The Dark Side of Aromatase Inhibitors, Part 2

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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The dark side of aromatase inhibitors, part 1
The Dark Side of Aromatase Inhibitors

 

 

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

  1. Hi Nancy,

    Hormonal therapies are the drugs we love to hate, that’s for sure, especially since estrogen acts on so many systems in the body – bones, brain, moods, skin. What’s difficult is how much women vary as far as side effects and what solutions for side effect management might work.

    I only want to make one important point as far as AI’s are concerned: the difference in their use in prevention vs. treatment. Right now my prescription for Femara (letrozole) is the one thing standing between me and cancer progression. So from that standpoint it an amazingly powerful drug. And it may be hard to believe but these are actually an improvement over some of the earliest estrogen suppression agents — megace was one of them. Substantial weight gain is one of the lovely side effects associated with that drug.

    I sure wish we had better solutions and we can continue to advocate for them. Right now the choice is between a rock and a hard place.

    1. Jody, The drugs we love to hate – so very true! I am grateful these drugs are around, but I wish we had better options. Thanks for adding your insights, Jody.

    1. Catherine, Yes, although I wish we didn’t have to learn about some of these things… thanks for reading. How’s tamoxifen going for you?

  2. Nancy there are so many issues when it comes to the side effects of hormonal therapies. These medications have lots of side effects yet at the same time as Jody pointed out, when it comes to these meds, they can really help keep estrogen positive tumors from growing. The side effects can be intense and when it comes to megace, all I can say is for me that was the worst of all of the choices. I think there needs to be a balance of oncologists understanding and explaining the benefits while also being honest about the side effects. I agree with Jody when she wrote that these meds are between a rock and a hard place because with estrogen positive pathology they definitely can keep tumors at bay.

    1. Susan, I agree with you about the balance thing. My experience has been that my oncologists have not been very concerned about side effects or helpful in directing me as to how to best cope with them. They’ve suggested I see an endocrinology – which I may do at some point, but frankly, I’m tired of adding specialists to my list of doctors. For now, I’m sticking with my PCP, who’s been great. Thanks for commenting.

  3. I understand that AIs prevent cancer from returning or progressing (if you have Stage IV cancer)….. Until such time as the cancer develops resistance to the AIs.

    However, do AIs actually *cure* cancer? I thought they did not. They retard recurrence (if such is to take place) or progression, but will not eliminate any stray cancer cells that may have escaped the more acute phase of your treatment.

    And I have been on letrozole for 3 years, 4 months. Join pain and muscle pain, yes. Those are the biggies for me. Thinning hair, yes. Weight gain, after I had dutifully lost about 65 lbs after my diagnosis. And loss of bone density. Yup. I’m right there.

    1. Brenda, The purpose of AIs in the context of my post is to prevent recurrence. They do not cure anything. Thanks for sharing. I’m sorry you’re “right there.”

  4. When discussing AI’s, it is also important to note that 5-7% percent of the population have a hyper metabolism in the P450 family. I had Tamoxifen for only 3 months as I was one of the 5-7% of populus with a CYP2D6 polymorhism and the Tamoxifen started to quickly cause havoc in a very healthy uterus (I had a pap smear same month I started Tamo and all was perfect) had a total Hysterectomy in May 2012 and in Sept 2012 had a scan to the lumbar which reported small mets to L1 and L4 and just this past May had an abdominal ct scan due to vertical pain in right side and found a small 5mm tumor in left lobe in liver, I am still on Arimidex but obviously it is not working for me-it say’s in the Arimidex insert that if Tamo did not work for a patient then neither will Arimidex in some cases so I am guessing my Onc will move me on to something else come August after my next ct scan results.

    1. Theresa, I’m sorry about your mets diagnosis and also about your difficulties with Tamoxifen. I hope your oncologist moves you to something that is effective and not too harsh. Good luck with things. Keep me posted.

  5. Thanks for taking this on, Nancy. I wasn’t aware that aromasin was permanent. Interesting distinction. As much as we hate them, their existence is a good thing. I think a lot depends on whether, as Jody pointed out, they’re being used as treatment or prevention. Looking forward to part 2.

    1. Julie, I wasn’t aware of a lot of things before starting on an AI! I agree, it is a good thing these drugs are around and I try not to lose sight of that. This is why I will be switching to Aromasin because I don’t want to give up on the potential benefit. However at the same time, I have to be able to walk while on it. Thanks for commenting.

