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The Dark Side of Aromatase Inhibitors – Part 2

The Dark Side of Aromatase Inhibitors – Part 2

The dark side of aromatase inhibitors, part 2; and they do indeed have a dark side!

I have so much to say in this post I don’t even know where to start.

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

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

You also might wish to read part 1 here.

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 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 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 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 try 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?

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

The Dark Side of Aromatase Inhibitors #breastcancer #endocrinetherapy #cancersucks

When Someone You Care About Is Hurting, Don't Try to Be a Fixer #grief #loss #cancer #family #relationships #mbc

Patty

Wednesday 16th of August 2023

What is so magic about the 10 year time frame?? If estrogen production is no longer inhibited, won't any cancer cells have a party and start a tumor?

6 years in and tired, Patty

Plz help. My onco has no clue.

Nancy

Monday 21st of August 2023

Patty, I think the data is now showing that seven years might be good, but don't quote me on that! After ten years, or now maybe seven, the efficacy of the drug dwindles. So, that's the reasoning, I believe. Keep pressing your oncologist about your concerns. You deserve answers. Good luck! And, I hear you on the being tired!

Jenni

Saturday 5th of August 2023

Your experience with AI is EXACTLY mine as well. I was shocked reading it because it was reading my story. I'm 4 years in and the foot pain is so awful after a couple of hours that I am hobbling around and want to cry. And this is not the worst of it. It's completely stolen any bit of intimacy that I use to enjoy with my husband. And yet I too feel like if I speak up any of it I am looked at like I should stop complaining and be happy to be alive. Well I am grateful to be alive....but shouldn't all of us be happy to be alive. I just completed year 4 of Anastrozole but I am NOT going to take it for 10 years. I'm 55 and I feel 85 many days. So, I am trying to bear it for another year and then I quit... if not before then. Thanks for this post. I don't feel so alone.

Alita

Wednesday 3rd of May 2023

To me it makes perfect sense for your oncologist to say you won’t go back on if you go off if you start feeling better. I'm not saying that 100% a person will not go back on again, but if a person starts feeling better- it makes a lot of sense that they'd not want to go back on again.

Julian

Saturday 25th of February 2023

This fall jt will be year three of taking an AI. My first year was Tamoxifen. We didn’t get along well. My Dr says that since I was post menopausal a year later she could switch me to another drug. I chose Aromasin. Better, but not great. I am still struggling with weight, depression, libido, joint pain has subsided, just stiffness at times. I do feel like it’s a prison sentence. Last summer it was unbearable. Oncologist told me I could take a month off. Two weeks in I felt great. Two weeks later I felt the same. She offered me the chance to switch to one of the others. I said no, I knew my poison, I’d go back on the Aromasin. I’m thinking about taking another break to try hard to get some weight off. I’m glad I found this site. I really don’t have anyone who could relate.

Nancy

Wednesday 1st of March 2023

Julian, I'm glad you found my site too. Plenty of us here relate. I took breaks several times while on Aromasin. It helped me get through my "prison sentence". I did complete mine, and I do feel better. Most days anyway. Thank you for sharing and good luck on Aromasin.

Sheri Walt

Wednesday 21st of December 2022

I’ll keep it simple- Wow Thanks!

Nancy

Thursday 22nd of December 2022

Sheri, You're welcome.