AIs, the Drugs We Love to Hate

The Dark Side of Aromatase Inhibitors – Part 1

I decided to divide this topic up into a couple of posts because as you may or may not know, I’m working on being less wordy and more concise in all my writing. Part one will be my attempt to convey some general information about aromatase inhibitors and part 2 will be more focused on my personal experience – rant, so stay tuned.

Many breast cancer tumors are estrogen positive (ER-positive), progesterone positive (PR-positive), or both (ER-positive and PR-positive). Mine was both.

By the way, this information about your tumor(s) is provided in your pathology report, and you simply must have a copy of this report in your possession so you can familiarize yourself with your own unique cancer’s biology, even though this might sound like the last thing you want to do after your diagnosis. Be sure to ask for a copy if you don’t receive one.

If a woman is ER and/or PR positive, her oncologist might very likely prescribe an aromatase inhibitor after surgery, chemotherapy or radiation as part of her adjuvant therapy treatment plan. The intent is, of course, to prevent recurrence.

There are three kinds of aromatase inhibitors (referred to as ‘AIs’ from here on out) that have been FDA approved:  anastrozole (Arimidex®), letrozole (Femera®) and exemestane (Aromasin®).

Basically, these drugs block tumor growth by lowering the body’s natural supply of estrogen.

How do they do this?

These drugs don’t allow the food supply (estrogen) to get to the tumor because they block the aromatase enzyme, which is needed for the production of estrogen.

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Hence the name, aromatase inhibitors.

AIs are often prescribed for post-menopausal women because they don’t block estrogen produced by the ovaries, but do inhibit estrogen production in other body tissues. If you’re not post-menopausal, the benefit’s not there. For pre-menopausal women with estrogen positive cancers, Tamoxifen is still the recommended hormonal adjuvant therapy drug most often prescribed.

Before cancer, I didn’t even know that in addition to the ovaries other body tissues also produce estrogen, but they do.

As I understand it, there isn’t a lot of difference between the three AI drugs. One difference however, is that Aromasin® is an irreversible aromatase inhibitor (stops aromatase enzyme’s production process permanently) while the other two are not. Studies seem to indicate the effectiveness of the drugs in preventing recurrence is pretty much the same.

AIs have become standard treatment for adjuvant hormonal therapy for many post-menopausal breast cancer patients; gotta shut that estrogen production line down – and that’s what AIs do.

I clearly remember the day when oncologist number one showed dear hubby and me all those mind-boggling ten-year survival odds charts. The charts ‘said’, that if I agreed to add Arimidex® as part of my adjuvant treatment plan, I would supposedly gain another six percentage points for my staying-alive plan.

I was on board. I wanted those additional six percentage points on my side.

Who wouldn’t?

And now on to the dark side of AIs – in case you can’t guess, but I’m betting you probably can, this would be the nasty side effects.

Every person is different. Just because you’ve heard horror stories about unpleasant side effects, don’t assume you’ll experience the same.

Having said this, some of the side effects are fairly common and even somewhat predictable.

Generally speaking and maybe even mildly comforting to know (then again maybe not), the side effects of all three AIs are similar.

The main and most often complained about side effects are:  joint pain, bone loss, bone fractures, lowered libido, hair loss/thinning, weight gain, hot flashes and sleep issues to name a few. (Yikes, do we really need more?)

The side effects are often not addressed adequately, if at all, by oncologists. This is too bad because side effects can, at the lesser end of the spectrum, be highly annoying and at the worst end, extremely debilitating.

I speak from experience on this as I have had some very unsettling side effects myself.

More on this to come.

In fact, side effects (mine anyway) will be the focus of The Dark Side of Aromatase Inhibitors – Part 2.

Stay tuned and get your rants ready!

Note:  Please remember that while I always strive for accuracy in facts I share, my posts also generally include my thoughts and opinions and are not intended to be medical advice specific to you. Please discuss all concerns with your doctor.

Are you on an aromatase inhibitor or do you know someone who is?

Are you on Tamoxifen?

If so, how are things going and are the side effect issues (if you have any) being adequately addressed?

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AIs, the Drugs We Love to Hate
The Dark Side of Aromatase Inhibitors

 

 

263 thoughts on “The Dark Side of Aromatase Inhibitors – Part 1

  1. I have been on Anastrozole for 13 months and have gained 14 pounds since. I have all kind of joint, bone and muscle pain. I also was diagnosed with osteoporosis since having chemo for breast cancer. The
    chemo has left me with Neuropathy also. Doctors do not address all the side effects except that it will go
    away in maybe 6 mos. then maybe 12 months, last stated well maybe 2 years? They are guessing and I understand that but they need some follow up care for the patient to try. I have been thinking of stopping that little white pill that has caused me so many problems. I may still do that, I have read several blogs and also stay In touch with a lady from New York who has stopped the pill and told her doctor later.
    She feels amazing, no more pain. Living her life like before. The only difference with her story and mine is that was her first diagnosis with breast cancer. I had breast cancer 20 years ago, had 4 rounds of chemo and 28 radiation treatments, I survived all of that quite well, it took several years to get my energy level back but I didn’t have all this pain and other issues. I am 100% Estrogen Receptive. My oncologist said it is a slow growing cancer and I wonder if I really needed to have all the surgery I did or take all these drugs. Being slow growing and I’m 72?
    Was told both times that my lump was benign we told my doctor it didn’t belong there and to take it out.
    It was stage 2B both times, it was in 2 of 11 lymph nodes. October of 2013 I had a lumpectomy in my left breast. November 2013 I had a Radical Mastectomy in my left breast and a Simple Mastectomy in my right breast. Turns out the lump in my left breast was not cancerous but spread to my lymph nodes on the left side but the cancer came from somewhere on my right side. Right side cancer was Ductal and left side was Lobular. Surgeon told me he had never had a case like this before. September 2013 I was feeling great till I got the diagnosis in the middle of that month. I appreciate reading all these blogs and wish everyone well. Its a tough journey but sometimes I think the treatment is worse than the cancer. Doctors offered more drugs for the side effects and I told them No Thank You. I think I already had way too much drugs and toxins pumped into my body.

      1. Laurie and Beth,
        Can one of you provide the company, address or website on where to obtain the CTC test in Germany? I see that you had a dialog on this. I’ll gladly pay the $360. Thanks.

  2. I have had 3 pills and haven’t slept for 3 nights with insomnia. I have 8 of the side effects already. I am not going to take Anastrozole any more, even though my oncologist will be upset. Thank you for your blog as it is very helpful.
    Joanne

    1. Joanne, I am sorry to hear about your sleepless nights. Personally, I wouldn’t stop after only three pills. Please do not take anything you read here as medical advice. I certainly do not intend for anyone to make medical decisions based on what’s read via my blog. I am still taking an AI myself. I respect everyone’s decisions to do what they feel is best for them. As always, I encourage you to not suffer in silence. Please discuss all concerns with your doctor. Thank you for reading and good luck.

    2. Joanne, Did you ever end up going back on an AL? I just took my first pill yesterday and have been nauseated all day today. I’m scared of all the side effects. I’m 59, very active, very healthy otherwise. I was Stage 1, no lymph node involvement, lumpectomy with intraoperative radiation, no chemo. Anyone in the same boat?

      1. I had the same diagnosis as you, Linda. I was first on Anastrazole and was miserable. I had tendinitis, muscle stiffness, fatigue, and insomnia. I quit after six months. I took a two month drug holiday and started on Letrozole. So far so good. I do have insomnia and some of the other issues, but much milder than before. I saw an integrative medicine doctor before I started on the Letrozole. She did a super thorough lab workup, and had me checked out by numerous specialists. Then she started me on an extensive supplement regiment to help with the fatigue, insomnia, and inflammatory issues. It has really helped. Occasionally I will forget to take them and I really notice the difference.

        1. Do you mind sharing what supplements you are taking? I’m taking Vit D, calcium and a multi. Want to stop as many side effects as possible. I will give this a try, it’s early, but I don’t want to totally screw up my quality of life. Thanks for your comment.

          1. Hi Linda,

            I will tell you the supplements that I am on, but I had a lab test to check the works including vitamin B and D levels first and continue to check them every 3-6 months. The brand matters as some are more efficacious. I am on Country Life- vitamin B12, vitamin B2, vitamin D3, Resveratrol /Nordic Naturals Omega 3/Renew Life Ultimate Flora Critical Care/Life Extension Super Bio-curcumin and Calcium (brand not critical on that). My preliminary labs showed me as being in the average range for everything, including the vitamin levels, but my internist finds that her patients fare better in the high normal range. For sleep I take Gaia Valerian Root and/or Passion Flower. I just started alternating taking Benadryl instead on some nights. All are non- habit forming and produce REM sleep. Check with your doctor. Good luck!

      2. Hi
        The same thing happened to me when I would take it in the morning. I now take it at night with dinner or right after.
        Good luck.

      3. Yes, your cancer sounds a lot like mine. I was on Anastrazole for a year. It seemed to have a cumulative affect on me. I did not have any nausea but the insomnia started right away but I switched to taking the pill in the morning and that helped a lot. After 3 months the joint pain started in. Not too bad at first but after about 6 months it was worse. Started lifting very light weights and taking Glucosamine Chondroitin. All that seemed to help but from months 9-12 the muscles in my body started to ache. By Thanksgiving I hurt just about everywhere. I told my Oncologist I wanted to switch to Aromasin in January. I went off the Anastrazole for a month and started feeling better after a couple of days. I started the Aromasin on Jan. 9. So far so good but it has been less than a month so I am not jumping to any conclusions. I really enjoyed my month off and feeling more like myself though.

        1. I have been on Anastrozole for 14 months now and feel that I have had side effects that have been ignored as “just old age” (I turn 70 in Feb.). I have sporadic hot flashes, although not as bad as the “real thing” was when I went through menopause. I have occasional nausea, but it usually dissipates fairly quickly. The worst thing I deal with is constant joint and muscle pain all over my body. Problem is, I had low back pain the year before cancer diagnosis, due to a bulging disc, etc. in my spine. However, that pain has become much worse to the point where I can’t stay on my feet walking or standing for more than about 15 minutes until I am literally bent over in pain. Lying down or sitting helps some, but not totally. Along with that is upper back pain and joint pain (feet, toes, ankles, knees, hips, fingers, hands/wrists, shoulder) to the point of being incapacitated at times with it. At first I just figured that arthritis had set in because of my age, but it became so bad and so fast that I now think it probably is mostly a side effect of the Arimidex. I am not ready to give up yet and so continue to take the drug.

