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The Dark Side of Aromatase Inhibitors, Part 2

The Dark Side of Aromatase Inhibitors – Part 2

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

Do you want to read more articles like this one? Click Here.

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 probably 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 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

754 thoughts to “The Dark Side of Aromatase Inhibitors – Part 2”

  1. Good luck with the detox period, Nancy. It sounds like you are doing what you need to, and sometimes that includes making those hard decisions, eh? I hope you DO feel better, and when you are ready to try the next drug it is much easier to tolerate. ~Catherine

      1. Hi, Nancy, I was wondering if Aromasin worked better for you. I’ve been on Anastrazole for 20 months. Didn’t even notice any SE until 6 months other than feeling a little woozy if I took it during the day (only did that the first pill) so I take it at night. SE started with finger stiffness. The joint pain is there but not untolerable. The main thinks I’m worried about are my cholesterol (historically runs high but my HDL is between 85 and 95 so that’s good) but total cholesterol is now up to 375. My triglycerides are high as well but everything else is normal, well, I could stand to loose 20 more pounds — I’ve lost 25 lbs while on Anastrozole thanks to Weight Watchers and exercise (and my Fitbit). Down 50 lbs total but struggling to loose more/keep it off. Also the lack of libido (not that great even before Anastrazole) and the vaginal dryness has started to take it’s toll in the last month. Have been on an Anastrazole hiatus for about 3 weeks now. Thinking about switching to another AI so just wanted to know what your experience was (or if anyone else has experiences with switching AIs, please chime in.

        1. Charlotte, Yes, I am doing better on Aromasin, although I still hate it and still have SEs. Side effects on Anastrazole were not tolerable for me. For now, I’m staying the course. Good luck to you. Might be worth trying a different one.

    1. I have one more year to go on my AI. I am counting the days. Fatigue, brain fog, and depression are my issues. I have to concentrate so much harder at work. My working memory, word finding abilities , and processing speed are much worse since taking the AI. I think the fatigue is related to the intense focus necessary to compete in the workforce. I think many more studies on these issues are necessary. Some of us cancer survivors still need to work for a living, and yes death from cancer is a worse option, but we need support for this brain fog on steriods. thanks for listening and I do my best to compensate, but it not easy. Can’t wait to be done!!

      1. Cindy, These things are being studied, but not sure how much progress is being made on how to find relief from SEs. Your point about survivors needing to work is right on. QOL matters a great deal. More support is definitely needed. Survivorship care plans are becoming more common place, but there’s still a long way to go here. Thanks for sharing. Always here to listen. Keep counting those days!

  2. AH!!! I thought I was the only one who stared at that little pill and thought “what if I just don’t take it?” I too took a 4 week break and instantly started losing weight and feeling less achy. It was a bummer to start again. The good news is that I reacted better to the next AI. Even though they are all supposedly the same, my level of side effects were different for each of them. For me the Letrozole seems to be helping, but as I say that I’m starting to notice the joint pain, fatigue and general overall “grossness” factor have been increasing lately. And then there are all of the sexual side effects. That’s done more to add stress to my marriage then anything. Sorry, but I just don’t think men would be putting up with all of these side effects. Do male breast cancer patients take these drugs? What do they think? I’d love to know. Thanks for the great articles Nancy.

    1. Create Joys, No, you are certainly not the only one! I think a short break makes a lot of sense and that this option should be discussed more for certain situations. I’m glad to hear you found switching to a different AI to be more tolerable. I hope things don’t worsen too much for you. You also are not the first person to admit how these drugs negatively impact a relationship. You ask a couple of good questions there. I suppose it depends on their tumor biology, but I don’t know… Thank you for reading and sharing so candidly.

  3. Hi Nancy,
    I hope your hiatus goes well. I can relate to everything you are saying and more. I’m at about the 3-month mark of my break from Tamoxifen. My Oncologist & PCP have not been sympathetic or helpful with the vast array of symptoms. The PCP has gone so far as to infer I might be depressed which could be causing the symptoms. It is the side effects causing me to “seem” depressed. I decided to take a break from Tamoxifen & stay away from Drs. for awhile.
    I am starting to feel a bit better, slowly seeing the joint pain easing up, the fatigue is less, sleeping better and overall feel like there is a light at the end of the tunnel.
    It will be difficult to go back on the drug but I will at some point.
    We all need to speak up about the side effects loud & clear. Why can’t they create a drug that does its job of keeping the cancer at bay & has fewer side effects? I believe they can.
    Thank you for your honest & straightforward blogs. I look forward to reading them each week. You help validate the feelings by women with FBC.

    1. Deborah, I hope my hiatus goes well too. I think I am already feeling better actually. It seems many women agree about the lack of support from their oncologists regarding these side effects. I know their primary concern is very focused – but still, guidance or at least sincere empathy would be greatly appreciated. I’m glad you are feeling better too. I plan to go back on fairly soon as well. Sounds like you and I have the same plan in mind. Thanks for your encouraging and very supportive words. Keep speaking up! I plan to. Hopefully some day there will be better options available.

    2. Hi…I too suffered tremendously from Tamoxifen. At first I thought the mood swings (I was on Effexor the antidepressant as well and that did not really lessen the mood swings much) were just from recovering from the Cancer..but they got worse the longer I was on the drug. I didn’t have many hot flashes but..I got more tired and more exhausted, more joint pain and then still had regular enough periods…every 4 months! Ended up with induced endometriosis and lost my ovaries. Off of Tamoxifen and have never felt better. Oncologist wants me on an aromitase inhibitor. I say no way!

      1. Robin, I’m sorry about all your suffering. Sometimes a person must make the best choice for oneself, even if it goes against an oncologist’s recommendation. I’m glad you’re feeling better and that you feel comfortable with your decision. Thanks for sharing.

  4. Very tough – no good choices. I briefly went on Arimidex. The pain was tremendous & was getting to the point in just a couple of months that I was wondering if I could continue. The choice was taken out of my hands when my ovaries just overrode the drugs to shut them down. It just wasn’t working, so I went off all of that & back on tamox. But I remember seriously wondering if I could keep going. My onc, who I normally adore, was a little skeptical of whether or not it really was the AI. It seemed pretty clear cut to me.

    Such a difficult choice that women are put in. And you’re right, we end up feeling guilty either way. I just wish the med. community paid more attention to this side of things. We’re not just whining; we’re not hysterical; we’re not just stressed because we’ve had cancer. We’re in pain because of the drugs we’re taking.

    As always, thank you for writing this with such honesty. And good luck with your detox and decisions about what to do next.

    Julie

    1. Julie, It is a difficult choice for some women. On top of the side effects, the guilt is hard and there are various forms/reasons for the guilt too. I agree that the medical community does need to take these side effects more seriously. It’s starting to happen due in part to the wonderful work of doctors/patient advocates such as Dr. Attai. Thanks so much for sharing about your experience.

  5. OMG – I also have seriously thought of pretending to take my arimadex! I hate the weight gain! And I cough all the time. I also have the guilt thing, that I should just be grateful and so shouldn’t be a “no compliant” patient. Cancer just plain sucks!!!

  6. Nancy…

    As usual, shining a light where there was once darkness.. and in the midst of that darkness, too many women to count, suffering in silence.