  6. I was at one time or another on them all The last being Tamoxifen.
    Arimidex was the first I had experienced such severe bone and joint pain I was nearly crippled by pain. Then came Femarra and Aromasin. the horrendous symptoms never abated only becoming worse. I had to make the best decision for myself factoring in all of the potential consequences. What outweighed more was the Quality of my life was become less and less when I live in continuous pain. I agreed to try Tamoxifen as a last resort Like Theresa I developed problems from the start. I never had Polyps or dysplasia or any of the potential precancerous issues. It went from Normal readings to off the chart with the likely possibility of developing Uterine Cancer, Next we are talking removing my Ovaries then a total Hysterectomy, then not because I have severe Hypertension I stopped everything. It is now 2 years since I stopped I have no regrets Sometimes we really have to balance everything and take your overall comfort in making decisions. I did what was best for me. I have had many negative comments that I should have withstood the pain, suck it up.. I went from being physically active, riding my bike more than 150 kms per week till barely being able to walk. That’s not the kind of life I wanted. I still have difficulty but not to the degree it was..

    1. Alli, It sounds like your body just couldn’t handle any of them. I sorry about that, but I’m also glad you made the best decisions for you and that you have no regrets. I understand about that guilt that seeps in sometimes. I even feel guilty for going off for a short time. We do the best we can and that’s always good enough in my book. Thank you for sharing, Alli.

  7. After 4.8 years of tamoxifen and 3 D&C’s, I finally developed complex endometrial hyperplasia with atypia–a high grade premalignancy, and had to have a complete hysterectomy.
    If only my oncologist had read the ACOG Bulletin–she left the gyn issues to my gyn and no one seemed to understand just how high my risk was: it’s the first thing that comes up when you google “tamoxifen and endometrial cancer”
    http://www.acog.org/Resources%20And%20Publications/Committee%20Opinions/Committee%20on%20Gynecologic%20Practice/Tamoxifen%20and%20Uterine%20Cancer.aspx

    Other data suggest that low- and high-risk groups of postmenopausal patients may be identified before the initiation of tamoxifen therapy for breast cancer (17–19). Pretreatment screening identified 85 asymptomatic patients with benign polyps in 510 postmenopausal patients with newly diagnosed breast cancer (16.7%). All polyps were removed. At the time of polypectomy, two patients had atypical hyperplasias and subsequently underwent hysterectomies. The rest were treated with tamoxifen, 20 mg/d, for up to 5 years. The incidence of atypical hyperplasia was 11.7% in the group with initial lesions versus 0.7% in the group without lesions (P <.0001), an 18-fold increase in risk. In addition, polyps developed in 17.6% of the group with initial lesions versus 12.9% in the group without.

    So, it wasn't the 1% risk I was quoted. And now that 10 years of tamoxifen is being pushed, I read a quote from the study author that women will die from tamoxifen induced endometrial cancer, but more women will be saved from breast cancer deaths, so those deaths are acceptable.

    A death from an iatrogenic second primary is acceptable.

    1. Kira, Thanks for raising some valid concerns. I’m sorry about all you’ve had to deal with. I guess we do have to keep in mind that science and medicine is about statistics. Sometimes this is disturbing as you pointed out so clearly. Thank you again for commenting.

  8. A wonderfully informative post on AIs. I was on Aromasin, which I tolerated until I could no longer tolerate it. Crippling bone and joint pain. And I have bone loss that could be due to the AI or the chemo or both. My oncologist put me on Femara, but the pain was still excruciating, so I was taken off for good.

    Part of me has felt like a failure for not toughing it out, but I just couldn’t handle it anymore. I tried to do whatever my doctor recommended, but it hurt me more than helped me, I believe.

    My onc told me that this class of medications were not the right one for me.

    1. Beth, I’m sorry about all the pain you endured. I didn’t realize the pain could be cumulative, but I guess that’s no surprise really. Reminds me of chemo side effects… I’m sorry you had those feelings of guilt too. I understand about that, as I mentioned in my response to Alli’s comment. I’m glad your oncologist was understanding and supportive. Thank you for sharing.

    1. Eileen, I don’t think that sounds strange at all. So you aren’t on any drug at this time then? I’m curious if you feel like sharing. Thank you for commenting.

    2. Nancy, that is correct. I’m not on any drugs. When you’re triple negative, there’s nothing more they can do in terms of medicine. Since I finished chemo and rads, I’ve just gone in for periodic diagnostic mammograms, do the self-checks, and am obliged to report any strange pains that might indicate a recurrence or metastasis. Quite honestly, just the aftermath of chemo has been plenty to contend with. My heart goes out to everyone who has to deal with that, and the side effects of the drugs you mentioned. It’s not like I don’t do anything. I juice regularly and do other natural stuff to try to keep my immune system and overall health strong, at least as much as is within my own power.

