The Dark Side of Aromatase Inhibitors

The Dark Side of Aromatase Inhibitors – Part 2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m just not buying that. Why not?

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

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

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

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

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

Why would I stop now?

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

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

I know many women out there are suffering in silence.

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

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

I just needed to share this with you.”

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

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

Is this a problem? Of course it is.

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

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

Can you believe that?

Ultimately, I decided the heck with that deception nonsense.

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

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

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

This logic seems quite twisted to me.

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

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

Is it the best one long term?

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

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

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

Why must I choose between the two?

Why must anyone?

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

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

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

Have your doctors been helpful in dealing with side effects?

Have you stopped taking a drug due to side effects?

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I'm done with this one...
I’m done with this one…

 

523 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. 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?

  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.

  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!

  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.

  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.

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

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

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

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

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