          1. Donna, we have a lot in common. I was diagnosed with invasive ductal carcinoma in April of 2014. Was put on adjuvunct hormone therapy to reduce the size of the tumor. I took arimidex till Nov. of 2014 with a small reduction in the tumor then had a partial mastectomy. The ancillary lymph nodes showed no cancer even though they were somewhat enlarged. Had 15 radiation treatments . I had remained on Arimidex this whole time, and have been on it since then till about 2 months ago (2017). The effects of the Arimidex have gotten much more noticeable since the beginning of treatment or I may have become less tolerant of them. I have always been very athletic person and had no time to rest or relax. . Being on the medication made me fill my age: I turned 70 in Feb. 2017. I have pain and stiffness all over, neck, hips, lower back, scalp. Moving furniture, landscaping or painting the inside of my home now sets me back days. Oh forgot to mention hot flashes. I consulted with my onc. She suggested I Change to Femera. I did but no noticeable difference. I have been on it for 3 months. I started taking an Advil in the am and pm which makes me feel almost normal. If I forget to take them it’s the same story Pain! I find myself coming back to the sites to make sure others are feeling these Side effects, I am forever thinking about cancer has now gone to bones etc. I’m not willing to go off meds but news channel said yesterday taking ibuprophin leads to risk of heart problems…..I guess worrying could cause health problem too. So I’ve chosen Advil…. and 6oz on wine in the pm, makes me feel human. Hang in the cancer survivors were in this together

          2. Even so lower back pain/sciatica, hips, fingers, hands/wrists, and muscle pain seems to be spreading to other areas, and taking away quality of life from living with so much discomfort since starting anastrozole on 5/17/17, after a second bout with stage 1 slow growing/non aggressive breast cancer, which thankfully was not in my lympth nodes either time, I am so afraid of stopping the anastrozole, especially because I decided not to take it with the first breast cancer in 2013 for fear of the side effects, but was told that is why I may of had another small tumor not even three years later. I had sciatica/periformis syndrome a year before the new cancer showed up and I had great relief from aquatic physical therapy, but within two months of starting anastrozole pain returned but now with a vengeance and in multiple other areas and sometimes in muscle spasms behind my left leg which can come on suddenly. I just shared with my husband the quality of my life has suddenly changed with such frequent muscle/joint pain. On another note has anyone changed to from anastrozole to letrozole which someone said caused much less muscular pain for her. And one person on this blog mentioned she is taking the anti inflammatory med diclofenac which helped her dramatically. Please God guide me to the right decisions and keep me grounded so I can get relief.

          1. I had breast cancer. Small lump but pre cancer cells in breast tissue so I had skin saving mastectomy with a temp small implant. Nipple removed too No lymph nodes affected. I am having the other breast made smaller and the affected one made bigger with a nipple reconstructured and tattooed. So both breasts will match. I am on Letrozole with no side effects after 4 months. Not sure if my skin on my face has become dryer and more wrinkles tho. I’m almost 59.

      4. Linda, my situation sounds somewhat similar to yours. I had 1.7 cm tumor in left breast discovered by routine mammogram in November, 2016. I had lumpectomy & sentinel node biopsy in Dec. 2016. No cancer in nodes. Because of my age (over 70), & other factors, I met criteria for not needing radiation follow-up. I also have very low oncotypeDX score of 4. I was supposed to start aromotase therapy with Arimidex this month, but am wondering if the risks outweigh the benefits for me. I took my first pill Feb 19th. Felt OK during day, but had chest pain & tightness & asthma during the night. Had to use albuteral inhaler. Ribs still hurt the next day. I tried the medication again on the 21st & got terrible headache in short order. Had buzzing in my ears & felt unwell. Called pharmacist who said Arimidex can raise blood pressure & this was probably what happened. I already take meds for hypertension, so don’t want more problems. My oncologist in out of town now, but will discuss with him. I really feel I got a cut & cure & am considering not taking the aromotase inhibitors. I wonder if other women have done this & if it has worked out well for them. I have been told I have a 90% chance of not having recurrence if I do nothing more, but the aromotase therapy would increase that to 96%. It is a tough decision trying to balance potential length of life with quality of life.

      5. I’m in your boat! Stage I cancer. Three nodes were also removed but turned out to be benign. Started me on anastrazole and, every single day of my life, I am nauseous, do not have an appetite, break into cold sweats, feel panicky, nauseous and “off kilter”. Can’t drive much anymore due to a feeling in the pit of my stomach as if I might pass out. Had mammogram last weekend and was told it was abnormal. Further studies will be done next week. Starting to lose hope! God help us all…

        1. Christine, I had the same diagnosis. Have been on letrozole for a little over 7 months. The muscle and joint pain was bad but that has passed. Now I am having horrible nausea and constipation. Loss of appetite and losing weight. I have asked my doctor to take a break from taking letrozole. If it’s causing this then I may take my chances with recurrence.

    3. You are not taking Anastrozole to please your oncologist, but because statistically it really does seem to prevent a recurrence! My oncologist said that it is much harder to cure breast cancer that has recurred than it was the first time. I agree that these pills can disturb quality of life, but if it really is a question of life or not life, one should consider if one wants to take the risk.

  3. After being on Arimidex for five years was switch to Letrazole. I stuck the five years of bad effects out for five years, however the bad effects of Letrazole makes me wonder if I can continue live like this. Chronic fatigue, hot flashing, terrible hot flashes, and just a sick feeling most the time.

  4. I am so sorry you are having issues with side effects, but so glad I am not alone in this misery. I’ve been on anastrozole and letrozole and now I am on exemestane. I have a hard time falling asleep and wake every two hours, but force myself to stay in bed (except for the middle-of-the-night potty break!) 7 hours. I am good for the first few hours in the morning, but then get weary for the rest of the day. My biggest concern is the weight gain. It has me so frustrated. I really have an increased appetite. Wondering if my dr. will give me an appetite suppressant. I doubt it. I keep telling myself two more years of being overweight, but alive or stop taking it and be less overweight and maybe have a recurrence. I know I’ll keep taking it. Thanks for allowing me to vent!

    1. Linda, I started on Anastrazole and it gave severe weakness in my legs. I complained to dr and he said it wasn’t meds. I disagreed. I couldn’t stand still on long lines at Christmas time and I had to sit on floor while on line. And when I made dinner, I had to sit down to do it. After 5 months of Anastrazole I complained again to dr. He took me off for a month. Then I started brand name Arimidex and I feel much better. I’ve been told that generic drugs like Anastrazole are made by different companies with different additives in them so they are not exactly the same as brand name Arimidex. And I believe that to be so. I’m definitely better on Arimidex than the generic Anastrazole.

  5. I was diagnosed in June 2014. After my surgery, I was on Anastrazole. In 4-6 weeks, I had a host of side effects – severe joint pain, insomnia, hair loss, hot flashes, painful intercourse and more. I thought I could tough it out but I got to the point where I needed a change. . After 10 months, my oncologist switched me to Exemestane. Things got worse. I lasted one month. I had a headache the entire time I was on it. My blood pressure went up. The pain in my knees and wrists and hands got worse. I had tingling in my fingers and my body and scalp started itching. The insomnia continued and then whenever I lay down, I started “hearing” my heart pounding in my ears. Who can sleep with that? And who can function with 2-4 hours of sleep night after night? Not me. The hope was that the side effects would decrease, but the opposite occurred. My doctor finally said just stop. I don’t know what’s next, but I am looking forward to feeling normal. The one thing that I don’t think will change is my hair. My hair has receded over an inch and my dermatologist says its alopecia. So it’s not just hairs that have fallen out. It’s hair follicles that are gone and my dermatologist says the probably won’t come back. I just turned 60 and HAD beautiful, thick hair. I’ve been off the med’s for just a few days and am beginning to feel better. I was so relieved when I didn’t have to do chemo, but aromatase inhibitors are chemicals that mess you up too. I have several friends who took AI’s for 5 or more years with no problems. I really thought that would be me, but it’s not.

    1. I also experienced rapid heart beat and coughing and wheezing and shortness of breath. I can deal with the other side effects but not being able to breath. Tried anastrole first for 4 months, off for 3 weeks, the the Dr put me on Letrozole and I had the same breathing issues and rapid heart rate. I have been off of it now for 10 days and the cough and wheezing is gone. Waiting to see the Dr to see what is next. Really frustrating when you know you have to be on something.

  6. Thank you for this blog Nancy! I don’t have anyone to talk to about the side effects and I’m sure my family is sick of my complaining so it is SO GOOD to hear that other women are in the same boat and hate these Ai’s! My Onc. just rolls his eyes at me, wants to put me on anti-depressents and basically thinks I am imagining things. I thought, “Yay – cancer is gone, chemo and radiation are over…I’m gonna feel great!”. I feel crappy like all of you – same issues. My job is using my hands – photographer, artist, graphic designer. My hands are in constant pain from any of these activities. I have tried all o.t.c. stuff but no help. Thank you all for sharing your stories – it’s good to feel like I’m not alone! Praying about going off although my family will be very upset. Sign.

  7. Thank you for a place to come to. I feel so confused about the AIs… but then, at this point, I’m pretty much confused about everything.

    Short story, a brain tumor in 1999 left me with cognitive impairment and difficulty with judgement and decision-making, just to name a few. In 2005 when my left breast microcalcifications were found on mammogram, I was not a candidate for Tamoxifen because it could stimulate regrowth of a brain tumor. Watched closely over the next ten years, this past February I was diagnosed with invasive ductal carcinoma. Had partial left mastectomy (about 1/3 removed) and six weeks of radiation.

    Started Arimidex about the same time I actually started a new and wonderful relationship. I tolerated the hot flashes but now, three months into treatment, I am noticing confusion, irritability and difficulty actually understanding what is bothering me. I have been on antidepressants since my brain surgery (Effexor) but I am starting to feel as though I am missing doses, even though I am not. Getting depressed, having trouble expressing myself.

    I’m a retired nurse and I recently read that estrogen plays an important role in neurotransmitters in the brain. I am surprised, though, that more people haven’t mentioned this in the literature about the side effects.

    I don’t want to lose this wonderful man and I also don’t want to stop the AIs if there is a way to see the light at the end of the tunnel.

    Has anyone else experience the emotional turmoil or is that possibly just due to my previous history?

    Help!!!
    Trisha

    1. Hi Patricia,
      I was encouraged to hear you had met a man! Emotional turmoil, I think you’ve been through an enormous amount and probably should be depressed, morose, curled up in a ball. I know I probably should be too. Its a testament to all of us that, despite the emotional turmoil, we soldier on, we weather the storm, we pick up and dust off and do our best the thrive.
      I’m a semiretired physio. I’m on Femara and have been for 2 years since stage 3a lobular left breast, double mastectomy etc. I’m also on my own with 4 kids aged 17, 15 and twins aged 10.
      The side effects of Femara are debilitating and it has been gradually worsening. Wrists, hands, feet, joint pain, fatigue, and now I was devastated to learn I was osteoporotic ….. despite doing everything I know to prevent it! I am on 6 monthly Prolia injections now.
      I try to work but only manage about 10 hours a week. I struggle with exercise. More recently I’ve really noticed the brain fog symptoms, like chronic chemo brain. It’s so frustrating when our brains have been so reliable before!!
      I’m looking up to see if these side effects are reversible if you stop taking AI’s, it looks like for some they are not.
      Interesting that Aromasin stops aromatase permanently – scary that no-one told me of that and pot luck I’m on Femara. Maybe I can get some ease of these side effects if I stop. I’m scared to stop though, so I empathise with you about the catch 22.
      Oestrogen and the brain, …. I don’t remember being told about this either, so no wonder the brain fog. With the insomnia, I was on Avanza which helped but I put on 10kg, so I’ve weaned myself off it and now taking Valerian with varied results. I might have to tolerate the Avanza so I can sleep.
      I’m probably spending an extra $150+ a month on supplements – glucosamine, fish oil, green lipped muscle extract, calcium supplements, anti-inflammatories, a menopause supplement,
      etc. I feel I have aged 10yrs in the space of 2!
      Ruthie

    2. Patricia, I realize I’m really late in responding, however I, too, experienced emotional turmoil in addition to neuropathy, bone pain, fatigue and severe nausea. I had IDC, surgery, chemo, six weeks of radiation and one year of tamoxifin. Onc has now prescribed AI (Anastrozole) and I haven’t been able to bring myself to take it. I’ve been off tamoxifin for about 5 weeks and feel better than I’ve felt in two years. I’m just not sure quantity of life is more important than quality of life.

  8. Hi Everyone. Thank you for this site. Long story but overview is right breast lumpectomy Dec 2013 diagnosed with ADH. On aromasin for 1 1/2 yrs. The first 6mos had horrible side effects. The worst was numbness down my left side. Shoulder to foot. Onc said give it a little longer. I did and most side effects passed. Left breast has fibroidadenoma at 11 o’clock. I’ve been keeping an eye on a lump I found a few weeks ago. Left breast upper outer area that day hard and pea size. 6 mos Onc appt is Tuesday. Yearly MRI was in April and yearly mamo is due in Dec. I see the surgeon every June and Dec and Onc April and October. All for ADH but better safe than sorry. Can a person still get BC while on aromasin?

  9. I’m on my 3 year diagnosis anniversary today! Yeay me! So had my annual mammogram on ms droopy to celebrate ( the other one is ms perky as partially reconstructed).
    I’ve been on tamoxifen for the last couple of years and am due to change to an AI anytime soon. I am so bloody sick of this stuff. Mega hot flushes, I can’t remember the last time I slept more than 2 hours on the trot, constant cystitis brain fog, weight gain….it just goes on. I’m also on Gabapentin for the hot flushes and it works to the extent that I don’t have panic attacks at the same time now. Also the version I’m on is Saltamox: liquid poison instead of a tablet. Lol.
    Do t know now whether to look forward to changing drug or dreading some all new side effects. I already have night cramps & joint pain. At least tamoxifen prevents osteoporosis. It’s just killing me via my bladder instead. Try sitting on a bus to work for 45 minutes with your ladybits screaming at you to find a loo. Same when I’m teaching 90 minute classes. I’m off to see my doctor in 10 minutes to find out about new antibiotics-sigh

    P.s after reading about ‘doing cancer all wrong’ I’m not sodding grateful, I’m peed off that all these male researchers can’t find something that doesn’t ruin our lives, after extending them!

  10. Im a one year survivor of estrogen positive breast cancer. Stopped letrozkle two weeks ago due to severe thigh feet and leg cramps and other side effects. I found out that i was dehrdrated and the and low estrogen can cause ghe cramps. Also a uti which is keeping me running to bathroom. So i jus t read an article about estrogen suppression and how it damages the brain. So im thru with the al drugs. Im young and i dont want my career and life affected by a drug. Just my two cents.

  11. I have been on Letrozole for about 3-1/2 years and have 1-1/2 years to go before my five years is up. I have done pretty good on it but have had some side effects that I am dealing. My hair has started thinning on top. I don’t know if it is because of the estrogen blocker or if it is inherited as I have some sisters who have not had cancer with the same problem as we are all getting older. Does anyone know after treatments from your oncologist, will your hair situation be better — that is hair to get thicker?

  12. I just turned 65 recently and am just about 1/2 way through my five years of taking an aromatase inhibitor.

    I had estrogen receptive positive breast cancer at 62 , a left sided mastectomy and 6 months of chemotherapy.

    Prior to starting the aromatase inhibitors and a few months after chemotherapy ended I was feeling good.
    I also am a Type II diabetic controlled by oral medication and diet and exercise.

    I have tried all three aromatase inhibitors all with bad side effects. I have settled on Letrazole for the last year and a few months. Many times I have talked to my oncologist about whether to keep taking the Letrazole; but I always
    decide to try and finish the recommended five year regimen. I am sure that I will not continue it after putting in the five years. Three other women in my breast cancer support group are also on this regimen and we all plan to stop at the 5 year mark. The joint pain is the most troublesome, its like I went from being a healthy pretty vibrant person to a stiff achy older woman . I feel like the Tin Woman from the Wizard of Oz; all my joints need to be oiled!
    I have significant side effects; hair thining and joint pain being the worst. I exercise regularly. The only things that make me feel better are meditation, exercise and being involved and engaged in something else so I can
    ignore it. The worst joint pain is in my hands; I have gone to hand therapy with an occupational therapist because two fingers were so acute I had trigger fingers and a steroid shot helped a lot. What is disconcerting aside from the pain is that I have lost strength in my hands; its very difficult to open things.
    At night I also get what I call an “icky” feeling it happens
    after taking the letrozole which I take at night with food. It is an icky feeling similar to what I sometimes felt when I was doing the chemotherapy but not as bad. My symptoms are much worse when I am tired. So really what works for me is doing things I love like hiking in the sunshine with a friend. The joint pains in knees or legs feel better as I move physically. Also any type of massage or touch to the effected area helps. I regularly use
    organic coconut oil to massage areas that are hurting and it really works on my mastectomy side as I still have some nerve type pain on that side as well as tightness.
    I think it is very difficult to separate what is definitely due to the medicine and what may be happening concurrently as I age. But it is very clear that the hair thinning and joint pain began with taking the aromatase inhibitors. The meditation and stress reduction group for people who have had cancer helps me tremendously.
    Learning to meditate and to focus on the parts of my body that feel good really helps.
    I also have t difficulty sleeping enough hours .
    I do take 1/2 of a sleeping pill trazodone every night but sometimes cant get even 6 hours io sleep. Many of these
    things are made worse by the aromatase inhibitor but also just from the trauma of being diagnosed with cancer.
    One thing I’ve been trying is to decrease my coffee intake definitely none later in the day. Also writing down
    before I go to sleep what I need to do the next day helps me settle down and be able to go to sleep. I also write down projects that I’m trying to complete . Then its like ok tomorrow I will complete some of the things on the list. Also I try not to be using screens (phone or tv) right before falling asleep but thats sometimes hard to do.
    It really helps me to know I’m not alone in dealing with the side effects of the medication. I plan to
    have a big celebration when the five years are up. The only reason I’m hanging in there is I know it
    decreases my risk of a recurrence. Also from information I’ve gathered when I stop at the five year mark,
    after a period of time the things I didnt have before starting the drugs like acute joint pain should go away.

    I’m prepared for the fact that it isn’t like all the side effects will immediately go away when I stop. I know this because I with my doctors ok did not take the aromatase inhibitor while travellng for two weeks out of the country.
    But I felt the same. So I am assuming I will need some time to get the drugs out of my system before there will be relief from the side effects. I try to give myself credit for hanging in there. What really helps is realizing there
    are significant reasons why I feel crummy and its a real challenge to not get overly focused on the discomfort. Also to not blame myself for feeling crummy.
    We are dealing with extra physical challenges and we need to give ourselves kindness and gentleness and to acknowledge that we have a hard row to tow. Also it helps me to remember each day what I am grateful for.

    thank you for starting this blog and here’s to the many strong women who are going through this!

    1. Hi Shelley, i’m new. Just trolling the net for info on Ai’s and found this site. I’ve been on my third ai. Started with arimidex 12 months ago. After 9 months of agony I was then put on tamoxifen, now on femara. I liked your post as it was not only thoughtful but encouraging. Your advice was exactly what I needed as I too agree with your attitude towards managing your outlook and acceptance. I had a mastectomy last sept. Also am dealing with CLL (a form of leukemia). I choose to go forward with this drug as the ultimatum, real or not, would chip away at my every day choice to enjoy whatever time I have………Chrissy

  13. I had a lumpectomy Nov 16, 2015 for stage 1 IBC, R breast at 1130 position. No lymph involvement. I am 70. I had 6weeks of radiation and am scheduled to start the AI March 30. Having second thoughts with my reading and research.

    1. Teresa,
      AIs decrease the risk of breast cancer recurrence by 40%. IMHO, it is in your best interest to give the medication a try. You may tolerate it quite well. If not, there are several different ones you could switch to until you find something tolerable. If you are in fairly good health, it is in your best interest.

      Another thing to keep in mind is that people that are unhappy with something seem to be way more vocal on the Internet. People that are happy often don’t take the time to share their thoughts.

      1. Thanks for your reply. My doctor says taking the AI will decrease my chance of recurrence by about 7-9%. I am already arthritic, have scoliosis, etc. I am in a quandary. Also, the hair loss makes it less attractive to me, shallow woman that I am. I agree that comments most always emphasize the bad side, though.

        1. Hi Teresa,
          I’m not sure what source your doctor is using for his/her figures. The article below is where I got my information. The 7-9% decreased risk of recurrence was what I was told about having radiation after my lumpectomy.

          Do what feels right for you though. Warmly, Kris

          **The what, why and how of aromatase inhibitors: hormonal …
          http://www.ncbi.nlm.nih.gov › PMC2228389
          by CJ Fabian – ‎2007
          The third-generation aromatase inhibitors (AIs) anastrozole, exemestane and letrozole have largely …. the relative odds of recurrence by 40% and relative risk of death from breast cancer by 34% (10).

          1. Thanks Kristie,
            My doctor also said “relative” also has to do with how old you are when you get cancer, and the reasonable expectation of life extension. My parents died in their early 80s. If I live to be 80 or 82, say, that would mean that if I get the side effects, about half the rest of my life would be deleteriously affected by this drug. And I see by previous posts that the effects start right away for some people.
            If I were 40 or 50, I would probably tough it out. In my 70s – I don’t know. I have a lot of thinking to do.

          2. Well I’ve been on Aromasin (exemestane) for just over 3 weeks. I had a bone scan before starting so we have a baseline. I had 2 months off tamoxifen over Xmas but the side effects never really died off, but I did lose 16lbs 🙂
            I’m playing Peak (brain training) every day as I read that AIs affect cognitive ability so lots of memory training. I’m a lecturer so I can’t afford to lose brain function.
            I have developed horrible neuropathy in the soles of my feet at bedtime so I’ve been massaging them and wearing furry socks, which seems to help. Back on the Gabapentin which is an anti epileptic but reduces hot flushes and the neuropathy and also on Omnaprazole for the god awful burning after taking my daily dose of poison. It was almost instant when I took my first one and I thought I was having a heart attack!
            I’m also taking Vitamin K, B complex and Calcium. Honestly, shake me and I rattle 🙂 I’m a lot more tired than when I was on tamoxifen, even had to sleep on a Saturday afternoon for about 2 hours, but I’m not managing more than 3 hours in one go at night.

            Drug names may be different as I’m in the uk, but the treatment is still the same :/

            I did have a laugh the other day. I read somewhere that if cancer of the penis was more prevalent then they would soon have developed an alternative to amputation. Lol.

        2. What did you decide Teresa, about taking AI? I’m new here, 73 years old, had left mastectomy in July 2016 and just finished 37 radiation treatments. The next step is to start AI, and I sure don’t look forward to weight gain, joint pain, loss of sleep/hair, etc etc…..already have those without being on meds! I also have some heart problems and this could make them worse from what I’ve read. I’d like to just live as simply as I can and I don’t want to live long and become a burden to everyone. My husband just passed in February and was in a nursing home for 2 years with Alzheimer’s, and many years at home before that, and living just for the sake of adding years, and not quality time, wouldn’t be something I’d want!

      2. Kristie said something interesting that those who are coping ok with AI are not out there complaining. I have been taking AI for one year. My onc did tell me the AI could affect my brain and she recommended that I sprint or run daily enough to get my heart pumping and my respirations going so that I pump a lot of oxygen into my brain. I have done this for one year now: I live on a dirt road that goes up and away and my mailbox is about 1/5 mile up the hill. I run up there and get mail and then I walk down doing some range of motion of my chest and arms on the way down. I have noticed that this has helped my outlook is more positive when I come home after this sprint and I noticed my legs and body toned up a little from this and I also love to watch nature and I watch the same spot year round with a spring starting half way up the road and going all the way past my house. The most exciting thing last year was about 50 tiny frogs were born one day in the creek. They were very switch and I tried several times to photograph them and finally I got ONE picture of a semigrown frog – the next day was a lot of rain and wind and all the frogs left the ditch and took off into the pasture— the whole thing was cool!!!

        I am reading here right now because I got a sudden laryngitis – cannot make any noise with my voicebox– happened really suddenly over two days and probably I just coght a cold but I hope it is not something having to do with AI affecting the nerves etc. I am going to the doc tomorrow and do what I can to stop this silence. Love to all of you and keep up the good fight– life is worth it!

        1. The 40% figure dies not compute in age. If I were 50, with expectation of Nother 25 years, I would seriously consider AI. I’m 70. The computations are different. My top percentage of safety is 7%.

        2. Hi, I just read Gudrun Scott’s positive report. It is so good to see someone like her to write and encourage all of us who are taking medications (estrogen blockers) which all do have side effects. I had a mastectomy on March – 2012. I am taking Letrozole. I have 13 more months to take it. This will make a total of five years of taking it. I do not like to complain about the side effects, and with the good Lord’s help, I am doing well. I thank him every day for my good health, and I pray cancer does not come back in my body, and I pray for all cancer survivors.

          Love To All Cancer Survivors,
          Gladys West
          Columbia, TN

    2. I elected not to take Arimadex and have instead done research on natural aromatase inhibitors such as cruciferous veggies, etc. since estrogen is stored in fat, I have also shed about 16 pounds which brings me to H/W proportionate level. I am walking quite a lot and climbing stairs – my Fitbit helps keep me on track. Was doing well until 3 weeks ago when I began feeling sick. I got progressively worse until finally my MD ordered an X-ray which revealed either late onset Pneumonitis or pneumonia in my right lung, from the radiation I received. I am now on Meds and hoping to feel better soon and back to normal.

      1. Hi Teresa,
        I am electing to not take AI’s as well. I’m 65, very active & healthy except for the IDC diagnosed in March 2016. 5mm X 4mm X 3mm tumor picked up on mamm. It was Stage 1A & both estrogen & progesterone positive. Had 4 lymph nodes removed & all were negative & remainder of tumor removed with clear margins. Surgeon also sent tissue to Genomic Lab for Oncotype DX test, a test that tells if chemo would benefit you and %’s of recurrence. I fell in the middle range which states “the side effects of chemo would outweigh the benefits” so no chemo. I had a lumpectomy June 6th & seed radiation with the SAVI 2X a day for 5 days. Now my Onc. wants me to start Arimidex. Personally I am totally against it as I wonder if the same would be true for the AI’s as is for the chemo in my case. We also researched a natural approach (which she is not sold on but is willing to accept) and came up with Quercetin and Resveratrol so far. She gave me some info she found online at Susan G Koman, but I found good info online on my own as well. Keep me posted on your success and what you are taking as natural precautionary therapy. I have an appointment with my Naturopath and am looking for a good Nutritionist as well. And PS I’m scared to death but even more afraid of a life with no quality.

        1. Lynda,
          It sounds as if you have a good outlook and a sensible plan in place. Congratulations for taking the lead on your own health care. Your IBC was about the same size as mine. I had two nodes removed that were both clear. I’m continuing my regimen of walking and eating healthy, which for me includes a teaspoon of Wasabi with dinner. It’s a powerful natural aromatase inhibitor. I use it as a dip (I add more water than called for) for my veggies. I had to search for the genuine wasabi; most that you see in stores is simply horseradish with green food coloring.
          I had a bout of pneumonia that I am recovered from now, and it was very difficult to find a pulmonologist who would take a Medicare patient (I’m 70). At first it was thought to be Pneumonitis from the radiation and I had a final X-ray last week to make sure it wasn’t. Haven’t heard back yet on that. My immune system is compromised by Sjogren’s Syndrome.
          It’s good to hear others’ stories here. Keep up the good work!

        2. I was diagnosed with invasive ductal carcinoma in February 2016. Had surgery and radiation. Stage 1, Grade 2, Er+, PR+, Her-. Also had Oncotype test which came back at 17. Did not need Chemo. Stared Arimidex on 7/14/16. First few days were ok. By the end of first week, the pain was unbearable. I’m 55 years old, but felt like I was 90 with severe arthritis. Not able to sleep, plus hot flashes. Went back to see Oncologist, and she made me feel so bad that I was having these side effects. Like my survival would give her Brownie points or something. She took me off the Arimidex and said to wait 2 weeks, then start Exemestane.

          I asked what the chances of recurrence were if I choose NOT to take the AI’s. She showed me a study that concluded that if 100 women had the same cancer and oncotype, had lumpectomy and radiation, that with no hormone treatment, 75 would be cancer free at the 5 year mark. If they gave all 100 women one of the AI’s about 1/3 of the remaining 25 women would be cancer free at 5 years. Is it worth it? Even with the horrible side effect, the best she can give me is 83% chance of being cancer free in 5 years.

          I told her I am willing to take the chance that I’m one of the 75%. Taking the AI’s still doesn’t guarantee that I will be cancer free in 5 years.

          I’m all for quality of life over quantity of life.

          1. I’m with you!!!! Same age, feel good, oncotype even lower than yours. My doc wanted me to take it, too, and I’m all about quality versus quantity, also. Don’t want to do it.

          2. Peggy, I am 51 years old, same diagnosis as yours in May 2016, after a prophylactic bilateral mastectomy and hysterectomy/oopherectomy performed because of BRCA2. Surprise! My Oncotype score was 21, barely inside the intermediate range, so my oncologist did not recommend chemo. I took Arimidex for almost nine months. I just dealt with the itching, insomnia, hot flashes, night sweats, and swollen, painful fingers. When the pain, stiffness, and swelling hit me in my knees, and I couldn’t even bend them enough to sit on the toilet, I said no more. I stopped the Arimidex on my onc’s direction, and saw her today. She wants me to try exemestane. I dread it. I’ve felt fantastic for the last month. I’m considering a natural protocol along with aspirin, which inhibits aromatase.

            I’d be put in a home at the rate I was going. I don’t want to live like that.

          3. Crystal, Exesmestane might be worth a try. I’m on it after stopping Arimidex which my body could not tolerate. I am doing better. Still hate it and have some issues, but I am tolerating it better. Each of us must determine what feels right to do regarding AIs, too. Thank you for sharing.

    3. Hi Theresa. I am 70 and am deciding whether to take an Al. I have the script but did not fill it yet. Did you finally decide not to take it?

  14. Your writing is so clear and helpful, Nancy. I’ve had a lot of the usual side effects from Tamoxifen. The worst are the hot flashes and the thickening of my endometrial lining which means I have painful cervical biopsies every year and am constantly worrying about getting cervical cancer. I also got quite depressed for the first few months when I first began Tamoxifen. I went off it after the first 2 years and switched to Arimidex but had horrible joint pain, so my oncologist switched me back to Tamoxifen within a few weeks. I complain about it, but I’ll stay on it, as all the data indicates that it will cut my aggressive cancer recurrence rate in half, so I’ll deal w/the side effects, for the benefits.

  15. Therefore ey next week. I promised my Naturapath doctor that I would go into this with positive intent. But I know in my heart that I will jump ship should AI’s compromise my quality of life. If you did the Oncotype test the effective rates are in that report too. Good health to you, sisters.

  16. Well i dont know what happened to my post. The first half went missing. I wanted to tell you about the web calculator that can help you determine your individual risk of recurrence with and without AI therapy. It is similar to the tool your oncologist uses. Risk of recurrence is based o your own cancer characteristics. Also if you did the Oncotype test, that will also tell you the benefit of AI. For me AI reduces my risk of recurrence bt 1.5 years or 7%. I could get hit by a bus tomorrow. I start my AI journey next week. Here is the Web link.
    http://lifemath.net/cancer/breastcancer/therapy/

  17. I am so glad someone has developed a site where women can talk about their experience with AI’s. I was diagnosed in 2012, grade 2/stage 2 estrogen positive breast cancer. Had breast conserving surgery with clear margins, I was given extra 4% extra chance of survival if I had chemo – of course I took it. Then 6 weeks of daily radiation. I was also given an extra 24% of survival if I took Aramatose Inhibitors – of course I would – one pill a day – so what! – look what I have been through – piece of cake! OMG! Chemo was easy compared to AIs. I tried them all. I had every side effect imaginable. The last one I tried was Femara (Letrozole). I developed my first urinary tract infection accompanied by a breast infection and put on anti-biotics, then my body developed a severe itchy rash that covered my torso abdomen and thights. It resembled molten lava and nothing relieved the itch. So bad I couldn’t sleep. The rash got so bad my skin hardened and my scratches didn’t even mark the skin. I was put in hospital because they couldn’t work out what was going on. They kept saying I must be allergic to the antibiotics and kept changing them but nothing was improving. I was nearly being driven mad and medical staff kept trying everything. No-one thought to check to see if I might be allergic to Femara. My husband decided to look up the product information leaflet of Femara (Letrozole) online. He rushed back to hospital and told me to stop taking Femara and got me out of there. Within a week everything had settled back down and the rash had disappeared. I told my Oncologist I had tried all AIs and my body just couldn’t take them. By now I had aching bones and muscles, fluid retention, bloating and digestive issues, vaginal atrophy and now a severe allergic reaction. My Oncologist was determined I be on something so he put me on Tamoxifen. First couple of weeks were fine but then I started to get wild mood swings bordering on bi-polar disorder. Had I stayed on this medication I would have certainly been “scheduled”. I had simply had enough. These medicationa were preventing me from getting my health back. Had I persisted I would have surely lost my sanity, my husband and any quality of life. I made the decision to cease taking them. I am still left with severe vaginal atrophy and persistent Urinary Tract Infections. I remember my Oncologist yelling at me as I left his surgery that “I could be dead in 18 months”. Well, that may well be true and I still worry every day because I made the decision to stop. If I do get secondary breast cancer then who is able to tell me it was actually due to ceasing AIs? No-one can, so we will never know. Currently, I am feeling really great. I have my health back and I am enjoying life once again. I am endeavouring to get my sex life back and have had my first Mona Lisa Touch treatment and feeling positive. I am also hoping this procedure will limit/cease my urinary tract infections. If that is successful then life as I know it has returned. It will be 4 years in June. I feel I made the right decision for me. Our physiology is different from one another. One size does not always fit all. I wish I could have been one of these women whose systems are able to tolerate the drugs. Good grief I went through chemo for extra 4%, why wouldn’t I take a pill a day for extra 24%? Because my body just couldn’t tolerate them.