    Often, when a drug is considered “well-tolerated” in a medical setting means it’s not killing us or causing other very serious side effects Little is discussed about the quality of life issues that are so important. This is why the voice of the patient MUST be incorporated into the conversation and it’s also why I have such tremendous respect for the doctors who engage with us on twitter. They are listening and they are trying to find ways to resolve the issues.

    Enjoy the hiatus and will wait to see what you decide to do. I’ve been on femara (I’m still on brand because I started on brand) for six years. My oncologist prefers ten years and since I am tolerating it, I’m okay with the plan. My bones may tell a whole other story. I had a bit of osteopenia dx’d just prior to finding out I had breast cancer. I know it worsened a bit and my script for a bone density has been in my possession for a month. I think I better go schedule the appointment!

    Hugs to you and MANY thanks,

    AnneMarie

    1. Ann Marie, Suffering in silence is unacceptable and so unnecessary. Patients need to be heard and I absolutely agree about having their voices incorporated into the conversations. And yes, we appreciate those special docs out there who are going above and beyond. I’m glad Femera has been going okay for you. I didn’t really realize ten years on AIs is now also being considered… I don’t think I’ll be able to do that, but one day at a time as they say. I hope my break helps too. I think it already has and I plan to prove my oncologist wrong and go back on in a month or two. Thanks for reading and commenting. Great to hear from you.

  7. I haven’t started my Arimidex yet and I told my husband on the way home from the onco with my prescription that I had a good mind to just get it filled and not take it and just let her think I was taking it. After reading so many horror stories about these meds, I just don’t know if it is really worth it.

    1. Cyndy, In my opinion, you should definitely take the Arimidex. You may not have the side effects at all, or they may not be too bad. Don’t base your decisions on horror stories you hear. As I stated in my post, I am not recommending that women not take their prescribed drugs. I would never do that. But if you do have side effects, it is important to talk about them – that’s my point. Good luck with things. Keep me posted.

  8. Nancy, I thank you for having the courage to speak frankly about your feelings. On that note, I’d like to do a little venting of my own.

    I honestly believe that peer pressure is one of the greatest burdens that accompany a diagnosis of BC. There’s something very wrong when victims of BC must admit to harboring secret feelings about the drugs they’re taking or the decisions they’re making as they struggle with this disease.

    There’s a lot of talk in this community about conquering fear. But the fear of breaking ranks seems to be gripping at times. For instance, it hasn’t taken me long to realize that statements which challenge conventional thoughts or treatments regarding BC are seldom welcomed. I’ve felt the chill more than once. I’ve felt it in the blogosphere and I’ve felt it in the offices of my wife’s physicians.

    Isn’t it interesting that the same people who extol the virtues of routine exercise and organic nutrition are so critical of the healing potential offered by vitamins, herbs and other holistic measures? Medicines were being produced by natural means long before the concept of pharmaceutical factories entered anyone’s mind. Yes, I know there aren’t any clinical studies to support bypassing standard protocols, but does anyone seriously expect to ever see that day?

    Why is every alternative treatment labeled “complimentary” at best, and outright quackery at worst? If a practitioner attempts to offer any approach to cancer that doesn’t have an official stamp of approval, they’ll be accused of peddling hope and likely prosecuted. Given that there is no known cure for cancer, what does an oncologist do other than peddle hope? Can we at least admit that cancer victims are conditioned to automatically reject any primary approach that cannot be patented or otherwise monopolized for profit?

    Like most of you here, my wife listened to the words, “You have cancer.” Like most of you here, she sacrificed her breasts to some faceless pathologist that she’s never met. Like most of you here, she walks around feeling like a human hour glass. And like most of you here, she is not content to be some oncologist’s lab rat. She wants access to EVERY available treatment that offers promise, whether it’s conventional or not. It’s her body. It’s her life. It should be her choice. Every one of you should be demanding that right.

    1. Michael, You make some interesting points. There is a lot of pressure to do things a certain way in Cancer Land. That is true enough. I am pretty much a follower of conventional medicine, but your points are well taken. At the end of the day, every patient must choose and do what feels best for her/him and without guilt involved too. Thanks for venting! Anytime!

    1. Jeannie, You should start! Just be aware and discuss concerns, side effects, questions and whatever comes up (if anything) that bothers you with your doctor. Hopefully things will go well for you.

  9. I decided to stop taking Femara after 3 and a half years. The many side effects were becoming interolerable. I had a mastectomy in 2009, with a subsequent metastases to my liver and upper chest. I did not tell the doctors. I had my 6-monthly CT Scan end of June (having stopped the Femara in February). Last week I saw the Consultant Oncologist, who confirmed that I was again all clear and clean (NED). When I told her I had stopped taking the Femara, she said I was “remarkable”! I am writing a book about my lessons learned and aim to help as many others as possible. Of course, we are all unique and each cancer is different, but I am thankful to be feeling much better, healthier, lighter, brighter and happier. Christina Hatt

    1. Hope to someday have your courage. Been thinking of doing this myself. Can’t wait to read your book. I also have been diagnosed with stage 4 and have been Ned for 2 years.

  10. Nancy, thank you for the post, and thank you for encouraging women who have not even started just to give it a try. These drugs do have some potentially horrendous side effects, but they can significantly reduce the risk of recurrence and improve survival. Not everyone who takes the medications will benefit – that’s part of our problem is that we can’t always predict who will benefit from the drugs and who will not. And while the potential side effects are well documented, there are many women who have minimal to no side effects. So I always recommend that a patient just try – you can always stop. And I also encourage patients to discuss any side effects or concerns with their physician. Stopping the medications should be done only after discussion with your physician and ensuring that there are no other options. Sometimes changing to a different medication can help, and there are many lifestyle changes and complementary therapies that can be of benefit as well.

    Remember we are dealing with cancer, and while these medications are not a guarantee, they can certainly improve the likelihood of a life of NED (no evidence of disease).

    1. Dr. Attai, Thanks for adding your insights here. As I said, I would never suggest that a woman stop taking her meds without discussing first with her doctor or to not at least give an AI a try. The trouble is, many oncologists aren’t listening to the patient or taking the side effects seriously enough. And so many women do suffer in silence. As you alluded to, it would be nice to figure out who might benefit from taking these meds and who will not… there’s still so much to figure out isn’t there? Your last sentence is what my oncologist kept saying to me, but frankly, I couldn’t see myself staying with the Arimdidex. I will be switching soon to a different one and hoping that one goes better. I’m also working on a few other things… Thanks again for commenting.

  11. Oh Nancy, as you know from my own rants, I am very thankful to hear another voice about the struggles of these very heavy, but possibly life-saving meds. These decisions are impossible, we just can’t know if this will be the ticket or not. I wish you well with your break, and hope that you get that zizz and energy back and that longer term decisions are made more straight forward.

    PS – I have not ever considered not taking the Femara, though I did drop a pill once and the dog ate it!!!!!! I still feel guilty about that!

    1. Philippa, I know you are dealing with some of these same issues. Your posts are what really gave me a kick to get going on my own, plus I know from communications with other women that you and I are not alone. Yes, the decisions are important ones and we keep doing the best we can through of all of this stuff. Thanks so much for commenting. And it’s kinda funny your dog ate one of your pills! My dogs tend to avoid dropped meds! Probably a good thing!

  12. I am 3 years post bilateral mastectomies. I was prescribed Arimadex and took it for about 9 months. I feel your pain sister! Insomnia, joint pain horrid joint pain, hot flashes 24 times a day, bone loss, leg cramps and vaginal dryness. My first ONCO said it was all in my head, really (he) did say that! So I threatened to stop taking it if he didn’t at least give me something to help me sleep. He changed me to tamoxifen………I found another ONCO. I like my second ONCO (she) felt it would be better for me to continue with Tamoxifen but AI’s would be better. Well she wrote RX’s for pain, sleep and hot flashes! She said she wanted to be supportive as possible. So I took the pile of pills every day, I gained 25 pounds and got more and more forgetful and loopy with every passing day. Oh now I have diabetes as well, I am told that Tamoxifen can hasten this. I am 59 by the way, I was told all of this was normal for a women of my age. REALLY? I think not. About 3 months ago I stopped taking the Tamoxifen and I feel so so much better. I see my ONCO in a month and I am still deciding whether to tell her that I have stopped. I am fearful of being “that” noncompliant patient. I am also fearful that she will once again talk me into taking it again. My family is supportive of my choice. I guess I am worried I wont be treated the same as a compliant patient.

    1. Pam, Gosh, I’m sorry to hear about all your side effects and resulting difficulties. I hate the cycle of med taking, though I also understand that sometimes it can’t be avoided. I’m dealing with that very thing right now myself. Hope your upcoming appointment goes well. I’d suggest being honest with your oncologist and not worry about being a non-compliant patient. It’s your body, your cancer, your life and ultimately all decisions are yours as well. Good luck with everything and thanks for sharing so candidly.

  13. I KNOW your pain! I felt the same way with extreme joint pain, weight gain, lethargy, and vaginal dryness etc. Have you done any lifestyle changes? At the risk of being a pain-in-the-arse, the four things I did to get rid of my symptoms completely are
    1. Increased my exercise to 45 minutes of aeoribic/day and incorporated yoga/stretching

    2. got off all dairy protein…milk, yogurt, cheese etc. This came at the advice of my acupuncturist AND “The China Study” and Dr McDougall’s work and I’m so glad I made this choice.

    3. Increased my natural Omega 3 intake and I don’t mean fish capsules. 1 tablespoon of chia seeds thrown into anything you eat during the day will give you more omeag-3’s than 5 fish capsules. There is currently a clinical trial to study the effects of omega 3’s on joint pain and other side effects of AI’s. You can get info here:
    http://clinicaltrials.gov/show/NCT01385137

    4. Am now using vaginal estrace…a bio-identical “estrogen-like” vaginal cream that is completely safe for women who have been diagnosed with breast cancer. This has made a HUGE difference in libido and painful intercourse and has made a huge difference in my relationship.

    I know that not everyone can do all these things, and I’m not saying they will help 100% of the time, but our body is so much more able to heal than we give it credit for if we seek out our own healing power.

    I want the best for you and hope you find a good fit for your life.

    Thanks for all you do!

    1. Thank you for the info. I swim for 45 min every day, without it I am sure I couldn’t move. I recently started taking chia seeds. But I was told that I couldn’t use vaginal estrace. Maybe I didn’t ask for right cream. I have lost 20 pounds in the last 3 months since being off the Tamoxifen and my diabetes is well under control. But still have that nagging feeling I should end my break from that nasty drug. Time will tell wether I am justified or not.

      1. Pam, Thanks for reading and for sharing about what you’re doing. I’m so envious of swimmers. That’s such great exercise. I know what you mean about that nagging feeling. I plan to stay off AIs for a month or two at most and then get back on – because of that nagging feeling! That’s what feels right for me. Thanks again.

  14. I took Aromasin for five years finishing up about a year ago. The only real side affect I had was no libido with no improvement after being off the drug for a year. Unfortunately my husband takes drugs for Parkinsons Disease that increases his libido. Lots of compromising at our house.

    1. Nancy, I don’t like reading that things haven’t improved for you after a year off of Aromasin. I’m sorry. Marriage is all about compromising I guess. Thanks for sharing.

  15. I, myself, refused ALL that my onc suggested 10 years ago. I had cancer in both breasts and chest wall. Had double mastectomy. I refused the chemo, etc. and even the AI. AI’s have not been used long enough for good or bad results to be used clinically. I am feeling great and never regretted my decision! Chemo does not cure BC and AI’s do not guarantee a recurrence. Your body is telling you to stop the harmful medications. Just listen.

  16. Rant away, my friend! I’m so sorry you have had such debilitating symptoms. As you know from my last comment on Part I, it was a nightmare for me.

    I’m sorry that your bone density has declined. You have every right to be frustrated and to take a break from the medication.

    Sometimes listening to our bodies is the best thing. I tried to tolerate this awful AI (Aromasin), but in the end, I felt better after I stopped completely.

    By the way, it is really annoying to have doctors dismiss symptoms as due to stress, aging, etc. I as a patient hate being dismissed.

    Great post!

    1. Beth, Yes, I do remember about your difficulties with AIs. I agree, sometime we do need to listen to our bodies; in fact, sometimes we have no choice! And it is super annoying when symptoms are dismissed or not adequately addressed. I do plan to get back on my new AI next month. I’m hoping that one will go better, at least for a while. Thanks so much for sharing, Beth.

  17. Thank you so much for being honest about these side effects, Nancy. I was pre-menopausal before chemo. Now, with 3 Taxol treatments left, my ovaries are getting tired! I’ll either be expected to go on Tamoxifen or an AI. I am really contemplating whether I want to take else drugs or not. Tamoxifen has it’s own list of not so pretty side effects, including increased risk of uterine cancer. As patients, we need to listen to our doctors but trust our gut instincts.

    1. Lisa, Thanks so much for reading and commenting. I completely understand your hesitation. Please remember I’m not suggesting to anyone that they should not take these drugs. You should certainly follow your doctor’s recommendation IMO. Just be aware of potential side effects and never suffer from any of them in silence. Maybe you’ll be lucky and not have any! Good luck finishing up Taxol. Keep me posted on things.

  18. Nancy, I understand where you are coming from. I absolutely could not take anastrozole. Not only did have the typical side effects to the extreme, but it shot my blood pressure up and I had heart palpitations. My oncologist was sure it couldn’t be the anastrozole, but agreed there was no other explaination, so he put me on fermara. Not great, but tolerable. I have had a recurrence in my spine, only three months after radiation ended, so I am now on a monthly shot flasodex as well(trust me, you really don’t want to know about it). The bad thing is my oncologist is talking about indefinitely rather than 5 years because of the recurrence.

    Something that happened in my support group lately I think unfortunately shows how many oncologists handle our complaints about side effects. Two women were comparing their AI side effects and each said her oncologist had told her she was the only patient he had on that AI with those particular side effects. Then one of them asked the other, “wait a moment, don’t you have Dr. So-and-so, too?” They had actually been told by the same onc that each was the only patient with those particular side effects.

