Skip to Content

Aromatase Inhibitors, the Drugs We Love to Hate, An Update

Awhile back, I wrote two posts about the dark side of aromatase inhibitors, or as I like to call them, the drugs we love to hate. You can read Part 1 here and Part 2 here.

Those two posts continue to be two of my most-read. Frequently, I get emails about them, so I thought it might be time for an update. I won’t rehash what I covered in those posts, but as far as my personal experience goes, about two years or so after starting on endocrine therapy, I stopped taking anastrozole (Arimidex®) and switched to exemestane (Aromasin®).

I feel a sense of responsibility to share not only when things are going poorly, but also when things are going better. And, I can honestly say that so far, knock on wood, things are going better after the AI switch.

The decision to switch AIs was a good one for me, and I’m sharing about it because doing so might be an option someone else out there could consider before throwing in the AI towel.

Obviously, I am not a medical professional of any sort and my intent with those two posts (or any post) was never to suggest that someone should stop taking a recommended medication. I would never do that.

Rather my main intent was to stress, as always, that no one should ever suffer in silence.

No one’s side effects should be dismissed or brushed aside as just things one needs to live with. Too many women (and men) do still suffer in silence and hesitate to bring up side effects that are difficult to talk about and/or manage.

That attitude of, well you’re alive; maybe you should try to be more grateful (I think this really means be more quiet) is out there. I actually had such a thing said to me (not in those exact words) by a physician no less.

The question most commonly asked by healthcare professionals in regard to follow-up with AI meds might be, are your side effects tolerable?

It’s the question I am asked at every oncology appointment anyway.

This is such a loaded question. It’s also an unfair one as it can place guilt on a person by making her/him wonder why she/he isn’t more capable of tolerating the ‘ inconveniences’.

Yep. More patient blaming is what that is when what we really need are more and better options.

Have you ever been made to feel guilty about about not tolerating side effects? Not a good feeling is it?

Instead, I would like to see physicians say something like, tell me about your side effects (if any) and which ones you find most difficult to manage. I want to help. Let’s see what we can figure out together to try to make things better.

And as always, the mere validation of a patient’s feelings, pains, concerns, fears, side effects or whatever it might be, means more to patients than most physicians might imagine.

Every individual is unique and every person must evaluate and decide how to answer that ‘is it tolerable’ question.  For me, the side effects of Arimidex® became anything but tolerable.

Since starting Aromasin®, my joint pain has lessened substantially, though it has not by any means disappeared. I am back to exercising regularly and can walk without debilitating discomfort, which is what I experienced while on Arimidex®. I still have chemo-induced neuropathy issues in my feet, but the discomfort in my feet and joints is not what it was before the swap.

The primary side effects for me at this point are weight gain, hot flashes, hair loss, osteopenia (this one is most upsetting) and sleep issues; all highly annoying things, but tolerable. I guess. For now.

An important suggestion I have for anyone on AIs who is dealing with joint pain is to have your vitamin D level checked and monitored.

For quite some time following chemo, mine was horribly low and may have been partly to blame for my general ‘not feeling well’ state and also may have contributed to intensifying joint pain.

Low levels of vitamin D can cause joint or bone pain and a feeling of malaise. Your calcium level needs monitoring as well if you’re taking Vitamin D supplements, because sometimes Vitamin D supplements cause a higher than normal calcium level. This happened with me.

My oncologist and I have begun the conversation about the possibility of me staying on an AI for more than five years, but frankly, I can’t think that far ahead. I’m still trying to focus on making it through the first five.

I still have one more year to go.

I hate the little white pills some of us are forced struggle to take. The side effects and how they inhibit my quality of life and how I feel when I look in the mirror these days as a direct result of taking them –yeah, I hate that too. 

AIs are definitely the drugs I love to hate. But I hate cancer and the idea of giving it perhaps a better opportunity to reappear even more.

If you are struggling with side effects from AIs (or any drug) and contemplating discontinuing use, you are not alone.

You know your body best and only you can determine what is and is not tolerable for you. Your decisions are exactly that, your decisions. But remember, sometimes switching drugs can make at least some difference. It did for me.

But, AIs (any or all of them) are still the drugs we love to hate.

Are you on an aromatase inhibitor and if so, which one?

Have you ever switched meds and found another to be more tolerable?

Do you plan to stay on an AI for more than five years?

Sign up for news from Nancy’s Point here!

