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Aromatase Inhibitors – Five Years, Now What? Part 1

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)

 

 

30 thoughts on “Aromatase Inhibitors – Five Years, Now What? Part 1

  1. I am on exemestane (aromasin), and absolutely hate it. Every day my hip and back pain gets worse. 50 weeks down, at least 4 years and 2 weeks to go. My doctor acknowledges that the pain is from the drug. He tells me that after the 5 years, he’ll run the breast cancer index test to see if there’s any benefit to continuing. I can’t begin to tell you how much I want that test to come out the ‘right way.’ He says that he thinks the side effects – especially cardiac and bone density – are not well-enough understood, and that we may be doing ourselves more harm than good staying on these for a longer term. I’m hoping that research findings will provide more answers by then. In the meantime, all I have to do for motivation to keep taking the pill is to look on Facebook, like this morning, and see yet another woman whose early-stage cancer has metastasized. It is so frightening.
    P.S. I’m still doing my 5 miles a day, and have lost a few pounds, which I had thought impossible! Thanks for the motivational assist!

    1. Cathy, I know what you mean about hating it and I’m sorry you have hip and back pain. I want to do the breast cancer index test, too, and was going to last year, but the cost was an issue so had to hold off. I plan to write a post on the test soon. I certainly hope we aren’t doing ourselves more harm than good. Glad to hear you’re still doing your five miles. Good for you! Thank you for sharing.

    2. I’m now taking Aromasin (brand name) after 12 months of experimenting with generics. My oncologist is convinced that the generics have fillers that are causing problems and that the brand name AIs are easier to tolerate. I still have morning stiffness, back and joint pain, and especially swollen and uncomfortable feet, but it has decreased from outright pain to discomfort. The estrogen deprivation symptoms (hot flashes, night sweats, weight gain, skin and hair ageing) haven’t changed, but my oncologist lets me use Vagifem twice a week, which has saved my quality of life. NIH has a number of papers posted on it’s website that address why this is now considered ok, for those of you interested. My gynecologist recommended using Vitamin E suppositories vaginally on the other nights, and together, these vaginal suppositories have mitigated a lot of the uro-vaginal problems, and made sleeping a little easier, at least twice a week! I also use NSAIDs to control inflammation and pain. Right now I take a baby aspirin at lunch (81 mg) and if I feel sore or my feet hurt, a 500mg Tylenol at dinner. I ALWAYS take a 200mg Ibuprofen at bedtime because it knocks me out and helps me sleep through the night sweats. The NSAIDs have made it possible for me to exercise as well as stay on my feet all day without pain. I’m a stay at home mom, and my Fitbit tells me that I walk between 8-10K steps per day, about 3-4 miles, so I need to be on my feet to take care of my family. I agree with Cathy; it doesn’t take much looking to find women who had early stage BC that later metastasized to Stage IV after they decided not to use AIs and try to rely on natural remedies or good nutrition. Let’s not forget the lesson taught to us by hundreds of thousands of unfortunate women who had radical mastectomies back in the day, who were the guinea pigs that proved that removal of local tumors, even early ones, is not enough by itself to prevent recurrence. For those of us with early stage tumors who didn’t have chemo, the AI is the only thing standing between us and an early grave. I look at my 8 year old every day and remind myself why I’m putting myself through taking the AIs. It’s out of the question that I would stop and let a broken gene, whatever it may be, get the upper hand. Maybe I broke it, and maybe I inherited it, but either way, I’m not going to allow an early stage cancer, that is essentially curable, kill me.

  2. My main side effect from anastrazole has been exacerbation of my carpal tunnel syndrome. So far, that has been manageable for me.

    However, I was hospitalized last month for a blood clot caused by my chemo port. My oncologist told me that I might want to go off endocrine therapy altogether because it carries a small risk of blood clots. Now that my port is out, if I experience another clot, then I am off any and all endocrine therapy, period.

