joint pain infiltrated, my walking slowed down and my muscles have become flab.

            However, I SORTA found a SOLUTION —for me. It’s less than ideal and maybe even reckless to share, but it has helped me tremendously. Turns out, I have an inflammatory issue (in one specific area of my body that was brought on by a known cause.) I receive Cortisone shots in that area, for that purpose, and when I do, every Arimidex derived joint pain goes away. It takes 3 days or so to kick in and then I am pain free for 2-3 weeks. After that the pain is a nuisance but no real bother for about a month or so. Then, it all starts to creep back in—feels kinda like when you first start taking the AI’s.

            All in all, I get a 2 month break from the spirit-robbing AI pain. That has been enough to help me stay on the AI daily. The breaks let me know that I am still healthy and able—even my mind tells me I’ve suddenly turned 90, again.

            Cortisone has its own side effects and some would say avoid it. But I know that some conditions call for frequent Cortisone treatments and folks survive it. (Pathetic reasoning, I know.) I try to go as long as I can between shots and only get them 3-4 times a year, but I have decent quality of life for several weeks at a time, while staying on the AI, for which I’m grateful.

            Of course, do your own research. Meanwhile, I’ll close by noting that my oncologist said again today that the best way to relieve the AI pain is weight bearing exercise, including walking.

    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. Rose, I walked the same walk. Have been AI free for a couple months now- the only lingering effect is my right thumb. constant pain that ranges between a 3 and an 8. I am hoping it will ease, but am thank-full it is my only remaining painful symptom. I was poo-poo’d by my oncologist when I would tell her about my pain. I have learned a lot about the natural aspect of survival and am continually educating myself. God bless the AI uses that do not have the debilitating side effects,

    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.

    3. I spent one Year From Hell on Anastrozole and finally insisted on any other AI and was put on Exemestane and within 3 days went from a painful and crippling 95-years-old to a pain-free and active 35-year-old. I am presently 75 and starting my second 5 years on the Exemestane. I do have some joint pain and arthritis and my bone density is diminishing, but studies have shown the overall effect of extending the drug is beneficial. Pain from inflammation has also been almost eliminated by cutting from my diet all sugar and alcohol, and reducing carbs and dairy, keeping my weight down and walking and stretching.

      1. I’ve never heard of Exemestrane. I’m ready to switch to something other than Anastrozole. Been on it for 3 years and the side effects have taken their toll. Will have to ask my doctor about this. Thanks for sharing.

    4. Lin, I know how you feel. My o colonist started me on Arimidex and after about 2 months I was so much in pain I told him I will not put up with it. So he put me on Aromasin, this was lots better for about 6 month. Not that I was pain free but it was bare able but after that it just got as bad as before. So he put me on Tamoxifen, that wasn’t too bad for a while but it has now gotten to the point where I said enough is enough!!! In August it’ll be 4 years since I had my mastectomy. My oncologist told me today I could go off for a month and see what happens but it the pain is not much better I will go off it for another month and just see what happens. I have another appointment in June to talk things over. In the meantime I will try to research if there is really nothing else that can be done without taking that “crap”.
      In saying that I talked with a woman that had a mastectomy in 2001, had no Chemo and no radiation and also refused any sort of medication and she doing pretty well. If I can live another 17 years with a better quality of life, why not give it a try. Our time on this earth is a mistery anyway, nothing we can change about it.
      I refused Chemo and radiation after my mastectomy too.
      Maybe my story will give you the courage to follow your heart. Like you, I can barely walk, climb up stairs, get in or out of the car, if I fall I can’t get up without help and I also feel like 90 and I’m only 68!! Blessings

    5. Take it with Vital Protein’s Collagen Peptides, 1 scoop 2 times a day. You can also add Arginine & Glutamine. I’ve been on this about 3 weeks for an injured shoulder but within a week I was nearly pain free from Examestane side effects! I am so surprised & happy because the drug was very dibilitating.

  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

        1. Please think about not taking Celebrex – I was on Celebrex for a little over a year and it gave me an ulcer which made me go to ER for a stomach bleed that was the scariest thing ever! I was in the hospital for three days and now can only take Tylenol – not even baby aspirin for fear of going through the bleed again. It has been a real challenge for me – and I now am on Anastrozole for two months now and my pain is really bad and all I can do is continue on Hydrocodone (only when I can’t stand it any longer) and that is given from my pain management doctor who also has been treating me with epidural shots. All because I can no longer take anything else for my pain – thanks to the Celebrex! Who would have thought. I got an Oncotype score of 19 at 77 years old and it is what put me on the anastrozole and the side effects, especially mentally are incredible. I am a very smart person and very educated and I can no longer remember things, can’t find the right words to say when I am talking with someone and being moody as can be – I need my estrogen before it increases my bone density results – I am already diagnosed with oxypenia (sp?) and am now worried my bones will suffer. I travel a lot but it is also affecting my ability to do that. Not your normal 77 yr. old and all due to DCIS Stage 1 Grade 1 – now my life is hell because of this medication – as well as the pain control due to the Celebrex – I swear they are trying to kill me! Joking a little there but it sure seems like that. I will be seeing my oncologist next month and will probably be telling her I am not going to take it any longer. My husband is with me on this – and my outlook is MAYBE in 5 years I will get it again – or tomorrow get cancer somewhere else – could happen! And in 5 or 10 years, they may come up with other choices and if it is my time to go, well so be it – I know where I am going to go and the alternative does not scare me. What a world!!! God bless all of you who are in this spot with me — and to think I am the healthiest one in my entire family! Ha!