Aromatase Inhibitors, the Drugs We Love to Hate - An Update #breastcancer #endocrinetherapy

Patricia nye

Wednesday 9th of February 2022

Nancy, Thank you for bringing up aromatase inhibitors again. I started Letrozole in July. Was on & off it for several months because of surgeries. Started again in October. At first I had no serious side effects. Then after 3 months I started having a bad pain in the top of one foot. Couldn’t even walk normal some days it hurt so bad. Then my knees and elbows started hurting. Then my whole body started aching & my hands started swelling in the night & by morning I can’t even make a fist they hurt so bad. Horrible insomnia & hot flashes. Itchiness all over mainly at night. Bad mood swings. Oncologist said to take aleve. But it doesn’t even touch the bone/joint pain. At my treatment he said to stop taking the letrozole for 3 wks & see how I do. It’s been 2 wks and some of the pain seems to be not as bad. I’ve started walking & doing yoga/barre to try & limber up my muscles/joints. Not helping as of yet. I dread trying another one of these drugs and I’m seriously thinking of taking my chances & going off them all together. I’m only 56 & I feel like I’m 85. I was a very active downhill skier, hiker, outdoors loving person before this diagnosis & it really messes with me psychologically that this is going to be my life for 5 yrs. I can’t do it! What if I only have 5 yrs left and I’ve wasted it on feeling miserable because of a drug…… when do we say quality of life is more important? It’s so frustrating! My cancer is HER2 positive, ER+/PR-, 3+. Left breast only. Negative in the lymph nodes. Did 6 rounds of chemotherapy and currently doing herceptin/perjeta every 3 wks since stopping the chemo. Will be 14 total treatments of herceptin/perjeta Only have 4 more to go. I underwent a partial lumpectomy. Did not get clear margins from the lumpectomy so decided on nipple sparing mastectomy in both breasts with smaller implants so I didn’t have to do the tissue expanders. I did get clear margins after the double mastectomy. Wish I knew then what I know now about mastectomies w implants. If I had to do over again I would go flat. If I have problems down the road w these implants I’ll have them taken out and go flat. No doubt about it.

Nancy

Tuesday 15th of February 2022

Patricia, I'm sorry you've been dealing with so many nasty side effects from Letrozole. I certainly understand your wanting to take a break or even to stop altogether. I stuck it out on AIs for nine years. It was rough at times, but now I'm glad I stuck with it. Of course, we are all different. I did take a couple breaks and I think that helped. I also switched drugs. That also helped. I understand about the implants too. It's a lot, isn't it? Good luck going forward - no matter what you decide.

Dottie

Tuesday 30th of July 2019

Hi Nancy: I am on Letrozole, though not the Femara brand. I've had 3 generics and the one I can tolerate best is by Breckenbridge Pharmaceuticals. I push through arthritis, but am finding some other very alarming side effects that are surfacing after 2 years on Letrozole. My nails are horrible. They're so weak and brittle that I can't even scratch an itch without them tearing into the quick. That sounds a bit petty, but I live in Florida and we're riddled with mosquitoes, black flies, gnats and yellow flies. Their bites itch like the devil! My gums are receding suddenly as well. I had to get a filling today where there was no cavity. The gum just dropped away almost over night. Lastly I just found out I have 2 ganglionic cysts on my left knee resulting from a torn meniscus which. It's my thought to request a PET scan and IF I have no hot spots showing, asking my oncologist if I can come off the AI. Even if she says no, I think the PET scan would be a very useful tool in going forward.

Shannon

Sunday 27th of August 2017

I'm glad I found this. I've been on Letrozole for about 3 years. I was just at the doctor and told him I'm glad I only had 2 years to go and he said no it's recommended for 10 years now! I don't want to think about that now, and I can't say for certain, but I don't think I'll be listening to that advice. The side effects aren't horrible, tolerable? I guess. I'm 55 and the normal things I used to do just happen a lot slower now and I hate it. Anyways, I feel good talking to other people who are on it like me, because I feel like some people don't understand and sometimes I feel I shouldn't complain, because it is saving my life, or is it?

Barbara

Friday 18th of August 2017

May I ask, how much weight gain? I am on hold from Arimidex and they are escripting Aromasin to my pharmacy to start in a week. But at the same time I have to lose some significant weight to get my blood pressure down and can't afford another massive gain like I had when I quit smoking (40 lbs in a month). I'm already dealing with a bad hip that seems to be due to the Arimidex and I am just about ready to call it all quits. I am a single woman who has to be functional and hold down a job and can't be dealing with all this.

Nancy

Friday 18th of August 2017

Barbara, I have gained twenty pounds since diagnosis. I am working hard to lose weight, but it's a struggle. I didn't gain more after switching to Aromasin, if that's what you mean. I do feel better on it than on Arimidex. My body could not tolerate Arimidex for some reason. I've dropped about seven of those twenty pounds. It's a slow process.

Beth Anne

Thursday 7th of July 2016

I survived a lumpectomy,chemo and radiation plus a thyroid removal during everything.I then had a meniscus tear.With that said, Iam going crazy on my second try at the 5 year drug! I am ready to call it quits and go on living the life I have.anyone agree?

Nancy

Thursday 7th of July 2016

Beth, You have to make the decision that works for you. And btw, I had a meniscus tear, too, during all this. My best to you.

%d bloggers like this: