The Dark Side of Aromatase Inhibitors

The Dark Side of Aromatase Inhibitors – Part 2

I have so much to say in this post that I don’t even know where to start. I guess you could say this one is a bit of a rant. And that promise to work on being less wordy – well, not today!

I’m a firm believer that a good rant now and then is a good thing, even a healthy thing, so that’s one reason I’m sharing about my experience with the dark side of aromatase inhibitors.

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 really 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 was 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…

Get more articles from Nancy’s Point in your inbox once a week. 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 non-compliance 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 compliance. 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?

And finally, please read this outstanding write-up by the amazing Dr. Attai, who asked for input from the #BCSM community regarding side effects of Tamoxifen and AIs. Many thanks to her for wanting our input and then presenting her findings at the recent meeting of the Annual Meeting of  the American Society of Breast Surgeons. Maybe the medical professionals ARE listening, or at least starting to!

Okay, I’m done – for now! Thanks for reading!

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?

Sign up for news/emails from Nancy’s Point!

 

I'm done with this one...
I’m done with this one…

 

523 thoughts on “The Dark Side of Aromatase Inhibitors – Part 2

  1. I took myself off Letrozole 5 days ago and I can tell a difference already. I planned a 10 day drug holiday without telling my oncologist but I do plan to go back on it and then re-address the issues in January at my next appointment. I will discuss taking it every other day, because the half-life of the drug ( The half-life of a given medication is how long it takes for the body to get rid of half of the dose) is 48 hours. I have only been taking it for 4 months. Before that I was on Tamoxifen for 11 months and after a few months of knee pain and generalized joint stiffness and pain it was bearable, only because I added turmeric, osteo-biflex, ASA, omega 3’s, CoQ10, green tea extract, magnesium, Biotin, Vit D and Vit E. In addition I have added essential oils to help with mood and other issues. I need to add some exercise into my daily activities. I have gained about 20 lbs, my hair is thinning and the hot flashes and leg cramps are getting better. Managing the side effects is soooo time consuming but necessary. Thank you for the article and your honesty.

    1. Teresa, Isn’t it amazing how quickly you felt the difference? I wonder what your oncologist will say about your ‘holiday’. I have often wondered about taking the drug every other day too. I might just bring this up at my next appointment. I think you will find that doing even a little bit of exercise helps. I have also gained 20 pounds, have the hair issues, hot flashes and leg cramps. Day by day, but each morning I must admit, I force myself to take that darn little white pill… Thank you for reading and sharing.

      1. I’m not only a bc survivor, I’m a health care practitioner of 18 years. Arimidex has a half life of about 55 hours. That means it takes over 2 days to clear one pill from your system. No wonder we feel sh*ty when we take these pills! I started these in March after I finished my chemo. Now (October) I have stopped. The pain is too severe. Am I doing a holiday? No way! I’m done. I will take natural aromatase inhibitors, there are bunches of them. Including melatonin, resveratrol, and indole 3 Carbinol. I will take those and hope for the best. Do I want my cancer to return? Hell no! Am I willing to give up quality of life to hope it doesn’t? No way! I’m 39 and have no ovaries. I will take my chances with the miniscule amounts of estrogen being converted from testosterone at a cellular level. I’m good! Listen to you bodies ladies.

        1. Good for you Leona! I am thinking of doing the same thing. I had ER+ PR+ stage III breast cancer with node involvement. I went through the surgeries, intense chemo, radiation, and a long clinical trial. Following all of that, I started taking Tamoxifen and have been on that for 3.5 years. My oncologist would like to switch me to an AI, but I have declined. I feel like a flake most every day…some days are worse than others. Doing my job as a school psychologist has become so difficult some days. My once very thick hair has been steadily thinning since February 2014. Radiation caused a thyroid disorder and the node dissection caused lymphedema. I am just tired and I am not willing to take on any more. Managing the side effects of all that I have endured is exhausting and like many of you, I feel I should just be grateful to be alive and that I have no business to complain. I appreciate the opportunity to vent to you all. Here’s to QUALITY OF LIFE!!!

          1. Thank you Tracy. Every aspect of someone’s cancer journey is unique and quite personal. I think it is important we remember we are making the best decisions we can at any moment with the knowledge and information we have. I am still in pain – I have been off the AI’s for about two weeks. I am hopeful it will go away. On a different note, I left clinical medicine to go to work with a diagnostic lab company as a medical science liaison. One of the tests my company offers is a CA 15-3. It is a breast cancer marker. It’s use is controversial (to say the least) but when it is used it’s use to track and trend. In other words, it is checked frequently and if there is a spike then the oncologist know the cancer might be coming back. What is questionable is if this information improves survival outcomes. Well, at any rate, we offer this test quite affordably at $22 for out of pocket cost. I am getting it done today and will continue to get it every 3 months – for my own piece of mind. I only mention it in case any of you want to read more and talk to your oncologists about it. Well wishes to all.

        2. Thanks Nancy for this helpful post! Leona, I am so with you!!! I am a BC survivor was diagnosed with stage 1 IDC & DCIS secondary breast in December 2011 I was ER/PR + and Her2-. In 2012, I had a biladeral lumpectompy followed by chemo and radiation. Dr told me that based on my Onctype DX test is was unclear whether I needed chemo but because I was in no way capable at the time to make informed decisions I just decided to do it as an extra pre-caution. The next phase after that was Tamoxifen. I took that for a couple of years then was switched to an AI since it was determined that I was post menopausal. So it has been 3.5 years on anti-estrogen meds which I am supposed to stay on until Spring of 2017. Well I recently realized I have been suffering in silence on these meds. I stopped taking the AI on a recent healing vacation to Hawaii and after only 5 days I noticed how much better I felt. It’s now 6 weeks and my energy has returned horrible side effects are gone. The drugs are poison. I called my Oncologist and told her I stopped and that I did not think anything could convince me to go back on them. Her asst called me back and said Dr said “It’s not an option” and suggests you switch back to tamoxifen”. I have not done anything and scheduled a face to face on Dec 4th. I feel like I am at such an impasse. I am a home chef and cook all my own food, eat well and want to take anti-cancer diet to next level. Now that my energy level has returned I am able to get more exercise not being on these drugs the mere thought of taking anymore makes me feel very depressed.I am dreading my Dr appointment & expect that the Dr is going to try to scare me but I am standing my ground and listening to my body. I have been researching AI natural alternatives. Are you familar with DIM DIINDOLYLMETHANE?

          1. Reading your awful experiences on AIs, I wanted to let you know that I am taking low dose naltrexone instead (this medication can also be taken with the AIs). It’s not entirely clear how it works but there have been successful studies with breast cancer. Mostly it’s been taken by people who’ve exhausted all other options. You can read about it here: http://www.canceractive.com/cancer-active-page-link.aspx?n=3660
            I was diagnosed with Stage 1, Grade 3 ER+, HER- BC in March and had a WLE, node sampling, two margin clearances, and rads. I was put on Letrozole but suffered extreme bladder pain, blood in my urine, bleeding gums, plus the usual joint pain, so had to stop taking it as I couldn’t function (I’m a single parent and work full time.) It took me months to recover. I was then put on Anastrazole instead but after a week had the same symptoms as before. I started LDN as I think it is better than nothing. I’m allergic to some meds (penicillin, Erythromycin) but am able to tolerate the LDN so far.

      2. Hi Nancy,
        I just thought I would drop my comments in regarding both tamoxifen and Anastrozole that my wife has been taking for the last two years. The poor girl was disgnosed with BC just over two years ago and was AMAZING at how she coped. She had lumpectomy and lymph nodes removed from her right armpit. She managed to avoid the dreaded “chemo” and worked through her three weeks of “radio”. When she was deemed “cancer free” in September 2014 she was then advised to take Tamoxifen. About four months after she started taking it she started to EXPLODE at me over the most trivial things. Ive been physically attacked several times over the last two years. I cant even be nice to her sometimes. Her language is discusting too. She even yelled down the phone to my 92 year old church going mum that her sone is a “f*****g c**t”! She has been advised to take anti depressants but would only take then for 4 weeks as she tells me there is nothing “wrong” with her and its all my fault? Basically she is acting in the same way as she was when at 45 years old she was diagnosed with being “pre-meniopausal” and “put on” HRT for 14 years! I know 4 other chaps who are in the “same boat” as me but not as extreme as I experience… Their wives hadn’t been taking HRT for so long either.. Im at the end of my tether. After 25 years I’m heartbroken but she doesn’t appear to care…

        1. am now 74. first mastectomy at 42. second at 43, hysterectomy at 46. reconstructive surgery at 43. tamoxifen 11 years. at 67, cancer found under implant that had ruptured. massive surgery . one lymph node involved 5 swollen. total 19 lymph nodes removed. thank God, so far no lymphedema. had 9 mos of act, 36 rounds of radiation. took arimidex for five years, now on aroamsin. all side effects possible, including peripheral nerve damage to feet and hands. can hardly walk. used to walk at least five miles a day and long biking rides. have had mostly miserable physical life since age 42. but have lived to see children and grandchildren and that has made misery tolerable. now am plagued by rages of anger. never directed toward family but toward those i once ignored. almost 17 years of chemo meds have permanently damaged my
          brain. still read and remember though.

          1. After researching the AIs i chose quality of life. I had cervical cancer at 33 . Diagnosed when i was 10 weeks pregnant. I was told to terminate..i refused. I have a beautiful daughtet. I had a c section hysterectomy in one shot.i did menopause and postpartum at the same time. 5 years of premerin followed by 5 years of tamoxafin. I still got breast cancer at 52. Quality of life… It was the best choice for me after chemo and a year of herceptin I refused the ais. I understand your rage. I think we all do. Can I ask you something…if you had it to do over would you do anything different?

    2. We each make the choice that we can live with…i just hope that when making the choice to take ais or not. ..you have educated yourself. Ask your doctor what the long term effects are. …the answer is they don’t know. Drugs are too new to know. That answer isnt good enough to help make a choice that will have negative long term effects. …osteoporosis. ..vaginal atrophy. .
      Diminished libido. …its just my opinion but i think these drugs are a chemical castration for woman. If your life has no quality…
      whats the point.

      1. The vaginal atrophy and the diminished libido. Yes, yes! I always try to address these issues and all I’m ever told is to buy some lubricant and “it’s mostly in my head.” Not ok. Not enough. This area of my life post cancer has been one of the biggest struggles. Would love to talk more with others going through the same thing.

        1. Wendy, Agree. Not okay. Not enough. This topic needs further discussion that’s for sure and it shouldn’t just be brushed aside. And insinuating it’s in your head is condescending and just plain wrong. Thank you for bringing this topic up.

          1. I think the biggest flaw in cancer treatment is the time spent informing patience so they can make decision for their care. One oncologist actually said to me…if we told you everything you would lose your mind. Sadly we have to be our own patient advocates because doctors dont take the time to inform you. I was offered more anti depressants over a mere conversation to answer my questions. There are alternatives to ais. The side effects are too dreadful. I take the side of quality over quantity every time. Alive and miserable is not living.

          2. What I also don’t understand is why the oncologists do not test our estrogen/progesterone levels if are breast cancer is positive for those. Why not? Wouldn’t it be good to know – like a baseline. Then recheck to see if the drugs are actually working to reduce those levels. They refuse. I don’t understand that at all. Does anyone know why not?

          3. This is a huge problem! Last year when I had an attack of vaginal dryness I was blown off. Now I am finishing my 2nd year on arimidex and I am in pain every day from it. I was sent to gyn in the cancer center as all my other doctors, part of the system. I went to my own gyn first, no real answers there, but sympathetic. The male gyn dealing with this issue, was reading my file on line as I walked in. This was not a good sign. His assistant Kelly was out sick. They are now addressing this issue. He pretty much insulted me a few times without even knowing my whole story. All my medications have had to be changed after being on arimidex. The other ones started from 5 surgeries a series of the snowball effect. A infection after my double mastectomy. I had a panic attack in post-op on my 3rd surgery where my mind took control and I could not breath and they put the breathing tube back in. I had anxiety already and was pretty much convinced by waiting six months for this surgery that I was going to die. I was never the same again. Arimidex has made everything worse. Every month, it is another side effect. I feel as if I am just a shell of my body and nothing inside is me anymore. I am a widow. This does not mean I never want to have sex again. This really is just to physically painful to walk around with. This is no quality of life. Of course the first course of treatment is basically using coconut olive oil on the outside and inside of your vagina( I was told two days prior at a support group meeting about this) and get this physical therapy for my vagina with a therapist. She is not covered by my insurance and her discount is 120 per visit. Out of my budget. I have been proactive with all my other side effects I get them all. I take yoga for my bones, my breathing which is a big issue with anxiety. I work very hard there. I have neuropathy so this is a challenge. My hair loss I addressed by going on line. My onco apologized after I said my peace to him for the first time this year. I want to know the truth so maybe I can help myself but if I am lied to or blown off by telling me nothing is proven about my hair, when all I have to do is look in the mirror! Yes arimidex has gotten me to fight back because I feel crazy all the time. I did not take it tonight. I will not take it while I am in this pain from vaginal dryness that he says is moderate. I said to him maybe I should go off arimidex, he said well at your age there is not that much estrogen in you. I am 59. So why am I on this at all! I want some quality of life. I was not going to take it more than the 5 years anyway. I have told my onco that. If I get cancer back I would not go through any of this again. Sorry for this rage but I am not myself anymore because of this drug. They need to do better. Wendy

          4. Wendy, my heart breaks for you and what you are suffering through. These AIs have nit been thoroughly researched nor has the side effects. I chose quality of life. It was the best choice for me. AIs and then more drugs for the side effects do not equal quality of life. I know we each have to make a choice that we can live with but is the AI choice really living. It sounds like it isn’t for you. Please re think your choice and make sure that it is truly your choice and nkt a choice made from fear or the intimidation of an insensitive oncologist. Michele

        2. Well, Wendy…interestingly enough…it appears to be “in my head,” too. Of course, those docs were male or in their 40s living “normal” women’s lives. I just wonder how this same message got into so many heads. Maybe we need those silver foil candy-kiss beanies, like in the movies, to ward off these “strange” thoughts?!

