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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 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 have been 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 patient adherence 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 adherence. 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?

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

You’re turn!

Update:  I am still taking my prescribed AI, and I now have a different oncologist. I feel it’s important to state both of these things. For many reasons, I couldn’t tolerate Arimidex, and switching to Aromasin made a difference for me. I still hate it, but I’m doing better. Also, just a reminder that this blog is never intended to be a substitute for sound medical advice. It is a place to vent, share, support, learn and advocate. Because no one should suffer in silence. No one.

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

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

  1. Thank you so much for this blog and for all of you who have posted. I get so much more info here than from my “team.” I was diagnosed with breast cancer in May of this year. Only need radiation after my lumpectomy. I am now on anastrozole. After reading all of your posts I understand now why my legs hurt so terribly in the mornings. As I was taking low dosage HRT meds for hot flashes/night sweats (age 60 post menopausal) I am back to suffering from them. Doc has given me Venlafaxine to help, but so far it hasn’t helped. We have increased it three times. She has Sid if this doesn’t work we will have to try something else. I am awake every hour at night and don’t sleep well. Anyone found something that helps the hot flashes? It’s embarrassing when my glasses steam up at work.

    1. Jody, the venlafaxine only worked for me for about 4-6 weeks. I was not going to increase dosage, nor keep taking other meds to counteract the side effects of medication. I stopped taking all of it. Still feeling the joint pain and stiffness – trying to work around that. I’m gutting out the hot flashes during the night. We have our thermostat kept very cool, and an overhead fan on high every night. I have found that drinking a lot of water helps. Since I have been off the meds the hot flashes kind of increased, but now they are slowly decreasing some in intensity. I’d rather put up with that than the other stuff. I am trying different supplements to see what works. Turmeric, may be taking the edge off of them. I do know that black cohosh didn’t help before, but I may try it again. Good luck

  2. It was horrible for me.. started out with hot flashes, really bad ones! Then anxiety and mood swings.. would cry for no reason…called Dr. and he changed it to another one, It was no better…ended up depressed so had to go get something for that and anxiety..I decided that is no way to live so I got off of them 2 weeks ago…not sure what I am going to do…

  3. Hello! Thank you for this post. I may have missed it, but has anyone had the mental fog that I have experienced on Aromasin. Until I looked up depression, I thought that was what I was experiencing, I didn’t know that Aromasin affects the brain. May even cause early Alzheimer’s. I found this info on the American Cancer Society page in an article written by a neuroscientist. His wife refused to take it.

    1. Alice: While the joint and muscle pain was horrible, I think the brain fog and forgetfulness of taking the anastrozole was the WORST part of it. I commented on my own below. I finally had a meltdown at the end of October and stopped taking all meds I was on. Still experiencing the body aches and brain fog, and I was only on the medication for 5 months….I don’t know how anyone has taken it for 5 years! Letting my body try to detox and heal through the end of the year. I’ll regroup after that and figure out some other alternatives. My quality of life suffered horribly from this stuff; and I’m afraid it might end up being permanent.

      1. Alice, Annette, I suffer from brain fog, but I always ascribe it to my menopause, not the anastrozole! Regardless, my acupuncturist has a treatment point on the crown of my head that cuts through that fog! She’ll treat me for that about once every 3 months for a few subsequent sessions, then I’m good. You may have the same results!

        Love to you all!

      2. I have the brain fog and forgetfullness only after 3 months on the drug. I had heard about “chemo brain” and that is fog and forgetfullness, so I thought it was from that. But now that I read what other women are saying, I truly believe it is the ANASTROZOLE.

  4. Thank you for this blog…I, too, have/had been on an AI; Anastrazole. Prior to all of this breast cancer nonsense I was still teaching group fitness classes 3 time per week and also working out in between along with working my full time job. I have been a group fitness instructor for nearly 35 years. Had my surgery (lumpectomy) in February of 2018, radiation for 6 weeks and then started the AI in late June of 2018. The bone, joint, muscle pain became intolerable. I also started getting numerous calf cramps in the middle of the night; not to mention being up every hour with hot flashes. I honestly think the last good nights sleep I had was the day AFTER my surgery! I think even worse has been the brain fog and forgetfulness that has plagued me since being on that medication. I was put on generic Effexor for the hot flashes; it worked for about 4-6 weeks. By the end of October I stopped taking ALL meds…I am fed up. I don’t know how you made it for 2 years, I barely made it 5 months. As of this writing I am still experiencing some joint pain and body stiffness, but I am also barely working out anymore due to my job(s) and also the fact that I am still so fatigued from lack of sleep its all I can do to get up in the morning, work 8-14 hours some days, then get home. I have put on some weight, not enough to be significant to most anyone but me, however, it is still unacceptable. I had to switch to a new oncologist due to a change in jobs/healthcare systems. She wanted me to start taking Letrozole; I filled the RX, however I am still not taking it and I told her that this past Friday. I am going to give my body a chance to “regroup” through the end of the year at which point I am supposed to be seeing a “holistic” MD who is part of my healthcare system. I am also going to continue my own research into supplements, diet changes, and other things that I can do to naturally help my body heal. I am 58 years old and this has been THE only medical issue and surgery I have had in my life. (even my 3 childbirths were easy!). If anyone out there has any research or info that they can share of a holistic nature, please let me know!!!!