      1. Eileen, Thanks for the additional information. In a way, it must be kind of nice to not have to deal with more drugs, but then there’s nothing nice about any of this cancer stuff. And I know what you mean about the chemo aftermath… thanks again for sharing.

  9. I was post-menopausal due to hysterectomy (not for cancer). After FBC stage II, had chemo, lumpectomy & radiation, then placed on Femara. The good news: No evidence of disease. I do have pain and swelling in many of my joints. I cannot wear my rings, My feet & ankles make it difficult to wear shoes other than sandals. I am on Weight Watchers, & watching my weight fluctuate despite healthy eating. Increased appetite, aching, unable to walk for exercise now due to pain. I can so relate to many of you.

  10. Nancy this is a great post and you do a great job explaining the intricacies of AI’s.

    I will have been on Tamoxifen for 2.5 years this October, when I will be switching to an AI (I was peri-menopausal at time of diagnosis and haven’t had a period since. I guess the news that I had BC shocked my ovaries into submission!) Though not thrilled with the SE’s of Tamox (weight gain, lethargy, hot flashes, lowered libido), I accepted them while suffering through them. At least I had a pill I could take. I have not heard of anyone who takes an AI who hasn’t had crushing side effects, so I am rather hesitant to make the switch, even though my onco tells me the AI will be more beneficial in stopping the estrogen uptake. He wanted me to start this spring, but I asked for 6 more months on Tammi (who would have thought I would be begging for Tamoxifen?). I kinda feel like Tammi is the devil I know, ya know? But I will be the ever-compliant patient and will make the switch and suffer the consequences. Which still are better than not having any options. That’s my spin and I’m sticking to it! 😉

    1. Renn, I think there actually are some women out there who don’t have many side effects, but where they are I don’t know! ha. It’s funny you are “begging” for more Tamoxifen; well, not funny, but you know what I mean! Again, I agree having these drugs is better than not having them, but still, I can’t help but wonder why we can’t do better… thank you for sharing. And be sure to let us know how your switch goes this fall.

  11. Modern medicine is wonderful, but it all comes with unwanted side effects. Arimidex was torture for me with severe joint aches and pains. It even gave me carpel tunnel syndrome (yes, a side effect listed)and I got off it after several months. Aromasin was a pleasure compared to that, though I didn’t sleep well for years. Finally med-free because after five years my doc saw how bad it hurt my bone density and took me off. Now I’m on bone-building meds (Fosamax) so we’ll see what lovely side effects that brings. Yes, everyone reacts differently, but I say, if it is too painful to take a drug, it’s just not worth it. Ask your doc if there’s an alternative. Quality of life is most important.

    1. Bethany, I’m sorry Arimidex was torture for you too. I’m encouraged by your experience with Aromasin, maybe I’ll get lucky with that one. And a good night’s sleep, what’s that? I’m glad you’re med free now, but too bad about the bone loss. I’m dealing with that issue too now. Thank you very much AIs. Bottom line is quality of life matters for sure and every person must do what feels best. Thank you for your thoughts on this.

  12. Tamoxifen was a joy compared to the SE’s from Arimidex. My body seemed to play nice with Tamoxifen but perhaps that’s why I had a second ER/PR+ primary BC. Have been on Arimidex for almost a year (with monthly zoledex inj) and have recently started conversations with the onco team about considering making a change to one of the other AIs. If Arimidex is the best med for me I’ll suck it up but I”m really ready to ache less.

    1. Anne, It’s interesting that you found Tamoxifen to be more tolerable. Good luck with those conversations. I hope you find one of the other meds to be less harsh; that’s certainly what I’m hoping for too. I know what you mean about sucking it up, but these side effects are no small matter. Thanks for sharing.

  13. Thanks for all the valuable information. I am on my 5th year of survivorship and don’t know whether to continue with my very expensive Exemestane, 25mg. or stay med. free,hoping and praying that I don’t suffer a relapse of my estrogen related breast cancer. My Oncologist hasn’t been much help and I am confused as to risk stop taking what I have been on for 5 yrs. and hope and pray that I can continue to stay cancer-free. Any suggestions would be much appreciated.
    Nancy Williams, Proud Member of ABCD, Milwaukee, Wisconsin

    1. Nancy, I’m not sure what the research says about staying on AIs more than five years. I know there has been discussion about staying on Tamoxifen longer for some women. I am sure about this though – if you’re feeling confused about things, you and your doctor need to keep talking and you should feel free to keep pressing for some answers and guidance. Sometimes talking to a different doctor can help. Good luck with things.