        3. I have been on Arimidex for 5 months, and also have decreased libido and atrophy. I have used Replens, which was what has been recommended. It only slightly helps. I recently got an email about a procedure called MonaLisa Touch, and I have been doing some reading and research and asking around about it. It is a procedure that has been done in Australia for years, and has been approved in the US since last Nov/Dec 2014. It involves 3, 5 minute in-office procedures done approx. 6 weeks apart, It is a type of laser treatment that stimulates collagen production. Many women report improvement after the first treatment. It is not painful, and has minimal discomfort for a short time afterwards from what I’ve read. It is a procedure specifically for both menopausal women and post breast cancer women. I cannot find anything negative about it, except the cost–which is not covered by any insurance. This is what make me angry– since both Viagra and penile implants ARE paid for in many cases, for causes less severe than cancer. This wreaks of discrimination. The MonaLisa Touch procedure is now offered at a Women’s Center near where I live, and I have been in touch with them. I have one more reconstruction surgery to go in January, and then will look into it more. But if you are in a position to check it out now, please do so. It looks like it definitely has promise! Blessings and courage. [I will definitely post updates if/when I proceed with procedure.]

          1. Elizabeth, Thank you for sharing about the MonaLisa Touch procedure. It sounds like a good option, but yes, it’s too bad it’s not covered by insurance. How much does it cost? I don’t know anything about it. So again, thank you for sharing.

          2. My friend has had the Mona Lisa procedure and said it has helped immensely!! Also, I’ve been on Arimindex for 5 months and went off day before yesterday. My joints hurt so bad I can hardly get out of the car or out of my chair if I’ve been sitting anytime. Hair has thinned so much and I have fine thin hair to start with. I’m going to research more alternatives because I have just felt crazy and depressed on this drug. When I see the oncologist in Dec. , I hope I will be strong and not let her talk me into any of the other ones! They are all awful from what I read . Good luck to all who are dealing with this. Kathy (58)

          3. I will definitely check that vaginal procedure out Elizabeth. I have been on armidex for four years, 7 months, only five frigging God awful months to go!! My feet are killing me, my right knee hurts so bad I can hardly walk my two dogs, but I do, limping away!! No sex drive whatsoever, had horrible problems due to severe vaginal dryness. I was having to urinate 12 times a night, just horrible. I have been seeing a urogyn doc, she prescribed mannose D every day, vitamin c, using NO soap near vaginal area, just water. Also, replens made me worse, I use natural lubricants that contain coconut oil and vitamin E. After about a month, the vaginal stuff has gotten much better. I am only taking the armidex mon-thurs now due to the side effects. I have a huge thyroid goiter that I had biopsied, negative for cancer, thank God! The endo doc thinks the arimidex is causing the thyroid nodules. So far, cancer free though! The drug does work. I can’t wait to get off of this drug, hopefully my bone density will go back up, was great before armidex, now I have osteopenia. I can certainly understand why some of you stop taking it, it is a very hard drug to keep taking!!!!

      2. I totally agree! Life has no quality for me on AI’s and I’m going to take my chances too. I was stage one Invasive Lobular Carcinoma and opted for mastectomy with reconstruction. No lymph node involvement and had clear margins on cancer “specks” of calcifications. Seems ridiculous to be killing myself with these drugs if the cancer hasn’t. My last oncologist said to me “but we need to cure your cancer”! Seriously? I thought the surgery pretty much did that. They have no clue about any other options.

      3. Hello Michelle – i am on my third oncologist (waited an hour and a half to see him then got 5 minutes to talk). So far, no one listens to those complaints. They don’t even give you a chance to express your fears and problems associated with AI’s because they have no answers or remedies for the loss of libido, vaginal atrophy, painful sex, etc. More drugs for osteoporosis but then those cause problems and then there are more drugs for that. It’s a drug rollercoaster! Now he wants me to try Aromasin – I’ve tried Arimidex and Femara with hideous side effects. Not sure I can do it. Yet I’m terrified I’m making a mistake. It’s nice to see that there are others out there who think the same. Oddly, the doctor said only 5% of his patients don’t take the drug. I find it hard to believe.

          1. Hi Nancy – I have the new prescription for Aromasin and will probably give it a try. The doctor said that both Arimidex and Femara are basically the same thing and my last oncologist should have had me try Aromasin. Thanks!

          2. Still haven’t started the Aromasin as I read (somewhere) that the side effects don’t reverse once you quit them. Ugh!

          3. Gaye…the side effects do not reverse. They..tye doctors. ..neglect to tell you this along with a plethora of other pertinent information You cant reverse osteoporosis or vaginal atrophy or nerve damage. What should become easier is the joint pain as the hormones return to again lubricate your joints.

        1. Gaye. .i don’t believe only 5 % arent taking the ais. I also changed oncologist because the first one would not allow me to ask questions. I did a lot of my own research and i chose quality of life. For me..i would rather have 10 happy years than a lifetime of painful agony. I dont even know if ais really work they are going on theory that if you are hormone receptive if you block the hormones you block the cancer. They told me tamoxafin would do that. I took if for 5 years in my 30s…at 52ci got breast cancer any way. Don’t let any one bully you…do your homework and make the choice that is best for you. Michele

          1. Thanks Michele! I agree – they really do seem to feel that if they bully you, they can force you into taking something. And they really have no clue if it’s working. Even the new oncologist (who I sort of liked) told me that I could go from a Stage 1 to a stage 4 if even one cell of cancer escaped during my surgery. Great! How do you deal with that thought? Yet the AI’s are horrible. I too think I will take my chances. Just started taking DIM which is supposed to be a natural estrogen blocker. Doctor said they can’t endorse it because it is not a drug. Of course not, they are in the pharmaceutical companies back pocket. But every day is a worry. I hear lots of bad stories of people – even on the drugs – going from stage o to 4 no matter what. Thanks again! It’s nice to talk to other people going through the same thing.

    3. I was on Tamoxifen for 6 months and the hot flashes were unbearable. My Oncologist put me on Arimidex and things got better. 5 months later I was diagnosed with Neuropathy, in my left leg….I researched side effects and muscle pain along with Neuropathy were on the list. When I called my Oncology office they agreed it was a possibility, but wanted more testing. I have had x-rays and MRI’s on my foot and back….nerve testing, lots of blood work etc., I called my PCP and told her I think the problem is the medication. She consulted with a Neurologist and they stopped my Arimidex, effective yesterday. I do not want to take any meds, as I cannot even walk without pain. I feel like I am 90. Thanks so much for sharing stories, it is nice to hear I am not alone. I am suppose to take the med for 10 years and have not even passed my first year….

  2. I was on Femara for 3 years, no meds insurance so it was $568.00 per month. I never paid that because I was able to get samples as well as I was on one grant and paid $50.00 per month and then a different grant where I paid $10.00 per month. When I lost the grant due to my husbands overtime, I quit taking the drug for a few months until my next oncologist appointment. When they asked why I wasn’t taking it, I said I couldn’t afford it and there were no samples available since it went generic( only $50.00 cheaper). The few months I was off of it was pure heaven!!! I deal with fibromyalgia and arthritis already so the side effects just magnified the pain. Irritable bowel, brain fog, pain, stiffness, feeling 80 years old, having to literally crawl out of my bedroom and then wait an hour for the gabapentin to give me a little relief. Well, the oncologist flipped out, and put me on anastrozole. I could get it for $10.00 a month until now when Obama care doesn’t allow employers to be self insured for scripts. So as of December 1, I will now be paying $180.00 per month. On this drug the side effects are just as bad but also includes my hair being in terrible condition. I am supposed to be able to finish taking it in January 2016 unless they decide to keep me on it for another 5 years. I keep telling them quality of life is in the toilet. I too have gained about 25 lbs, have leg cramps and tons of pain. I take magnesium, potassium, calcium with d, coq10, krill oil, bcomplex, and a great multivitamin called “one source” from Walmart. How crazy is this life? 10 prescriptions a day, one 80mg aspirin, and 9 vitamin supplements a day.

  3. I decided not to take any AI’s and chose quality of life over the unbearable side effects of these meds. It does worry me from time to time however I have been in remission for 2 years now w/o the meds and I feel so much better now!!! I know too well how painful life is on AI’s so I decided that I will never again try to take any of them. God bless those of you who suffer through the AI treatments as my heart goes out to you all.

      1. Nancy, Reading your blog has opened my eyes. Thank you! I’m on Arimidex post surgery- chemo for ovarian cancer ( NED for a year) and the side effects have been making me miserable. I’d love to find an oncologist who cares about this! Am going to try a different AI.

        1. My Oncologist, Dr. Matt Mumber, has written a book,”Sustainable Wellness”, that addresses ways to ”get back on track” following Cancer treatment. I highly recommend it!! It’s available on Amazon.com…..Ethel Evans

        2. Lisa, I’m glad you are finding my blog helpful. Please remember I am not suggesting anyone should stop taking their prescribed medication. I would never do that. I do encourage everyone not to suffer in silence. I’m sorry your side effects are making you miserable. It might be worth trying a different AI. Good luck.

        1. I was on Arimidex for five years then switch to letrazole. The five years was really tough in me but I stuck it out. Then when I saw my oncologist he says I need to be on another for five more years. I stop in November couldn’t deal with the sick feeling I all the time. Hot flashes, anxiety and just sick. He told me to take the holiday break and start over in Jan. Today is the eleventh and I felt sick. Anyone know the new guide lines where they want you to switch to another one. I had stage one

          1. I would recommend getting a second opinion before starting another 5 years. I asked what the ‘magic’ of 5 years is, and was told that for each year the risk goes down, so at 5 years, would be low. (I was a stage 1).

          2. I also had stage 1. I asked what the ‘magic’ of 5 years was, and was told that for each year the risk goes down, and the 5 years is based on that. If you have any question as to whether to continue, please get a second opinion, and then decide what is best for you. I don’t know all the guidelines, and each case is so different, that they have to be just that–guidelines, and not one size fits all treatment.

    1. I have been on ARIMIDEX for one month. The side effects are horrible. My doctor has taken me off it for this week. Looking forward to next week and seeing what his new plan will be. I agree that quality of life is so very important. Best to all of you.

      1. Julie – I managed the Arimidex for 3 and 1/2 weeks – could not make it to a full month. Horrible side effects! I called my oncologist and they told me to quit but to come in and talk about another option (Femara), Well, I filled that prescription (beginning of Sept. 2015) and still cannot bring myself to start it. Oddly, my oncologist told me that there is a “6 month window” to starting these – meaning if you don’t start taking them within 6 months of surgery, there is no point in ever starting because it won’t work. WTH? Scare tactics to make me comply! NO, NO, and NO!

        1. I didn’t start arimidex until a year after radiation. My oncologist was okay with my decision and was supportive. I did try arimidex a year later and was on them for about a month before we decided together my side effects were too serious to continue. Of course he wanted me to try another treatment but gave me a month to think about it. Good luck

    2. My oncologist called me yesterday and told me to stop taking the arimidex. After months of various anti nausea meds were unable to keep me from uncontrollably vomiting episodes I landed in the ER, dehydrated and sick. I figure if my body rejected that poison so vigorously maybe I need to let it go, and be okay with my attempt to ‘follow doctors orders’. It’s all so archaic and barbaric. Seems like there’s the media campaigns about women’s health care and breast cancer treatments, and then there’s the reality. I feel so terrible for all my sister sufferers who have young children, are young themselves and will subject themselves to anything to live longer. My very sincerest and deepest regards for your ability to persevere.

    3. I made the decision not to take Al’s after 3 months. I was so nauseated, couldn’t eat, headaches, dizzy, shaky, metal taste in my mouth, vaginal burning, hot flashes that were unbelievable, and on and on just like many of you. I already had joint pain and pain in my lower back but it did get worse. I just made the decision to stop taking them completely. I will consider taking one of the others when I see my oncologist in November. For now I’m thinking no more. I can’t be sick for 5 years. And the way I understand this is its just “insurance.” It doesn’t mean it won’t come back. Somehow it seems odd to me too how the protocol for treatment is the same for all of us. We are all made up of difference genes and logically that doesn’t make sense to me. I have such a violent reaction to all drugs Im thinking I might do just as well on half the dose. Anyway, good luck to all of you and may God Bless us all.

      1. Phyllis – I agree. How can one dose be prescribed for all of us? Doesn’t matter if you are thin or heavier, young or older – same dose for us all. Seems like shooting in the dark. The side effects were so debilitating that I just couldn’t continue.

  4. I have been on al’s 2 years and every morning I open the bottle which due to the joint pain is very difficult to do, and I force myself to take the little white pill and wonder what harm I am doing to my body. I feel scared to take it and scared not to. I have lymphodemia due to a DVT from side effects of chemo so I can’t take anything to help with the pain from AL’s, it’s hard to go on each day and live life. I am getting help thru physical therapy for the lymphodemia but everyday is such a chore. I am hoping for a break and something will help. I don’t mean to sound pessimistic I am a very positive perso but I am wore out!

    1. Kathy, You don’t sound pessimistic, you sound honest. Never feel badly for telling it how it is for you. I feel the same way about the pills – I feel damned if I do and damned if I don’t. I’m glad you are getting some relief through PT. Keep me posted. I care.

  5. I don’t understand why doctors deny the horrendous side effects of these drugs. I did my homework and when i sat down to discuss the side effects with my doctor i was dismissed. She actually said to me. ..can’t you just do as you arw told. .i can’t when my quality of life is at stake. Vaginal atrophy. ..sorry..im 53 and im not ready to kill off my sexuality. No breasts…no sexuality. …chronic pain. …osteoporosis. …more drugs to address all the side effects…..i would rather have 10 years of life with quality than 20 years with no quality. I am a woman not a statistic..i deserve to be treated as one and so do each and every one of you.

    1. Michele, You most certainly do deserve to be treated as a woman – a whole one. You are more than a patient or a statistic; we all are. Keep on speaking up when you feel the need to and don’t let your concerns be dismissed, although I know it’s easier said than done too often. Thank you for sharing.

    2. I am in Australia and have been reading these posts with great interest. When I complained about the 90 year old body,I am 49. my Oncologist told me it was normal ageing. When I said I was sick of this drug and wanted a holiday, he then said it wasn’t Femara causing bone pain and joints seizing up, the only side effect that this drug causes is stiffness in the hands and feet. Yes I have that, as well as every bone in my body aching.
      I felt like telling him he is a dick and to read up on the side effects that most seem to be having with this drug, but as this is my second Oncologist I sit and say nothing, it is easier to do this. I will stop taking this pill for a month and then go back on it. Just wondering how long until I start feeling better in my body?
      Keep blogging,

      1. Viv, I don’t accept that aging thing as the catch all reason for so many of these side effects. I hope you can get some relief or at the least, some validation. If you do stop, how long it takes to feel better will vary from person to person. Good luck with things and thank you for reading and sharing. And I plan to keep blogging.

      2. I too am in Australia and from the moment of my diagnosis the one thing my gut told me was do not do hormone therapy (why they call it that I have no idea, it should be called hormone deprivation)!!
        My gut lead me to find my lump, and I have had surgery, chemotherapy, radiation and relented and went on Femara… Five months in, I had joint pain, carpal tunnel, weight gain, loss of libido, dry vagina, tiredness (& I am usually non-stop on the go), anxiety and the severe depression to the point of thinking about suicide, which is ridiculous after all I had been through to beat cancer. I saw my oncologist who told me to stop straight away and have a 6 week break… After 10 days, I started to feel so much better emotionally and now 8 weeks later I feel back to my old self, the carpal tunnel has gone, I have a libido, I have lost weight. When I saw my oncologist she wanted me to go on another aromatase inhibitor and I said ‘No’ never again. She has asked to see me early in January to discuss once again and I know I will not have changed my mind. Quality of life is what I fought for, not to be turned into a depressive, broken person with medical aliments that are not age related (I am 52). There is no guarantees with this medication and I am not willing to live like that; and if the cancer came back after living like that I would be too angry… I work in palliative care, so I know and see statistic’s all the time…
        I too am not telling anyone NOT to take these aromatase inhibitors but I could no longer live that way!
        There is not enough TRUE information, statistics on discussion on this treatment…
        Be well and follow your own path.

        1. Susan, I’m with you. The worst part of the AI’s is that there is no test to see if they are working at doing anything to prevent cancer – none. Five years of torture just don’t seem to be worth it if no one has a clue if it’s working. I have a friend who went on Tamoxifen for 5 years and her first mammogram after being done with it showed her cancer had returned. So what was the point? I am 63 and was told that my cancer was a very slow growing one so I am taking my chances and pray that my gut reaction after trying Arimidex and dying a bit more each day was to stop and live my life again. Even after 3 months off, I still have some side effects. Not going to do it.

          1. P.S. The tests that my oncologist DOES due is to check my CBC and D3 – seriously? They are just testing to see what damage this drug is doing to you. They don’t do estrogen/progestrone levels or tumor markers. Isn’t that what they should be looking for as well? I don’t get it.

          2. Gaye, absolutely agree…
            Living is what life is about, not just existing! Our bodies have been poisoned beyond endurance in some cases, however to take drugs to hopefully prevent a recurrence and then when those drugs give you other issues, what do they want to do but give you more drugs and so the cycle continues…
            My body has always given me clues when something is not right and my gut instinct has never been wrong (even though I test it occasionally to my own detriment).
            All breast cancer ladies live with fear (although it lessens, it is always there); I have decided to live my life and enjoy every day and do what I have always done, listen to my body and take care of myself, mentally, physically and spiritually.
            Take care of you Gaye x

          3. In the UK some people are taking low dose Naltrexone (LDN) to support them through AI treatment. It seems to boost the immune system and lessen side effects. It’s only available on private prescription but is quite cheap. I’ve just begun taking it in preparation for starting Arimidex, after having dreadful side effects on Letrozole (blood in urine, very painful bladder and bleeding gums).

  6. Nancy, thank you so very much for this post! It helps so much to hear about someone else’s experience. The doctors don’t always tell the truth about side effects, so blogs like yours are truly life savers.
    Before I go into my own experience, I have advice for those of you who have had symptoms “poo-pooed” by your doctors, or who haven’t been treated as individuals: Get a new doctor! And keep getting new doctors until you find one that takes you seriously. My first oncologist told me most women “breeze through” chemo; I felt terrible when it made me so sick I could barely function. I thought I wasn’t fighting hard enough. All she would say was that she didn’t understand why I was “struggling so much.” After doing some research and reading some forums, I realized my experience wasn’t uncommon. I felt she’d lied to me, so I switched oncologists. The one I have now is very understanding and kind. I wish I’d switched a lot sooner. Don’t let anyone minimize your experience.
    So, here’s my story. After surgery, chemo, and radiation, I tried two of the three AIs as well as Tamoxifen and had terrible side effects with all of them. I had some health issues before I was diagnosed with breast cancer, including chronic pain from severe arthritis, and I had lingering issues from chemo as well, including neuropathy in my hands and some memory loss. (Every time I see a doctor, they tell me those effects will go away in six months… a year… two years… the time frame keeps getting longer!)
    Anyway, the AI’s caused hot flashes, but I didn’t really mind those; I’m one of those people who’s always cold, so I would joke that I was finally warm enough. But the joint pain was unbearable, and the neuropathy and memory loss got even worse. I was exhausted all the time and could barely walk, so the oncologist put me on Tamoxifen.
    I thought that would be easier. Silly me! I’d been joking about those hot flashes, and “instant karma” was out to get me. I had one loooong hot flash that never ended. I felt sweaty and grubby and miserable, and the joint pain was just as bad as it was with the AI’s.
    Goodbye, Tamoxifen!
    Now I’m taking a break, and I feel terrific. Once in a while, I still wake up with the “flaming hand of death” from the neuropathy, and I still have joint pain, but I’m happy and able to work. I’m a romance novelist, and I need to feel halfway decent in order to write those spicy love scenes!
    I wish I could end the story here, but I’m about to call my onco and tell her I want to try that last AI. Maybe, by some miracle, it will agree with my system and I’ll be okay. More likely, it will be like the others. But for the sake of my husband and my parents, I feel like I have to do my best to prevent a recurrence. If I only had myself to worry about, I’d probably ditch the drugs and go for quality of life, but I don’t want to put the people I love through the wringer again.
    So I’ll try it, and I’ll give it three months. It could wreck my career if it knocks me out like the others did; writing isn’t an easy way to make a living, and if you stop putting out new books your income really takes a dive.
    So far, cancer has cost me a lot, but it’s also taught me a lot. I don’t put off the things that matter to me, and I value every scrap of light and love and beauty that comes my way. I try to focus on the world around me instead of my aches and pains, and I’m going to do my best to deal with the next medication. I really do want to stick around for a while!

    1. Joanne, Thank you so much for sharing about your experience. It does help us all to hear how things are going for others. I agree about switching doctors (of any specialty) if yours isn’t working out. Sometimes, this isn’t as easy as it sounds though depending on where you live. I’m sorry you have had such difficulty with the drugs. As you know, you certainly are not alone. I hope the last AI goes better for you. Like you said, if it were only me, I’d ditch the AIs too, but… Good luck. Keep us posted and thanks again for sharing.

  7. So glad to find your blog. I’ve been on Tamoxifen and and then Arimadex for nearly 3 years. I’m fat, fat, fat and the weight just doesn’t want to come off. After starting my New Years Diet and gaining another pound, I’m up about 30 lbs and and frustrated. I never made the connection with the weight and the drug. I have the joint pain and now osteoporosis in my back, along with foot issues. Libido is gone, but I th that was from the weight gain. It’s all so frustrating.

    Vent over. Happy to be alive, happy to be cancer free.

    1. Kim, Well, my next post is for you then! I’m glad you found my blog, too, and I totally understand your frustration. You are welcome to vent any time. Venting does not mean we are not grateful.

  8. I am 42, was diagnosed at 37 with stage IIb breast cancer. Have the BRCA2 gene and was put into surgical menopause with a hysterectomy and both ovaries removed. I have been on Anastrozole for 3 years. My husband and I have only been married for 6 years and it may be our last. He is about DONE with my no libido, and complaining about the pain during sex. My gyno told me I have the vagina of an 80 year old woman. Thanks, so glad my vaginal atrophy is amusing to her. All my Oncologist says is to use lube, but that does not address the lack of desire. Don’t get me wrong, my husband is a very supportive, generous wonderful guy, but I am sure that he has had enough of my BS when it come to sex over the past 3 years. I tried to talk to my oncologist about this, but of course I got no help. Plus the 15 pound weight gain that is impossible to get off even though I run 2-3 miles 3 days per week. The fat is all around my mid section too. YUCK!!!!!! I feel like I sould not complain, because I am alive and cancer free now. I should be happy about this and focus on that. Am I being petty and too concerned about my appearance and sex???

    1. Cathleen, No, you are not being petty at all! You deserve to have a full life and part of that concerns your appearance and sex life too. Of course, you and I are happy to be alive, but our quality of life matters too. Just know you aren’t alone and I urge you to not settle until you find a gynecologist who is willing to at least try to help you manage your issues. Never suffer in silence. Thanks for sharing. It’s important to be heard and have others hear you as well. Hope there are better days ahead.

    2. Cathleen,
      Remind your husband of all that you have been through and how it has changed and is still changing your life and that you are not happy that things are as they are either. Tell him how you feel about yourself having these physical changes as well as emotional changes and remind him that you married for better or for worse. Also ask your pharmacist about products that she/he can suggest to use for the painful sex. Tell your husband a fantasy of yours and have him act it out, a romantic fantasy. Perhaps a candlelit dinner at home and a nice hot bubble bath after. Have him just hold you for the evening and make you feel safe and secure. Ask him to paint your toe nails or give you a massage w/o having to feel as though sex is on his mind. There is nothing worse than being pressured into something that you are not feeling. And when you do get turned on by these caring gestures whisper in his ear to be gentle with you. In time with gentleness he can expand your vagina so that you will be able to once again have a meaningful sex life. I was the same way with painful sex and my boyfriend who is well endowed versus my petite little body had to take his time with me and now we are enjoying ourselves on a steady basis. I too have gained weight and have scars but he does not see that when he looks at me, perhaps your husband doesn’t either. It seems that we women are vain at times and we see what no one else is noticing. You sound like you have a great character and personality so try to let that shine through. Also I have told my boyfriend that when I am having a bad day thats all I am going to tell him and thats my code for don’t mess with me today baby!!! It keeps us from arguing and I tell him to also use that same phrase with me. We need to also be gentle back to them and pamper them from time to time with a back rub or a foot rub, small gestures can really mean a lot. I wish you both the best!

  9. Thank you for this blog. I was diagnosed with stage 1 dcis and small areas of invasive, had lumpectomy and then a revision to get deep, clean margins. Followed with 35 days of radiation. Started Tamoxifen, lasted 2 months, had to stop. Side effects were unbearable. Joint pain, nausea, headaches, hot flashes, nasty vaginal discharge, terrible depression, 20 lb weight gain, vision changes due to dry eyes, insomnia. I felt like I was being poisoned. I had to stop. Oncologist less than understanding.

    I am seeing a nutritionist, working on losing weight, exercising daily, and improving. Almost done with radiation. I am already feeling so, so much better and healthier.

    I will not take tamoxifen or an AI. Tamoxifen is being studied in the UK as a gel form, the research is promising. But for now, I am declining hormone therapy in favor of increased quality of life.

    I hope my cancer doesn’t come back, but if it does, I will deal with it.

    Good luck everyone!

    1. Ebby, Tamoxifen and the AIs can be intolerable for some. Sometimes a person has to make a tough call. It sounds like you are comfortable with your decision and that’s what counts most. Good luck to you, too, and thank you for reading and sharing.

  10. I am right there with all you ladies……I went on Letrozole in 2011after a lumpectomy for a 1.2 cm. tumor right side…..I had 38 Rad treatments….hesitated to go on Letrozole, but after 1 month bit the bullet………for 3 months was ok, and then gradually everything went down hill…..trigger fingers, joint pain, muscle aches, hair thinning, dizzy, balance problems, dry everything…….did this for 3 1/2 years….could not get out of a chair or go up steps without pain…..and had to steady myself after finally getting up…..just going from the bed to the bathroom was a chore………….
    Finally I gave up and told my Onc….I’m going off……she gave me a 1 month vacation which I turned into a 3 months vacation……..I felt immediately better the day after I stopped………….by day 2 I felt even better……..I went off on my own cause I ran out of pills, but when I went to her and told her….I said “I felt good just stopping the pill “the other night”…….then she okayed me not going back for a month………..so then I saidi “I’m sure its in my head cause how could I feel good that fast………….her answer…………….NO, ITS NOT IN YOUR HEAD……..YOU COULD FEEL GOOD THAT FAST…….I was shocked she was that honest with me.
    Well at my next appt. which was 1 month later I told her I had not gone back which I was suppose to do…she said “Ok, go back on an AI, I willgive you a script for Arimidex…..lets see if you can tolerate that better then Letrozole……………..I filled it and let it sit in the drawer for 2 more months…..did not go back to her, but finally started the Arimidex 3 weeks ago…………………I feel like crap….must say the SE’s started much sooner with Arimidex then they did with Letrozole…….pain, dizzy, off balance, and my brush is full of hair…….fluid retention, and again can’t get out of a chair………………….
    I have to go back to her..since they have called me 2 times…and wrote me once……….I did not take the little “white devil” last night…………………..and not sure I will take anymore……I have had it………….Did I mention my age………..I will be 80 on Friday…….I feel like a beat up, achy, old woman, and I never felt like that before…….
    She want to try Faslodex which has to be approved for me, but after reading up on that drug I am not sure I want to take a shot, that puts the “shit” into my system immediately, ……she says woman who can’t tolerate AI’s can be approved for Faslodex since that is for Stage 1V………….I think I’m done….will make an appt this week, and tell her……….Its over……….what good is any life, if you can’t enjoy it………..

    1. Good for you Genevieve. For me quality of life has much more value than longevity. Why would anybody choose longevity filled with pain and discomfort and misery. This is not what life is about. I would rather have 10 good years happy and feeling good than 20 years on AIs feeling miserable.

    2. Genevieve, I’m sorry about all your difficulties and I do understand your frustrations. Each of us must make the decisions we are able to best live with. Good luck at your appointment.

    3. Genevieve, it sounds like you wanted to live life as 80 years young by giving up medically-produced 80 years old. You rock, Sister!

    4. I agree Genevieve – at 80, I wouldn’t do it either. Shoot – I’m 63 and saying no. My quality of life went downhill so fast on Arimidex – once I stopped, I couldn’t imagine going back on it and suffering again.

  11. Still have not made the appt……..but 4 days ago I stopped Arimidex…….I still have remaining SE’s which I guess will go away eventually.
    When I stopped Femara the relief was immediate….the very next day I felt better, and kept feeling better as time went on.
    Arimidex is not as kind……but hopefully I’m getting there.
    I am scared out of my mind that this is a bad decision, but it is just so bad………
    I can even except the joint pain (to a degree),……..but the dizziness, off balance, and foot problems are very hard to tolerate…and on Arimidex my hands are back to aches and pains too……..maybe if I was younger, and didn’t get the “old lady pains”……..this would be easier to tolerate………………but it only compounds, and worsens any ailments an 80 year old gets………..And I am 80 today……Happy Birthday to me……..LOL
    Would never encourage someone to stop their Med, and I only have another year to go, but its tough………………………
    And let me say “who says 5 years is it……..all of a sudden does the “estrogen”, decide to vanish, and on the day you stop your 5 years run………..all is perfect……….who are we kidding here…………….I don’t think they know……….
    Wish i had a crystal ball………..hugs ladies.

  12. I am sitting here in excruciating pain wondering what in the world have I done to myself!! I stopped Femara 83 days ago because I was having my ankle fused (after 2 failed surgeries to stop the pain I opted for the fusion!) i was scared to death to stop it for fear of a recurrence, but getting my bones to heal was the most important thing for the time being. Looking back today I realize the difference on it & off. While off of it I kept thinking I knew I was feeling better, just didn’t realize how much better. My Dr said I could be off it a month. I decided 2 months was more realistic. As I approached my final days of non- weight bearing i decided to go back on Femara. I did so 6 days ago. Today was fine but my ankle started to ache, then throb. I decided to get up to change it’s position & I was stunned!! Every freaking bone & joint just went crazy. I realized this familiar pain from my Femara days (how quickly I forgot!) My ankle is extremely painful & stiff & I’m shivering with the ache of a fever (but no fever.) Now I’m afraid of what it has done to my ankle! Clearly I can’t take this! I can’t even walk yet, no way can I suffer thru this too! I guess I had learned to live with the previous pain. I too always said I felt to be 90 yrs old! My 80 year old mother aches less than me (I’m 47!!) I’ve been tested previously for RA, but it was negative. Not sure why my ankle joint disintegrated & I have trigger finger in two fingers – my thumb is stuck straight. Can’t get a steroid shot because it slows bone growth! Well, this Femara is definitely doing something to my bones!!! Sorry- I just had to vent. The pain is just like the pain after a neupogen shot! Unreal! Wondering if anyone else had stronger side effects after taking a break?

    1. Bridget. ..the AIs cause irreversible osteoporosis. Your bones are brittle as another side effect of the drugs. This will most certainly cause a delay in the healing of your ankle.

      1. Michele, I’ve been told the effects of AIs can sometimes be reversed at least somewhat after going off of them. And you’re probably right about that delayed healing.

        1. Bridget. .the aches and pains will stop when you come off the drugs. ..the osteoporosis occurs in the first two years…there are other medications you can take with the AI s to help prevent or at least slow the osteoporosis down but it is not reversable. You should talk to your doctor about those other medications

          1. Michele,

            It (osteoporosis) is slightly reversible. I’m a 18 year health care practitioner – so I’m speaking medically, not as a cancer survivor. With bisphosphonate medications like alendronate (Fosamax) bone density scans can improve – i.e. the osteoporosis gets better.

          2. With all due respect these drugs do not reverse osteoporosis. I did my research. Fosamax cause a shrinkage of the jaw bone as well. There are additional warnings that if you have received chemo..steroids or radiation you should not take Fosamax. There are huge controversies on this drug and its side effects. There is no reverse osteoporosis or vaginal atrophy…or many of the other ai side effects. As always I encourage every woman to be her own advocate. Educate yourself. Do your research. Most important don’t be bullied by your doctor’s. Make informed decisions.

          3. Michele,

            I’m not trying to fight with you but I’m saying as a practitioner – that actually treats patients and prescribes these drugs – they do indeed reverse some bone loss. I agree to get your facts and make educated decisions but I went to school for a very long time to navigate the very complicated world that is medicine.

          4. I am an extemely intelligent woman. You don’t need to be a practioner to do resrarch. As a practioner you should already be aware that Merck has been called before the FDA on several occasions for falsely advertising the benefits of Fosamax. Researchers have now found that this drug actually causes bones to weaken and crumble with an additional side-effect of Osteonecrosis of the jaw bone among others. See http://www.drugwatch com/Fosamax.

    2. Bridget, I am sorry about all your pain. I did not have stronger side effects after taking a break. I switched drugs after taking a break and that helped me. Have you tried one of the other AIs? Just a thought. And feel free to vent any time. We are here to listen.

  13. I need to decide what to do about side effects….I was on arimidex for about a year…developed trigger finger plus all the other usual side effects of bone pain, etc…..my oncologist suggested trying tamoxifin which I did for a few doses but stopped it because of terrible side effects…then she said take exemestane……..I found out it cost a few hundred dollars with my insurance so I decided to wait and see onc. again and discuss it…why waste money if side effects are the same……I heard this one also cause trigger fingers…..so now I am waiting to see onc…….I told my primary about it…she went on vacation so I said I would take the arimdix every 4th day until she gets back…I still was better of with arimidex generic……so now I am waiting……my oncodxtest was 2 (low score) had lumpectamy , stage 1………information before and after surgery was difficult to navigate and am still not clear on many issues……renee ^.^ which organization should I call and ask about side effects and trigger fingers? thanks……renee

    1. Renee, You could do a little research on breastcancer.org. If I remember right, Breast Cancer Action has a pretty extensive article on side effects of AIs. Only you can make these decisions. I know it’s tough sometimes to balance the risk, benefits and side effect factors. Good luck with everything. Keep us posted.

      1. thank you for your reply….still not sure what to do but will see oncologist next week…..thanks…..renee ^.^

    1. Jenelle, What a nice thing for you to say. I’m glad you find them helpful. Thanks for sharing the link for Renee and others. Take care.

  14. I was unfortununate to pick up a mosquito spread virus called Chikungunya last year in Barbados. I have suffered 6,7 months of excruciating joint pain because of the chronic effects of the virus and during this time found out I had Breast Cancer (funnily enough there is a link between Chikungunya and cancer too). Because I’m through the menopause the Oncologist wanted to put me on Anastrizole. I told her about the Chikungunya and joint pain and she deferred putting me on it for a couple of months but then despite me suggesting tamoxifen instead told me to try it. Initially I was happy as I didn’t seem to be getting side effects, but approx 6 weeks later, suddenly bang, I was literally crippled with pain and couldn’t walk because of pain in my ankles, knees, lower back, hip and leg. Also I had contractions in both legs and couldn’t get to sleep, not helped by hot flushes either. My Doctor put me back on pain killers and I was told to stop taking anastozole, but 2 weeks on I’m still in crippling pain. They have given me tamoxifen now which I have to wait a while before taking. Can anyone tell me if joint pain gets better on tamoxifen and how long after stopping Anastrozole does the pain stop. I don’t think I should have been put on Anastrozole due to the virus anyway so quite unhappy about the situation.

    1. Sue, I’m sorry to read about the virus you contracted, your breast cancer diagnosis and now your joint pain. Unfortunately, there are no clear answers regarding the tamoxifen side effects. Everyone is different, so you’ll probably have to wait and see if things improve for you. I hope they do. Thank you for sharing and good luck with everything.

    2. I took Tamoxifen for five years and had pretty bad tendonitis. I took A LOT of ibuprophen. It did get better a month or two after I stopped.

      Now, surgically menopausal due to being Stage IV, I have been on Arimidex for a year. Good news: It’s working. Bad news: Weight gain, hot flashes and joint pain. Saw my onc last week and he said, “How do we know it is the Arimidex causing the pain? It didn’t start until after you were on it for 6+ months. Take a two week break and see if the pain goes away.” I’m 7 days into that two weeks and so far the pain is not better. I found this blog searching to find out how long it takes to feel better after getting off of Arimidex. Does anyone know?

  15. Nancy, been up all night (again) searching, researching, crying for answers to, do I keep taking this horrible Inhibitor, and have no quality of life, ie-deep bone ache, migraines, no sleep for 2-3 days @ a time, total exhaustion doing the smallest thing, or doing nothing, the whole Intolerable side effects thing..and trying to find out if there really IS any scientific evidence that taking this stuff for a minimum of 5 years, ( only 6 months for me,,so far, none today,) then I found your site and started reading. I (think!) my anxiety is lessening, i am sooo glad I found your site, I truely believe that people are put in our lives for a reason,,, You, and everyone here, maybe even me,,, for someone else. anyway, i thank you from the bottom of my heart, for you writing HONEST feelings, not hiding them like we seem to be supposed to,, and sorry if this doesnt make much sence, I still say I have some “Chemo-brain fog”,,

    1. Tina
      There isn’t any hard and fast evidence as to the benefits of these drugs because they are too new so long term studies are not complete. The truth is nobody knows if these drugs will work but they sure hell know the side effects…many of which are irreversible. . We each have to make choice for ourselves ..that we can live with when it comes to taking these drugs. For me personally i found the side effects to be too horrific and their ultimate destruction of quality of life to be unacceptable. I refused to take any of these drugs. My quality of life is very important to me. If my choice means i get 10 years of quality verses 15 to 20 miserable years from side effects. Ill take my ten every day.

      1. I am having the same problem…..I tried anastrozole, tamoxifin, and now estremene…….all have terrible side effets and my quality of life is not good either…nightime is bone pain bigtime and hard to sleep…..there must be other ways to reduce estrogen….I am thinking just drop weight as estrogen stores in fat cells…if that doest work I will be off to see the wizard of oz……besides, the doctors dont have time to tell you much about anything ….^.^

        1. You have to do your own homework and don’t let your Doctors bully you. This is your health care you have to be your own advocate so you make the choices that are best for you. Make your doctor answer your questions. Don’t walk away from an appointment feeling unheard and frustrated. If this was your child’s healthcate you wouldn’t take any crap from any doctor. I know its hard to take a stand when you don’t feel well but you have to.

          1. thanks for the comment…yes, these doctors are bullying me…they dont explain anything…they are on the computer and dont even look at you…..a study about doctors said 6 percent of doctors dont like their work and are in it for other reasons like money, fame, etc….its hard to find a dr. who likes what he is doing…I only met one or 2 in my whole 74 years of going to doctors……the nurses are just as bad……I am doing my own homework now……I am looking for a place that does that new 3 d mammogram (tomosynthesis)…..where I am going now doesnt have it yet and I asked if I should do it somewhere else and come back with the results…they didnt like that idea…nurse said just do it here cause its hard to get and compare all the information…….^.^

          2. Renee, I’m sorry you are having a difficult time with your healthcare team. If you do feel bullied and not listened to, perhaps it is time to consider going elsewhere.

          3. I too was very frustrated with not getting the answers that I needed and in making a choice of my own about the aromatose inhibitors. I finally self advocated and decided that they were highly intolerable for me and I refused to take them as I prefered quailty of life to quantity of life. I am also a small person, I weigh 114 lbs and questioned taking the same dosage as a person twice my size and was told perhaps they should be taking a higher dose which to me seemed like a ridiculous answer. I have not taken the aromatose inhibitors and have been 3 years in October in remission and I am glad that I refused them!!! At first they had me very scared and frustrated over my decision but not anymore. I do not want to end up crippled for the rest of my life!!! Its bad enough that being on the meds the 3 short months that I was I had to have 2 surgeries for trigger fingers. Don’t let them bully you into anything as I believe they get paid to push these meds in the first place!!!

          4. Trigger finger is when your fingers lock up and when you try to bend your finger straight it snaps and hurts. You can look it up online. I was told by women that they had to have total knee and hip replacements from taking the Armidex and Aromasine type meds. See those meds lower your estrogen level drastically so that if there is any HER2 positive breast cancer left behind after your treatments it is not fed by the estrogen. We need some estrogen for our bones and so with these meds drastically lowering the estrogen it affects the bones so you also need to think about extra calcium as well as having bone scans done. I have already gone through menopause anyway and was told before my cancer that my estrogen level had plummeted and since my breast cancer was Stage 2 even though it did spread to my lymph nodes I decided not to take the meds especially as I figured the chemo and radiation most likley killed any cancer cells that were left. Tamoxifen on the other hand is usaully taken by women who have not gone through menopause and can cause other problems such as female cancers of I believe the uterus or ovaries. It caused me to begin bleeding so I quit that as well and that was my last ditch effort at taking something tolerable to keep my estrogen level low. You have to be careful about what meds and foods that you eat or drink that contain estrogen as well and that is what I do. I stay away from soy and watch my red meat intake. We can’t worry for the rest of our lives but live what live we have got is my motto. I was told by my surgeon that this meds showed significant results in keeping the cancer from returning but there were never any studies done on survival rates of women who refused these meds. Apparently they do not do studies on women who refuse the meds once the original studies show that the meds work for what they want them to do. But they are not seriously taking the side effects into account when it comes to quality of life either!!! I have researched my butt off and have found also that Tamoxifen is now being used for lung cancer as well but in extreme cases where little else can be done. Had my breast cancer been more invasive and I had needed a mastectomy perhaps I would have forced myself to endure the meds. I don’t think they really know when it comes down to it as I was also told that if I didn’t take the meds and my cancer came back that it would come back in an organ that would be inoperable and it would kill me which to me doesn’t make sense in the perspective of lowering my estrogen level in the first place to prevent breast cancer from returning as cancer in other organs are not fed by estrogen to begin with. I guess they mean that if the breast cancer comes back and spreads to the liver, brain, bone, etc…. I also believe that my gyno putting me on hormone replacement therapy is what caused my breast cancer to begin with which really makes me leery to take any other hormone meds at all.

          5. Oh geez…thank you for the info. I have this weird thing happening with my thumb and first two fingers on my left hand. They shake uncontrollably, and I was thinking maybe it was a form of Parkinsons. Maybe this is along the same lines?

          6. I feel so much better about my decision to refuse AIs knowing that others have chosen quality of life over AIs as i have.

          7. I took the extrementene for 7 days per oncologist advice……8th day I felt funny so I decided to skip that day….9the day agains so skipped….I started getting side effect during the night so I called the dr.s office in the morning and told them I stopped…..pain ans side effects were more than I could bear and I was almost off to the ER…..the nurse gave the dr.message and that was the last I heard of them……this pill is very expensive also…I wasted that money and would have rather give it to a dog charity…….I tried 3 pills so far…..not sure what to do next put I have appointment with my primary dr. and will ask him whats next………at this point I feel so much better on nothing that I might just take nothing…I was stage 1 with er estrogen positive…….I am watching my diet and walking more…this may help alittle…..I will wait and see…relief for a few weeks will get me some time to think what to do next……now I can understand what cancer patients feeland am not surprised they want to end it all…I am surprised at the lack of help from cancer center and cancer nurses……its a big business ^.^

      2. Michele, I think there is evidence to support the efficacy of these drugs. Although you’re right, they are relatively new. Well, tamoxifen has been around for a while I guess. Each person needs to carefully consider the benefit vs risk/side effects and make the best choice for her. Thank you for sharing about yours.

      3. Michelle, I stopped the pills 6 or 7 days ago. After feeling worse and worse every day, then talking to my primary Dr about them and getting poo poo-ed, all he did was ask me if I wanted to talk with the hospital’s psychologist, I told him :No, that wont help stop or control the pain, or give me my energy back, it would be a waste of my gas”, Its like everyone says, I am scared to take them, and scared not to, but I NEED/WANT some quality to my Life. to me, laying on the couch, getting up and walking a short distance, doing what housework I can, then flopping back on the couch again totally exhausted, isnt a whole bunch of quality. I know they know the side effects, they just never mentioned them. I research almost every day, then I read posts, What side effects are coming up as permanant? Now THAT really is scary! Wasnt the toxic chemicals I put in my veins from Chemo enough? Dont get me wrong, I am ever so grateful to be cancer free, I just pray to God that I , and everyone here, will STAY that way!

    2. Tina, I’m glad you found my site too. I’m sorry you are dealing with such awful side effects. I do not ever suggest to anyone what to do about these medications, but I always tell others to never suffer in silence. As with any medication, discuss things thoroughly with you doctor and do not allow your concerns to be dismissed. And your comment made perfect sense. Thank you for reading and sharing. Good luck with things.

  16. So glad to have found these posts. I’ve been on Letrozole for five days and already have extreme joint pain, hair loss and flu-like symptoms. I was told an AI would add 4% to my chances of survival at 10 years. I am already questioning whether it is worth it.

    1. Hi MF, You were told an AL would add 4% to your survival at 10 years? I was told by my Oncologist’s Nurse practioner that it would give me a 76% more chance of the cancer never coming back! What are we to believe? Or, do they even know? It confuses me terribly, because, ok, I had 3 cancerous tumors(one tiny) stage 1 in my Right breast only, but I told my surgeon to take them both off, Im not going thru this twice! so, a double mastectomy, 16 nodes taken from right side, all neg, except one teeny weeny (surgeon’s words) spot so small he couldnt see it under his microscope, & he said he almost always can. He said to me, and my parents/family in waiting room, that he was very very happy with the surgery, he was sure he got it all. Ok, so why Chemo, i asked, they said thats just hospital policy(said oncologist who doesnt speak to me) so, I go 4 months of Chemo, Plus Neulasta shot the next day, they said thats to get any stray, hiding cells the surgery missed (dont they trust him?) did that,,, THEN, oncologist says at my last chemo, after nurses brought me a cake and flowers, congratulation me for finishing all chemo sessions, springs it on me THEN, that “Oh no, youre not done, Tina,now you are going to have 3 months of radiation”. HUH? Why? To get any stray, hiding cells the surgery and chemo missed. Dang! I did research for weeks! Went and told her I was refusing the radiation. She was soooo ugly about that! Now, I am wondering, how can I protect myself from Lymphedema, as Im not getting ANY straight foreward answers in Oncology, I am getting way depressed, oh by the way, i flushed my ALs down the toilet and feeling better, not great yet, but its only days, but defnitely better. I wont tell anybody to do the same thing, as it HAS to be a very personal and individual decision, God Bless to all my sisters!! <3

      1. Hi Tina. There are calculators online where you can get an estimate of how many years you might add to your life through chemo and AIs. My onc said my survival at 10 years was 58% with surgery, 88% with rads on top of that, 92% with added chemo and 96% with added AIs. I didn’t have chemo in the end due to allergies. Your oncologist should be able to give you the figures appropriate for your tumour type.

  17. This site could not have been found at a better time. I have been beating myself up about my possible and most likely decision to give up hormone blockers. The side effects have been to the degree that they impact on my quality of life and me living and feeling like a whole person. The constant pain, memory loss and debilitating fatigue are impacting on my relationship with my husband and my ability to be a loving and involved mother with my beautiful children. I’m not living, I’m just existing and that is killing my spirit and joy of life. I want to live for the moments and feel good and well. It will be with nervousness and worry but I’ve been off these before and I felt back to myself and it felt good. Its not an easy decision and some would not agree or could not do it but I need ME back. Thank you for this blog nancy.

  18. Thank you so much for this blog, Nancy..I was recently diagnosed with stage 2 lobular iinvasive carcinoma. I had a lumpectomy almost 4 weeks ago. My nodes are clear..As far as I know, I will be getting radiation.. I have my first appointment with the radiologist this week..I am still waiting for the results of the oncotype DX to determine if I would benefit from chemo…The oncologist gave me material to read on tamoxifin and Arimidex..I’ve done a lotof researching on these and the others not mentioned..I have decided not to take any…I’ve never been good with pills ever and I don’t believe I will tolerate them any better than anyone else on these. I will be changing my diet…been doing research..and exercise..which I love walking! Thank you so much!

    1. Diane, You could always try the drug and see what happens, but of course, the decision is yours. Thank you for reading and sharing about your intentions. I’m still on aromasin. Hanging in there.

  19. It was great to find your site Nancy, it’s nice to know that it’s not all in my head. When my oncologist first put me on Letrozole on June 1st this year she said most of her patients have little to no side effects. The first two weeks I was nauseous a lot, then the joint pain set in my knees, ankles, and feet making it hard to get up and walk. I also had insomnia, fatigue, dizziness, hair thinning, loss of libido and vaginal dryness. A month in I woke up one night to my right index finger being excruciatingly painful, within a day or two the pain wasn’t as bad but I could barely use my thumb, index, and middle fingers on my right hand. At the two month point I had an appt with my oncologist, that very morning both my hands were so bad that it took me a while before I could even open the front door to let the dogs out. The pain at times went up my arm, and my shoulder and neck just ached. My onc took me off letrozole that day, I’ve had a month off but go to see her in two days and she plans on starting me on one of the other AI’s. I plan on trying one more and see what happens, but she told me that if I couldn’t tolerate any of the 3 AI’s that she would put me on tamoxifen. Well I’m willing to try one more but I’m not sure about trying all three AI’s and then tamoxifen. I agree with a lot of others – quality over quantity. After one month off the medicine it still hurts to walk, my feet are really bad in the morning but pretty much are achey all day and it still takes me a couple hours each morning to be able to bend the fingers on my right hand. I’ve never had a problem with humidity but now even off the medicine if it’s humid my fingers swell right up and I can’t bend them. As far as percentages my onc told me the letrozole would reduce my chance of a recurrence by 50%?? I told my husband that I feel like all I do is whine now. I’m 51 and feel like I’m 90. Thanks for the article and everyone’s comments – best to all of you.

    1. Hi, I was on anastrozole and was taken off it due to unbearable joint pain and put on tamoxifen. The pain hasn’t gone away and now I’m getting problems with tamoxifen as I’m now covered in bruises. Don’t know what to do and nor do my doctors. Unfortunately I have Chikungunya too which causes similar problems. I just feel exhausted with it all. I’m similar age to you and was fit before all this. Good luck to you anyway.

    2. Kathy, So glad you found your way here. Welcome. I know these drugs are challenging for many of us to tolerate. I’m still on exemestane and plan to stick with it, but it’s hard sometimes, that’s for sure. Thank you for sharing about how you’re doing. That’s not whining. Not at all.

      1. its so hard to decide about taking these drugs since the side effects are so terrible…..I tried my best but the extremence(I am guessing spelling) was too much for me…I stopped it after 1 week with severe headaches and strange head feelings……I did better on anastrozole but got trigger fingers…..I wonder if I would go back on it and live with the finger problem…….I have been off everything since may 14…..have to wait to see oncologist since I couldnt see her sooner…..I will see her this thursday…her nurse already told me I should start again…..I was stage 1 HERS 2 positive and oncotest was 2 ………any suggestions? taking any of these pills makes me sick in the head…..I wonder if its better to take a chance and live a few years in my right mind rather than take 5 years plus of daily problems…….everything hurts on these pills plus I cant think as well and I get very depressed and want to sleep all day and forget everything…..thanks for listening…renee ^.^

        1. Renee

          We each have an acceptable level of what we call..quality of life. For me personally i would rather have 10 good years than the remainder of my life in pain with numerous issues…being alive but in pain …to me..is not quality of life. Only you can decide how to measure your own quality of life. Please don’t let a doctor determine what your acceptable quality if life is. This is a difficult individual decision. I wish you the very best. Michele

        2. I chose not to take any of the aromatose inhibitors and I have been in remission 3 years now. I don’t believe that you need them if your cancer was a low stage. Mine was a stage 2 but a grade 3, the higher the grade the quicker your cancer will spread. I am happy that I am not on those bone killer pills anymore. Don’t feel guilty or worried if you decide not to take them. I was very nervous to go against my doctor but now I am glad that I refused their protocol treatment!

  20. I saw my oncologist two weeks ago after being off letrozole for 5 weeks, it happened to be a bad day for my hands. She was surprised how swollen my right hand and fingers were and that I couldn’t bend my fingers. She decided not to start me on another AI until I see a rheumatologist, she wants me tested for Rheumatoid Arthritis. So now I’m waiting to hear from them with an appointment but meanwhile I’m off the meds, yea!

    1. AI’s drastically lower your estrogen level, we need estrogen for our bones. The AI’s caused me to have bad trigger fingers which I had to have operated on. I have talked to women that have had to have total knee and hip replacements due to those meds. I am 3 years in remission w/o being on those pills!!!

    2. that sounds like what I had…..I was on anastrolozle for 1 and 1/2 years…my fingers started locking at first…had shot for fingers which helped for awhile……then my oncologist said that trigger fingers were probably from the drug so she switched me to tamoxifn……couldnt tolerate that pill…..then she put me on extremese and couldnt tolerate that one either…….now I am going to see oncologist this week to discuss taking any of these pills…she wants me to take one of them….I am going to ask her about Evista…..my oncotest was 2 with Hers high for estroge/progesteron and I was stage 1………..I still am not sure what to do but I am thinking no on these estrogen inhibitors…….If I take the pill I will end up with bone pain, foggy mind, and all sorts of other pain issues….I tried to go shopping with my sister for a short time today which turned out to be a disaster……pain all over besides fingers,,,,,,,,I just wanted to die today…….got depressed and more…….thinking about options over and over…….if I liev longer I will end up with bone pain, in a wheele chair and then a nursing home on a feeding tube…….better go earlier than all of this, I think..renee

  21. I was diagnosed with stage 1a low grade (10 mm) IDC breast cancer in June 2015; sentinel node neg; additional 6 nodes neg; ER+/PR+/HER2neg/OncotypeDX 8. Had a lumpectomy and hypofractionized 16 dose radiation therapy. I have declined aromatase inhibitor therapy. I am a 66 years old retired nurse in very good health otherwise but do already have osteopenia. I did a lot of research after my diagnosis and had a long discussion with my oncologist regarding this medication and it really only decreases my risk of reoccurrence by about 5%. The list of side effects scare me more than the risk of reoccurrence!! My oncologist told me she is not even sure if the 5% is accurate because they don’t know how many patients actually take the medication. I believe in quality of life and just chose not to go there. I may regret it one day but will live with my decision. I eat an organic “anti-cancer” diet and hope this will offset my decision not to take the aromatase inhibitor.

    1. I’m so pleased that I came across this blog. I too have breast cancer stage 1,IDC. Had Lumpectomy with LN removed and negative. Finished radiation. I just started Anastrozole my 4th day… I already have joint pain; knee and my back. Left wrist is swollen. I already have osteoporosis. I have told my oncologist that I’m afraid to take Anastrozole because of Osteoporosis. I was told to give it try. Today will be the last day that I would take it. I too like my quality of life to quantity of life. Thanks ladies this made me more sure the decision to stop this medicine before I will have the full dreadful S/E’s.

      1. I also decided to stop the same drug but rethinking it again and rereading about if it comes back due to the fact that estrogen stores in fat tissue and I am on the fat side so I am not sure again……the problem is that they should start on a lower dose until the body gets used to it or why not just take a lower dose in the first place……I think more information is needed …..why do we have to search all of this…not one of the many cancer doctors I went to gave me any good information….they just say take it…..besides all of the scientific information we are not getting in simple terms breast cancer is big business……..I need to get more information before I decide …..^.^

      2. Isn’t it awful that we have to “pick our poison”?? I stressed more about the thought of the taking the aromatase inhibitor than actually having breast cancer. I never saw our patients questioning the doctors and I wanted to say “why not – it’s your life!” I actually did not take my last dose of radiation. My next to last radiation appt I was laying on the table and they are remarking some of the guideline marks on my breast and the marker smell was awful. I casually asked if that was a Sharpie they were using and they said “no, it’s an automotive touch up paint marker.” I said why don’t you have stickers with lines imbedded in them and they laughed and said “oh, you should invent something like that.” It took all I could do to stay on that table and complete that day’s treatment. I immediately went home and confirmed my worst fears of all the horrible chemicals that were in that paint marker on the internet. I was furious because they were radiating that crap right into my skin. All I could think was “here I am having radiation so I won’t have a reoccurrence and they are putting toxic chemicals on my skin and then radiating it into my skin.” That pretty much did it for me. I pulled all the sticker markers off and scrubbed all the marks off with coconut oil soap. I broke out in a horrible rash within a few days but it has cleared up with coconut oil. I choose to do what I feel is right for me and I will trust my instincts (even if they are wrong) but I will not give up my right to choose ever again.

    2. This is almost exactly my story too. I’ve done my research and made my decision. There have been enough changes to my health post-cancer.

  22. I read about fat stores too and how women who exercise at least 3 times a week are 30% less likely to have a reoccurrence. I am less than 10 pounds overweight and am now exercising. We eat very healthy and stay away from all sugar (it feeds cancer cells). I’m trying to make good decisions because I don’t believe breast cancer has a one size fits all treatment plan.

  23. You ladies are raising some excellent points and food for thought! I will be completing my radiation (after lumpectomy) in mid-October and am supposed to start taking an AI. I have an absolute horror of what some of you are describing, most especially the potential for bone loss! I have a form of arthritis (psoriatic arthritis) that has damaged my hands already (I refused to take the pills the rheumies wanted me to take; the possible side effects sounded way worse than what I was experiencing with the PA — basically my hands are weird-looking at this point (crooked, some swollen joints, etc.) but I can do whatever I want with them, pretty much. I can also walk 2-3 miles 4 or 5x a week or do other exercise; play golf; and I feel pretty darn good. I should start taking an AI and throw this all away???? (Does anyone know of any studies about what percentage of people have side effects that are so debilitating?) Thank you.

    1. So sorry you are in this boat too. I found in my nursing career that people only complain about the bad (side effects) and not the good (no side effects). I was glad my oncologist told me she is not sure how many women actually take the medication because that would change the statistics. I certainly took all of this into consideration when weighing my options. I am meeting with my oncologist again in December and plan to discuss it with her more in-depth at that time. She is pretty straight forward and I’m hoping she can give me definitive studies to evaluate once again because I didn’t have much information at our first meeting before I started radiation.

  24. Well I might have answered my own question sort of. Found these references about people having side effects on the Susan G. Komen website:

    Amir E, Seruga B, Niraula S, Carlsson L, Ocaña A. Toxicity of adjuvant endocrine therapy in postmenopausal breast cancer patients: a systematic review and meta-analysis. J Natl Cancer Inst. 103(17):1299-309, 2011.

    Crew KD, Greenlee H, Capodice J, et al. Prevalence of joint symptoms in postmenopausal women taking aromatase inhibitors for early-stage breast cancer. J Clin Oncol. 25(25):3877-83, 2007.

    Dent SF, Gaspo R, Kissner M, Pritchard KI. Aromatase inhibitor therapy: toxicities and management strategies in the treatment of postmenopausal women with hormone-sensitive early breast cancer. Breast Cancer Res Treat. 126(2):295-310, 2011.

    Not sure how simple it will be to get hold of these refs, of course …

  25. I stopped my Anastrozole after taking it for roughly four days because I was having severe left side pain in my abdomen. I actually thought of stopping it after the first day because Of severe indigestion, i felt like I was choking. Joint pain is now subsiding. I do exercise and maybe that helps. The discomfort in my stomach still there…. I was wondering if this is a common S/E also did anyone experienced this abdominal pain?

  26. here is my problem…..we are told to make our own decisions but how many of us went to medical or pharmacy school to know what is best for us??????….some of us have to research many articles before we can begin to understand what these drugs are and what they do to us…..for 2 years I was told I had stage 1 and I am fine but take anastrozole for 5 years…that was it……nobody explained why and what the onco test means….2 years I am reading my own papers and notice I am a 2 on the oncotest and a 4 for reourrance….no doctor or nurse told me what they means…and now I find I am estrogen postive 3 +…….how can I decide what to do if I dont get any explanations…..I told that to the oncologist…nobody told me!!!!!….I think cancer is big business and they dont have time to explain anything…..although I didnt see a line of people waiting in the office…….I got fed up last month with the lack of information so I took it upon myself to get a 3 d mammogram elsewhere……I was told I have something specious in the other breast and would need mri, biopsy, and other tests…..I told them hold everything, let me get a second opinion after they failed the biopsy test……..they said going elsewhere would be difficult as all my records were with them and they are getting the new 3d mammogram soon……..I went to my primary dr. for authorization for 3 d mammogram and results were all good…..they said no need for further studies for 1 year…went to oncologist and they didnt like the fact I went elsewhere for 3 d……this place is famous….I dont want to make trouble but something isnt right over there……I saved the medicare about 5 thousand dollars worth for Mri, biopsies, etc……..now how am I supposed to decide about the anastrozle…..I still dont have all the facts yet…I called many cancer questions lines and they all say check with your doctor…..I checked with my inside doctor which is mysellf……..who wants to live an extra year with bone loss , hip fractures, falls, etc and end up in a wheelchair in a nursing home who will sedate you to keep your quiet……I think I would rather live a few more years in peace…..the side effects of these pills are bad and so is the end result in a wheele chaifr….so I think I will not take the poison pill…….^.^

  27. This blog was the best thing that could happen to me! I have been on anastrozole for 7 years, before that Tamoxefin for 5 years. My oncologist told me to stop the anastrozole. My surgeon said no research proves whether to stop it or not. I had stage 3C and made it. I went to a doctor yesterday who told me I could stop it because I have been cancer free for 11. No one knows what to do. I think I would feel better also, but fear the unknown. Reading all these comments has really helped and I thank you for posting them.

  28. So thankful to have found this blog! Curious … my oncologist suggested that it is not a good idea to use the internet for research on Rx and side effects. I took Arimidex/Anastrozole for 13 months before throwing in the towel b/c of the miserable side effects. Oncologist recommended that I try Tamoxifen. I must have carried that Rx around for 3 months before getting it filled. After about 4 months of Tamoxifen, I chose quality of life on quantity, but always worry that I may have made a terrible decision in doing so. Constantly second guessing my decision. Bone density study recently showed osteopenia, which was caused by the Arimidex. The previous bone scan from two years ago was great, so unfortunately this condition was caused by the medication. The oncologist said that if I had not already stopped the Arimidex, he would have taken me off of it. Thanks again for this blog!

  29. I stopped taking AIs 3 months ago after trying both Arimidex and Aromasin. Joint pain improved slightly within the first week, but no continuing improvement. I can’t find any information on side effects that last long term or the likelihood they will eventually go away. The consensus seems to be that they symptoms should be gone in a month. Oncologist insists the meds do not cause any damage and makes me feel like I am a hypochondriac.
    Anyone else have long term pain after going off the meds?

    1. Im a straight up. .tell it like it is kind of woman. ..your oncologist is wrong. The long term and permanent effects from these drugs is widely known. ..while some if your joint pain may subside. .the osteoporosis is not reversible. ..vaginal atrophy is not reversible. I get irrate over the lack of information doctors provide. Sometimes i think we are all just part of a massive experiment. The truth is there are some long term..some short term and some permanent effects. Everyone responds differently. Please don’t let a doctor convince you that your discomfort is in your head. We hear this all the time. I cannot encourage you more to please be your own advocate.

    2. I was on letrozole for two months, I have been off since August 1st. The joint pain was still so bad after being off the med for 5 weeks that my onc sent me to a rheumatologist to rule out rheumatoid arthritis, I had no joint pain at all before starting the AI. The rheumatologist told me that she is seeing lots of women on AI’s because of the joint pain, she said it can take a whole 6 months to get out of your system (and I was only on it for 8 weeks). She’s pretty sure that I don’t have RA but did tell me that I definitely have osteoarthritis, again I had no symptoms before the AI. I still wake up every morning with my thumb, index and middle finger on my right hand stiff and swollen, and the joints on my fingers ache so bad sometimes that it will wake me up. The joint pain has lessened but it has NOT gone away. I see my oncologist in two days and I know she is going to want me to start another AI because I don’t have RA, I’m pretty sure I’m going to pass. I’m 52 and my joints feel like they’re 92. I am definitely waiting a bit if I decide to give it another go, I am scheduled to have breast reconstruction and DIEP flap surgery next week and I’m not going through surgery and dealing with a new med at the same time.

      1. Hi Ladies,

        Here is my experience with AI’s.

        Had Hysterectomy with ovaries removed then put onto Arimidex. I wasthen full stream ahead into menopause, power surges (hot flushes an understatement), alway tired, aching joints and aching bones. Getting out of bed each day is horrid with stiffness, sore hands and feet. After 5 months I was put onto Femara, I must say I have had a slight improvement with this drug compared to the Arimidex.

        Onco says there are no side effects, mmm?? wonder why they feel the need to say that. Have stuck with it for 18 months. Had a drug free period so that I could enjoy a holiday to Fiji, stopped 10 days prior, it took at least 2 weeks to feel better and actually had such a good holiday without the side effects. When I started back Femara, it took only a few days for the side effects to kick back in.

        I have tried every supplement, but they really do not make much difference. The fish oil is great for my skin as the hot flushes were drying it out. I am about to start Vitamin E, which is meant to be good for hot flushes.

        Anyway, I will stick with this horrid drug for as long as told, and keep in mind that those that have more severe side effects have the better outcome.

        Cheers Vivxx

        1. I was taken aback by your statement that those with the worst side effects have the best outcome. There is no documentation to support that statement. These drugs are too new and no long term studies have been completed to know this. If the same doctor that told you that Ais have no side effects…which is a false statement as well told you the more you suffer the better your outcome. …then i would see a new doctor.

          1. Michele – My oncologist told me that if you don’t take the AI’s within 6 months of surgery, there is no point starting them because it’s too late! WTH? Seriously? She also told me that AI’s will cure my cancer – again – WTH? They have no idea because the only labs they do to see if the AI’s are doing anything is lab work to see what harm is being done to your body and what other drug they need to give you to fix that. There is not one single test to see if the AI’s even work. They don’t even do hormone testing to see where your levels are. I left that practice and am looking for someone with a better grip on this.

          2. Gaye…Ais. cure cancer..thats a new one. My first oncologist tried intimidation tactics with me….i don’t back down easily. Im being treated at Sloan Kettering in NYC….even they don’t have the answers. I refuse to have my quality of life diminished by drugs that have not been thoroughly tested. Could i be making a mistake. .possibly. …but its mine to make and so far i am 2 years clean and healthy and feel awesome.

    3. Carol – YES! I have been off the Arimidex for nearly three months now – could not deal with the side effects. Yet, I still feel so many of them even now. I would not say oncologists “lie” but they use arguments that don’t quite border on truth when they talk about side effects. Their scare tactics are pretty commendable and forceful yet not necessarily truthful. I still have hand numbing at night with fire burning pain. I still have ankle pain that I never had before. And talk about a vagina that could be King Tut’s Tomb – well, he and Dracula may as well move on in because mine is a dusty tomb. NOTHING will change that for me. The depression over all of this is terrible and the oncologist’s answer is Effexor – seriously? Numb my brain so I don’t think about it? No!

  30. Als for a year and finally feel alright today, good day-bad day. But you must be
    serious taking care of yourself and the following. Try it, it might work for you.
    Exercise everyday, keep moving.
    Use Testosterone cream for libido.
    Vagifem for dryness

  31. I just have read all these interesting comments on AI’s, and wanted to share some thoughts. I finished my 5 years Sept 22. WooHoo! Done! Done, but now a little scared not to have that added protection, and wondering if I should go for another 5 years. A study on that is being done, but not yet completed. I was diagnosed at age 67, stage 1, grade1, 8mm, IDC, no lymph node involvement. Lumpectomy, radiation, then 5 years anastrozole.

    I think I was one of the lucky ones with minimal side effects. Absolutely, terrible vaginal dryness and atrophy, but I’m convinced anastrozole didn’t cause that, but did make it worse. Already in menopause, I was already experiencing it. In the month I’ve been finished I believe I see some improvement in that department. But honestly I think that was my only side effect, so I wanted to give another view for those who may just starting the drug or trying to decide whether to take it. Intolerable side effects aren’t a given. Some of us have been lucky, and tolerate it pretty well.

    Now…I did have a hip replacement a year ago, but would I have had that anyway? There is absolutely no way of knowing. My orthopedist was adamant it was not related to anastrozole, and I’m at an age where this can very well happen anyway. Who knows. I’ve been a workout freak all my life, running 6miles/day 6 days a week until 10 years ago, and substituted walking for running when I quit running. There is no other joint pain. My Mom had an arthritic hip too and I’m inclined to feel mine was the luck of the gene pool.

    Someplace in breastcancer.org I came across a link to an online calculator that shows how much AI’s, chemo, and radiation can improve your survival chances, individually and together. I’ve just tried to find it now for those who would like to run their own numbers, but came up empty handed. In my case, as I recall, AI’s decreased my chance of recurrence by 1 or 2%, pretty minimal, but that diagnosis had just freaked me out and I was determined to do anything I could to lessen the chances of ever going through that again. I believe I’m one of the lucky ones with few side effects, and I might not have stuck with it the 5 years had I experienced what some of you have! I don’t mean this to diminish anyone else’s experience, not in any way, but for someone just starting the journey I wanted to give another perspective.

    I’m wishing all of us well in this journey! What a gut punch the diagnosis is. Thank goodness there has been enough research that there are now targeted therapies resulting in things such as AI’s for us estrogen + ladies, and may the dollars keep pouring in so they can continue to improve them!

  32. I never comment on web sites or blogs, but this site has been a godsend to me. Something Nancy said struck a chord with me. I too have experienced doctors attributing my side effects to normal aging. I think I could tolerate my side effects better if I was made to feel a partner in my treatment instead of the “be a good girl and do as your told” syndrome. My experience with Anastrozole was the final straw.

    I have finished my chemo with all of its devastating side effects, and have now been on Anastrozole for about four months. The fatigue is as bad as anything I experienced on chemo and I have incredible hand and arm pain. At night I constantly wake up because my hands become so numb its painful ( I don’t know if that makes sense but that’s what it feels like). When I wake up I struggle to open and close my hands and suffer from trigger finger in three digits. Pretty scary stuff. I told my oncologist, his nurse, and two pharmacists, and they all kind of brushed me off. If one of them had just come out and offered an explanation for the side effects I might have had a more positive attitude. Only one (a pharmacist) had any advice for me which was to try glucosamine.

    By chance I was visiting the prosthetic store and I mentioned what I was going through to the clerk. She knew right away what I was talking about and, after a healthy dose of empathy and compassion, suggested compression gloves. Well, I bought a pair and I had my first complete nights sleep in weeks. It doesn’t cure the problem but at least my hands don’t fall asleep at night. I thought I’d offer this in case anyone else is searching for help in this area.

    After careful thought and research I’m staying on the drug as long as I can. I have to believe that it offers protection based on the research I’ve done, but having said that, I have complete sympathy and respect for those who have opted out. Its so refreshing to hear all of the participants on this blog being honest about how they are affected by these treatments and your experiences are really helping me work through this awful disease and its treatment. Thanks a bunch everybody!

    1. Lennox, Thank you for chiming in on this discussion. Sorry to hear about your issues. As I keep saying, no one should suffer in silence. Anyone and everyone should feel free to talk about their issues with their medical team and request help in managing them. No one should merely be brushed off, validation in itself is helpful. Thanks again for sharing.

    2. I just finished radiation 3 weeks ago…I had decided not to take Arimidex….I look at all the horrible side effects that I read from women experiencing them…what makes me think I will be any different… I am so sensitive to everything..so I already have it set in my mind of the bad side effects..people say just try it…but I don’t think I want to even do that… I guess I have it in my mind that it wont come back were I got a low recurrence score….I just hope it doesn’t…..I still worry…I kind of don’t believe in these pills…sorry if I sound negative…I’m really not…I just don’t want the bad side effects…

      1. Diane, It might be worth trying one of the AIs. Not everyone experiences side effects. It’s never my intention to discourage anyone from taking a prescribed, recommended medication. Just had to reiterate this again. Thank you for sharing and good luck.

      2. I wanted to echo what Nancy said, Diane. Many people get lucky and have no side effects. I am one of the lucky ones. I just finished my 5 years, but am still leery about giving up my added protection! My oncologist was great. I went into arimidex with serious worries too. She said it was up to me to decide, but maybe start with 3 pills a week, which I did. My tumor was heavily estrogen driven and ultimately I decided to risk side effects rather than risk the possibility of a recurrence, and as I said, I am one of the lucky ones. You’ll never know unless you try, and you can always call it quits if you decide side effects you may experience aren’t worth it, but again, side effects are not a given!

        I found this website because I was googling “side effects after quitting arimidex”, and Nancy’s blog came up. I’d had a couple nights about 3 weeks AFTER getting off where I felt like I was having hot flashes and one thumb suddenly began hurting like the devil. If I had just been starting the drug, I KNOW I would have attributed both these symptoms to Arimidex. My google search doesn’t turn up anything otherwise (for getting off). I hesitate writing this because the last thing I want is to minimize what anyone else is experiencing, but I think there a danger that many don’t take into consideration…most people who have no problems with the drug (any drug) aren’t googling and posting on blogs, so its a lopsided read. I know I must sound like a shill for a drug company, but believe me, I just another woman, blindsided by that diagnosis too. And this website is GREAT! I have a terrific oncologist who doesn’t “pooh-pooh” complaints, but listens thoughtfully, and those that don’t have that, need sites like this where they don’t feel alone and trivialized. I have a 6 mos check with her next week. And I’m going to verbalized this realization. Reading some experiences here with other’s oncologists, I realize what a good thing I have in mine. She’s a gem.

  33. Hello, anyone taking anastrozole for triple negative breast cancer. First cancer in October 2011 was <1% PR, and second occurance was hormone negative with her2+. Reoccurance was in same breast very small compared to first time and had 33 lymph nodes removed and one was not cancerous, was stage IIIC. Having side effects and oncologist gave me a two week off this week. Not sure I need to be on it and side effects are causing me problems. He says minor but moods swings seem to be gone now and my hair was falling out and head was itchy plus other minor issues according to doc. I Had reconstruction second time which did not work due to my body rejecting both at different times. Having issues with range of motion and scar tissue. Hopefully with rehab this will be resolved. I am not sure I want to go back on the AI at this time. Supposed to call back in two weeks. How long for side effects to go away? My body been through so much. Already had hystromecty when I was 46, almost 66 now. Took hrt for too long. Obgyn just kept prescribing even when they knew it was not for long term use. Each of those drugs are now listed as causing breast cancer. Who knew why docs use us as trial and error to see what our bodies can take.

    1. Just to be clear first time had node involvement second cancer was only in breast. Did not go anywhere else. Took better care of myself after first occurance of cancer. Walked and exercise and lost weight.

  34. Having a hard time mentally this week. These AIs are hard. Been on both anastrozole and letrozole and taken off due to severe depression. Have been on exemestane for about 15 months. I am so tired all the time. I have a hard time falling asleep, wake every time I turn over, and am exhausted
    all the time. I do go about my day (I am retired), but most of the time in a fog. Luckily, I don’t have joint pain. I am having back issues, but my dr. says that what what I describe is not how exemestane presents. Anyway, I kept telling myself I can do this for 2 more years which would put me on AIs for 5 years. At my last visit, dr. said because I was node positive they would like me on exemestane for 10 years. My cancer was er+, pr+, stage 2 grade 2, only I node was positive although 18 were removed. The positive node was the sentinenal node closest to the tumor. I guess what I am thinking is why would only 1 node be cause to stay on this miserable drug for another 5 years? The thought of 7 more years of this is almost more than I can stand.

    1. Linda, I had one node involved too and 14 removed. I know it can be hard to stay on these drugs, but all I can say is I am trying to do just that. It is hard and the side effects are no small matter. I would ask your doctor for help in managing them. Of course, ultimately, the decision to stay on an AI is yours. Thank you for sharing.

  35. Nancy–at the Women’s Center in Dallas, the cost is approx. $2,700 total for the consultation (I believe includes a vag exam), and the 3 treatments spaced 6 weeks apart. Then there is a yearly maintenance treatment that may be needed. This sounds very expensive, and is when self-pay, but when compared to an operation (such as penile implant), it is very inexpensive! There is no anesthesia, and no downtime. It sounds too good to be true, and that is why I have looked so hard for negative comments or reactions–usually easy to find something negative about almost everything! 🙂 But I have not found anything yet except mild discomfort for a couple days sometimes. I plan to check into this further in a couple months after my last surgery. For anyone wanting to email a place for more information, I emailed jessica@womenswellnessinstitute.com. She was very informative and responded right away. Beth

    1. Elizabeth, Thank you for sharing about the cost. It sounds expensive, so this part is disappointing to hear. Still, it might be a good option for some.

      1. I too have the horrendous vaginal atrophy and dryness from Arimidex and Femara – had to quit but that didn’t reverse the problem. Finally found the procedure I have seen some of you talk about. It’s called ThermiVA – look it up on the internet by that name. Had my consult yesterday and will start the procedure in a month. Three visits and a yearly “touch up”. Gets great reviews! I am seeing a female plastic surgeon who does this. Yes, the procedure is expensive and I don’t think insurance pays for any of it. It is 3000.00 for the whole thing but I believe it will be worth it. (Here’s hoping!!!)

  36. I have been. AIs for nearly 2.5 years now. I started on Arimidex then switched to Aromasin after 13 months due to severe joint pain and fatigue. After about 3 months on the Aromasin the same side effects occurred and I have now developed gouty arthritis which has presented with severe finger pain, swelling, limited range of motion, weakness in my hands and something called “gouty tophus” which as deposits of uric acid crystals. Gout can affect any joint, but traditionally it occurs in the big toe or in the knee.
    I saw a rheumatologist last week who confirmed the diagnosis and has put me on more medication to combat the symptoms of gout. These meds have the potential for liver and kidney damage.
    The rheumatologist is unaware of any relationship between the gout and the AIs. I cannot find any research on this. However, I don’t have any family history of gout, I don’t eat red meat, I don’t eat much in the way of shellfish or other foods that can cause gout. I don’t drink alcohol and I don’t smoke.
    I am wondering if anyone else reading this has experienced the symptoms of gout or even arthritis. There seems to be so little research regarding the terrible side effects of the AIs and little interest on the part of the medical community in ever investigating them. This is very discouraging as the symptoms are all so painful and not compatible with a good quality of life.
    At some point I have to make a decision if I am going to continue on the AI or stop it to see if my symptoms go away.
    Thank you.
    Jan

  37. Hello warrior friends! I stumbled across this blog as I was looking up info on Aromasin. My story looks like this…July of 08 I was diagnosed with stage 1 breast cancer at the age of 35. I have a long line of family history breast cancer and my father also died at 47 of cancer (esophageal cancer…genetically it is common for a man to have that kind when breast cancer is common in genetics) so I opted to have a double mastectomy and a hysterectomy. I was told by my oncologist that by going that and doing hormone therapy that my reoccurrence would be 7% (without it it would be 10%). So, they put me on Tamoxifen until I had my hysterectomy and then put me on Femara. Both of them were BRUTAL. I couldn’t tolerate either. Joint pain, back pain, foot pain, depression. I wanted to die. Seriously die. I tried to tell my oncologist about it and he blew me off. So, I decided not to take it and lied to him. For months he thought I was taking it (not sure how he didn’t catch on because I never refilled the script). I got sick of lying to him and told him I wasn’t going to take it anymore. He was furious. Threw a clip board and all. I broke up with him and went to another oncologist. Fast forward to July 2014, I found a lump on on the very end of my mastectomy scar and showed my oncologist (I have been cancer free and tamoxifen and Femara free since 2009). He felt like it was scar tissue but had me go and get a ultra sound which led to a biopsy. 2 days later, my results were in and the cancer was back. He ordered a PET scan and a couple of days later asked us to come in. It was Stage 4 and was in my lymph nodes, sternum, spine, sacrum and ribs. I went through 8 months of terrible chemo but after chemo all the spots but the two in my ribs were gone. The 2 in my bones (ribs) have stayed the same which in the cancer world is good. I have been off the big dog chemo for 6 months but take zometa and faslodex shots monthly (those dang shots are terrible may I add). 3 weeks ago was time for my 3 month PET scan and guess what…..its back again. They found cancer in my subpectoralis node. I am VERY lucky they even found it because it is so deep in my muscle and up against my port. I went into my Oncologist on Monday and he told me that he doesn’t want to do chemo again at this point because I am feeling healthy again but wants to put me on Aromasin and then if I tolerate that he is going to add another one (I can’t remember the name but it has more side effects than Aromasin. It’s not Femara because he knows I can’t tolerate that). He also told me I’m terminal and he is just going to try things to keep me “healthy” as long as he can. NOT what you want to hear. So, as I look at all of the side effects of Aromasin and remembering that he said the one he will add will have more side effects, I am thinking I don’t want to take it. I have had the script filled and it’s been sitting on my counter since Tuesday and I can’t make myself take it. I feel good since chemo has been over and I am actually living again. I am 43 years old and I do not want to have the quality of my life terrible again. I have a daughter who cheers in college (we travel 7 hours to watch her cheer at all of the home games) and a 13 year old daughter who is involved in sports. I remember with Femara and Tamoxifen, I couldn’t even get out of bed or walk or hold a pen. I can’t do that again. I am praying hard l about it because if I’m terminal……do I really want to live like that again or do I want to LIVE life to the fullest feeling good? Life is too short to be an experiment with these drugs. I also wanted to say that my oncologist told me 1 out of 100 woman cannot tolerate these drugs. After reading this….that statistic is WRONG! Thank you my warrior sisters for being so bold and telling your stories!

    1. I just read your story. It sure hit home with me. I was diagnosed with stage 2 non ductal invasive in March 2015.My tumor was contained and had not spread. My surgery (mastectomy was the 26th of March). I had 37 treatments of radiation and did well. I have the tamoxifen on my shelf. Arimidex almost killed me so I keep putting off the tamoxifen. I want to live not spend my days in pain and not really living. I have told no one yet that I am not taking it as of now. Hard decisions . Thank-you for sharing . It was just what I needed to read today. I am not alone. Blessings to you. Julie Oates

      1. Wow, Ladies your voices are a God send to me. I also live with anxiety of life after breast cancer. I am 53, stage 2, first with Invasive Lobular Cancer-2 tumors, 2.5cm and .6cm, and Invasive Ductal Cancer .6cm tumor, plus In Situ Ductal and Lobular Cancels all in one breast. I chose a double mastectomy. My Oncotype DX score is 12. I took Famara-generic Letrozole for a month. I experienced the list of side effects, I took myself off before my surgery. I improved daily. My oncologist is moving to Vanderbilt. I was asked to pick another Oncologist in a moments’ notice at last appointment, who does this? I felt the appointment was a waste of time. So, another stranger in my life to start over with, yeah! I asked statistics without therapy drugs? I have been told program is down, now 2 months on a row. I have fibromyalgia and osteoarthritis before this, and a weight problem. I work, eat healthy, and exercise minimally. Yes, I need to do more here, I am doing better since I have been off work. I have researched and read until I fall asleep every minute I have free. I do have questions about these drugs-Famara, Tamoxifen, Etc. My heart is learning towards NO drugs. I do think Doctors push ” we must be compliant patients.” I have been told this during visits to the doctors. My personality has always trusted doctors, but now I question this. My intuition says, I want quality, not quantity of life (where I feel bad.) I was diagnosed in July, 2015. I have my next appointment in January, 2016. This is my short story. Next, I want to continue living life on my terms. I would like to see the support I had before surgery now. It seems the supprt drops to nothing. Keep posting, it has really helped. Later, Joyce

  38. Have any of y’all been on lbrance? I talked to my dr about not taking the Aromasin and he wants me to try Lbrance. It’s new and the side effects aren’t as bad as Aromasin (that I see). It’s a new drug and I’m anxious to see if y’all have taken it or heard about it?

      1. Yes. I am Stage 4. I am estrogen positive. He wants me to take this on top of Zometa and Faslodex that I have been doing monthly for the last 5 months. My PET scan showed new cancer in my lymph nodes. This is a new med and apparently it ages 6 months to survival time.

  39. I have taken exemestane for 4 years and anastrozole for one (had to stop the latter since I was unable to stand the joint pain and weakness). I am now being told that there are studies indicating 5 more years may be helpful. I plan to let my oncologist know that I will be stopping completely. Is there anyone on this site who has stopped? What if any side effects went away? I suspect the horrific face aging will not remedy itself. However, did anyone experience renewed energy with less joint pain, vaginal dryness, etc. ? Any hair growth?
    I truly appreciate all of your comments. I had stage 3 BC with a bilateral mastectomy, chemo and radiation. I am now made to feel guilty as well for complaining about the medication and am told I should feel lucky.

    1. I completed my 5 years in September and the vaginal dryness got better pretty quickly. I went from using Vagifem once a week, to not using it at all. Other than that, I don’t feel any differently, but I was lucky with side effects. Horrific face aging…I attributed that to being diagnosed at 67 and this a horrific time for aging faces!

      My oncologist is quick to say the studies aren’t complete for the benefits of an extra 5 years of arimidex/anastrozole. My gut feeling is that when they are, they will have found there is some benefit. The question is how much. It stands to reason that if estrogen was fueling our cancers, then allowing levels to creep back up will make us somewhat more vulnerable,,,but to what extent?

      1. question; if estrogen is fueling the cancer then you would think dropping some weight would reduce the estrogen…thats what I was hoping but my neighbor has the same stage 1 dcis and she was estrogen positive as well but she is very thin…..we both tested estrogen positive but I am fat and she is thin….I was hoping to drop some weight so I wont have to take the armidex pill …….she takes it and is thin…..any ideas? thanks……I stopped the pill for 3 months then started it again every other day but all the bad symptoms came back so I stopped it again……UCLA is doing a study on breast cancer patients who stop taking the pill…anyone who has stopped can be a part of the study…contact hpieters@sonnet.ucla.edu (tell hubie renee sent you) ^.^

        1. I’m thin too Renee–have been an exercise freak all my life and have a BMI of 20.xx. I WAS however, doing HRT still at 67 (tho had cut back to only 3/week) and I believe that was a factor in mine. I threw them in the trash the day I was DX’d. Still, vaginal dryness was better almost immediately after quitting arimidex, so I definitely still manufacture some. Maybe we all do to one degree or another. Because my side effects were minimal, I was willing to stick out the 5 years. My oncologist is OK with my staying off it now…I just hope I’m not making a mistake! :(. Do you ever get over this fear??

  40. I’m 41 and was diagnosed with DCIS Stage 0. I had a lumpectomy and 35 radiation treatments. I have been struggling with the whole topic of Tamoxifen. My oncologist suggested it at first. I went to Moffitt for a second opinion and the oncologist said that it is part of the regimen for DCIS. She also told me she preferred treating the uneducated patients because they just follow the regime. ha! She also told me to not get caught up on the side effects and asked if I ever read the advil bottle and that it can kill you. Not sure how many people are dying from advil. But what if your gut is telling you not to take it? So, I went back to my oncologist and told him my reasons why I didn’t want to take it. He told me it isn’t going to increase my mortality and told me that if I was his wife he wouldn’t advise me to take it. I believe that says a lot. He told me to live my life and that I would be fine. He wouldn’t even give me a psychologist referral. The fear gets to be too much some days.
    Of course, my family doctor told me to continue to think it over. She said, “don’t you want to do everything possible to keep it away?” Well…of course I want to keep it way, but what if it does more harm than good??
    After reading a lot of the entries, I can see I am not alone….

  41. I’ve been reading all of the comments here and I felt I had to respond with my experience. I’m 62, and was diagnosed with breast cancer in the left breast toward the end of 2014. First I did seven rounds of chemo followed by total mastectomy in February of this year. Then followed 33 radiation treatments. I did have cancer in several of the lymph nodes also. My doctor put me on Anastrazole in June. At first I didn’t notice any symptoms except the hot flashes, but soon as we got into this fall, my joints began to ache pretty bad, especially my knees. I’ve had achy knees before from wear and tear, but this was much worse, making just walking around the house or doing grocery shopping really painful. Some days I feel like I’m eighty and not 62. Last visit with oncologist, she asked If I could manage symptoms and I dumbly said yes, but symptoms have gotten worse since then. I know that she said there are a couple other aromatase inhibitors i could try but my understanding is they all pretty much have the same symptoms.
    In January, my adult daughter and I are flying down to Disney World for six days. The way I feel now, I don’t know if I can walk the park without being in pain all the time, but I’m determined to try. Currently, I’ve stopped the pill for about four days and already notice the difference. I don’t expect to not have knee problems at all, but it’s a significant difference. If i told my doctor, I’m sure she would probably yell at me for taking it so sporadically, but some times you have to do what feels right for you. I will start taking it this week again, but probably will stop in the week before our trip, and not take it again till we get back. I’ve also developed stiff middle fingers on both hands since taking Anastrazole.
    Sometimes I think that the doctors, no matter how caring they may seem to be, are just interested in the end result….like how long you can keep cancer from coming back by taking these drugs, and the fact that their treatments have worked. But the quality of life you experience is just as important as prevention, and as many here have expressed, if you feel like crap all the time, what’s the point?

  42. I probably have more experience with this drug than most, and I have been off it for about 5 years. I was in a study with thousands of women about its effectiveness over time. So, from my perspective, and keep in mind I am now turning 72 in two weeks or so — the words “Aromasin” are still with me.

    I suffered all the many problem side-effects with Aromasin at one time or another — and I continued working through it. It was my Onc that took me off at the 7 year mark. I am now at the 12 year mark from diagnosis, and life has not changed a whole lot in the last five years. I think that women that have familiar issues of arthritis and auto-immune kinds of issues that this drug triggers them to start. I honestly cannot tell that I have ever been on and then off of this drug. I feel pretty much the same. I am thinking about asking my Onc to put me back on Aromasin due to its preventive power in recurrence of the breast cancer as mets in other organs. When breast cancer comes back, it generally comes back elsewhere. The drug is horrific — the question becomes whether a change of lifestyle to deal with those side effects and roll the dice to see how long it is effective — or take your chances that after the therapy years are over, the cancer will not come back. There are no easy answers. As for me, since I continue to have joint pain, memory issues, hair issues — etc., etc., etc. — I did not improve when I went off the drug, so I might as well stay on it and adjust. Since breast cancer I have picked up the diagnosis of severe psoriatic arthritis — my house looks like a friendly attachment to CVS Pharmacy. But, I am alive, and I a grateful for that. Think of some of these drugs to be triggers to be something familiar within the family genetic codes. Both my parents had arthritis, TMJ, fibromyalgia, and fatigue when they hit their 60s. Perhaps Aromasin becomes a trigger to bring these kinds of “side effects” sooner rather than later? I have thought about it often, and since I have adjusted to all this pain, I am really thinking about asking to go back on the drug after being off it for several years.

  43. I rarely ever post a comment to any website, but felt compelled to do so. Despite leading a pretty healthy lifestyle, I was diagnosed with Stage II cancer this past year. I went through a lumpectomy, chemo and radiation and finished up this October. I am still dealing with extensive numbness from the surgery and neuropathy in my feet. My hair is finally growing back, so that makes me happy! I tolerated everything pretty well, although at the time, it certainly didn’t feel like it. I really like my oncologist and have gotten great care from my surgeon and radiologist, along with all the nurses and techs. My onco gave me a prescription for Anastrazole. I filled the prescription but never started. I did my research and spoke with a lot of people, including others in the medical field, and no one said I should go ahead and start it. For one thing, I already have osteopenia and am very afraid of it progressing. When I had my follow-up onco appointment she asked how I was doing on the anastrazole and I told her I wasn’t taking it. I could tell she wasn’t very pleased. She asked “Did you even try it?” I said no, and that I was fine with my decision. She really wants me to give it a shot, but I am not convinced it’s worth it. I did ask if it was too late to start and she said “No”, I could do it at any time. She said she prescribes it to patients that didn’t even have chemo. Interesting. But, she respects my decision. After reading the comments here, I am even more confident in my decision. Even having a few of the side effects are unacceptable to me. I think I’ve done enough damage to my body when I see the radiation burn patches, the surgery and port scars in the mirror every day. Thanks for your blog, it’s a great read!

    1. Christine, Thank you for sharing. I’m sorry you are dealing with so much. Please remember, nothing here should be interpreted as medical advice. My best to you as you move forward and make decisions. And thank you for your kind words.

  44. I just wanted to share my “latest” Doctor story. I have posted before about being stage 4 ER positive breast cancer (I am 43 yrs old). I love my oncologist at home. He totally understands that I cannot tolerate the hormone therapies and he doesn’t try and pressure me into it. He says that there is plenty to try without me taking AI’s. I am currently taking Ibrance (trial oral chemo drug. I’m on day 15….we will see) Zometa and flasodex shots. I went to MD Anderson 2 weeks ago to get in with some genetic doctors and hopefully get matched with some trial stuff. Well to do that, I have to have a Dr from MD Anderson. I was giving him my breast cancer history and told him I cannot tolerate the AI’s and what the side effects were. I promise you he told me that I need to try them again and that the side effects were in my head. My husband and I looked at each other and he gave me “the look”. That look was for me to bite my tongue and put my fist in my pocket. How dare that Dr tell me it’s all in my head. I wanted to DIE when I took 3 different AI’s. Chemo didn’t even make me feel that way and I had some big dog chemos. So, I just want to remind each of you that YOU are your own advocate and only YOU have your best interest at heart. YOU do what you feel is best and don’t let a doctor bully you.

    I also came home and hugged Dr P (my oncologist at home) and told him thank you for listening to me and not belittling me or my decisions. I will still have to see the Dr at MD so I can be able to hopefully be matched with a trial and have the genetic dr. I’m just going to have to bite my tongue and keep my fist in my pockets!

    Keep fighting my sisters!!!!!

  45. So glad I found this site. I am a newly diagnosed breast cancer patient. Had bmx in June of this year and given a stage 2 status. Long story but that stage changed from a 2 to a 4 several months ago. I started on femara. That lasted 5 weeks. Could not handle the crippling pain. And I have a high tolerance to pain. Was then given aromasin. That one lasted 7 weeks. Same thing, crippling pain. I took myself off 3 days ago. Believe me that is a hard decision to abandon treatment at stage 4. I cannot handle the pain even with percoset round the clock. I am now terrified. Will see oncologist next week. We will see what she says.

    1. Mary Anne, Welcome. I’m glad you found my site too. I don’t blame you one bit for feeling terrified. I’ll be thinking about you. Good luck with your appointment and beyond.

  46. Well, I took arimidex I think for 31/2 yrs I couldnt stand it anymore because I felt like I had been on chemo forever. My hot flashes had stoppedbut that was two to 3 yrs ago but now they have started up again. Should I be concerned do you think?

  47. I’ve read all your comments and am so thankful to have found all of you. I thought for sure I was a wimp and just imagining the degree of pain I’ve come to know as Letrozole. I took it for 4 months, and quit at New Years because I was unable to walk or move to any degree without terrible pain. Fingers, toes, arms, knees … The only part of my body that didn’t hurt was my nose I swear! I saw my oncologist who told me 30% of women have severe bone pain from Femara and that he sees it in his practice as least 3 times a week. He also believes it’s not to be tolerated and he told me to stay off everything until Feb. and then I will start Tamoxifen. I had stage 1, in 3 spots, invasive ductal, DCIS and LCIS with “super” lumpectomy, no nodes, no chemo thank heaven. Not sure how great Tamoxifen will be since it’s know to cause uterine cancer, cataracts and blood clots. Reduce my risk of cancer for a new and exciting variety ;\ go figure.

    Can anyone tell me how long it will take for the bone pain to subside? I’m off 3 weeks now and it’s still horrible. I take a bucket load of vitamins but just wondering if anyone knows anything/tricks that will speed the detox process.

    Thanks Ladies for sharing so much info, what a Godsend you are!

    1. Hi Beth, it took several months for the pain to subside but each month it got easier to deal with. Mine was complicated further as I have a mosquito virus that causes similar symptoms. Good luck!

      1. I stopped Arimidex Nov. 4, 2015, and the pain in my fingers resolved in a couple weeks. The pain in my feet has taken longer, but they are definately getting better. My mood and energy also improved gradually over 2-4 weeks. The weight gain will take a while longer to reverse. I take Vit D w/ Vit K2 – enough to keep my levels way above 50 (per my ortho surgeon), and also take biotin, and calcium. I also stopped taking Fosamax after doing some frightening reading about that drug. I had only taken about 5 of the 20 that were prescribed over 5 months, and will never take that again. It can also have similar side effects as Arimidex, so if you are taking any other med to ‘prevent bone loss,’ read those side effects to see if that med might be contributing to how you feel. It took 5 months for my side effects to get to the point I said enough, so I imagine that 2-3 months to reverse them would not be unusual? I hope that your side effects will fade quickly, and that you will find the best treatment plan for you. Courage.

        1. Even after quitting the Arimidex, it took a long time for the side effects to subside. But I still have some joint pain and numbness and tingling in my hands. It has been six months now. Have not gone back on any of them.

  48. Thanks Gayle, Sue & Elizabeth. I can’t imagine months more for this to go away. The pain in my arms, hands and feet are the worst with no relief in sight after 19 days (no fosamax or others to complicate things thankfully). I did see my doc last week and he wants me on Tamoxifen but not for a few more weeks. I’m taking Xanax to get some sleep (pain wakes me) and to stop hyperventilating with anxiety. Its’ unbelievable that 4 months of using a drug could take months to feel better after stopping. I’m hoping no side effects from Tamoxifen or like many of you I will quit all of them. I do take tons of vit. D along with the B’s, omega’s, calcium etc. And of course the baby aspirin to offset age and the possible side effects of tamoxifen. I was hoping there was a quick detox that would stop me from hurting every morning when I open my eyes.

    Thanks for your insight and shared experiences <3

    1. Beth – The pain in my middle joints of 2 fingers and my thumb resolved after a couple weeks. However, I have had ulnar nerve issues that started – and this causes pain/numbness in ring and pinky finger. I looked up physical therapy for ulnar nerve entrapment, and started doing those exercises, and it helped a lot after about 10 days or less. I still do them periodically. This may not be the same area of discomfort for you, and if not, maybe a physical therapist could give you other exercises to do for hand, elbow, finger pain. This may help to speed up the process. Just an idea. I also eat alot of the ‘superfoods’ like Kale, blueberries, pumpkin seeds, etc. and try to cut way down on sugars (which tend to aggravate joint pain in general.) So sorry you are going thru this. Courage, Beth (Elizabeth)

Leave a Reply

Your email address will not be published. Required fields are marked *