    My oncologist tends to downplay side effects, too, but when you complain he does take you seriously and if there is something that can help, like sleeping pills for insomnia, he does it.

    I know that tamoxifen and AIs are progress, and I am certainly not ungrateful for how they can help, but we really need treatments and preventions that have less toxic side effects and allow better quality of life. And in the meantime, our doctors need to take our complaints seriously.

    1. Elizabeth, Gosh, that’s an interesting observation from your support group. I do think the side effects are downplayed and I also think too many women keep quiet. I’m glad we have these meds too, I just wish there were better options. Some day… Thanks for your insights.

  19. I have been off arimidex for a year and feel great. I will never go back to the life I had for 30+ months on this horrid drug. My life was filled with crippling pains, infections, foggy thinking, depression, affected vision, fear, and other symptoms too numerous to mention here.

    I wonder what happened to the creed of “do no harm”.

    This is a drug promoted by fear and fear alone. The oncologists believe there is no alternative to AIs and persuade patients it is the only thing between them and death. Nothing about quality of life when you have cancer. The treatments are all barbaric, insensitive and callous. And it needs to end. Soon!

    I do not believe the hype of aromatase inhibitors put out by the drug companies. I think their data is purposely and easily corrupted in an atmosphere of little hope that the dread of cancer produces.

    I refuse to allow this fear to be the deciding factor in my decisions regarding my treatment. This is my life, my body.

    We all need to report our symptoms to the FDA whether we choose to quit this drug or not. It is only then when side effects are reported that it can be determined if this is indeed a viable drug.

    1. So happy to hear that life after Arimidex can possibly get back to normal. I’ve been on it for 9 1/2 years and look forward to getting off of it soon. I’ve learned to live with the aches and pains by exercising and stretching as much as possible, but my biggest concern is my foggy head, loss of words and memory. I hope they come back. I’m only 55 years old and for the past 10 years I’ve been feeling like a very old woman.

      1. Joan, I hear you. I bet you are looking forward to getting off! Good for you for hanging in there for all this time, that’s no easy task. I hope you do notice some improvements when you go off. Let us know. Thanks for sharing.

  20. Nancy thanks for part 2. Also thanks to Dr. Attai for her post. I’m switching from Arimidex to exemestane in another week (although I’d like to have a longer “break”). Hopeful that I have less pain with it. Fewer overall side effects would be great too but not aching every day and having more energy would be great. I exercise regularly (did before all of the BC stuff as well) and can’t imagine how much worse it could be w/o that. My onco team has been very supportive and helpful.

    Hope your med change is a positive success.

    1. Anne, I’m switching from Arimidex to Aromasin too and I am certainly hoping things go better with the change up. I’m so glad your onco team has been helpful; that means so much doesn’t it? Let’s hope things go well for us both. Keep me posted and thanks for sharing.

  21. Nancy, I read with interest “The Dark Side of AIs.” Despite having 2 tumors, one TN and one ERPR+ my oncologist wanted me to take an AI. I declined after reading everything patients had to say on “Ask a patient…(fill in the drug)” and knowing that any AI would not prevent a recurrence of TN. I chose quality of life rather than a few percentage points. Don’t get me wrong, I want to live, I just want to live. Check out my blog at http://www.caringbridge.org/visit/cancermamahascancer2 for Marcy’s point.
    Marcy

  22. Nancy, I can so relate to what you have written in this post. In fact, I could have written it myself. I’m almost 2 years into this BC “adventure” – bilateral mastectomy followed by Arimidex.

    I have a long, long list of side effects – elevated blood pressure, loss of libido, constipation, thinning hair, cognitive decline and debilitating joint pain. Oh yes, I also had surgery last week for a rapid onset cataract. I’m grateful that the insomnia and hot flashes have abated somewhat.

    I’m also very thankful that I was close to retirement when the BC arrived. I retired a year earlier than planned after a career of many years as a health professional and I honestly feel that in my present condition I would be unable to continue practicing effectively.

    My oncologist really does not like to “own” the side effects and hardly acknowledges them, much less supplies support or treatment for them. My approach at my last visit with him was to write a list of my SE’s, along with how I’m attempting to manage them. I did this because I felt, and feel, that it’s very important for him to be informed of the impact the AI’s have on quality of life. If I say nothing then the fair assumption is that there are no problems. A written list, for my medical record, can’t be discounted with a sigh and rolling eyes and then promptly forgotten.

    However, I’m very fortunate to have a supportive PCP who listens and is happy to assist in managing the side effects.

    In spite of all this, I persist with the Arimidex because of my fear of recurrence. I realize, though, that my life is becoming increasingly circumscribed due to all the things that I can no longer do because of my physical limitations. At my next visit with the oncologist I will present him with another list that includes the suggestion of a possible switch to letrozole, fully expecting him to react with exasperation and view it as a challenge to his authority.

    It really shouldn’t have to be this way.

    1. Kathleen, I’m sorry to hear about all the side effects you’re dealing with and I’m sorry your oncologist isn’t very helpful. Keep talking about your issues – and no, you shouldn’t have to deal with his authority issues. That’s just not right. Like you, I love my PCP. That helps doesn’t it? Good luck going forward. I’m switching to Aromasin next month. Maybe I’ll write an update post at some point. Thanks so much for chiming in on this discussion. Take care.

  23. I SO understand what so many people are saying here but I’d like to share my story which is a bit different. I had to bully my once-wonca to let me have Arimidex rather than tamoxifen, I suspect the policy was finance led as this was before Arimidex went off patent. But I’d read the BMF data and chose Arimidex myself as the least worst side effects. He also suggested I take a break between RT and AI: I did not want to as I had already started to feel better from the chemo as the RT gotto the end of its 6 weeks. To start with the AI was very painful, I had aching joints, felt like I was 82 rather than 52. But I took paracetamol at regular intervals all day and kept moving and found that this side effect was for me readily controllable. The hot flushes were far less than they had been on chemo. What I wasn’t prepared for was the vaginal atrophy. Sex had become too painful during chemo and depression had seen to my libido but the killer was constant UTIs. I endured that for 5 years, chairing meetings where I could hardly sit still for the pain. BUT I’m still on Arimidex, now completing my 6 th year. I haven’t seen the once wonca after the first 6 months because I never trusted him or his hospital. I get my pills from my GP and sent myself to get a Bone scan after 5 years (plus regular MRIs and the occasional trip to my lovely female surgeon ). My bone density is hardly dropped, perhaps because the keeping moving has evolved into lots of weight bearing exercise. And I researched the oestrogen creams and bought them myself after serving my 5 years of hell. Libido is coming back and the absence of any UTIs since I started the oestrogen is wonderful. So, yes, I’m a very stroppy customer – I refuse to be victimised as a patient (a word form the same Latin root as passive and pathetic). I wanted the Arimidex and I’ve made it bearable. I just hope it has worked because if I ever have to be treated by a NHS doctor and the co-dependant BC nurses again I will kill myself rather than surrender. Am I angry and bitter, you bet! But only when I stop and look back. Staying in the present I’ve now had 6.5 years post diagnosis and life is good. I thought it wouldn’t matter if I died then because I had achieved a lot in my career and setting up 2 beautiful daughters with degrees and qualifications but the last 4 to 5 years I’ve done a load more including 3 new qualifications and some fascinating work plus new friends and new puppies… And I’m grateful for all of it. Courage to you all.