    2. I’m starting my 5th year of treatment
      2 yrs on tamoxifan and starting 3rd year of a anestrozole – I’ve had a lot of leg, feet and joint pain and recently started taking
      krill omega50 twice a day and it has made a huge improvement on my leg and foot pain.
      Please give it a try!

  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.

    1. Sarahlou,
      It was wonderful to hear your accounts of the AI’s, I too have decided not to use the bisphosphonates. My oncologist wanted me to do six month treatments for 3 years. I have done one year. The Zometa was just as bad as the AI’s. I felt horrible on my second treatment, a cough lasting a month and urinary tract infection (which I had never had before). I am in terrible pain the exemestane has finally built up a muscle toxicity in my back. I couldn’t even get out of bed this morning. I am ready to try more alternative medicine for keeping cancer at bay. I wonder why we can’t get blood work monthly to show how our estrogen levels are doing. If they began to come back up then perhaps taking the AI’s would be necessary. I am stage 4 breast cancer so naturally I am concerned about re-currance. My oncologist says my cancer will likely resurface in 8-10 years. I am now 3 years out, she said I will probably be on an AI for the rest of my life. I can’t pick up my grandsons, exercise, or enjoy just basic daily life activities. I started on arimidex and had horrible knee and ankle pain, I couldn’t even get up the steps. My oncologist switched me to exemestane, I have been on it for almost 2 years before this level of muscle toxicity. It is the only thing that I can relate this kind of pain too!! Thank you for sharing and how long did it take to feel better, I haven’t taken my pill for 3 days and still I’m miserable…

  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

      1. Hi, Georgina. I am new here but wanted to relate my story regarding hair loss. I was diagnosed January 2014 with Stage 1, Her2-, ER+ BC. After radiation, I was put on Arimidex. Sentinel node biopsy showed no spread. Later after discussing the (dare I say it) sexual side effects, my GYN referred me to a Doctor in her office who specializes in women’s sexual health. Her doctoral thesis was on treating BC patients who cannot have estrogen with low doses of testosterone. I get 3 pellets inserted in a hip for a total of 75 mg every three months. It has greatly helped the sleep, lubrication, and hot flash problems. (There are other issues that arise from testosterone but I can live with those since they cause no pain or illness.)

        After my April 2016 bone scan, I was told there was thinning of my left hip bone. The PA in the Oncology office put me on Fosamax for my bones. That was in July of 2016. Coincidentally, within one month, I lost 60% of my hair. Let me repeat, IN ONE MONTH. The doc’s told me it was probably menopausal, but that would be a gradual thinning over time, not so quickly. This was accompanied by my scalp itching all over. So attributing hair loss to Fosamax, I opted to quit that and take Caltrate with D3 and run. I was 61 at the time so to begin running was a feat in itself. Weather permitting I now do 4-5 miles each time I go out. Have lost 45 pounds. My next scan is in April 18 so we will see. November of 17 I ran 130 miles total and my scalp started to itch again and the regrowth of hair I had seen has now fallen out, but I am not on anything but the Arimidex and the Testosterone. Right now I am trying to determine which of these hair loss is related to. Metabolism of the testosterone results in dihydrotestosterone (normal) but in male pattern baldness the DHT goes to the hair follicles and says “we don’t need you, stop what you’re doing”. The doc that gives me testosterone suggested using men’s 5% Minoxidil foam occasionally to help, so I do that.

        Also, after running so much in November 2017, my left hip began to hurt along with the left knee. My surgeon told me to be sure to mention to the Oncologist when I went in this month. Her response was “you probably have arthritis”. Well, thanks a lot. After reading the posts here, I have decided that is what I have, but it is from Arimidex not from age. I also regularly get cramps in my feet, and have experienced bouts of Plantar Fascitis, and Freiburg’s syndrome in my feet.

        Also, those of you who have had nodes removed, the docs may warn about lymphedema in the arm on that side, however, I have continuing lymphedema in the breast that was operated on. My oncologist doesn’t care, but my surgeon sent me to a great lymphedema therapist who has become a good friend. We mostly have it under control but hot, humid weather can cause it to flare up. Most surgeons say you can’t get lymphedema in the breast but my surgeon says she’s seeing more of it.

        Sorry if this seems to ramble and be disjointed, but I’m trying to give the most info I can.

        Ladies, I wish you all the best of luck…stay strong and thanks for being here.

    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 Rebecca: I had the exact same diagnosis as you 5 years ago: stage 1, HER2+ non-metastatic breast cancer and went for the lumpectomy and 16 radiation treatments only, even though my oncologist strongly recommended chemo and Herceptin. I’m presently starting my second 5 years on an Estrogen-blocker, one horrible year on Anastrozole before switching to the much much better drug Esemestane. For insomnia I take Lorazepam 5mg at bedtime and most of the time it gets me through the night.

    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.

