I have written several times about the dreaded aromatase inhibitors, or as many of us prefer to call them, the drugs we love to hate. Those posts are among my most-read and most-commented-on posts. Plus, I get emails regularly from women who are sharing about their struggles and frustrations with these drugs. So yes, it’s a hot topic. But I am writing about it again because it’s also an important topic. And of course, these drugs are prescribed for women (and men) who’ve been diagnosed with hormone-receptor-positive breast cancer.
First of all, I feel a responsibility to stress again that this blog is not intended to be a place to receive professional medical advice. Also, while I very much value every single comment shared here, comments shared are not to be interpreted as medical advice either.
However, this blog most definitely is a place where you can come to receive validation. Sharing is welcomed and encouraged.
If you are experiencing nasty side effects from these drugs, at the very least, you deserve validation from your medical professionals as well. Your issues should never merely be brushed aside. You also deserve some help in managing any such nasty side effects.
Never suffer in silence. Just do not.
Another reason I am writing about this topic again is because I have now reached and passed the five year mark of being on an AI. I started on Arimidex and that was a disaster. I switched to Aromasin. I am not side effects free by any means, but I am doing much better on it. Knock on wood.
At my last several oncology appointments, my oncologist and I have had pretty much the same conversations. Among other things, we always talk about how I am doing on my “chosen” AI. It always comes down to the same question, how well am I tolerating it? I always squirm when I’m asked this question because for some reason it feels like it’s my fault if I say, I am not tolerating it. It feels like I’m not toughing it out or something. On the other hand, I totally “get” the question and why it’s asked. I’m glad it’s asked.
As far as adhering to this drug, it’s always been more or else, I’m damned if I do and damned if I don’t.
Sometimes choices totally suck.
As you may or may not know, it’s often recommended these days to stay the course, or in other words, continue with your prescribed adjuvant hormonal therapy beyond five years. Of course, your oncologist might be recommending something else based on your situation.
I have reached that five-year mark.
So now what?
In my next post, I’ll share about my decision to continue or not, and why I made it.
And yes, AIs are still the drugs we love to hate.
Are you on an AI or tamoxifen, or were you?
Have you reached the same five year juncture and if so, what are your plans regarding taking these drugs?
How are you doing side effect-wise?
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Aromasin® (chemical name, exemestane)
Beth Gainer
Wednesday 2nd of March 2016
Hi Nancy,
I was on aromasin for maybe around 2 to 2.5 years. I don't remember how long exactly, but I do remember the awful, awful pain. I became crippled. Literally. I cried when I walked. Everything hurt. My oncologist then put me on Femara, and it was no better, so he took me off AIs completely. I generally have a high pain tolerance, so when the pain was too much, I felt like I failed. In some ways I still feel I failed because maybe if I could've tolerated it more, I would've been able to continue with it. Of course, the quality of my life was going downhill fast, so I understand why my oncologist took me off.
I'm glad that aromasin is working out better for you. I remember when you made the switch.
xo
Nancy
Friday 4th of March 2016
Beth, I remember that you tried being on an AI. Sometimes QOL becomes so adversely impacted a person has no other choice but to stop. It can't be said often enough how different we all are regarding tolerance for these drugs. Thank you for sharing.
Rebecca
Friday 26th of February 2016
Hi Nancy,
As you already know, I am on Tamoxifen. I will reach my 5th year by the end of this year. My Onco wants me on it for 10 years and I will have to make a decision about family planning ASAP, because I am getting old. I would hate to face other complications due to my age. Either way, I am planning to take this pill for 10 years (with or without that one year break). I feel safer taking it. I am also considering surgery to 'remove it all' after having one child (hopefully). At that point, I will be on Aromasin. My onco has said to me that there are more patients complaining about Aromasin than there are of Tamoxifen (sigh). I don't stay quiet. I complain to my onco always. She listens.
My WORST side effect is dryness. I HATE it. I am unable to be intimate with my partner. I can't stand the examinations, and at times, walking has been painful. As you may recall, I've been getting abnormal paps with no evidence of HPV or mutated gene(s). I have wondered if this is related to another side effect of Tamox. The other side effect is terrible mood swings. It sucks, but what other choice do I have if I want to live? I know there aren't guarantees about anything but somehow being on this pill gives me some peace of mind.