    1. Sarah, Thanks so much for sharing your story. It once again underscores how this situation is different for each person. I’m glad to hear that now 6.5 years post diagnosis you’re feeling pretty good about things. That’s great. Wishing you many more years of good health, Sarah.

    1. Eve, I hear you. Everyone has to make the best choices they can based on their own situations. There is a lot of “balancing” going on isn’t there? Hope you’re doing well. Thanks for stopping by.

  24. Hi. My experience with AI’s has been horrendous. Started out in January 2012 with Femara. Always told my oncologost how I felt on it. Was told to “bear with it”
    In June 2013, I ended up in the ER because I could not use my hands. They hurt soooo bad. Called my oncologist and informed him of this trouble. Received a call from his nurse and was told to NOT go off of them. The good they do was significant. I told her that I wanted my life back. Saw oncologist in September and he was “not happy with me” He put me on Aromasin. I took this for 4 weeks and ended up back where I was on the Femara. Seeing oncologist in November, I intend to tell him that I will take my chances and not take anymore of this poison. I have faith that my life is in God’s hands and I will trust that.

    1. Lorraine, Gosh, your experience with AIs sounds horrible. I’m seeing my oncologist in November, too, and believe me, we’ll be discussing this topic in depth. Good luck with things. Keep me posted. And thanks for reading and commenting.

  25. Oh my… this made me cry! I am at the ranting point too! I cannot stand this any longer and I did not know that taking a break is even an option. I feel like that if I give this up, I will be giving in to ovarian cancer. But I can’t stand it anymore.

    1. Sharon, I’m not suggesting a break or that stopping any medication altogether is the best option for anyone else. Taking a break for a month or two was right for me. And I did start to feel better. But I was determined to try Aromasin and I plan to stick with it if at all possible. And by the way, a good rant now and then is a healthy thing IMO. Thanks so much for reading and commenting. Don’t suffer in silence. My best to you.

  26. hi nancy,
    Hi Nancy,
    i just read your ‘pt 2’. you write in such a ‘calm voice’ – i believe your sincerity! if we don’t report this stuff, no one will put together all the facts! after 3+ yrs of tamoxifen, with minimal SEs, oncologist switched me to arimidex. within 5 months i felt like i was 80 yrs, wearing ‘cement boots’ – knees down, stiff and painful. i then had a month off and tried aromasin. i then had pain in arms/shoulders/neck, along with crying jags/depression. (an optimist; i have never had depression) dr. was fine with letting me off after a month or 2. now 3 yrs later, i’m better (?) but have chronic body aches. like you, i knew my body – not a complainer and always pain-free. now, if i had the choice, i’m not sure i would’ve taken any of it. we just do not know the long term SEs. Please! check out my FB page ‘arimidex: friend or foe’ – a great group of women fighting the good fight!
    thank you for your blog!

    1. Cindi, I’m sorry about all your difficulties. I believe adamantly that women (and men) should not sit back and suffer in silence regarding side effects. I have concerns about the AIs too, but… so far, I’m still taking Aromasin. I will check out your FB page soon. Thanks for the invite and for taking time to comment.

  27. I have been on Arimidex for almost a year and a half. The first few months were not bad, however, this last year has been horrible. I have joint pain,weight gain (50 lbs) fatigue, chemo brain, vaginal dryness and loss of libido, depression, and I feel like I am at least 80 years old. I also have had problems with my hands requiring multiple surgeries for tendon release, bil. carpal tunnel, trigger fingers, and excruciating hip and shoulder pain. I went off for a month with no improvement in side effects, now I am almost ready to ask for another drug holiday and then change to either Femara or Aromasin. I have been miserable. My onco doc is very supportive and will try whatever you feel you might need. So I am gonna take her up on that and ask to change meds. I can hardly stand the thought of 3.5 more years on Arimidex. Hopefully, the side effects will be different.

    1. Kitten, I’m sorry to hear about all the horrible side effects you’ve had. I had similar issues. I’m glad your oncologist is listening to you and willing to change your medication. Trying a different AI sounds completely logical. For me, the change made sense and so far, things are going reasonably well on Aromasin. I know the effects are cumulative sometimes, but… Good luck with things. Keep me posted.

  28. I’m so moved to read all of these. It’s so hard. I too went from doing triathlons to walking and feeling as if my feet were broken when on arimidex. Now I tried exemestane and I’m
    So obsessed with thirst I feel like I’m
    Crazy. Also the exemestane causes
    Crazy dreams. Plus they originally said 5 years now 20
    Years. I did remove the ovaries too. Bottom
    Line this feels so toxic. It’s like chemo…hurt me to make me
    Better. So glad others shared.

    1. Sabrina, It is hard sometimes. The side effects of some of these meds can be very difficult and yes, it does make me feel as if I’m doing more harm than good sometimes. Ultimately, each person (along with her doctor) chooses what best suits her situation. And it’s so important to not keep quiet and suffer in silence. Talking to your healthcare professionals is crucial. Thanks for sharing.

  29. I have taken Aromasin for a year now. Oh my! I decided that I really don’t want to live with the hand pain, + the trigger thumb on my right hand. In addition, I’ve had a really “low mood” which I try really hard to alleviate through “more exercise”! I have always struggled with sleep and now I have to work hard to fix all that (Melatonin and adrenal supplementation). I’ve really worked to achieve a really healthy body!(I had thought I was healthy prior to “the breast cancer” discovery.) I eat clean food as best as I can and do at least an hour of exercise a day.(I’ve always exercised!) I emailed my oncologist earlier today, prior to finding this “blog” and told him that I had chosen to stop the Aromasin. I feel so relieved! I work with many doctors and will continue to find the “best practice” so that the cancer tumor cells in the blood won’t “take hold” again. I’m really hopeful! Thanks for all of your interesting comments and your sharing. Please everyone, keep working hard to find what is best for you to keep you “healthy”.

    1. Carol Sue, Thanks so much for sharing your experience. Sometimes a person does have to choose QOL. Sometimes the side effects are just not manageable. Of course, this is something that needs to be seriously and thoroughly discussed with your doctor(s). I’m glad you feel relieved and confident you’ve made the best decision for you. Thanks for reading and good luck with things.

  30. Hi Nancy, I have been taking Letrazole for about 18 months now – for a rare type of ovarian cancer called Granulosa Cell Tumour. Its hormone based cancer like breast cancer and the drugs are definitely working to shrink my tumours etc.
    Your comments about the side effects though have really struck home, as I am really beginning to struggle with joint pain, sleeplessness, loss of libido, vaginal atrophy and generally feel low. Like every woman who has commented, and many more besides, I am not a whinger but I still feel if I “mention” that all is not well, I am seen as forgetting the amazing work these drugs are doing for me.
    My husband is incredibly patient and supportive, but its hard for him too, to be told that sex (when it rarely occurs) is becoming more painful and unpleasant – that I basically just want to be left alone! He just wants to show his love and care.
    I feel as though I have aged 20 years in the last 18 months. I have a slight impingement in my shoulder and two discs in my neck showing wear and tear, but the pain I get from them is disproportionate to the problem and I am certain its aggrevated by the medication.
    The thought of staying on this medication basically until they stop working fills me with dread. I too have wondered what would happen if I “missed” the odd pill or two. You have given me a bit more courage to discuss the downsides of the side effects more at my next follow up as I feel that so far they just tick a box as “normal”.
    Thanks

    1. Linda, Let me just say that I understand. And I’m sorry about all the nasty side effects and about your ovarian cancer diagnosis, too, of course. Please do not suffer in silence. I hope you do discuss your side effects at your next appointment. At the very least, you deserve validation. It’s a very good thing that the Letrazole is working and that your tumors are shrinking. Still, your SE concerns are valid and they shouldn’t just be swept away. Hopefully at least some of them can be addressed. Thanks for reading. Good luck with things.