        1. Please don’t give up, I feel the same way as you it’s funny because everything you named I also do to survive (tv and clean house) .if you can tell me what pills you’ve tried or are on I can share how I decided to take mine. The only difference is on everything I’ve read not one person has my side effects! These pills cause my blood pressure to drop dramatically whic is called orthostatic hypotension ….which can cause fainting. And also at times some shortness of breath these are terrifying side effects!! Joint pain and etc. is one thing but this is to scary. Btw I was responding to Viki, but would love to know if anyone has ever had mine?!

        2. Same here, except I dont wany to die, but sometimes I do. Never did before. I am going to psyc. They brought up ect. Am seriously considering it but want to find someone who tried it first. Do you know anyone who tried ect for the anxiety and depression that comes along with antiestrogens? My psy said if I want ect or if I want ketamine or I want admission he will give it to me. I plan to try exetemase today but probably will go back to anestrozole.

    2. OH Viki, i had a breast cancer operation with nodes removed in september 2016, i did not take a lot in at the time, because my partner of twelve years did everything for me,

      then after i was near the fifth week of radiology, i noticed he was not looking well.

      Anyway the oncologist put me anastrozole for five years.

      i got my partner to the doctors,who got him in hospital,they gave him six months to live, he died just before the six months in march last year.

      since then i fell and broke 36 bones in my wrist and hand, four hour operation 32 pins 4 plates 16 screws and 22 stitches.

      In the mean time i was still taking this cancer drug.

      years ago the doctor put me on statins because of my heart,after a few months i could hardly move because of the pain in my legs and knees, i went back to the doctor, he said it was not the statins, but i knew it was, he had no intentions of helping me,so i helped myself,i came of the statins,and within three weeks i was back to my old self.

      now i have pain in feet legs ankles,also i have very high blood pressure, but most of all i have tinitus, very bad, i do not sleep at all, and my eyes have gone into the back of my head,like i am going to have a stroke.

      I have told the doctor on several ocassions about this but they are not concerned,

      So Viki, i have just started to do with the ANASTRORZLE what i did when i took the

      statins, STOP TAKING THEM.

      At the end of the day it is us going through all this pain and suffering from no sleep
      No sleep alone makes the body ill.

      IT is easy for someone to say,OH you will get over and through it, but at what cost?

      I agree with the Lady further up the blog,we are being used has animals, have any of these drugs been tested correctly? i do not think so, it all boils down to money, and the drug makers/producers are raking the money in.

      ALL AT THE COST OF OUR HEALTH.

      Well no more for me,i have been on this drug for 18 months,and i have had enough.

      SIDE EFFECTS.

      severe feet pain and cramps
      no sleep what so ever.
      severe high blood pressure
      severe depression.
      eyes rolling back in my head
      tired all the time
      mood swings
      no energy
      no wanting to communicate with people,because i look like 80 instead of 62
      no nothing. in fact my life on these tablets have turned me into a reclusive zombie.

      WELL NO MORE, I HAVE GAVE THEM UP THREE DAYS AGO.i would rather have one good happy year to live,than five miserable ones.

      So Viki, pick yourself up and carry on, its alright people saying you are being selfish, they are not going through what we are

      I have HAD ENOUGH but NO MORE.

      tHE ONCOLOGIST CAN SAY WHAT HE WANTS,but at the end of the Day it is my LIFE, AND I WOULD RATHER HAVE ONE GOOD YEAR THAN FIVE PAIN,DEPRESSIVE ONES.

      So Viki , lets start living again DRUG FREE.

  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.

  20. OK…..so the “side effects” that are provided for this drug are merely symptoms of dying. The drug prevents uptake of estrogen (the growth hormone) in ALL cells. Yes, the drug prevents the growth of any remaining cancer cells, but because the message to not uptake the estrogen goes to all cells, your normal body good cells don’t know that they should keep uptaking the estrogen. In simple biology, if a body is not reproducing good cells at the rate it needs to replace the normal die-off of cells, then the body is dying. If you feel 90 it is because without the replacement growth of the normal cells, you have aged exponentially rather than linearally (as does a normal, healthy person) and you probably are physically approaching that age body-wise and all the features of old-age are apparent. I have been on the arimidex for three years now and feel like I’m dying. I have at least 75% of the “side effects” that are described for the drug, including the psychotropic ones. When I was first prescribed the drug I was told that it would prevent the growth of any cancer cells that may be remaining in my body. They did not tell me that the drug would prematurely age me because it also prevents the growth of normal body cells. The choice I have is to stop the drug and possibly have a regrowth of cancer, or keep on taking the drug and die of premature, treatment-enforced old age. I think that those prescribing this drug should be way more honest about what it does – and they should be looking for ways to negate the single side effect that does occur, that single side effect being that the drug kills off the host due to suppression of normal cell growth at the same time it suppresses cancer cell growth, and thus, if we commence the course of treatment, we will be accelerating our death rate. I am convinced that were I to stop taking this drug I would no doubt feel better quite quickly (the body is fearfully and wonderfully made) but then the risk of recurrence of the cancer rises quite substantially. I am caught between death and a hard rock.

  21. Hi, Your blog has helped me to see I am not alone and all the symptoms I am having are real and not a figment of my imagination. I have been taking exemestane for about 9 months
    and the symptoms are just getting worse day by day. I have a trigger thumb and constant joint pain. After reading all the blogs from all my sister warriors I realize I do have to look at quality of life for myself. I am going to get a bone density test tomorrow and take the results to my oncologist and decide if whether to stop the exemestane. My side effects are real and they are getting worse everyday. Quality of life is important me. I feel empowered after reading everyone’s stories. I will let you know my decision. I know everyone’s situation is unique and we have to make our decision based on each of us.

    1. Sara, You’re definitely not alone. And you are so right about QOL being important too. I am glad you feel empowered by reading what others have shared. Good luck with things.

  22. I had a bi-lateral partial mastectomy in 2013, was lucky enough not to require chemo, but did have weeks of radiation. I was prescribed Arimidex and stayed on it until this past summer. I had no bad symptoms until then….suddenly I began to have hot flashes nightly and my legs began to hurt. The pain was intense and seemed to be worse with inactivity ( more specifically, at night ). I was waking up several times each night and during the day, I began limping. At first, I didn’t think it was related to the Arimidex for two reasons. 1. It didn’t start right away, and 2. the pain was very bad in only my right leg. I finally contacted my oncologist and he immediately changed my prescription to Exemestane with the hope that the symptoms would go away, or at least, be lessened. The pain stayed at the same level, but I was offered an opportunity to choose from 5 treatments at my local hospital . I could have 3 free treatments and the choices were:
    1. Hypnotherapy
    2. Reflexology
    3. Massage
    4. Acupuncture
    5. Reiki
    I chose acupuncture and after the 3 treatments ( 0nce a week ) my leg pain and hot flashes have virtually disappeared. I can’t tell you how much better I feel. I still have another 15 mos. of medication to go through, but I had to share the info about the acupuncture in the event anyone else would be willing to try it. My reaction was exceptional, but I was told it wasn’t not unusual to experience relief from pain…sometimes for a short period and sometimes for much longer.
    I,too, have experienced the aging factor that this medication brings on. My skin tone has deteriorated, I have gained weight. and am continually surprised to see myself looking so much older whenever I look in the mirror.
    I have been told that I am now osteopenic so that is another concern .
    I was never told about the “trigger finger ” issue that could arise, and as a result, I actually had one finger and a thumb surgically corrected. Neither the orthopedic Dr. or the oncologist explained that the Arimidex could have caused the problems . I consider myself lucky in the short run, but am offended by the term “survivor”. I am still here, but who knows for how long ……

    1. I need to correct my earlier post. I had a bi-lateral PARTIAL mastectomy. It was at Stage 0 which is why chemo was not recommended.

  23. I am currently on Aromasin and experiencing hypothyroid symptoms. Has anyone else had symptoms
    like this also. I also have nausea after taking this medication along with not sleeping well. I sweat alot and
    feel moody and forgetful. My face looks puffy and I have put on weight. Joints stiff~~~I notice it in my fingers
    especially and my legs are not as strong as they used to be. I have started Prolia injection for osteopenia that is
    progressing~~~osteoporosis runs in both sides of my family. I also have trouble controlling my urine and have hot flashes and my face breaks out~~~~~other thoughts out there I would appreciate!

  24. Oh my gosh! I’m so glad I found your post this am! I have tried all 3 drugs. I am pre-menopausal (diagnosed at 47; 48 now) and have ovaries of steel because I kept my period through 5.5 months of chemo. So I get a monthly Lupron shot to push me into menopause.

    The side effects of all 3 were too much for me. Severe depression, debilitating anxiety and paranoia, awful headaches, joint pain, you name it, I had it. We tried having me take 1/2 a pill every 3rd day, “just to get some into you.” That was difficult, but I talked myself through one day at a time. Any time we increased the dose, it became intolerable almost immediately. The drugs made me suicidal.

    I kept reading and hearing that having breast cancer is a big deal (it is) and depression is normal after facing a life altering situation (ok) and it’s probably mostly a reaction to having been through so much (mmm…) and “the vast majority of women have very few side effects.” But every time we stopped the meds, I felt HUGELY better within 24-48 hours. No suicidal anythings.

    So now I’m on a break & will revisit preventative treatment options after the New Year. But I didn’t fight that hard to beat cancer just to spend the next 10 years of my life on suicide watch and taking medications to handle the side effects of the meds I take for side effects of the AI’s or Tamoxifen.

    Ok, I’m off to explore your blog. Thank you SO MUCH for posting this. It is a tremendous help to know I’m not alone.

  25. I was diagnosed with IDC in December 2016. Had a single Mastectomy on Jan of 2017. They found a second small lump in the removed tissue so it was a good thing I didn’t go with a lumpectomy. My Onco Score was a low 8 and nodes were clear so I didn’t need chemo. Started on Tamoxifen due to being pre menopausal until Dec 17 when i was no longer producing estrogen and was switched to Arimidex. I have to say overall Arimidex has been gentler on my body when it comes to joint, muscle and bone pain but hit me hard with Depression. I’ve always had small bouts of depression throughout my life but they never lasted this long. I have never taken anything for depression so I am going to try a 2 week break from Arimidex to see if my symptoms subside. If so I will have that conversation with my Onco.

  26. I’ve been on anastrazole since August of 2017. I have the thinning hair and joint pain. I only notice the joint pain when I’m getting up after sitting for a while and I’m as stiff as an 80 year old. The hair is getting to me. I used to have super thick wavy hair. It’s curly and looks thick but it is very, very thin. It’s only that it’s curly that you can’t see my scalp. I really hate this.

  27. Hi all, I was diagnosed with BC 24th October 2017 and am STILL waiting for surgery. I’m told it will probably be MARCH.
    I am stage 1 with 3 cancerous lumps & lymph node.
    I was given Tamoxifen on 7th Dec and my breathing became horrendous. You could hear me wheezing & rattling from 30 paces.
    I HAD to stop taking it and rang my consultants secretary numerous times telling her I had breathing difficulties & had stopped.
    In 26th Jan 18 I had a consultant appointment & she basically told me off and said she only new abt me stopping the tamoxifen the week before. My gp wrote to her on 3rd Jan.
    I was told there is no point doing the surgery if you won’t take the hormone meds.
    I said it’s not a case of won’t, It’s CAN’T as I was literally DROWNING.
    I’m now on letrozole and my breathing is going again. I can feel the mucus building and am out of breath when I move.
    I have a permanent headache, sore throat, peeing for Britain, hot flushes, insides tremble & feel like jelly & my legs & arms feel like lead.
    I’ve only been on letrozole 7 days.
    Has anyone else had breathing problems ??
    Rant over xx

    1. Lin, how are you feeling now and when is your surgery? Why do you have only a “consultant”? She doesn’t sound very sympathetic or comforting for you, especially at this time before surgery. Have you seen the surgeon who will perform the surgery? I was so sorry to hear about your terrible side effects and hope you’re better?
      I have been off Anastrazole for a month now and I don’t feel better! Every little thing i do causes pain. Yesterday I took care of my new grandson and today my arms, hands and legs are all extremely sore. You’d think I spent the day moving furniture or shoveling snow. I read somewhere it can take 2-3 months to feel back to normal, although the oncologist suggested I stay off it a couple of weeks before trying one of the others. I’m not up for trying ANY of the others. I don’t like feeling this old!

    2. Hi Lin, yes I had breathing problems on both arimidex and letrozole. I also had heart arrhythmias with both as well. I gathered several research papers about these side effects and presented them to my oncologist only to have him become angry with me and tell me none of them was true! He even knocked all the papers i had given him to the floor and made no effort to pick them up. I began to see him as a bully after that. So it’s not “in your head or made up”. These side effects truly do exist and if men had to take these drugs, I’m sure we’d see some changes then! God bless!

  28. Hello — so glad I came upon this blog. I have been taking Femira for a year & had my bone density test repeated yesterday, baseline was a year ago. I lost up to 7.2% density in one short year, but no other side effects except for massive wrinkles in my face.
    What do I do about the bone density? I am still classified as osteopenia. Do I ask for Fosamax? Any help would be greatly appreciated.

    1. smcl, It’s really important to discuss this with your doctor. Bone health is a big deal. Things to consider might be adding a Vit D supplement, calcium supplement, increasing exercise (and include weight-bearing ones) and of course a healthy diet. I’m also osteopenic and so far, have not started any bone strengthening medications.

        1. Rebecca, I’m glad running helps. The state of my joints doesn’t make running an option. I walk as much as I can though, and it’s one more reason I am really looking forward to spring.

  29. Thx so much for your reply. I still haven’t heard back from my doctor.
    I do take calcium and vitamin d supplements as well as having 2 portions of milk daily. My sweet mom fractured 6 vertebrae this summer due to osteoporosis, so I am fearful of this hidden disease.

  30. I have just finished radiation. I had cancer in both breasts, L – stage 1, grade 3, no lymph nodes R-stage 0. HER-neg, E and P Pos. (high), onco score 11. I am 75. I have not seen the medical oncologist post radiation.
    Has anyone had their oncologist discuss weight loss as an alternative method of estrogen reduction? Many of the side effects of AI compound problems I already have, such as osteopenia and high cholesterol. I do not take well to pills, having ended up in the hospital with an intestinal infection after taking biophosphates. I already have joint pain from arthritis.
    I know that weight loss lowers estrogen, but I have not been able to find much on the use of weight loss vs. AI for preventing cancer recurrence. I am not obese, but I am about 15 pounds overweight.

    1. Hello Enid, I just posted with a question about diet as an estrogen lowering alternative. My oncologist just laughed when I asked about it. if I were you, I’d go ahead and ask the doctor whether weight loss could help with your estrogen reduction. I wish, now, that I’d insisted on a blood test for estradiol levels before I took Anastrazole. I would like to know what effect it had for the year I took it, and now that i’ve stopped it, I’d like to know how the level is changing if at all. Keep us posted, will you? And best of luck!

      1. My oncologist also scoffed at weight loss instead of the pills. He said it helps, but would not be the same. This was not my regular doctor, who is out on maternity leave. I will discuss it with her when she gets back.
        I found a study which had obese women diet, diet and exercise, or do nothing. The ones who dieted or dieted and exercised decreased their estrogen levels about 10% over the year, with the women doing the diet and exercise losing the most. This was not a cancer study, and the women were obese, not fat. The reduction in estrogen on the AI pills is 2.6% a year, so 10% in a year sounds good to me if it is not confined just to obese women.
        I asked the doctor to schedule a bone density test because of my history of osteopaenia. I was annoyed that I had to ask, and he did not suggest it. I forgot to ask for a cholesterol test as well.
        You would think that all oncologists would give estradiol level tests before they prescribed the pill, and then at least yearly.
        I have been taking the pill for a few days and am keeping my fingers crossed that I do not suffer any of the problems some women have, but I am still apprehensive about the unseen problems, such as bone loss and heart problems. Since I had an early stage cancer, low onco score, and am 75 years old, my risk of getting cancer is only 2% higher in the next 10 years if I take the pills, and my life expectancy is about the same if I don’t. As I told the doctor, if I have 15 years left to live (or less maybe) I don’t want to spend the next five, which would be the healthiest, being miserable.

  31. Hello, I am 67 and was just diagnosed and have had surgery. Was told by surgeon that it was 9mm, low grade (grade 1), no lymph node involvement (they took one node), but Stage 1B (which I don’t understand because of the literature I have read which says that node involvement would be Stage 1B, but no node involvement is Stage 1A). Have appt. coming up with Medical Oncologist. They have not done an Oncotype Dx that I can see from reading my info online. I have osteoarthritis (my whole family has this) and have had a spinal fusion and one knee replacement (the other knee has problems and I was told by the Orthopedic surgeon that I have 2.5 to 5 years with that one). I was in pain for 5 years before my back surgery with both feet going numb at the end, and 5 years before my knee surgery–I am no stranger to pain, but I am currently not so bad. I have rosacea, only partially controlled. My grandmother had dementia, grandfather had stroke. I have digestive issues with constipation/diarrhea and sometimes “emergencies,” and I am significantly overweight. After reading a LOT of information, I am very anxious about starting any aromatase treatment (which would be the treatment of choice by Oncologist) and just trying weight loss and exercise. I have read that for overweight individuals, weight loss with exercise (at least 150 weekly plus weight lifting) can help a lot with recurrence risk. It has been suggested that I may not have to have the radiation, but perhaps that is with the stipulation that aromatase therapy may be enough. I know we are all different individuals, but I am grateful for any insight you all have?

    1. Nancy, see my answer to Laurie above. Oncologist scoff at just weight loss and exercise, but I don’t know if there have been any real studies of that alone versus AIs.

  32. I was suicidal on the Tamoxifen. So for those that got mad because I quit taking it, I would not be alive today if I hadn’t. I had a hysterectomy and was switched to Arimidex. I had severe tremors in my hands to the point that I couldn’t hold anything. (also my bone loss decreased 5.7% in a VERY short time). They switched me to Letrozole. I finally said, enough is enough.

  33. I had a lumpectomy in Sept. 2016 (stage 2), then 6-weeks radiation and now just stopped taking Arimidex after a year. I had muscle pain all the time and worse if I did much of anything physical. I’m an active person so it’s hard to sit back and “take it easy”. I found I was depressed, probably due to the constant pain, so last month the oncologist suggested we try letrozole. It’s supposed to take a few weeks of no drug to get back to feeling normal, and I’m right up to the 3 week point now but still having a lot of muscle pain. I don’t want to try another drug until I feel like my old self again.

    I have to wonder if my estrogen positive tumor came about because for years I was drinking a lot of soy milk, and eating foods like flax seed and sweet potatoes which are full of phytoestrogens. I thought those were good for me, especially since I had a lot of breast pain with fibrocystic tissue before menopause. Turns out they aren’t so good after menopause and especially when it comes to estrogen receptor positive breast cancer. So I have stopped all those foods and try to avoid soy as much as possible. I weigh 120, so have very little fat that’s supposed to produce estrogen. Where else is it coming from? Wouldn’t a careful diet be a better solution than a pill?
    From the beginning of this journey with estrogen lowering drugs, I was asking why is no one interested in determining what my natural estrogen level is? The oncologist just chuckled. After menopause the level of estradiol in a woman’s blood is very low but constant, so it’s not impossible to test. Certainly the drug manufacturers aren’t interested…. Wish someone would do a study where they actually test women’s levels, put them on a low estrogen-producing diet and then test them again to determine the effects. Seems like artificially lowering the estrogen level to near zero isn’t the best thing for many women – don’t we need at least a tiny bit, after all? And after reading all these posts, it scares me to think how I’ll feel after another year (or 4 more) on this drug.

    1. Laurie, I agree with you about the estradiol test.
      I also wonder why oncologists don’t give out lists of foods to eat and to avoid, as well as other substances to avoid, such as parabens in creams and lotions.
      A list I found on-line mentions flax seed as a food to eat if you have breast cancer. I also recall reading something that said that soy was good for promoting the better estrogens. This reminds me of the cholesterol nonsense, where it was all bad, then some bad and some good, and who know what now.

  34. I am wondering if there have been any studies about who has bad reactions to AIs, and whether their outcomes were better or worse than people who had no problems. Are negative reactions a sign that the pill is working or working to well; and is the lack of problems an indication that it is working insufficiently? Is there a reaction difference between obese women, overweight women, and correct weight? Large women and small women? Should there be different dosages for different size people?
    Unfortunately the only medical article that I found about the problems with the AI’s was just about encouraging women to keep taking the pills.
    The pills have only been around for about 20 years, and the testing was done by the pharmaceutical companies for the purpose of getting FDA approval. If this were a pill for almost anything but cancer, it would probably not be on the market with all those adverse reactions. How about some more research into when and for whom these pills are most effective, and whether there should be varying dosages.