    1. Hi Susan,
      How long were you actually on the AI’s? Do you suppose you got at least a few yrs. benefit at least? You see I too have developed severe allergic reactions to medications and I have described them exactly the way you did even ended up in Urgent Care. My Oncotype test came back that “the benefit of chemo would NOT outweigh the side effects” so no chemo. However, the results state chemo & Tam not just one or the other. Now my Onc. wants me to take Arimidex and even though I’m told not everyone has side effects I have yet to read of anyone who has not. It seems some just tolerate it because they believe they are getting some benefit in the long run and they don’t mind forfeiting their quality of life for that possible benefit. I am alone and wouldn’t survive if I couldn’t function.
      It is all very confusing for me as as there was no real answer. I wish you the best.

      1. Hi Linda. Some people have no trouble on AIs and I encourage all women to do their best to remain on them. However, I could not. I tried them all. Put them altogether and it would probably add up to 5 months. The side effects for me were harrowing. I am 61 and not prepared to suffer so horribly or lose my husband (due to wild mood swings and abuse). Now they are saying women need to remain on these drugs for 10 years!! Give me a break! I am 4 years post treatment and feel great. For me it must come down to quality of life, health, fitness, happiness and freedom from drugs. One of the worst things from AIs is vaginal atrophy – so a life of no sex as we canot use estrogen pessaries, urinary incontinence, stinging, burning and in some cases fusing of labias. Then of course there is the possibility of heart disease, bone fractures. agh! Being on AIs is suposed to lower chance of recurrence but it is certainly no guarantee. You really need to try Arimidex as not all women suffer these side effects. Good luck.

      2. It is confusing and the answers we get are also confusing. I think the treatments they have are very harsh. I had anaphylaxis with all of them. Now I am too scared to take anything! Nobody can give you a good answer. Nothing cures breast cancer. Good luck to everyone.
        There are so many websites for BC with people asking the same questions. We are not getting the help we need from our docs.

  18. I have most of the symptoms listed and see lots of comments about hair loss, but has anyone experienced facial hair plus lymphatic issues?
    I’m blonde so the facial hair didn’t bother me so much, but the hair follicles on the left side of my face and jaw keep getting full and leaking lymph fluid. I had some lymphedema in the effected breast that responded well to self lymphatic message, but it hasn’t help my face clear up. I stopped taking the Anastrozole 6 weeks ago. Does anyone have any tips for this? I’m not going back on this stuff until my face clears up.

  19. Diagnosed July 2012 early breast cancer 99% estrogen positive 70% progesterone. Stage 2; Grade 2. Breast conserving surgery, chemo and radiation then Aramotase Inhibitors. Could not tolerate Arimidex (had all side effects – found quality of life non-existant. Then came Letrozole. I ended up in hospital with breast infection, urinary tract infection and a dreadful rash from midsection to knees. The rash was so bad nothing eased it. It looked like molten lava – skin hardened and my constant scratching did not mark my skin. I was put in hospital to address the infections. Drs believed rash due to allergies to antibiotics – this went on for 7 days and I was being driven mad and no sleep – I had 3 specialists looking at me. My husband went home and looked up side effects of Letrozole and of course the infections and the rash were a clear indication of allergic reaction. He told me to stop taking them and infections cleared up and rash disappeared. I was left with severe vaginal atrophy and constant and persistent Urinary Tract Infections Last hope Tamoxifen. Although at a lower dose. All fine for first 6 weeks then all hell broke lose. Severe depression and then bipolar symptoms and extreme lethargy. I stopped taking them. I have not taken AIs for 2 years and I feel fantastic. I am still left with UTIs and Vaginal atrophy but having Mona Lisa Treatment – so fingers crossed. I am just one of those women unable to tolerate these drugs. I have decided to live a happy, fit and healthy life and let the chips fall. I life in fear of recurrence every day but if it does come back there is no guarantee I it would not have come back even if I were on AIs.

    1. Thank you so much for your post. I was diagnosed with BC in November 2015 and had a lumpectomy in very short order. The size of the cancer was 2.3 cm. and rated stage 2B. I had 20 treatment of radiation therapy in February and started on Arimidex in March. The side effects were terrible, including one scary episode where I almost drove off a bridge. After consultation, my oncologist recommended that I try Aromasin. It hasn’t been much better. I am good for nothing any time after lunch until just before dinner due to fatigue. I wish that meant I sleep at night, but haven’t been having much luck with that either. I have had a UTI, and am currently wearing a cam boot to encourage healing of either a stress fracture or an annoyed tendon which appeared following no event that might explain the injury. All the instructions say to maintain a positive outlook, but I don’t know how you do that when your quality of life has taken such a hit. And for 5 years! I have been considering giving the AIs up because at age 73, I am not sure how many years I have left, and I think my granddaughter deserves a little more than a droopy old grandma for however many there are. You have given me a great deal to think about.

      1. We go through surgery chemo radiation but the AIs just make life intolerable for many of us. I am at peace with my decision. My current GP and breast surgeon are on the same page as me. Although you won’t find an Oncologist who agrees as their only concern is cancer cells. That is understandable as that is their field. You may be comatose, depressed alone and divorced, crazy and suffer all other side effects Oncologists will always tell you to remain on them or try a different one although be careful as one AI has side effects that are permanent. Ultimately it must be your decision. My advice is, as always, try to temain on them as long as you can. Advice is 10 years now not five. Good luck. Sue

    2. I also had scary things happen. I took 1.25mg of letrozole. I am sensitive to meds, so decided to half it. My BP went up to 280/160 and my heart rate was around 120. I felt as though I was going to die. It lasted all night.They say that AI are better at curing cancer but people don’t live as long due to the toxicity. I only just started with this, so I feel scared. My onc is dismissive and gives me no help or info. His group is the only show in town. Plus, there are really not a whole lot of treatment options for early stage breast cancer. I am looking into natural AI. And yes. There are never any guarantees. Even if things go well, we will always have the thought of BC in our minds. That will never go away. Our lives are forever changed.

      1. Instead of taking the AIs, I have decided on the natural route and have looked up foods that are AIs. I have added these things to my diet and also lost 12 pounds with another 5 to go, since estrogen is stored in fat.
        Good luck, everyone!

      2. I had mastectomy 2003, with positive lymph node involvement and lymphnodectomy. At that time I believe Tamoxifin was the only Al ajuent drug available. Femara was still under study at that time, after 2 and half years I was prescribed Femara, which I have been on until the beginning of 2017, and have just been diagnosed with some type of lung mass. My side effects have been minimal, very thankful for Femara/Letrazole, and will go back on it tomorrow if doctor approves. I feel that I would not still be here if not for Femara. Once you have been on any drug for an extended time, I believe the side effects will be diminished. I took the Femara at night with an ibuprophen 800. Good Luck and hang in there. Reach for the stars.

        1. I know this may be personal but does it help with pain with intercouse? In suffering pretty badly, cannot have hormone replacement, and this is my only option but is not covered by insurance.

          1. I suggest you research as much as possible. Just google it. I have not had any libido for years, even before breast cancer so sex was not my main motivator to having the MLT. For me it was mainly to bring back vaginal health and stop urinary tract infections. In that regard it was successful. Having said that sex is not painful if I use lubricants. This procedure is expensive. If you decide to go ahead make sure an experienced well trained gynecologist carries out the treatment.

    3. Hi Susan Lynch
      I too had grade 2 stage 2 and have been taking aromatase inhibitors I hate them and hope to finish next year I don’t want to take them 10 years as some oncologists say to mine being one of them but the research is now going back to 5 years I am hoping she says this to me on my next visit. The drugs make my mind go crazy.

  20. Hi everyone, I have just completed my 5 years of Arimidex and was so excited to get my ‘life’ back…meaning no more joint/musculoskeletal pain, no more hot flashes, no more urinary symptoms. My last dose was March 31, 2016. My oncologist told me that it would take about 10 days for the drug to ‘wash out’ of my system. He also remarked ‘this is going to be a time when you will experience life as a real post menopausal woman.’ You see, after I had a recurrence in 2011, I had a full hysterectomy and started Arimidex. The 5 years of therapy was the hardest thing I have ever done. I had to take meds for pain, for depression, for hot flashes…you name it. My home became a pharmacy. But I did it and now, I am so let down. I continue to feel awful everyday since stopping my Arimidex. The bone pain, hot flashes and urinary frequency/urgency continue. The depression may have abated a bit, but lack of sleep is beginning to wear on me. I have my appointment to follow up with him tomorrow and I am so afraid of falling apart and telling him how disappointed and upset I am that my survivorship just isn’t panning out. I don’t want to be cast out into the world of ‘normalcy’ when I feel so bad. It is like I am scared to cut the apron string with my oncologist who has been my lifeline for 7 years total. Has anyone stopped their Arimidex and had this happen? What did you do? I appreciate anyone’s input 🙂 Thank you all, MAF

    1. I highly recommend Trazadone for sleep. It has been around over 50 years and was first used as an antidepressant. However, it caused everyone to become sleepy so it is now used as a sleep aid. I have familial and life long insomnia and have to take a very high dose – 200mg – every night but it a godsend. My SEs from Arimidex are terrible fatigue and lethargy. I also get foot and hand cramps but I have been blessed in that I don’t get the terrible joint and bone pain. My 5 years on Arimidex will end in July. Yea! I wish you well.

  21. Hey!
    Don’t know how I happened upon this site, but, I sure am glad that I did. Have been on Arimidex for 2 plus years. And this noise is kicking my ass.
    I came down w/stage 1 invasive breast cancer in one part of my breast and DCIS in another part of the same breast and (during surgery) they discovered that the invasive cancer was working its way into my pec muscle. After a bilateral mastectomy and 35 rounds of radiation they prescribed Arimidex. I thought I was lucky because it’s considered “The Gold Standard” of too many Oncologists who have never had to take it.
    I am a fitness Instructor and taught through my whole stupid cancer deal. Yep. Taught 10 classes a week throughout 35 rounds of radiation only to be grounded by some hormonal remedy that has left me hobbled and bedeviled by own body. Unnecessarily so I think. I am not alone in the confusion, bewilderment and muted reprehension of the doctors who prescribed this to us.
    Just like the drugs they happily prescribed to me a decade ago…that Estratest and Progesterone that I was told 2 years ago were nothing more than throwing Gasoline on on a growing cancer,
    I don’t sleep. I teach my classes. My body hurts and I lurch about trying to walk like a normal person. Try not to look like Arimidex has kicked my ass. It hasn’t anymore because tonite I stopped taking it and I’ll never throw that noise into my body again.
    Thanks for being here!

    1. Lynn, Welcome. Glad you found my blog too. Please remember this forum is not medical advice. Opinions and experiences are shared and welcomed.