  14. I have taken an entirely different approach to the whole issue of AIs. To be honest, they make me very nervous. They shut down the entire trickle of estrogen in post-menopausal women. And, even 5 yrs ago when I was first diagnosed, that gave me pause.

    See, just a year after menopause I was already osteoporotic. The first medical oncologist I saw was determined to prove that I was wrong about my diagnosis (How wrong can you be when your doc’s office calls up and says, Hello, we got the results of your first bone scan. You have osteoporosis and we are putting you on Fosamax. The prescription has been called in) and she was determined that, since the guidelines called for an AI, she was going to put me on an AI. I opted for another oncologist. She also wanted me to be osteopenic (and to be fair, I was all over the borderline – -2.4 to -2.75), but I told her I wouldn’t do it; so she prescribed tamoxifen for 2.5 years. My bones stayed stable for that time.
    When I saw her again, she told me she wanted me on an AI, as she doesn’t like having post-menopausal women who have not had a hysterectomy on tamoxifen for 5 years – she is concerned about the side effects. I refused. I no longer see any oncologist.

    But here is the deal – I had a 1.5 cm tumor, highly ER/PR positive. Low Ki67 – so low that they refused to do the oncotype test, as no one was going to give me chemo (except the idiot nurse coordinator, who kept giving me the outdated advice that anyone with a tumor over 1.0 cm had to have chemo. Finally stopped talking to her) My margins were almost as big as the tumor, and there was very little DCIS, all in a cluster around it.
    So, I looked at the statistics for my grade (1) and stage (1) – 12%. And saw that all the results were for women who had early – stage BC – in other words, stage 1 to stage 2, and grade 1 to grade 3. I know that if you divided us up by grade and stage, that there was a range of outcomes, and that my stats were artificially high, while someone who had been diagnosed with stage II grade 3 was artificially low.
    And I said no. And I don’t see any oncologist any more.
    In the 2.5 years since then, I have kept my eyes on the research – like, the study that showed that 5 yrs of AIs did not yield a longer life span than no AIs (heart attack, anyone?)
    And my osteoporosis, which got more severe, has now been diagnosed as the result of hyperparathyroidism, so my bones may now be healing. I may get back to osteoporotic. My endo and I have discussed the possibility of my going on Evista, but right now she has me on Prolia – I am still too young to have osteoporosis.
    I am comfortable with this decision – I believe it is right FOR ME.
    Not a standard response, but one that I believe should be more common for women with a small, indolent tumor.

    1. Sue, Thank you for your comprehensive comment. I’m glad you’ve made decisions you feel are best for you. That’s always the bottom line isn’t it?

    2. I am so glad I came across your blog. I stayed away from blogs during my treatment as everything is different for each of us.
      I was diagnosed with Breast Cancer in 1998, stage I – then found lymph node involvment. I did two course of nasty chemo, then on to radiation, followed by about 3.5 years of Tamoxifen, next 10 years on aromatose inhibitors. I did develop cardiomyopathy from chemo and bone density issues and weight gain. After 10years, I went to my oncologist this week and we stopped the aromatose inhibitors, am I nervous? You bet I am, but am also anxious to see if weight issues change. My doctor plans on follow up over next couple of months. Thank all you ladies for sharing your experiences.

      1. Patti, I’m so glad you came across my blog too! Welcome! Wow, 10 years on AIs is a long time. I understand about your nervousness. That’s only natural. Good luck with things from here on out. Thanks so much for reading and taking a few moments to comment. Again, welcome!

  15. I have been on Tamoxifen since Feb. of 2013. I have had quite a few side effects that have not been pleasant to say the least. Some of the main side effects have been swelling in my hands and feet. I have now been prescribed lasix and potassium supplements due to the swelling. I have also experienced joint pain especially in my hips and knees. The main issue for me has been extreme vaginal dryness to the point that I tear very easily. Not fun.
    The fatigue has gotten better for me the longer that I have been on the Tamoxifen.
    I am afraid to stop taking the medication though. My tumor was 98% estrogen “driven”.