    1. Enid, I totally agree with your point on varying dosages! I also looked into AI dosage and couldn’t find anything that said smaller women should get less. I think that’s ridiculous on the face of it, but I’m no expert. And the fact that no testing is done before or during the prescribed meds – I think you’re right in wondering how do we know it’s working?
      I even asked the radiation oncologist whether I was getting the same amount as someone much larger and he said I was. (Think 34AA vs 42DD – what happens to all those extra rays?) I did some delving online and found a very good scientific article indicating that “size matters” with regard to radiation. I emailed him the article and he laughed about it next time I saw him. At that point I was almost finished with my treatment, but I wanted him to know what I had found in case it would help the next patient. I think they just do the same thing over and over, and they just point to the statistics given to them by drug companies and others.
      Can you share the link you found about foods and lotions?

      1. I had sent the site, but it did not post or was removed. It could be that this site does not allow web addresses for fear of being infected.
        The title of the article was “Breast Cancer Diet During Aromatase Inhibitor Treatment”. You could probably google it.

        1. Enid – that site is just the kind I was looking for, so thank you! Right after surgery, my oncologist recommended Vitamin D, again without checking my blood levels, so I followed his instruction. When I saw my PCP back in January, I stopped the vitamins for a few weeks before having blood drawn and asked her to check the Vit. D level. It was well above the normal range. Now I see on the site you mention: “While vitamin D might reduce joint pain and risk of fracture, one 2011 study reported that women taking vitamin D supplements during aromatase inhibitor treatment had higher circulating estrogen levels. The study results have not been replicated to date. However, it suggests that women should have their vitamin D levels tested and work with their oncologists to increase their levels, if needed, rather than taking high doses without supervision.” So where’s the supervision if he doesn’t even ask for a blood test?? ( I realize it was only one study, but still! Isn’t monitoring of these levels necessary in order to give good advice?)
          And as for the list of good vs bad foods, why didn’t he give me such a list in the beginning?

        2. I found another site here: http://cancer.ucsf.edu and if you search for “nutrition and breast cancer” there’s an excellent .pdf file that documents studies about diet, vitamins & minerals, exercise, weight loss, organic food vs. pesticide-laden, fiber, sugar, insulin, and almost anything else you might have wondered about with regard to breast cancer. If the link isn’t visible, just look up the Helen Diller Family Comprehensive Cancer Center at the Univ. of California. It’s a long document, but well worth scanning.

    2. Yes there has been studies. Very strong evidence that people with side effects have a lower rate of reccurance.
      Also people who are not compliant get more reccurance.
      I love my side effects. Every day it reminds me I’m more likely to survive, and lowers my worry about it coming back.

  35. I just read an article stating that according to the reporting of doctors, 5% of women on AIs had moderate to severe side effects, yet 36% dropped out of treatment due to side effects, and others endured the side effects.
    This suggests to me that either doctors are ignoring complaints about side effects, or women are not emphasizing them enough. Complaints that were subjective, such as joint pain, were not as likely to be reported as measurable ones.
    I think that the women who are suffering through the side effects should make sure their oncologists understand how bad they are feeling, and are recording and reporting this. If the doctors, researchers and pharmaceutical companies realize that there are major problems they may work harder to find alternatives to AIs or better relief from its symptoms.

    I just came across a drug called bazedoxifene, a drug used for osteoporosis in Europe, which is supposedly also an alternative or new form of AI. I will research it to see if it is promising.

    1. Hi I’m so glad I came across this blog… I have been taking exemestrane for almost 3 years now…. I have had so much joint pain.. an all over body pain.. an can hardly sleep… an now my hands are starting to go bad.. my eyes have gotten so bad now too…An I to feel like I have aged years… when trying to get out of bed..
      an sometimes thowing up for no reason… I have had breast cancer 2 times now… I so want to quit taking the pill … but so afraid of the cancer coming back…Vickie

      1. What does your oncologist say? Has he suggested switching to another AI? Although they are supposed to be pretty much the same, some people do better on one than the other.
        Have you seen a prime care doctor or ophthalmologist to see if some of the symptoms such as your eyesight and throwing up have other causes?

    2. Good post! I feel like I’m educating my doctor’s assistant who tried to tell me my stomach pain might be from something I ate. No, unless you want to count Anastrozole as something you ate, lol. He didn’t know a thing about the drug I was referring to (not his fault) but my oncologist wasn’t getting back to me and I needed something for the intense stomach pain. I think he (assistant) looked it up after I left, lol.
      I plan to take notes to my oncologist next week. I sent out a detailed note on what I’ve been experiencing to a number of doctors. I don’t intend to suffer in silence.

  36. I posted a comment back in November. At that time I was advocating acupuncture for joint pain and hot flashes. The treatment I received did the trick and eliminated the hot flashes, but the pain in my legs returned with a vengeance shortly after my post. At this time, I am still supposed to be on Exemestane, but have decided to go off for a week or so to see if the severe acid reflux I just developed will go away. I already had the muscle and joint pain and now walk with a limp which is particularly bad after sitting for any length of time. My most recent check-up with my oncologist was in December. I was looking forward to finishing my 5 yr. stint with Exemestane in January of 2019. I was certain that I could make it through another year, and was devastated to hear that the protocol is now 10 years…not 5. I will be 74 this year which means I’d be 79 by the time I finish with this awful medication…providing I live that long. I’m not certain that I will go beyond the 5 yr. timeline. I am thinking that the quality of my life may be more important. My oncologist doesn’t seem concerned with my pain level or the myriad of other issues that this drug causes. Apparently the side effects are so common that he seems oblivious to any complaints. It’s bad enough to be in pain, but the sleeplessness, brain fog, hair thinning, premature aging of the skin ,and now the acid reflux are pretty serious to me. I have another mammogram and a bone scan scheduled for July and depending on the results, will try and decide if I can continue with the Exemestane beyond next year. In the meantime, I’m taking Tagamet daily to counteract the acid reflux. It’s a good thing to know that I am not alone…this website is incredibly helpful and I thank God every day that Nancy started it !!