  22. Hello ladies,
    So happy to have found this site! I’ve been feeling so confused and frightened by what I’ve been reading about AI’s since my breast cancer diagnosis and surgery in May/June of 2015. After my diagnosis of DCIS in my right breast at 11o’clock, and 1 month of radiation afterwards, my oncologist brought up the AI issue. I politely declined after much research, much to her dismay. That was September 2015, 8 months ago. Everyone I know, including Dr. friends and family members, have been letting me know that I should reconsider. I just turned 65 in March. My own Oncologist mentioned that the AI’s could impact my quality of life, mentioning the bone and joint pain and that it could age me! Also that she had patients who said they felt like they were 85 instead of the age they were. So I looked at her and said,”who in their right mind would take a drug that would do those things and more???!!!” She told me my chance of recurrence within 10 years was 17%. I told her I preferred to look at it as 83% chance it would not. But now, with the pressure mounting from everyone, I’m meeting with the Oncologist on May 26th, to discuss this issue again. I still do not want to put this poison in my body, gain weight, lose more of my hair, feel bone and joint pain, (as I already have osteoporosis) and the rest of the awful side effects. I can’t understand why these drugs can’t be made without side effects! The pat answer is, ‘ all drugs have side effects, even aspirin.’ Well, aspirin isn’t going to make me old before my time, and ruin my quality of life! I’m still at odds with it all as you can see. I am however, moved and touched by all of the brave women, who’s stories I’ve read on this wonderful site, and I wish and pray for all of us! Thank You Nancy!

    1. I too had all these same concerns after reading the comments here. I’m almost 60, had stage 1 in right breast this past December, did intraoperative radiation (great alternative), no chemo. I have debated this issue with my oncologist but relented. Have been on arimidex since January. I have really had almost no side effects. No joint pain, no hair loss. I’m fatigued but I keep exercising and such, still working, so I’m working through it. I’m declining other medications so far for osteoporosis, trying to keep up calcium, Vit D, exercise, all the things I can do to stave it off. If it gets to the point that I have to take 3 medications to counteract this one, I may stop. So you might want to give it a try, see how you feel.

    2. Susan — please pray and ask God (in Jesus Name) to do the right thing. I have been taking Letrozole for 4 years now. With God’s help, I am dealing with the side effects wonderfully. I only have 1 more year to go to take the medication.

    3. I, too turned 65 in March. I was diagnosed with mucinous adenocarcinoma in January and had a bilateral mastectomy in February. My oncotype indicated that chemo would probably not benefit me, nor did I need radiation because of the mastectomy. My oncologist wanted to put me on Al also, and I declined. Then she talked me into trying it, and I agreed, but have yet to open the bottle of pills. With all that I have read, not just here, I feel it’s sort of like Pandora’s box. I don’t know what’s in it, but I’m afraid to find out. I feel really good now, have had 65 years of a good life (aside from losing my husband 1 year ago to Glioblastoma multiform, stage 4..brain cancer) and I don’t think I want to risk feeling like hell because of a pill. You sisters out there who are brave enough to take it, I truly hope it does what it’s supposed to do. I hate hearing what you’re going thru while, at the same time, trying to live your lives, raise families, work and just plain survive in this world we’re in. Positive thoughts to all of you!!!

  23. Hi Linda,
    I am so happy to hear you haven’t endured any of the horrible side effects from the AI you’re taking. You are a rare bird indeed, and blessed! My DCIS was so small, about a quarter inch, did not breach the Sentinel nodes, and I had clear margins after surgery. A month of radiation followed recovery from surgery. I just don’t understand why AI’s are necessary when you’re told the cancer is gone! I feel like the Dr.’s are covering themselves! Big Pharma needs to develop non-toxic alternatives to what is the ‘standard of care’ they keep telling us!

    1. My oncologist even said in a couple years they may change the protocol for lower risk patients like us: small tumors, clear margins, no lymph involvement. I was totally ready to stop if I had a lot of side effects, but so far it’s ok. Good luck

  24. On April 18, 2016 I had surgery for Stage 1A ER positive breast cancer. Tumor was 7mm, margins were clear and no cancer in lymph nodes. Oncologist is suggesting radiation and Aromatase Inhibitor. After hearing about all the side effects, I am very nervous about taking an aromatase inhibitor. I am 57 and am thinking of taking my chances and not taking it. I’ve been reading about a lot of natural cancer fighting foods, including garlic tumeric and plant based diets, fruits and vegetables. No processed foods, no processed meats, less meats and dairy. I also read that flax seed could help instead of taking an aromatase inhibitors. Has anyone tried flax seeds instead of the medication?

    1. Some of the info I’ve read indicates flax seed has natural estrogen in it so you may want to watch it. I am almost in the exact position as you. I struggle over whether I need it. No bad side effects so far, been on it since January. Good luck

    2. Kathy, I have a naturopathic oncologist (she works with my regular oncologist), who highly recommends flax seed. I started adding the ground flaxseed approximately 3 weeks before my lumpectomy (this was for stage 2b). The odd things is that prior to the surgery, my tumor was measured at 4.2 cm (both MRI and ultrasound; it was not visible on mammogram), but after surgery, the actual size of the tumor was 3.3 cm. I don’t know what else to attribute the decrease in size, other than the flaxseed. In addition, I sailed through radiation with almost no side effects. No burning, no fatigue, only a little redness/itchiness. I had read a study about mice/radiation and flaxseed, and since I was already taking it, I figured that this was not the time to stop. Did it make a difference? I am not sure, but the radiation technologists said that they had not seen anyone come through as well as I have. Even my radiation oncologist was shocked (pleasantly, for sure).

      The thing that most people don’t know is that while flaxseed does have an estrogenic effect, it is not the same thing as estradiol. “Lignans, which are the type of phytoestrogens in flaxseed, can change estrogen metabolism. In postmenopausal women, lignans can cause the body to produce less active forms of estrogen. This is believed to potentially reduce breast cancer risk.” There are so many positive articles about flaxseed, on the internet, I think any woman who is ER/PR positive should read about it.

      I, too, refused AIs, but for me the reason is different. I have been without ovaries since the age of 21. I only took hormones for about 5 year. None of my doctors can explain how I got ER/PR positive BC in that scenario. While, like every other woman that gets breast cancer, I still worry about a recurrence – local or distant. I have horrid joint pain now, likely because of being without ovary-produces estrogen/progesterone for 42 years, but I walk, eat cruciferous vegies, eat flaxseed, and take turkey tail mushroom extract every day. I can’t imagine wiping out every last shred of estrogen in my body. We have it for a reason, even if it does come back to haunt us, later in life.

      1. Hi Glenda. Good post. I too have read much about the benefits of flaxseed. We produce about 4 kinds of estrogen in our bodies – most of it very beneficial – so it never made sense to me to block them all. Combination estrogen/progesteron hormone replacement is given to women who still have a uterus as estogen ALONE may cause uterine cancer. However, if you have your uterus removed you can be given estrogen only hormone replacement deemed perfectly safe as it alone does not contribute to breast cancer as opposed to combination estrogen/progesterone. When I was going through menopause my periods were so bad I couldn’t perform my duties at work and I was having to have a lot of time off work. I had a high profile position and many people relied on me. I went to my Gyno and asked he remove my uterus – it was superfluous to my needs and served no purpose. Removing my uterus meant i could remain well. He refused – saying “we don’t remove perfectly good organs” and told me hormone replacement was safe and put me on combination estrogen/progesterone. I only took for a short time until I got through menopause but within 2 years I had breast cancer. In retrospect I should have gone with my gut feelings, my own researach, and doctor shopped until I found a good doctor. It wasn’t long after I got diagnosed with breast cancer that a young female doctor who is a regular on a local morning tv program said on national tv that she intended to have her uterus removed when going through menopause and then go on estrogen only therapy as with the uterus removed it is perfectly safe and it will protect her from estrogen depleted diseases such as esteoporosis, heart disease etc. I will never forgiven that Gynocologist.

    3. I was wondering if you started on the AI. I’ve been on since January. Horrible fatigue has set in and at this point I have backed off and am taking it every other day. No doctor suggested this but it seems to work with much less side effects. I refuse to have no quality of life. I could barely function. Just wondering.

      1. Hi Linda (reply to post June 11). In regard to taking Ai every other day. My Oncologist told me every woman is different, her physiology is different – one size doesn’t fit all. He told me, and I don’t know how true it is, but according to him there have never been any dosing studies done. Because my body reacts so bad to AIs he put me on a very low dose – 3 a week but after 7 weeks on even low dose the side effects came back. I can only deduce my body doesn’t process these properly and they build up.

    4. Since I know someone who died because they preferred natural cancer fighting foods to medication, I would think very seriously about this. Not everyone suffers from AI’s. And my mother took Tamoxifen for five years with no side effects whatsoever. You should at least try the medication your oncologist recomments – since it’s over four months since you wrote here, I hope you did!

  25. Hello Gladys,
    Just read your note to me, and I greatly appreciate what you said. I have been praying to GOD, not just for guidance with this, but with any major issue I’ve encountered in my life thus far. I have prayed for Health and Longevity for my family , friends and myself for most of my life, asked for any sign that taking this poison would be the right thing, but to no avail. I feel GOD has no part in this. HE gave us the ability to make our own choices, good or bad. Unfortunately, I can’t seem to come to terms with this choice! I still pray every day and night for whatever it’s worth. It’s just not helping. Thank You though, I pray you come through all this with flying colors! Your faith is obviously stronger than mine. GOD BLESS!

  26. I’m so angry at Drs and people in general telling me be grateful your alive. Had lumpectomy 2012 and 40 rounds of radiation. My tumor is Estrogen receptive stage 2 10mm left breast. Started on the AI Sept 2012 and at first I as just trying to recover from the surgery and the shock of having breast cancer. Within 6 months the side effects started kicking in and they kicked with a vengeance. Bones ache, joints ache, frickin ringing in my ear, vertigo, dry mouth, insomnia, fatigue, weight gain, 3 herniated discs, depression, hair loss and inability to concentrate on anything and I’ll forget what I was talking about or thinking about if I pause or get distracted. All of my Drs just look at you like your crazy gave me anti depressants which did nothing. Oh yea what is a sex drive cause waking up in a pool of sweat is sexy. You can’t tell your family or friends they think your a hypochondriac. I’m 55 and don’t have quality of life. I have my bi annual appt with my surgical oncologist Monday and have no idea what I have to do or say to in order to get help. It took me six months last year to convince my GP that I was in excruciating pain on the left side of my chest and flank, he finally referred me to GI Doctor and I had gallstones so I got that lovey gift of having another surgery. Before my cancer diagnosis I had only been in the hospital 2 times to give birth and my annual gynecology checkup. Thanks for providing a place to vent and also realize I’m not crazy and no I’m not lucky cause it could have been worse.

  27. I was on Letrozole for about 4 months before the side effects became intolerable. I had a list a page long and I could hardly move. My oncologist told me to take a 3 week break and see what happened. Nearly all the symptoms left and I had my quality of life back. So he put me on Exemestane. I’m only a few weeks in, with much milder symptoms. We’ll see how that goes in a couple more months. If I can’t take it, he will try Tamoxifen. If that destroys my body and quality of life, I’ll go drug free. I’m 60 this year and don’t want to waste the last of my strong years.