    1. Debbie, Gosh, I certainly understand about the nasty side effects. I hate the cycle of med taking that sometimes we are forced into. There are some things you can do about the vaginal dryness, so talk with your doctors about them. I’m glad your fatigue has improved – that’s something! Good luck going forward. I wish you all the best. Thanks for sharing.

  16. My cancer was 100 % ER/PR positive (and I also had a very low ki-67 score). Tamo is most effective for patients like me, so I have been taking it. I had all the side effects mentioned – weight gain, loss of libido, wonky toes, sleeplessness, achy joints, but nothing that I wouldn’t put up with to avoid death. However, I recently took a 6 week break, started feeling better after about 2 weeks. Now I’ve gone back on Tamo and guess what? MORE weight gain – arrrrgh! Since weight is a risk factor for cancer, I’m beginning to wonder if I could do just as well by going off the drug and shedding the extra body weight….

    1. Kate, I remember that you were taking a break. It’s interesting that you started feeling better and this is a good thing, because then you know your suspicions were true. Like you, I plan to go back on, but it will be a different AI. I am hoping a change-up might help at least for a while. You know, Kate, I often wonder that very same thing… thank you so much for sharing.

    2. Hi Kate, thats amazing that you were allowed take a break. I wonder too about the weightgain. I am year 2 on the arimodex and boy oh boy it;s tough, am not sure about it. I liked your comment about the weight gain, would we be better off? good question, let me know if you dont stay on it and what happens.

      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.

  17. Where does Faslodex (fulvestrant) fit into the mix? Is it considered an AI? I know it is used to treat Stage IV E+ breast cancer due to its impact on estrogen.

    1. Barb, Great question. I am certainly no expert here, but I don’t think Faslodex is considered to be an AI. AIs block estrogen production itself where as Fasoldex (and also Tamoxifen) block the effect of estrogen on hormone-receptor-positive breast cancer cells. And you’re right, it is sometimes used as a treatment for certain kinds of stage IV cancers, as are all these drugs. Thanks for the question. Please ask your doctor if this is something you’re really wondering about.

  18. Nancy, very well written post. I don’t prescribe hormonal therapies, but I do see many women frustrated with ongoing side effects from them. True for what I do as well with radiation.

    In both types of treatment, the hard part is balancing the risk/benefit. Highly individualized, and only possible to work through sometimes with frank conversation, patience and data. Chemotherapy, hormone therapy and radiation are adjuvant treatments (meaning postsurgical for risk reduction).

    So what is the value of risk reduction? It’s worth reassessing as treatment continues. For radiation, it’s more compressed but when I see patients on treatment I may modify treatment length or sequence to make it more tolerable. Most oncologists are open to doing the same with hormone therapy.

    1. Matthew, Thanks so much for sharing your thoughts on this. Finding that balance can be really tough sometimes and you’re so right about the need for those frank conversations. The trouble is, too many women aren’t having those conversations due to many reasons, but suffer in silence and too many doctors aren’t taking the side effects issues seriously enough, or even asking about them. I certainly understand about the need for risk reduction and I am trying my best to stay on the AIs as recommended. Thanks again for chiming in here. Your patients are fortunate to have you.

    2. I have stage IV breast cancer spread to my lungs. I was on Letrozole for three months but now my cancer has spread to my liver and bones so they have started Faslodex injections. My question is why can’t I stay on the Letrozole as well to get a double effect?

      1. Cate, I’m not in any position to answer your question, Cate. I’m sorry your cancer has spread. Hopefully the Faslodex can keep things in check. Keep me posted. Thanks for reading and posing the question.

  19. I’m 99.9% ready to go off Tamoxifen after 1.5 years+ (my bad…I’ve been in such denial and indignation with BC that I don’t keep these milestones in my head). I’ve not have the debilitating side effects so many have reported but certainly, the hit to my libido and weight gain have been my issues. Both are extremely devastating to my ego as I had just gotten remarried when I got the Dx and then the ensuing weight gain after being in peak shape was a frustration, too. I’m not really making this choice for frivolous reasons….my philosophy is to live life on my own terms and quality of life trumps. My definition of quality of life dictates my choices. Everyone needs to make their own.

    1. Mary, I understand your feelings and frustrations. I assume you’ve discussed them with your doctor, but if not, please do. No one comes to any of these decisions for frivolous reasons; they’re far too serious for that. Your philosophy is a good one and yes, everyone has the right to make their own best-informed decisions/choices. Good luck with things and thanks for sharing.

    2. Thank God somebody else finally understands my issue with the allowing AIS to eradicate my sexuality. I refuse to allow that to happen. It’s such a huge part of who I am as a woman and to allow that to be taken from me would devastate my quality of life. I just can’t do it.

  20. I’m glad I found this web site. Nobody believes my problems are related to my pills. I have many problems with leg cramps, my back cramps all the time and now I’ve had them in my arms, I’ve been wondering if anyone else has these problems what they do to help them. My feet were in such pain I could hardly walk. They told me they didn’t know what caused them or how to help. if anyone has suggestions please let me know.thnks

    1. Shelly, I’m sorry about all the side effects you are experiencing. Please discuss them with your doctor and don’t settle for non-answers.

  21. Nancy,
    They tried me on anastrozole first and not only did I have all the typical side effects (hot flashes, bone pain, diarrhea, etc.)but I suddenly had very high blood pressure, dizziness, and heart palpitations. So now I am on femara. Not nearly as bad, but not exactly good either. My oncologist has me on Celebrex for the bone pain (I already had arthritis so it is a higher dose than I used to take), a sleeping pill for the insomnia, and e-string for vaginal dryness. Since I had a recurrence, he has also put me on faslodex shots. I had inflammatory breast cancer, originally stage 3, but then stage 4 after recurrence.

  22. What I would like to know is what happens to women who stop taking a prescribed AI? Are we more likely to have a recurrence?

    I have stopped taking Arimidex because of high blood pressure, vaginal bleeding and cataract growth that my eye doctor assures me is related. Have had the usual
    hot flashes, sleeplessness, etc.

    I am trying to weigh whether or not to resume treatment, as my oncologist says it confers only about a 2% life-expectancy advantage for me.

    So, is there anyone who knows of statistics bearing on this question?

    (Thanks, Nancy, for the helpful blog).

    1. Teri, Great question – I’m not sure of the answer/statistics on this. I think this is a relatively new area of study since these AIs have not been around all that long. I think each case is so individual. Therefore, your oncologist might very well be right. Ultimately, you have to weigh your own personal risks with the benefit(s). I know this is hard because I’ve been doing the same thing of late. Good luck with your decision! Keep me posted.

    2. I would like to find out the advantages of anastrozole vs. nothing.

      These side effects I read about in this blog seem to be rather serious; especially when one needs to take other potent drugs to alleviate them. Some of these drugs have other serious side effects.

      I feel great and can exercise and stay thin which might be more important for avoiding breast cancer. (New or recurrence).

      Still contemplating to take or not, that is the question…??

      1. Ilene, I had this exact conversation with my oncologist at my last appointment. I point blank asked him if I might be better off going off all AIs in order to make weight management easier, rid my body of all the nasty side effects, have less joint pain, etc. etc. He was pretty adamant about me staying on if at all possible, as have been all four of my other oncologists. Ultimately, the decision is yours, but I would encourage you to try Anastrozole and see what happens. You can always switch to another AI or go off later. You might be lucky and experience few or at least mild side effects. Good luck!

    3. The way my oncologist described the statistics for BC recurrence are the percentage advantage of using Aromatase Inhibitors over using five years of Tamoxifen, not using nothing at all, if you have ER+ and/or PR+ breast cancer. My BC was 98% estrogen positive, so my doctor emphasized that I really need to take either and AI or Tamoxifen for a minimum of five years to get the most benefit from the anti-hormore treatment. I also am postmenopausal w/o a uterus (mine was removed when I was 43 due to huge fibroids. I did have one functioning ovary, but that has not produced much estrogen for 8 years.
      This said, it is still an individuals decision to chose to stay in treatment or not. If you have significant others in your life, they need to understand the option you are choosing so they can support your decisions.

  23. I am sting the tamoxifen because I have no life pain in legs awful dizzy feel to weak to walk some days can’t go shoping or any thing dare not go out because I will collapse my life as stopped my husband and I are divorced he couldn’t stand the way I am he said I wasent the same person he is remarried shock to me chemotherapy also changed me my memory is fading I have given tamoxifen a good try nearly two years can’t carry on I am in bed most of the time to weak to get up but I promies I will let you no how I go on my legs won’t carry me to painfully I am hoping now I have stopped it to go to being normal has I have been so depressed I felt I would be better of dead it is given me the depression real bad it is no life for iam stoping it and start enjoying my life for how ever I have left in life life is to short to be bedridden permanent and that is what is happening so I am better off taking the risk better to enjoy life it is worth the risk or be bed ridden because I have to many side Efffects forgive my spelling can’t remember I am sure cancer patient will under stand my decision I would be better enjoying what life I have and it means no tamoxifen angela

    1. Angela, I really sorry about all you’ve been and continue to be grappling with. I’m hoping you have someone to talk with about your issues, especially the depression. Please bring this up with your doctors. You don’t have to suffer alone and in silence, not so much anyway.