Thank you for addressing another important topic. xx
Nancy
Saturday 27th of February 2016
Rebecca and Cathy, Here's a link about the Mona Lisa Touch. Thank you, Cathy, for reminding of this procedure. I should write a post about it sometime. http://www.smh.com.au/lifestyle/life/new-treatment-for-vaginal-atrophy-means-women-dont-have-to-put-up-with-painful-sex-20150706-gi6j14.html
Cathy
Saturday 27th of February 2016
Rebecca - my breast surgeon recommended something called the MonaLisa touch procedure, which is apparently some sort of laser treatment. She said that a number of her patients have had some success with it. I have been using vit e capsules with some success, so I have no personal knowledge, but I thought I'd mention it in case you hadn't heard of it.
Nancy
Saturday 27th of February 2016
Rebecca, I remember that you are on Tamoxifen and I totally understand why you want to stay on it for the full ten years. I wonder if even that will get extended, especially for younger women (when diagnosed) like you. Removing all the our parts is really hard, but we do what we gotta do, right? I am sorry about the dryness, though of course, this is a common complaint. There are some products out there to try that might help. And I just ran across an article with info saying some of these products are okay for women with estrogen+ cancers to use. Hope you can find something to help. Dear hubby and I have figured out what works for us. And no, there are no guarantees about anything, but peace of mind matters. A lot. Here's that link: http://www.medpagetoday.com/OBGYN/Menopause/56345 Thank you for sharing and adding to this discussion.
Teresa
Friday 26th of February 2016
I have chosen to stay on it for 10 years. I also have become a very committed exercise addict and eat a lot of fruits and veges. Yoga is very helpful for me, as well as reducing stress and jettisoning toxic relationships from my life. I also just requested to do Prolia injections based on low bone density and the research presented in December at the San Antonio breast conference. I take supplements suggested by a naturopath. I am willing to tolerate some side effects for the peace of mind. My maternal grandmother, my mother and all 4 of her sisters as well as 2 cousins have all died from cancer. My mission is to stay as healthy as I can now that I am almost 7 years out from my original diagnosis of Stage II IDC.
Nancy
Saturday 27th of February 2016
Teresa, Thank you for sharing your decision about staying on your AI and also for sharing about what other things you are doing. The amount of cancer in your family is staggering. I'm sorry. I think most of us have the same mission as you. Thanks again for sharing.
Mary Ellen Post
Friday 26th of February 2016
I have been on AI's for 2 years and 3 months. I have tried all three, all with the same, side effects so settled on letrozole. There is not a week that goes by that I do not contemplate going off of them. I always have leg, back and joint pain, numbness in feet and toes and now have osteopenia in my lumbar spine from these nasty drugs. I often wonder if they are really helping or hurting me. My doctors will not even discuss an alternative. All I ever hear is keep taking it. Recently I was told I need a Prolia shot twice a year for bone loss. After researching that drug, which can have terrible side effects, I decided enough is enough and I refuse to take another drug just because they tell me to. I know my body and it hurts from all these side effects. I even get stomach cramps from calcium suplements. I have always been a compliant patient but I am fed up with the medical profession always telling me I need another drug or I am doomed. So I am still taking the letrozole until five years is up but will refuse to take it for ten years. I am knee deep in reading about natural ways to build my bones and stay healhy and quite frankly feel empowered in taking a small step in saying NO to prolia and the high and mighty medical establishment. I know my body and it is telling me to listen up. Thanks for letting me get this off my chest. No pun intended.
Nancy
Friday 26th of February 2016
Mary Ellen, Your plan sounds reasonable for you and you're right, you know your body best. Thank you for sharing. Feel free to get things off your chest any time.
Lisa
Thursday 25th of February 2016
I have been on aromasin (with monthly zoladex injections since I was premenopausal) for one year. I did not tolerate it at first, and even tried coming off it for one month and the terrible side effects persisted for that month so I just went back on it.
Some of the side effects, like joint pain, have diminished, but others persist. Confession: I have always been terrible about taking pills EVERY, SINGLE. DAY. While I never miss a zoladex injection, I probably only remember to take my Aromasin an average of 4 days a week. I'm kind of nervous to bring this up with my oncologist when I next see her, because really, who can't remember to take a pill every day? And I am really scared that she will tell me that I have had no protection at all by not consistently taking my AI.
Nancy
Friday 26th of February 2016
Lisa, You might as well be honest with your oncologist. She is not there to judge you; she is there to help, advise and support you. I am not sure what happens to the level of protection when one is not consistent. Good question to ask her. Let me know. Thank you for sharing so honestly.