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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.

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

Pam

Sunday 27th of March 2022

Thanks for sharing your experience Nancy. Recently diagnosed and really not sure I will even start the AI. There are other potential serious concerns as I have cardiovascular disease, osteopenia, arthritis and history of traumatic brain injury which and up the risk for later dementia. Unfortunately the AI's can worsen all of the above. The other big concern is the ability to exercise regularly. Exercize can reduce the risk of recurrence by up to 50%; the words of an integrative oncologist I just started working with. Weight gain is also going to increase my risk of recurrence and have worked real hard to lose 15% of my body weight since the diagnosis. Most of my medical team seem to downplay all these risks and I could also go on a rant about that! The integrative oncologist did suggest the AI would be good to at least try, but he's also offering great alternatives with diet, exercize and supplements. I appreciate getting this out and wish you the best on your own journey!

Nancy

Tuesday 29th of March 2022

Pam, I tend to agree with your integrative oncologist. Perhaps try an AI and see what happens. I agree that exercise is vital. And I know what you mean about having your medical team seemingly downplaying the risks. I hear that from a lot of women. You'll need to balance the risk/benefit ratio closely, as should do we all, of course. Whatever you decide, I wish you all the best. Thank you for sharing.

Holly

Tuesday 8th of March 2022

I had a lumpectomy for an 8 mm tumor, stage 1. The surgeon removed the tumor and got all the margins, and I had IORT. I do not want to take an Aromatase Inhibitor. Am I being foolish not to try? I am extremely active and eat healthy. No other health issues. I do not want osteopenia or osteoporosis, as well as cardiovascular effects. Can I just have my gynecologist order my mammograms with US every 6 months for 2 years and not see a medical oncologist? If something comes back on mammogram, then I would go see an oncologist. I feel that these doctor visits are a waste of my time and money, and added stress. They draw labs that are always normal, don’t always give a full breast/physical exam but document that they do. I basically am unhappy with the referred medical oncologist.

Elizabeth Pedersen

Thursday 10th of March 2022

@Holly, I had a similar diagnosis in 2015. Took the AI’s for 6 months. Didn’t like the side effects so consulted with a naturalist oncologist in Oregon over the phone. I got his name and number from a commenter on this blog. His name is Dr Dave Allerdice. sageccinfo@gmail.com. 503-206-6218. Very encouraging.

Nancy

Thursday 10th of March 2022

Holly, I'm not here to offer medical advice, and you don't specify if you've thoroughly discussed your hesitation to take an AI with your doctor. If you're unhappy with your oncologist, perhaps there's a different one you could see to get a second opinion as far as how to proceed. That might help clarify your decision making process. Or what about a PCP? Good luck with whatever you decide to do. Thank you for sharing.

Mark

Sunday 21st of November 2021

My wonderful wife was diagnosed with breast cancer earlier this year stage 2, refused radiation and went with a double mastectomy and reconstruction, and is now on AI’s, she a Rn going to finish up on her nurse practitioner, this has been so hard on her, and our family, she’s on Arimidex and I tell you what, my wife has a high pain tolerance, I have never see her in so much pain and cry so much because of it, some days she has a hard time even just putting her seat belt on! They put her into menopause and for you wonderful women that go through this and being on AI’s, from what I have seen from the Se’s from my wife it’s hell for you and your families, it’s hard dealing with this! I try to help and be supportive bite my tongue and say to myself it’s just the medication! Man there has to be a better way there just has to! Here quality of life has gone from great to depression, and pain, I get so upset and mad see her going through this, I don’t show her that because I’m trying to be her rock and be there for whatever she needs, and there’s nothing I can do. How do your husbands deal with this? Her doctor wants her to keep going but this has to be mentally exhausting for you, I know how pain is exhausting I live with severe pain everyday, and you crack after time, any advice that anyone can give to me, to help her, myself and our family would me greatly appreciated.

Mark

Michele Bauersachs

Saturday 10th of July 2021

Ladies - I have had breast cancer 2 times - 2 rounds of chemo and a bilateral mastectomy. I have refused all hormone blockers because I am not willing to take these hormone blockers and then all the other medications to counteract the side effects. I am now at my 5 year mark from my second bout. I have been taking a drug called toremifene - fareston is the generic. It is a protein blocker that blocks metastatic breast cancer. They stopped prescribing it and switched to the hormone blockers. FYI - It blocks Covid as well. I am just fine, I have never had any side effects and it works. You need to be your own advocate. My breast surgeon recommended this medication and since I refused the hormone blockers my oncologist gave it to me. I am 60 years old. I am still sexually active and I have am the CFO of a large construction company. All those side effects do not fit into my life or anyone's for that matter. Please do not be afraid to speak up and make decisions for your own care. There are other options available. What good is being alive if you can't enjoy a single moment. Be in charge of your care. Make informed decisions even if your doctor does not like it. Find a new doctor that works with your best interest in mind.

Yvette

Wednesday 7th of July 2021

You have not touched upon the horrible effects of aromatase inhibitors for someone who has Stage 4 prolapse bladder that hangs below vaginal area. I took anastrozole 8 years ago and had to stop after 3 1/2 yrs because may vaginal area and the bladder itself were swollen, red, chafing, bleeding sores all over so I could barely walk, UTIs, urinary incontinance, etc. It was horrible and I could not go on. I have just found out that my cancer has returned and mestatized into stomach cancer (stage 4) which is caused by my breast cancer. All they can try to do is slow the cancer a bit. Treatment is again aromatase inhibitors by injection. I am feeling ok so far but its been only 1 1/2 months on treatment. After that???? This should be one of the side effects mentioned when taking hormone treatment. It is horrible and there was no life at that point.

Thanks for all your good info otherwise.

Yvett

Nancy

Thursday 8th of July 2021

Yvette, That does sound horrible. I'm sorry your cancer has metastasized. I'm glad you are feeling ok so far, and I hope that continues. Thank you for sharing so candidly.

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