  31. I was diagnosed with stage 2 breast cancer at age 42. The first thing that was done after my lumpectomy was the removal of my ovaries to make me post menopause. I was then given Arimidex. Though I always have some degree of joint and muscle pain I found that regular exercise is helpful. I joined the Livestrong Program at my local YMCA. It’s a program for cancer survivors that gives you three months of full use of the facility along with a trainer. More then anything it helped put me into a healthy routine. The pain is still bad at times but I noticed when I back off my physical activity it become much worse. The hot flashed stopped completely.

    1. Michelle, Thanks for the tip. I did the Livestrong program too and loved it. I have a post on it if you’re interested in reading it. For some women exercise helps, but for some it does not. Regardless, it’s important to try to get in some exercise. Sometimes it’s not quite that simple, though. as far as getting rid of the pain. Thanks for reading and sharing.

  32. Thank you for your impowering blog, Nancy. I consider myself to be a strong woman and one who speaks her mind, but I also feel frustrated with oncologists (I’ve had two). They don’t seem to want to believe that any of our side effects are related to the drugs. I’m 66 started on arimidex and then switched to aromasin. After nearly 4 years of feeling 90, not being able to sleep due to the pain in my hands and arms, and virtually no sex life (yes, we 66 yr. olds still enjoy sex), I’m ready to quit. I thought I could make it through, but I’m afraid of more possibly irreverable nerve damage. And quite frankly I felt going through chemo and radiation with the skin peeling off my breast were easier to deal with than this. I only pray it’s not too late and that my SEs will go away with time. It’s true every cancer experience is different which makes choices difficult and lonely. God bless you and remember: “Worrying does not take away tomorrow’s problems; it takes away today’s peace”.

    1. Connie, I’m sorry to hear about all your struggles with SEs of AIs. They can be so tough to manage. All I can say is, don’t stop talking about any or all of your bothersome SEs. I understand how you want to stop taking the Aromasin. I’ve had similar thoughts. I’m trying to make it through. Good luck with things, whatever you decide to do. Thanks for reading and sharing.

  33. Hi Nancy,
    Thank you for being so honest about your experience! In 1999, I was diagnosed with Stage 1 ER+ PR-HER- at age 39. Went through a lumpectomy, Chemo, radiation, and then I took Tamoxifen for 5 years – had cancer scares due to its reputation and a whole year of laryngitis that my oncologist refused to attribute to Tamox – although I had found multiple sources mentioning its tendency to caused hoarseness in singers (I am not a singer, but was teaching dance 5 hours a day 6 days a week – used my voice a lot)…Fast Forward to 2012 – New Primary in the left breast at age 52 – Stage IIA – no lymph nodes, ER+ PR- HER- Due to chemo and probably residuals from my first round,(and lots of dance) I had severe arthritis in my left hip – after they treated me, again, with chemo, I was all but crippled – I was on a cane for goodness sake…after all treatment was over, the MO insisted that I had to wait 6 more months to have a total hip replacement (the only option left for me). I went to the ortho doc who said that was hogwash, that he could do it immediately with no problem. I had every confidence in the guy and we convinced the oncologist to let him do it. Sounds weird, but I don’t feel like the cancer doctors saved my life, I feel like the Orthopedic guy did – I could finally MOVE again. It was like the chains were taken off! Then, I was told that I must take Arimidex…I tried it for a while in 2013 and started to feel all sorts of side effects…especially joint pain. After the pain I had suffered with for YEARS…there was no way I was going to voluntarily suffer more by taking a hideous pill that MIGHT stave off cancer…hell it (Tamox) didn’t work the first time. So I stopped taking the Arimidex from June 2013-March 2014 Had my Mam – all was clear – all other tests were clear…Went back a few weeks ago to the oncologist, and he insisted that I must take something – mind, he wrote in his notes that it would reduce my risk by a mere 5-6% that’s all. I told him no Arimidex – and my mother had had Tamoxifen for the 2nd round of her BC (no we do not have BRCA 1 or 2) and ended up with blood clots in her lungs -So I would not go back to that either. Aromasin was the next choice, however, the price of the medication made purchase impossible for me, and I resented spending hundreds of dollars for something that was possibly going to reduce risk of a recurrence by only 5-6%, but most likely debilitate me again. I told him I would try Arimidex again, it was cheaper…but within days, the pain, depression, nausea and general feeling of malaise took over. I DO NOT want to live like that. I haven’t gone back to him, – not due until October…but have stopped all of the pills – Doing as much as I can diet-wise and looking at other more healthy natural options. I can’t LIVE with that quality of life. I am soooo angry that our only options are these hideous medications that put us at so many other risks…we might not die of breast cancer…but we will have other diseases that could lead to the same, or at the very least, a seriously diminished life. That, for me, is not good enough. I really don’t know what is the right thing to do – as you said…I trust my gut – I know my body – my body needs something else. There have got to be better answers – 100 years from now, people will look back on the way they treated us for this disease and be appalled.

    1. Dorrie, Thank you for sharing about your experience. It’s so hard to know what’s best sometimes. In the end, only you can decide what’s best for you. My oncology appointment is coming up soon and we’ll be talking about all this stuff again. Sometimes I feel like such a broken record… Thanks again for sharing. Good luck!

  34. I am glad everyone is sharing on this topic of side effects of AI’s. I was on Aromatase ! for 6 weeks and felt I was dying. I then decided I cannot live like that. I couldn’t even walk 20 feet without exhaustion. I cannot believe doctor’s think people can live without hormones in their bodies. We need hormones to live. I will take my chances. My breast cancer was LCIS and only .05 cm. None in lymph nodes. Had surgery on the breast – removal of part (no cancer was found in it) and radiation with SAVI. (Internal Radiation for 5 days). I sometimes think the drugs are more damaging than they are thought. I don’t recommend quitting for everyone, but I couldn’t handle the extreme fatigue anymore.

    1. MissLady, Cancer treatment is indeed harsh and sometimes the side effects of AIs do become unmanageable for some women. I often wonder about the long term damage and/effects too. I’m sorry you suffered so while on an AI. Sounds like you are comfortable with you decisions, so that’s what really matters. Thanks for sharing. It’s so important.