  24. Debating whether to go on (aromatase).
    . Does any one have no side effects, and if you do and stop it, do the side effects stop???

    1. Ilene, You should probably give the AI that’s been recommended for you a try. You might not have side effects at all. Speaking for myself, when I went off Arimidex, certain side effects dissipated. I’m now on Aromasin and it’s going better so far. Time will tell… Good luck with things. Thanks for reading and commenting.

      1. Nancy,
        Actually, my prescription is for anastrozole.

        I am a widow and just dating new men and did not want this to interfere with my attraction to them or vice-versa.

        1. Ilene, That’s what I was on too. It’s the same drug. Forgive me if I’m over-stepping here, but I feel your primary focus should be on doing all you can to maintain your own good health. I would try the drug and see what happens.

  25. Refreshing to find this post. I am referencing my mother, 58 yrs old, almost 1 year since her diagnosis. Er/pr+.
    She was put on arimidex July 4th. Within 2-3 weeks, back pain, horrible morning ankle pain, a persistent cough. By November, all the symptoms just got worse. Her oncologist put her on a 3 week break, ordered a chest ct which was negative. Within 3 days, the pains went away. The cough by end of week 3 was almost non existent.

    She was switched to femara in December. She gets stiff now, but not as bad as before. But the cough, is back. It’s a deep, persistent hacking cough. She told me she is embarrassed to do public things, like a movie, in fear of starting and have everyone look, and be annoyed

    We meet with her mec oncologist this Wednesday to see if there is anything left for her to take. Her complaints of the cough before were kind of poo pooed. So I am going to this visit. I think without saying anything out loud to each other, considering stopping all AI meds. The quality of life just keeps diminishing. Going to ask for statistics regarding that.

    1. Jeri, I’m sorry your mother was suffering so much from the side effects of Arimidex. I completely relate. It makes me sad to think she doesn’t want to go out in public due to her fear/worries about what others might think. I would definitely have that cough investigated further. That should not be poo-pooed! I’m glad she has you to help her advocate for herself. No one should suffer in silence. No one. And every patient deserves to be heard and deserves help in managing side effects. Thank you for reading and sharing. Good luck with things. Let me know how it goes on Wed.

  26. I just started Arimidex Feb 1, but am already having side effects: higher blood pressure, water weight gain, general fatigue, bodywide aches, and really awful flare-up of lichen sclerosis. LS is a skin condition that can develop when estrogen levels are low. It usually affects the genital-anal area in women. In LS, the skin becomes red, and leathery. Tears or blisters may form, which may bleed. Therefore, I burn and bleed each time I urinate or defecate. I have been using two medicated ointments by my dermatologist, but I’m getting only minimal results. I’m already miserable and wanting to try sometime different.

    1. Rosie, Your side effects sound awful. Don’t suffer in silence. Talk to your oncologist right away. Don’t wait and thank you for reading and sharing.

  27. Hi: I have just started taking Femara about a month ago. I did have some achiness but could handle it. I did notice my mental mood and anxiety level increased. I did not feel like I could handle much, wasn’t feeling like myself. I read through this blog and did not see anyone experiencing this particular side effect. Just wondering if anyone else experienced it. Right now my dr has me off the drug for a week to see if that makes a difference. I am concerned though about taking AR drugs in the first place as I was not keen on doing chemo or radition. Currently undergoing radiation right now. Thanks for any input.

    1. Sally, Keep discussing things with your doctor. Never suffer in silence. That’s always the best advice I can give without knowing specifics and because obviously, I am not an expert. I have heard of this kind of side effect, though, that you mentioned. You’re not alone. Good luck.

    2. My mothers mood was also altered, in a cloud. Worried a lot. I think you need to be off more than 1 week to truly know. More like 1 month.

        1. No, of course. Her doctor did recommend, I think they should discuss that 1 week is really not enough time to get the drug out of her system to truly know if it’s causing her mood changes.