    1. I had a lumpectomy wand intraoperative radiation for a small, infiltrating ductal carcinoma. My margins were clear as well as my nodes. I have started on Arimidex with much trepidation. Because I also have some osteopenia my oncologist wants me also on Xgeva. That also makes me very nervous. I have been taking the Arimidex for just over three weeks. I have been tired, but not all the time. My sleep hasn’t been great. I am waiting to see how I react to all of this. if the side effects are really bad, at 66 I will really have to consider if it is worth it. My husband is 73 and we want to enjoy the years we have to be active. I appreciate all the comments I have read here. I do see there is a great spectrum of experience but still a strong common bond

      1. Congrats on the beginnings of your survivorship! The Arimidex side effects did not even start until I had been taking it for 3-4 months. It was so strange, one day I was so stiff all over that I could hardly walk. It managed to get a little better with some meds from my onc. I have finally completed my 5 years of therapy. Unfortunately, I am now weaning off of these pain meds which has been unpleasant. I wish you the most in health and happiness!

      2. I had very similar type of cancer. It took a few months to get any side effects and then the fatigue was debilitating. My oncologist wants to prescribe other meds to take care of the side effects. No, I don’t want that. I am very careful with what i eat, i exercise. More pills is not the answer for me. I’m taking the Arimidex every other day at this point and I can deal with much less side effects. No doc told me to do this, just how i chose to deal with it. Would be interested to hear your experience.

  28. I was diagnosed with mucinous adenocarcinoma of the breast in Jan 2016. Had bilateral mastectomy. Oncotype of the tumor showed 13% chance of recurrence, and indicated neither radiation or chemo would be necessary. Aromatase inhibitor has been recommended, which would give me a 9% risk of recurrence. I’m 65, and lost my husband last year to Glioblastoma Multiforme Stage 4. Aside from these past couple of years of hell, I feel amazing. I’m really hesitant to take something that sounds like it’s gonna make me feel like ____. My thought is that, at 65, why would I want to feel crappy and maybe extend my life a little, without the quality I have now. This is a great site! Thank you for all the input you guys have shared. I got the rx for Arimidex filled, but don’t know if I want to take it. Reading many of these comments, if a person takes it, even for a little while and experiences symptoms, will they reverse after stopping? My oncologist knows I am hesitant, so said to try for at least a month, then if I don’t like it, I can try one of the others, going thru all 3 within 3 months. I have the fear that ANY of these symptoms may last forever, even if I stop. I feel so grateful that I didn’t have to have radiation or chemo, almost to the point of feeling guilty because so many have to endure that. I just want to stay feeling good. Anyone ???

    1. Hello Laurie,
      When I discussed this (see my post above) with my onc, she indicated that with our low risk of recurrence, it could be that in a few years they won’t even recommend an Arimidex or the like for us. I just couldn’t take the fatigue. I too eat right, exercise, try to be super healthy. My onc was astounded that I had not gained 20 pounds in first 3 months. What? No. And I too do not want to take 3 more pills to counter side effects of first pill. I try to be positive about all this and grateful, but I don’t want to ruin my quality of life. Good luck.

    2. Arimidex (Anastrozole) is reversible. That means if you stop taking it, the symptoms will go away. There are two kinds of AI’s, one kind is reversible and includes Letrozole and Anastrozole, and from my own experience as well as medical literature, if you stop taking it the side effects go away. The other kind (Aromasin) is not reversible.

  29. I am so glad to find this! I just wrote a letter to my oncologist asking about what benefits I am reaping by taking these AIs. I was diagnosed with stage 2 ER positive cancer in 2009. I underwent double dose chemo first (some confusion if I had inflammatory BC), a bi-lateral mastectomy, 35 days of massive radiation and had my ovaries out due to family history. I flew through chemo, riding my bike every day. I didn’t notice any side effects from the radiation so am amazed to find myself crying “uncle” due to some hormone pill. Like a lot of you, I feel like a decrepit old woman, hobbling around with a balding head and vaginal changes. I’d like to here how this improves my long term prognosis. Not sure how the cancer would recur since I have neither breast nor ovary left. I’m 56 years old and want to feel and act my age.

    1. Hi Paula. You haven’t said how long you have been on AI’s. Diagnosed in 2009 means you would have completed your 5 years. All we can do is take advice from our Specialists and if they tell us to take something to improve our chances then we feel required to take that advice. We have no other point of reference. However, ask 3 different Oncologists your percentages for survival and you will get 3 different answers. I was surprised to learn the software model used to determine my percentages did not include things I thought important such as node involvement; vein involvement etc. Breast cancer can come back in the bones, brain or liver, not just breast and ovaries and if it does it is usually terminal. My short venture into the land of AIs was short-lived as my body revolted against them all. I am 4 years post diagnosis and doing well off them. However I worry most day because of how insistent my Oncologists were that I be on them. But at some stage we have to weigh up advice, quality of life. Good luck.

    2. Your body still makes estrogen. In your fatty tissue and your adrenal glands. Eating foods tainted with estrogen ie meat and dairy. I can’t take these meds due to anaphylaxis, but they sound scary! I already have osteoporosis. I have heard that bisphosphonates are protective against bone mets and also statins appear to help.
      We can land on the moon, build ridiculously tall buildings and connect in a mindboggling way via technology and yet we can’t find a cure for cancer? Gimme a break!

  30. A side effect that is not often mentioned is depression. I was on Letrozole and gradually became clinically depressed, to the extent of almost wanting my life to be over. One oncologist said I should just stop – I did, and very quickly was back to my old self. I was transferred to another oncologist because I was proclaimed healthy, and she was quite opposed to stopping medication, but changed me to Anastrozole. I find that it doesn’t depress me as badly but just makes me a little sadder and less energetic on the whole. I take a week’s break now and then when life gets too hard, and am amazed at how the “old me” surfaces, basically happy, singing inside, full of optimism. I am wondering if unhappiness isn’t as unhealthy as having estrogen.

    1. Hi Judy. Yes it is a dilemma. And something only you can decide. It seems to be unanimous among Oncologists that women stay on Aramatose Inhibitors for min 5 years. Most now saying 10 years. I applaud any woman able to serve out their sentence. At the very least it provides you with peace of mind you are doing what the specialisys say is your best chance. After the side effects I suffered i just couldn’t get my hand to put that pill in my mouth. Finally I had to submit to what my body was telling me. Of course I worry every day of what the consequences of that decision may be but I am at peace with my decision. Good on you for persisting. You are doing the right thing.

    2. I am in a situation where I am severely allergic to AI’s and tam. I have attempted to contact my onc, but to no avail. It’s been going on 2 weeks and no response. I did call his nurse who sighed (she knew exactly how deeply to sigh) but was unable to help me. To my knowledge, there is nothing else to support hormonal BC. So, even though this is an unpopular topic, I have turned to diet and natural AI’s. I try and walk a lot and think of my new grandbaby instead of BC. The aforementioned meds are not a magic bullet. They don’t cure. I have seen so many posts about how miserable they make you feel. Arrogant oncologists, toxic meds. Even with cancer, women my age are more likely to die of heart disease. So I’ll bulk up on endorphins and do the things I enjoy whilst I am still able.

      1. I too had to drop AI’s. And I worry every day but the price of staying on them too high for me. If I get secondary BC there is no way of knowing whether that would have happened anyway. Good luck

      2. Good idea. I am eating natural aromatase inhibitor foods such as kale, wasabi, cruciferous veggies, greek yogurt, green tea, blueberries, etc. I try to limit meat. I have lost 12 pounds and will lose 5 more since estrogen is stored in fat tissue.
        Hoping for the best,
        Teresa

        1. I stay away from foods with added hormones, so I stay away from dairy and meat. I have some powdered wasabi, but it tastes very odd and not at all like the stuff which is mostly horseradish. I eat lots of bok choy etc grapeseed extract and mushrooms because they are supposed to be powerful AI. I stay away from all soy……just in case. I drink Mamma Chia and I use a lot of quinoa. I steer clear of GMO’s. I’m sure worry doesn’t help, but I tend to do a lot of that!

          1. Anne, thanks for your information. I, too, eat mushrooms and read online that they should be cooked. Also I use the powdered wasabi. It needs to set for about 10 minutes before eating to taste like wasabi. I mix it loose (about I tsp) and use as a dip for my veggies. After reading your post I was thinking I should give up or limit my Greek yogurt intake. My other daily dairy is half and half for coffee and that would be hard to give up. I would have to find a different morning drink! Maybe Ovaltine.

  31. Hi,

    I am so glad to hear this latest information about Letrozole as I have been taking it since May 2012. I only have 8 months more to take it. I was told I would take it 5 years. Glad to hear the side effects are reversible. Thanks!

  32. Hi. I’m glad I found this website. Does anyone have a problem with peripheral neuropathy while taking ALs?
    I had a lumpectomy in Dec, 2011 for Stage 2B ER positive lobular cancer of my left breast. No chemotherapy but I did go thru radiation therapy. I was on Letrozole from May 2012 to May 2016 but developed Osteopenia ( I now get a shot of Prolia every 6 months) and bladder irritation ( burning, urgency problems etc – I believe this is due to the thinning out of the estrogen dependent tissue in the lower part of the bladder). I also developed sleeping problems and irritability. My Dr change my AL to Exemestane last May because of the bladder burning I experienced every time I took the Letrozole. I was told that at the 5 year mark they will do genetic testing on my cancer to determine if I need to stay on ALs longer. Here is my main problem, I have a peripheral neuropathy called Charcot Marie Tooth Disease. It affects my lower legs, feet and hands. It is a slowly progressive disease causing a weakening and growing numbness of these areas. The last few months I have felt I was going down hill quickly as far as my stability is concerned. I even went so far as to get lower leg orthotics last month to help my balance and worsening foot drop. This past May I spent a week walking around London resulting in some fatigue but now 4 months later I have a hard time walking from my car into a store! I had assumed it was the disease process but upon investigating Exemestane more fully, from what I can gather, it can cause peripheral neuropathy in 30% of those on it. Whenever I am prescribed a medication the first thing I say is “is this medication neuro toxic?”. I am upset with myself for not being more proactive in doing my own research but also in believing my Dr when I was told it was okay to take! Has anyone had any experience with neuropathy from taking these drugs? Thank you for letting me vent!!!

  33. I’m disturbed that so many of the comments here seem like an encouragement not to take AI’s. Not everyone has side effects! Not everyone has thinning hair! I would like to emphasize that there are two kinds of AI’s: reversible and irreversible. I have taken Letrozole (which led to awful depression) and Anastrozole, which leads to much much milder depression which can be overcome by getting more exercise. But each time I stopped, I was back to my old self within a week. I’m taking a short break from Anastrozole but going to go back on it soon – just keep getting a lot of exercise.