    1. Alix, Good luck with your upcoming checkup, mammogram and scan and with making your decision to continue on your med or not, as well. Lots of us understand how hard this can all be. You’re definitely not alone. Thank you for sharing and for your kind words. My best to you.

    2. Alix, you might want to refer to the cancer math table before you make a decision as to whether or not to go forward with another five years. When you get to a certain age, the AIs increase your chance of not getting a recurrence of cancer only slightly, but do not increase your longevity.
      Sometimes specialists fail to see the whole picture, and are focused only on whether they have successfully treated the disease they specialize in. If you die of something else, you are rated a success in their field, even if your treatment may have exacerbated the cause of your death.
      Ask your doctor what are the differences in cancer recurrence for someone your age who has taken the pill for five years and someone who takes it for an additional five years; and what are the differences, if any, in mortality. The recommendation for ten years is relatively new, and not universally accepted. There may or may not be sufficient clinical support to warrant an additional five years for someone your age.
      It it is a lot of statistics, and no one knows which percentage they will land in. I am 75 and was started on anastrazole. After about a week, I started to get side effects. My grandchildren were coming, so I suspended the pills, and felt wonderful again. I will try again, but I cannot see spending the next five years of my limited life being miserable and unable to do much. I asked my oncologist about taking the pill every other day, and he said there are not studies on that. I may try that, or going on and off, under the theory that some is better than none.
      You might want to see a different oncologist, if possible, who is more sympathetic to your problems.
      Good luck to you and I hope everything works out well.

      1. Enid–Thank you so much for supplying the new link. I just read it and found it very helpful. I stopped the Exemestane for a full week, and just started it again this morning. I could not believe how much better I felt by the 5th day off of it. But, I have decided to continue with it until next year and will deal with the side effects as best I can. I am still worried about the mammogram and bone scan scheduled for July. I expect that my plan could change or be derailed depending on the results. In the meantime, I’ll try to stay positive .Thanks again for your comments.

  37. I’m glad this is here. I’ve only been on Anastrozole for 3 months and I’ve already had it. I feel like im turning into an entire different person and it’s not a positive change.
    I couldn’t figure out the acid reflux I was experiencing until I got ER quality stomach pain (and gas). Even then, I thought I must have some weird stomach virus. It lasted at least 2 weeks with considerable intensity. The second time it hit-a few weeks ago-I decided I should go see my doctor to figure out what was going on with me. By chance, I looked up stomach pain and Arimidex on breast cancer.org and voila I knew I’d found the answer to my ills.
    It took some doing but I convinced my doctor’s assistant to prescribe me an antacid to see if that might help (my oncologist wasn’t responding to the messages I’d left him).
    That seems to have helped a bit, but I still had the feeling like something died in my stomach. They also prescribed something for the nausea and that helped fairly quickly but it gives me major constipation. So, I’m taking two drugs to offset the side effects from the Anastrozole and then two more drugs to help with the side effects those are giving me. It makes me want to cry and I don’t cry easily.
    The stomach issues aren’t the only side effects for me. I have a lot of pain in one of my knees. I’d just had arthroscopic knee surgery when I was diagnosed. My knee was starting to feel better until the Anastrozole.
    Then there the fatigue. It’s ridiculous.
    I’ve been told this is a wonderful drug and so on.my answer is that it’s not so wonderful if I can’t eat, stand up straight, walk and have debilitating stomach pain. The side effects are much worse than any of the three surgeries I’ve had in the past few months.
    If anyone has any good tips for coping, please let me know and thank you for letting me rant.

  38. This thread has been so helpful. I am a writer and after six months on arimidex my hands swelled up and I could not bend my fingers. Despite handling hot flashes etc, that was my definition of intolerable. I was switched to Tamoxifen and while things started off fine, I eventually experienced a deep and life altering fatigue, first ever bouts of depression with major crying jags and became a psycho bitch to my poor husband, going from flat to furious over nothing in seconds. So Tamoxifen has become intolerable. I am only 2 years into the therapy after mx, chemo and rads, plus a DIEPreconstruction involving four surgeries and an oophorectomy after being diagnosed BRACA2. Phew. My oncotype was 39 and because I was stage 3 and the cancer was aggressive, my oncologist is pushing me to get to 5 years. We agreed to another 4 week break, then a two month trial on aromasin. I reluctantly agreed. I already feel better after going two weeks drug free. If my worst symptoms reappear that will be it. I am a young, fit, 67 and my daughter is expecting her first baby. I want to pick the baby up and be a hands on nana. I want to go on vacation and not be in bed exhausted by 6. If that means living five years less then that’s ok with me.

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