    1. I had Diep flap unilateral ,mastectomy April 9 then radiation in June….I started anastrozole sept 1…depressed,hair thinking,anxiety and severe bone pain….I work out 5 days a week,aerobic,power yoga,yoga and strength train. now dr game me resroril yesterday for insomnia so sever,going to bed at 7 M…I don’t think I’ll ,are it longer…Iam 59…I eat plant based diet as well taking supplements. my onco dx score was 9..I hope in June the trial will be used as gold standard which is your recurrence. rTE FOR CANCER WAS SCORE 9…..VERY LOW….if THEY DECIDE A LOW SCORE IM CONJUNCTION WITH ONCO DX TEST USED AS GUIDELINES FOR TREAMENTS…..I MAY STOP DRUG…hope I CAN MAKE IT TO June

    2. I started seeing a naturopath in January last year to help me detox from my post-lumpectomy radiation treatment. She used all my labs from the numerous tests I’d had in the prior 6 months, we discussed vitamin therapy (high doses of D3 (above the 50th percentile I fell in) and iodine (I take cholella, a seaweed supplement). She uses BIE (BioEnergetic Intolerance Elimination), which is a natural, non-invasive method that helps a person’s body identify stressors that are causing symptoms. It sound hookey, but I trust her and I trust the pseudo science behind the diagnostic tool.

      I also advocate for seeing a massage therapist and an acupuncturist.

      I love you all!

  5. I started on the devil drug Aremidix in April 2018. My last pill was Mid November. I have COMBED the web for info on how to reverse the horrible side effects but I have come up with nothing. I am 64 and was just fine before this drug. Active in ALL aspects of my life. Now I hurt every where in my body especially feet, legs, hips, chest, shoulders, head, & hands ALL THE WAY TO THE BONE. I have NO sex drive. My skin & hair & nails are fragile and dry. Everything about being a woman has changed. Are there any suggestions for reversing the damage this drug has done? Thank you in advance.

    1. Jaine- I also had terrible side effects – my body hurt everywhere and the pain in my hands kept me awake at night. My doctor and oncologist were ok with my stopping the meds, My cancer was caught early and I choose mastectomy but I could not live as I was living. I was told it would take about 6 months to feel better in my hands and joints. I have followed up with an orthopedic doctor who did some X-rays and gave me a steroid pack to knock back the pain ( which has helped very much) This may be short term but I am grateful to know there is no evidence in my X-rays that the hand pain is permanent. Within a week of quitting the meds ( i tried all of them BTW) I began feeling like myself- mentally! For me – the worst part of this has been the AL’s – so I am working to find the answers to helping my body feel better. ( As much as possible without meds) I believe that Yoga, massage, naps, and working with a body roller, and lots of stretching is my ticket. My doctor also told me that research has shown that exercise would offer me close to as much protection as the meds. So – I’m gonna go with that since I could not live with the meds. I believe the use of my hands and sleep were a top priority for me. Also- the meds made me feel like I was sick everyday – like I had Cancer or the Flu! which worked against my efforts to want to fight, exercise, or try to live my best life. Good Luck to you and God Bless!

  6. I failed to mention the ANXIETY and MOOD SWINGS and INSOMNIA were intolerable as well. So I have the Nero part of me back since I quit the Aremidix but I still have all the rest. I’ve detoxed, detoxed, detoxed…. oh and no matter what I eat I have constipation and bloating. I cannot believe how this drug wrecked my life!

  7. I have found no articles or comments about taking lesser dosages of AIs. I would think this is an option. Maybe some people are being overdosed. Apparently everyone is prescribed the same AI dosage, whether they are 6′ and 300 pounds or 5’1 and 100. Are body weight and size related to the side effects?
    After trying two AI and feeling miserable, I decided to stop. I was bi, Stage 1 and Stage 0, ER and PR Pos, HR neg, Onc 11. Had radiation. My radiation oncologist didn’t think it was a bad decision, but my medical oncologist felt I should try tamoxifen. Then I read how it effects cognitive function more than AIs, among other things. Being 76, and already having trouble concentrating and forgetting words, I did not want to go that route. Also, with advancing age, there are a lot of other things coming down the pike.
    The wife of a friend of my husband had decided to forgo chemo and AI, and went for some Chinese mushroom soup therapy. Her cancer has spread throughout her body in about 3-4 years. I pointed out that she had stage 3 cancer, but my husband is nervous and wanted me to go back on the pills.
    I had already tried 1/2 every day, with problems. So I have decided to try a half every other day so that I don’t have to spend my life with depression, weakness and insomnia. There is not a lot going on in my life, so I can tolerate down days, as long as they are not my total life. My reasoning is that some reduction in estrogen is better than none. I also try to exercise, eat well, and have more cruciferous veggies and shitake mushrooms. I have lost ten pounds, and hope to lose some more.
    The problem is that we are not relying on an exact science, but statistics. The cancer math tells me that without AI, my chance of dying from cancer is 1 or 2% higher than if I take the pills. (Actual, not relative percentage.) You can take the pills and still die of cancer, albeit a slightly lower chance. They are improving on the ability to assess the aggressiveness of the cancer, but it is still a roll of the dice in the end, sometimes with the odds more in your favor.

  8. I tried the lower dose, but still had side effects. I decided to just forget about the pills for now.
    My radiation oncologist is running a fitness program for cancer patients, which I have joined. So far we have had just two meetings, so nothing much to report about it.

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