  35. I was diagnosed with stage 1 grade 2 ER+ PR+ HER – breast cancer in 2010. Had a lumpectomy, chemo and radiation which was completed around October 2010. My onc recommended Femara at the time, but I was unwilling to continue with the meds because I knew the side effects were numerous. Well in November of 2011 my cancer markers started rising and by March of 2012 I was diagnosed with stage 4 metastatic cancer, it had gone to the pleura in my lungs. Restarted my meds and within a few months developed severe joint, foot, hand, hip and back pain. I also woke up one night and my thumbs were locked. My onc first switched me to arimidex with no relief and ultimately ended up on aromasin. The side effects are better, my thumbs have improved but still suffer with joint pain. Good news is I am in remission but the quality of my life is diminished. I have gained 20 pounds ad cannot get it off. My cholesterol is high even though I eat a majority of vegetable diet and my fasting blood glucose is also on the way up. I feel like if the cancer doesn’t kill me one of the side effects will. It is so depressing, yet I feel awful even complaining. There are so many people that would suffer the side effects to be in reemission . The worst part for me is that I am never getting off of this. They say that it will stop working at some point and when it does they will add other therapies to “treat” the cancer, since a cure is not available. Guess we all have to do what is right for us, sometimes I feel like just throwing them out and living what is left of my life without the med.

    1. Carol, I’m sorry about your recurrence and I’m sorry you have so many side effect issues from AIs to manage too. It’s an awful lot to deal with. We all do what we must and what we feel is best. Your thoughts of wanting to throw out the meds is understandable. I think we all have those feelings now and then. Keep on keepin’ on… My best to you and thanks for sharing.

  36. I enjoyed everyone ‘s honesty. I have been on exmestane, the fatigue , nausea, anxiety, crippling joints in thumbs ,sleeplessness has been awful but the recent shortness of breath topped it off! It was the most miserable experience. I spoke with my oncologist and he took me off for 2 weeks and I felt like my old self again. Quality of life is the most important for me, if I have to continue to live that way what’s the purpose! I started on dim and indole 3. Eating habits continue to be clean! I eat a lot of cruciferous vegetables and practically no sugar! Thank you everyone for sharing!! Surviving is not enough, I want to live! All going well! Hope this helps someone!!!

  37. Gave up Anastrozole (Arimidex) for a month due to side effects Oncologist (who is very supportive) changed me to Exemestane (Aromasin) five days in and I feel as bad as I did before. No energy joint pain coming back have been on these drugs overall for just under a year cannot face another four. Thinking about coming off altogether or going for chemo and getting the whole ting over and done with.

    1. Kay, I’m sorry you’re still feeling so lousy. Some just can’t tolerate the AIs. There is Femara to try too. And Tamoxifen. Discuss all options with your doctor and do what feels best for you. Good luck. Thanks for reading and sharing.

  38. Hi Nancy thank you for responding I am so grateful that I found your website typed in “I hate Anastrozole” on Google and your website came up. The most important thing is that I now know that I am not the only one that feels like this. Was beginning to think I was a complete fruit cake and it also gave me the confidence to challenge my medication. So thank you again.

    1. Kay, Thank you so much for reading and taking time to comment. You are most definitely not alone and you are most certainly not a fruitcake! I’m glad you’re feeling more confident. I would never suggest that someone should stop taking meds. I just strongly believe that no one should suffer from nasty side effects in silence, nor should the side effects just be swept away when brought up. Women need help in managing them. Thanks again for reading and sharing

  39. Nancy I have enjoyed reading your blog, like Kay above your blog popped up on my google search. I was on Tamoxifen for 6 months then had a complete hysterectomy, my choice, I have been on Anastrozole for 5 months and the aches and pains just could not handle anymore. My onogologist very supportive and told me to take a week off and she changed me to Aromasin. I hope it is better and I agree with the walking and biking that I do allow me to handle the aches and pains better but I thought it was time to try another drug to see if it was any better. Thanks again for everyone’s post on this blog, you never know who you are helping that never post a comment!!!

    1. Cindy, It’s certainly worth trying one of the other AIs IMO. I’m doing better on Aromasin so far. Thanks for reading and commenting. Sometimes reading the comments is way more informative than reading my posts! Sharing is great. Good luck with the Aromasin.

  40. Took Arimidex for 7.5 years. Severe bone pain, memory and cognitive loss. Exhausted, weak. Broke hip after 3 years despite active lifestyle and excellent bone density before Arimidex. Oncologist discounted all side effects I reported and did not put them in my neck dal recurring.
    Started high dose vitamin D and all symptoms except exhaustion improved dramatically with 3 months.
    Discontinued Arimidex 10 weeks ago. After 4 weeks exhaustion became fatigue. After 10 weeks I feel a small amount of energy in the morning.

    Have your vitamin D levels tested ASAP. I also have been working out with a personal trainer at the senior center fir a year now. That has gelled my strength and valance and joint pain.
    BTW I have list 15 lbs in the 10 weeks since discontinuing Arimidex. 40 more pounds to go.

    1. Janice, Your experience with Arimidex sounds similar to mine. My vitamin D level was very low as well and I’m still on a high dose supplement to keep it up. So yes, it’s important to have that checked. Thanks for bringing that up. And I hear you about the weight issue. I’m working on that as well. I’m on Aromasin now and things are going better so far. And your oncologist discounting your side effect issues is unacceptable IMO. These things need to be acknowledged and addressed seriously. Thanks for reading and sharing.

  41. Nancy,
    I am so happy to find your site. I am on Aromasin for 6 months now. The pain in my hands and joints is unbearable! I am so happy to hear from all the others how exercise and nutrition can help. It’s worth a try, doing nothing is very depressing. I am going to give the suggestions a try. I too suffer with the guilt of not wanting to take the medication.
    Thank you so much
    Kathy

    1. Kathy, Yes, definitely try the suggestions. Exercise can really make a difference and of course good nutrition is always important. Good luck and thanks for finding me.

  42. I started Letrozole during a time of progression and extreme pain due to a tumor flare. So it wasn’t until all of that was addressed did I get to enjoy the insufferable joint paint and fatigue it offered me. About two months into my awareness of it I called it “The Joint Killer.” I trained my oncologist and NP, when they asked me about it, to refer to it as TJK. Four months after becoming aware of its effects on my body I just stopped it. I couldn’t take it anymore. My knees felt like they were splitting and I woke up with claw hands and developed a nasty trigger finger on both hands. As if TJK knew, both middle fingers were affected.

    I have to hand it to my oncologist, she was sympathetic and offered at one point to try a new drug, but I delayed because it was working. And as much as that sounds ridiculous, when you know the line of drugs to stave off progression of Stage IV BC is limited, you try to suck it up because it’s working.

    But ultimately I switched to Exemestane and, for me, it’s paradise. In fact, if there if progression at some point that will be bad news for me. Not because of the progression, but because it will be time to try another drug and say goodbye to what has been a nice respite.

    Physicians really need to to listen to their clients. (I prefer that to patient. I may be sick, but I have all the power.) After all, with the options that are available today in 2014, you should not be forced to suffer your quality of life to the point that you can’t live your life. So far I’ve been fortunate and my team has been responsive (hired after the first team was pretty lax).