    I quizzed the members of my medical team as I weigh whether or not to stay on anastrazole. I report my findings and my decision (at least for now) at http://csn.cancer.org/node/299754. More recently I also asked my pharmacist for his take. In response to my radiation oncologist’s statement that endocrine therapy makes a difference in disease-free survival but not in overall survival, the pharmacist said that this is generally true of meds, such as those for cholesterol, hypertension, etc. That’s info I didn’t have before.

    1. Elissa, Sorry to hear your carpal tunnel syndrome has worsened and also that you were hospitalized last month. I also worry about blood clots because I do have some issues around that. It makes sense that you will go off your med if you should experience that again. Good idea to consult with your pharmacist too. Never hurts to gather opinions. Thank you for sharing your thoughts and your link too.

    2. I find it interesting that due to the small possibly that you might get another blood clot, that Al’s would be off the table?!! I have a blood clotting disorder (1 PE, 3 DVT), and I am still taking Aromasin, in combination with a blood thinner Xarelto.

      1. Jess, Well, everyone is different in what they are able to tolerate and the risks they are willing to live with. Thank you for sharing what you are doing regarding these drugs we love to hate.

        1. Hi Nancy, You mentioned in your “Dark Side of Aromas Inhibitors – Part1” on page 2 of 22
          that “Aromasin is an irreversible aromatase Inhibitor while the other two are not”. What does this mean?

          1. Diane, Yes, I read somewhere (sorry, can’t remember where) that the effects of Aromasin are more permanent, things like hair loss, bone loss etc. I asked my oncologist about this and he didn’t agree. But I’m not so sure. I am hoping they are not.

      2. Thanks for the info, Jess. My understanding is that the clot risk is treated differently depending on whether or not a clot has been “provoked” (my oncologist’s word). Mine had been provoked by my port; yours had been provoked by your blood clotting disorder. Now that my port is gone, any further clots of mine would more clearly be seen as stemming from the AI. Other factors may play a role as well, such as age and recurrence risk. Your situation gives me another data point, so thank you for that.

  3. I lasted 25 months on Femara I am now on Tamoxifen. In those 25 months I lost 12% of my bone density, now have high blood pressure, permanent joint damage including a complete fusion of one of my knuckles. When my knee was feeling how my finger felt before it fused I stopped taking the drug as I realized I would be in a wheelchair before I even hit 60. Felt like a total failure by quitting. I took two months off then went to see my oncologists. (I had already tried Aromasin too) He was kind but I felt he felt I was a failure as well. For some of us these drugs are very difficult to take. Not everyone has side effects but for me they were truly horrible. Constant pain, headaches, insomnia, sky high blood pressure and in my case weight loss. I have always been very active and am now back up to my 5 mile runs. I decided the exercise will be better for me then that drug. The Tamoxifen is not nearly as toxic and I think I will be able to manage on that but will definitely not continue on these drugs when I hit the 5 year mark regardless of what my oncologist tells me. I come from a family with a lot of breast cancer but am not BRCA and yes it kills us slowly though. If I am like my mother, Aunt and Grandmother I will live quite awhile before it comes back and I am hoping by then there will be better options at holding the cancer at bay. I have been on the Tamoxifen for 7 months and believe me I count each month as they slip by and can not wait to be off of these drugs. (I really needed to vent.) I do realize these drugs do help and that’s why I tried so hard to stay on the AI and I know if I have a recurrence that’s what the Oncologist will insist I start to take again but it can be so hard on ones body and soul dealing with cancer. I really enjoy reading your blog thank you for taking the time to write about so many topics within the cancer world. Everyone’s experience is a unique one.

    1. Linda, Yes, everyone’s experience is uniquely theirs, including side effects from these drugs. I’m sorry you have had such horrible ones. I know that feeling of feeling like a failure, but the bottom line is, we know our bodies best. I hope you will be able to tolerate the tamoxifen and I totally understand your decision to stop all these drugs when you hit your five year mark. Thank you for sharing. Vent any time. And thank you for your kind words about my blog too.