  34. Fabulous site this. Honest and current and if more of an “advertisement” to not take AIs, well, so be it. The doctors prescribing it are mostly male and not taking it themselves and are only human – not all-knowing gods never to be questioned.
    I was diagnosed with IDC April Fools day 2014. Started the journey with chemo in attempt to reduce the size of the tumour and give me more surgical options. First good idea that did not work. How could I tell? Very scientifically. The tumor was on-board and not reducing in size and I still have side effects from those drugs and all given to help with the side effects.
    Surgery happened November 2014, bilateral, no reconstruction. Pathology showed ER/PR positive (8/8), grade 3, micro mets in one of three nodes (SN biopsy only). Then some healing and then 30 rounds of radiation.
    One of the many doctors that has passed by my file told me once this disease will not kill me. I am beginning to agree but the treatment may.
    First a year of aggressive treatment, then a year of healing and yes, I am still here living but not living well. I am really struggling with recovery. Why? Due to the hormone therapy.
    I had a toxic reaction to tamoxifen. The first AI, Letrozole caused all the usual SFX but the personality altering as the worst. Have been on and off the anastrozole for a few months. More SFX: rash, trigger thumb, tendonitis in wrist, worsening of lympadema, (all in the dominant hand) etc., etc. Now the onc wants me to try exemestane..
    Thank goodness I found this site. To know that the SFX of it are not reversible is the biggest takeaway.
    I am single with no insurance/inheritance. If I can not work, economics are an issue. I already have quit two of my jobs. The impaired function of my dominant hand is putting the final one in jeopardy and AI #3 adds insomnia and vision changes. I already have trouble walking, sleeping, working, using my hands, To be more blind and sleepless. Na ah.
    I will research the natural AI options and maybe try one more time, every other day on the anastrazole (I like that idea actually). If problems persist, well, I am done. Quality of life is more important to me than quantity. And add the weight gain that is impossible to shed while on the drugs (up 20 lbs in 3 months), well, the best thing I can do for myself is get rid of the estrogen mfg plant around my middle.
    Thank you to everyone who has written here. Good luck to us all. Asking questions is the best we can do for each other and all those that will come down this path next.

    1. Hi April…So sorry to hear of your troubles. You certainly are a trooper. I was diagnosed in March 2016 IDC. Had lumpectomy, 4 lymph nodes removed, no sign of cancer after surgery. Oncotype DX test came back intermediate means side effects of chemo would outweigh benefit but I had a SAVVY put in after surgery and went twice a day for 5 days for internal seed radiation. Then my docs wanted me to take the AI’s but after reading side effects I decided not to. I am taking Chrysin OTC from holistic pharmacy it does block estrogen I am getting hot flashes but not sure if that is from the chrysin because I never stopped getting hot flashes after menopause! Will be doing more research on the chrysin because if the hot flashes are a side effect, it may be possible it will cause the other side effects that AI’s cause.
      I do feel I am one of the lucky ones. When I left the hospital I was cancer free I have to believe I will remain so with ALL my diet changes. I have totally gone “clean” eating and IT IS HARD, completely different than what we are lead to believe is “safe eating”. I didn’t eat badly before just trusted in the food manufactures, growers etc. I am even changing all lotions, soaps, hair care, good grief everything. Some think it’s overkill but I don’t know what else to do considering I still haven’t even “tried” the AI’s. (Filled the script, read the insert, was horrified, had nightmares, then put the intact pharmacy bag into my cabinet where it remains today!) While I’m alone with my 3 dogs in this world I found I wasn’t alone in my battle and decisions. I found this blog and don’t feel quite as “alone” now.
      I wish you the best with all your decisions and with your tenacity to find your own cure. I repeat, you are a trooper and I know you will figure this out, as I will. I wish you peace with your decisions, the fear is the worst part.

  35. Finally,,, now I know why my hands are so sore and numb especially during the night..
    Been on a AI for 8 months and I have done the tomoxifin for 4 years prior. I dont have other huge problems but I do hot yoga almost every day and I think that helps.. weight is up but the scale is in the garbage so I dont know the number… love these posts ladies..

  36. I have a question… since i just learned from this site that the AI im on is the non reversible one.exemesane. I think i want to discontinue or change… ive been on it 8 months.. hope its not too late to get back some estrogen..do you know?

  37. I have been on Anastrozole for almost two years now and my bone pain has slowly been getting worse, especially on my fingers. I mentioned this to my oncologist together with the slight nausea I felt on occasions, the insomnia, tiredness, etc. Trying to be helpful, she put me on Aromasin(exemestane). After having taken it for just over a fortnight, I started getting terrible hot flushes/sweats, having strange nightmares and dark depression moods….. I got quite scared and anxious that the depression of which I suffered about 30years ago might be back with a vengeance.
    I think I could endure becoming a physical cripple but not a basket case, so this morning I went to see my GP and implored him to put me back on the joint/bone crippling drug. Better the devil you know…….

  38. I am having my ovaries out on 2/28 to avoid Tamoxifen but won’t get out of Arimidex. That is the one they said they would put me on. I have heard horrid things about Tamoxifen but it sounds like the AI’s are just as bad. Kinda dissapointed to hear that. I am still gonna do the ovary removal or multiple reasons. I am also waiting on my BRCA2 results. ( during radiation I found out one of my Aunts who passed away from cancer was BRCA2 pos.) I’ve already had a partial hysterectomy for other reasons 2 years ago. Have any of you been offered Effexor or Welbutrin to help with side effects? My doctor mentioned it might be good while I am thrown into surgical menopause.

  39. Kathy – Yes I am taking Effexor and it’s been a life saver in terms of reduced hot flashes & depression during and post menopause. Tried Wellbutrin years ago and though I have no allergies, developed hives from that, so that stopped that! Everyone is different but I would suggest you try Effexor to get you through the worst parts. Best wishes to you

  40. Hello,
    I appreciate this site and the first hand accounts from Nancy and others who have also experienced AI’s. After my surgery and radiation last year, I’ve tried anastrozole (generic), then name brand Arimidex (some discussion on http://www.breastcancer.org cited problems with fillers in the generics so I tried name brand through the manufacturer website as my insurance rejected the “name brand” drug) then I attempted letrozole.

    ENOUGH! My quality of life was destroyed and after being off the last drug for about 3 weeks, I’m slowly getting some relief. However, I must say that the debilitating side-effects of these AI’s (joints – hands, hips, feet – diarrhea, weakness, sadness, etc – I have a long list), have yet to heal. My fear was that I would not be able to recover from the damage being caused by these drugs. The first drug caused carpal tunnel that I had to have surgically treated. I’ve also had cortisone shots in my back due to the joint pain. There’s more, but basically, it’s been a completely negative experience for me and my biology – in fact, greater than I ever imagined and I don’t think the doctors and nurses quite get it.

    If I would have known this would happen, I would have opted for mastectomy. Ideally, it would be helpful if researchers could come up with a test to see how a body will react to these drugs before we start making all these decisions about surgery, radiation, etc. I did the oncotype test and got a 44. I fear I’ll get another cancer, but I certainly cannot live with these drugs. I’m not being offered any other options at this point but I choose to live comfortably rather than all crippled up with what was essentially poison for me.

    I understand this is my own experience and all people are different – but I just wanted to share to let other women (or men) know they are not alone if they cannot tolerate these AI drugs.

    Wishing you all strength and perseverance through your journey.

  41. Hi Nancy,
    I was searching for help from someone on the internet and I found you. I have been taking arimidex for 1 1/2 years. I am at my breaking point. I cried reading part II. I was reading about myself and the way I feel right now. I am so thankful to know that I am not alone and loosing my mind. I had the same diagnosis and treatment that you had. After going through the worst time in my life I was feeling better until I started taking arimidex. My bones and joints hurt, I don’t sleep, I walk like I am 90 years old and I feel helpless. I used to be very happy and social. I am 59 and miserable. My life has stopped and my poor husband and two sons see me very depressed. I don’t think I can do this little white pill anymore but afraid of recurrence. Why can’t these doctors find better ways to treat us after going through such an ordeal. Thank you for your blogs. God Bless us all that are suffering.

  42. Thank you so much for your website. I just wanted to add my two cents. First of all I want to tell you that I feel humbled and uplifted in the presence of all you warrior women who have written in and I feel like I shouldn’t even be complaining because what I have experienced is NOTHING compared to what all of you have gone through. I am writing just to make myself feel better, I think. I was diagnosed with ADH (atypical ductal hyperplasia) about six months ago. I had an excisional biopsy and my surgeon said afterwards “well I am done with you now, but if you want I can refer you on to an oncologist for a follow up”. This scared me to death because up until that point I had been told “you don’t have cancer, you don’t even have pre-cancer, you have some cells doing some weird things”. Well of course, I said refer me to the oncologist. When I went to see the oncologist she acted as though I was wasting her time by being there and passed me off to a n.p., who told me I wasn’t a high enough risk to do genetic testing, but she did do the Gail quiz with me. She said the quiz showed I was at a 2.6 % chance of developing breast cancer in the next five years and recommended I go on Arimidex. As I said earlier I was scared to death (my mom is a 6 yr survivor of colon cancer and I lost my boyfriend to liver cancer), so I said “yes, I will take anything that reduces my risk”. About two weeks into taking Arimidex, I started having the worst trouble with hot flashes, night sweats and insomnia. I am 53 and had already gone through menopause, but these side effects were like menopause x 100. I quickly started noticing brain fog, loss of memory, I was performing poorly at work, I would start a sentence and three word sin forget what I was going to say, my vocabulary reduced tremendously, my poor hubby was suffering (your partner cannot get out of bed 6-7 x a night without you being effected), I had dry mouth, dry eyes, my skin looks like the Sahara desert, I couldn’t get up off the toilet without pushing myself up, I got a terrible case of acne and a rash from being out in the sun, and my only concern, day in and day out was “can I get a nap in sometime today”. And sex? Forget it, the first time we tried after I started the drug I sat in the tub afterwards and cried my eyes out because it hurt so badly, then developed a UTI due to the dryness. At my first follow up appt, (3 months in) I told the n.p. about my symptoms and she prescribed an anti-depressant “to help me sleep” and to use coconut oil for my vaginal dryness. I was NOT depressed, but after starting the antidepressant I DID get depressed and slept even worse, if that was possible. I got to the point that I didn’t want to go to bed because I knew I would just be up again in two hours dripping wet, sick to my stomach, and then would have to start the long process of trying to get get back to sleep all over again. I stopped taking the antidepressant after a couple weeks. Last week I was sitting in my office talking to a client and about 10 minutes into the meeting I couldn’t remember the client’s name. That was the last straw for me. I stopped taking Arimidex the next day. I am terrified of making the wrong choice and how I will deal with it if I develop breast cancer in the future. I have talked with my hubby and with God about my choice and I have decided this is the right thing for me to do for now because my risk is so low. It’s been a week ago today that I stopped taking Arimidex and the results are strange but encouraging. I started sleeping better (4-5 hours at a time as compared to 1-2 hours) within a couple of days. I have only had 2-3 remarkable hot flashes since stopping (by remarkable I mean I didn’t have to get a towel, ice pack and fan out). I am having some terrible hormonal mood swings (like being on your period) but what can I expect when I really haven’t had any estrogen in my body for six months and now I have it flooding back). I go from crying to wanting to rip someone’s head off to laughing and happy. I am still sleepy, but it is more of a washed out feeling like when you are on your period than a bone-numbing lethargy. Today I woke up with no joint pain, so I am hoping that in a few weeks most of the side effects will be gone. Everyone must make this decision for themselves, but for me, it is about quality of life at this stage in my game. That would be different for me if someone said “you have cancer”, but for now I would rather lead a productive, happy life than walk through my days as a zombie.

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