    1. Scorchy, I had much the same reaction to Arimidex and I’m now on Exemestane too. Things are going better so far. I like “TJK”. That sure fits. Maybe we could also call it “TBK”, the bone killer. My bone health has taken a hit. I also like how you prefer to call patients clients. You’re such a clever one! I’m glad you have a stellar team who listens. That is so important. Thanks for reading and sharing.

  43. Thanks for recycling this one, Nancy – I missed it when you originally posted it!

    Oh joy of joys – NOT! Every time I look at that damn pill, so white, so very tiny – and think of the havoc it wrecks…

    I have to admit, my protestations during my 5 years of tamoxifen were much grander than my objections to exemestane now. I think my tolerance of side effects is different now that I’m dealing with mets. On the one hand, I’m NOT going to be miserable, and I’m not. On the other, I’d rather this than chemo. For me, I actually think it’s the everolimus that’s doing the heavy lifting of side effects. That’s the pill I skip every now and again, when the mouth sores get so bad I don’t want to eat for days, or when the breakouts are so bad I look like I have the chicken pox. The combination was bad enough that between fatigue and fogginess I had to quit working. And what is this “libido” of which you speak?

    What I find fascinating is that the side effects are ALWAYS tolerable, for the doctor! Good for you for demanding a break! I hope it went well and that this drug is better!!

    1. Lori, Yes, I’m sure your tolerance of side effects is quite different now. This is exactly why some women hesitate to bring up their “complaints” and side effect issues because there is this feeling that things could be worse. This is, of course, true but it doesn’t mean anyone needs to just suck it up and keep quiet while suffering. I know women like yourself with mets would be the first to agree. Your side effects sound pretty unpleasant… and your comment about the libido made me laugh. Thanks for reading and sharing some thoughts.

      1. Hi Nancy,

        I am so glad I found your site. I was diagnosed in 2013 ER+, PR+ and HER 2+. I had left breast removed February 2013, did 8 rounds of chemo and I did Herceptin for one year. I had bad side effects with the chemo that they had to pre-medicate me with steroids and Benadryl before I could receive the chemo. The Herceptin caused me to have joints pains in my knees and hands and I had trigger finger in my right thumb. I am 49 years old and I felt like I was 80. My oncologist wants me to take Arimadex and I was to supposed to start one year ago. I told him that I could not put another drug in my body at this moment. I have gone through so many side effects with chemo and Herceptin that I am not mentally ready to try another drug at this time. He is of course not happy with me but he told me that I have to feel comfortable with the decision that I make. I am sitting on the fence about starting the Arimadex that I feel I am going out of my mind. It is now a year after chemo and 4 months after Herceptin and I am now starting to feel somewhat normal. I was thinking of trying alternative type treatments. I found a Chinese herb called Myomin that is similar to Arimadex and I was considering trying this herb. I have to come up with the money to see a Naturopathic doctor first. I figure what do I have to lose by trying an alternative treatment. I have so much anxiety right now and I am not sure what to do at this point. Hopefully I will figure it out.

        1. Ann Marie, I understand your anxiety and wish to not put any more drugs into your body. The side effects you had sound awful. You could always try the Arimidex for a bit and see what happens. Of course, it’s totally up to you. You will figure out what’s best for you. No one else will, right? Good luck. Keep me posted and thanks for finding me and commenting. Welcome!

        2. I too was triple positive. Just finished last Herceptin. I can’t put another drug in my body. After reading about the AI side effects I am refusing them. I would rather have 10 year my way than 20 years their way. Comes a point that you have to look at the quality of your life. Being alive but miserable is just not an option. A drug that is basically a chemical castration for a woman is just not acceptable. Is it wrong to demand quality of life?

          So happy to find this blog!!

          1. Michele, I am happy you found my blog too. Of course, quality of life is important. Every woman needs to think through all of these decisions very carefully and make choices she feels most comfortable with. It’s important to remember that not all women experience the nasty side effects. Thank you for reading and sharing your thoughts.

  44. I was on Arimidex for six weeks and was a mess with severe hot flashes. After a month break now on aromasin for 3 months Not many hot flashes but the joint pain is excruciating! Can barely get down the stairs. I have been trying to find statistics on benefits of aromatase Inhibitors if you do not stay on them 5 years. I am ready to give up. Then to top it off, a friend who was on AI about 18 months dropped dead of an embolism. Do you know of any places I could check out that would give me statistics on my recurrence rates if I get off of Aromatase inhibitors? I am stage 1b no node involvement, 100% estrogen/progesterone positive.

    1. Lynn, That is a great question. I’m sorry I don’t have an answer though. Please let me know if you find out the stats. I’d love to know too. My oncologist did mention to me that the greatest benefit comes in the early years of taking the med. But still, he is quite adamant about me staying on even beyond five years, so… I am sorry about your friend. Very scary and very sad.

  45. I wish I would have found your blog when I was struggling with my own issues. I was diagnosed in March 2008….early stage invasive Ductal Carcinoma which is the most common, garden variety where cancers go. I had no lymph node involvement, so I was among the ‘lucky’ ones, I was told. LIke you Nancy, I have a tendency to rant, so I’ll cut to the chase.

    After recovering from surgery (lumpectomy) and a subsequent six week course of radiation, in Oct 2008 I was put on Femara (Letrozole) for the next five years. Initially, I felt tired ,light headed, and no stamina. Then I began to get stiff and had trouble sleeping. After a few months, I was in a lot of pain. At times I couldn’t move my fingers. My left thumb was so painful, I actually had to have a cortizone shot (helped but didn’t relieve pain entirely). Then the constipation began and the loss of libido. I had mood swings and suffered bouts of depression. Three years into it, I was also diagnosed with Ostopaenia (lumbar spine). My hair was dry and lifeless and began thinning badly. I also had trouble with intimacy because of the dryness down there. At the end of five years, I had gained 25 lbs and I looked and felt ten years older. Despite all of this, I stuck it out, feeling alone and isolated, too embarrassed to ask the all important questions.

    At the end of five years, my oncologist wanted me to go for ten years. At that point, I had to ask ” If I stop now, what is my risk of recurrence compared to a healthy woman getting breast cancer for the first time?” His answer was “In your case and given that you’ve been cancer free for five years, the risk differential is probably neglible right now, but it can go up as time passes”. I then asked “Does that mean the drug absolutely guarantees I won’t get cancer as long as I’m taking it?” The answer was “There have been recurrences even on these drugs, so NO, there are no guarantees”. I had other things to consider of course, but namely about the particulars in my case. I made the decision to stop because the risk of recurrence did not outweigh the risk of more bone loss and osteoporosis, which can cause other very serious problems….and then of course, there was all the other stuff.

    I’ve been off the drug now since July 2014. My hair looks great and there’s a lot of improvement in the other areas,, but I’m still struggling with constipation and I haven’t lost the extra weight. The take away should be that every woman’s breast cancer is different hence, so are their options. Women need to do careful risk vs benefits comparisons to make their own (well informed) decisions…. it’s your body, after all!

    1. Edna, I wish you’d found my blog earlier, too, but you’re here now! I’m glad to hear things are improving for you since you went of the AI, not in all areas, but at least in some. You’re so right, each woman needs to weigh the risks and benefits. Making well-informed decisions is key for so many reasons. Thanks for reading and sharing. Rant away any time.

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