  4. Nancy,
    I have been on Tamoxifen for 7 years now. My oncologist and I discussed it and both felt continuing the protocol was worth the potential added benefit. My side effects have been tolerable, which certainly helps. I take Vitamin D and a low-dose aspirin daily as well. I am starting to toy with menopause, but not there yet. I will likely be at least 8 years on Tamoxifen or more before I hit that mark. My oncologist and I also agreed that 10 years on some medication is a good goal. I have been fortunate to “tolerate” the Tamoxifen well, so I am pretty nervous if I need to make a switch to an AI at some point. And of course at that point I could decide no more medications, but like most of us, I want to feel like I am dong the best to help my odds. So I stay the course for now, and I think of so many who deal with such uncomfortable (and unacknowledged) side effects on a regular basis. Thank you for providing the forum to validate what so many are going through.

    1. Lisa, I am so glad your side effects have been tolerable for you. I also take Vit D supplements as my bone loss has been significant since starting on AIs. We all want to help our odds, but QOL matters too. Everyone has different feelings about how much they want to endure. Good luck staying the course. And thank you for sharing.

  5. Thanks for raising this important issue. I am about 3 years into Tamoxifen, and although I tolerate it pretty well and have gotten used to the rapid change it makes in your life, I find the biggest challenge is managing energy levels, especially as I have an active work and family life. I do plan to stay on for the full 10 years, but sometimes I wonder what my energy will be like over this time… There is a cost to everything.

    1. Oliver, It’s so important to remember men also get these same drugs prescribed for them, so I appreciate your comments. I know what you mean about trying to manage your energy levels. I struggle with this too. I’m glad you feel confident with your decision to stay on for the full ten years. Your last sentence says a lot… Thank you for sharing. Great to hear from you.

  6. Nancy, once again, to the rescue! Thank you for posting more on AI’s! What great timing! I just completed a hysterectomy, 4 weeks into recovery from that. It is actually going pretty well, even the night hot flashes from surgical menopause without estrogen help like most women (it does get unnerving when women who get to have estrogen therapy try to give me advice, it gets so tiring to just say thank you, but I can’t have estrogen). Overall, not too bad – ovaries “Thelma and Louise” have left the building, but I honestly am quite relieved, my uterus was so enlarged and my ovaries kept bursting cysts, so grateful that is over. I had prior issues down there (asked for a hysterectomy about 5 years ago), it was Tamoxifen that set my womb into orbit and subsequently put me more at risk for those cancers below. My path after surgery was clear, thank goodness – glad to be free of my tired out womb for sure: she did her job well (I have two amazing kids, 23 and 15). However, my Oncologist now wants me to go on Arimidex, and it is sending chills up my neck. I know my body is starting to make estrogen elsewhere, but my gosh – my ovaries, the primary estrogen creators are gone! I really am not looking forward to the other bodily side effects, trying my best to weigh out the benefits vs risks. I gave Tamoxifen just one month, and felt it attaching itself to my DNA, my thinking processes, etc…then the damage to other body parts. My concern is wondering if it is worth it to allow Arimidex to cause joint and bone issues, heart issues. I was so healthy before cancer (just the normal perimenopausal stuff was going on), and I am getting to the frustrated stage now 10 months into my cancer life.

    Mostly just sharing where I am at currently. I agreed to give Arimidex a try, and just see – mostly, I think, to please my Oncologist, husband and kids. (I get it, they want me to live). But, when does quality of life come into the equation? I really like my strong bones and heart! Sigh, just very grateful there are others out there to share with – thanks again, Nancy for staying devoted to keeping this wonderful site going! Healing Hugs to all!

    1. Pam, Thank you for sharing where you are at currently. I think it’s worth giving Arimidex a try. Hopefully things will go well for you. Please keep us posted. Healing hugs to you too.

  7. 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.

    1. 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.

  8. 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.

    1. 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.

  9. 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.

    1. 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.

  10. 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

    1. 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.

    2. 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.

  11. 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

    1. 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.

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