    3. I have tried two aromatase inhibitors: Arimedex and Femara. I felt unwell on both of them. I felt bloated and my clothes became too tight. I had pain in the joints of my hands and feet to the point it felt crippling. My mood became more depression and anxiety anxious. My blood pressure increased. Worst of all, I developed an awful rash on my genital-anal area which was driving me nuts from soreness and itching. I finally told my doctor, please let me try Tamoxifen. My mother had a similar breast cancer 20 years ago and did fine on Tamoxifen. I know the doctors are “pushing” aromatase inhibitors because they believe that it prevents recurrence in the same breast and new cancer in the opposite breast, but I could not live five years in that kind of misery. So far I feel wonderful on the Tamoxifen without any side effects. I may have to take it 10 years, but that is inconsequential if it will save my sanity! Tamoxifen has a good track record and does not weaken your bones as the AIs tend to. So, my dear sisters, advocate for your total health and speak up if you are suffering truly horrendous side effects from the AIs. There is an alternative.

      1. Rosie, I had similar experience on Arimidex with severe, crippling pain in my feet. I am doing better so far on Aromasin. And my oncologist and I discussed Tamoxifen too as another alternative if the AIs become intolerable. So yes, there are alternatives before going off meds completely. I agree that we need to advocate for total health and speak up. Thanks for sharing.

    4. Started on Letrozole in February. No side effects for three months. Now I have a few more hot flashes, joint pains and weight gain but I have read blogs from women who gave up AI’s and had recurrence of cancer. I know women who are on Tamoxifen and AI’s with minimal side effects. Let’s face it. We all have to decide every step of treatment based on effects and side effects.

      1. Cynthia, You’re so right. Each person must weigh all the pros and cons and do what feels best for her. Good luck with the Letrozole. Hope the side effects don’t get too bad for you. I’m still hanging in there with Aromasin. Onward, right? Thanks for sharing.

  28. I’ve been lied to. I started an aromatase inhibitor last week and was told weight gain was NOT a side effect, mood swings were NOT a side effect, menopausal symptoms were NOT side effects . . . and many more lies. I think I’ll take my chances with breast cancer again!

    1. Susan, Please have a frank discussion with your doctor about this. And remember we are all different, so you might have few, or even no side effects at all. Don’t assume the worst will happen. Just never suffer in silence. Good luck.

  29. I took Arimidex for about a year and could no longer handle the side effects so my oncologist switched me Aromasin. I have taken it for 3 months and aside from the hair loss and insomnia it’s not as bad. Anyone else have the hair loss issues? It is pretty significant, my hairdresser said I have lost an alarming amount of hair. Trying to decide whether or not to try Femara or is that just more of the same?

    1. Lynn, I did the Arimidex too and couldn’t tolerate it. I’ve been on Aromasin for a year in August. I have pretty bad hair issues too, but the other side effects thus far have been more manageable, though not gone by any means. You could ask your oncologist about trying Femara. I’m pretty sure all the AIs have the same potential side effects, but who knows? It’s worth a discussion if you’re really troubled by the hair loss. Mine is very thin. Just had a haircut today and doing that simple thing is stressful for me. Good luck and thanks for reading and commenting.

      1. I agree, just washing my hair is so stressful. Seeing the amount I end up with in my fingers is enough to trigger a panic attack. I sure don’t want to be bald.

  30. Thank you all for all the info. I’m still learning to understand all of this. Woman including myself need to read more of these blogs,they can be so helpful. I was beginning to wonder if my symptoms was just me or the Anastrozole which I have been on almost a year. My symptoms are increasingly getting worse. Quality of Life is not looking so good. But now I know it’s not just me that’s causing these symptoms. I don’t feel so alone now. Thank you Nancy.

  31. Fantastic article and very relieved to hear others suffering as well. I have every symptom you mentioned. Bone ache, joint pains, sleeplessness, thinning hair, my bone density has dropped! my pains and aches are in my ancles and hands and well as one person said Linchin scorisis sp?weight gain, but I never want to go back to a diagnosis again, So in actual fact its just lingering pain for 5 years or more.

    1. Angela, No, you are definitely not alone. I’m sorry you have all those symptoms/side effects. Have you discussed with your oncologist the possibility that an AI might be recommended for ten years? I told mine I just wanted to get through the first five and then I’d think about the next five. Thanks for reading and sharing.

  32. I’ve been on Tamoxifen for 4 years and have many of the “normal” issues: Hot flashes, reduced libido, sleep issues, minor joint pain. But, about 2 years ago my Oncologist said we’d switch me to Arimidex since it was 2 years post menopausal by then. I had pretty bad joint pain from the Arimidex which began within a few days of taking it, and it was much worse than the Tamoxifen. I talked to my oncologist and said I’d rather go back on Tamoxifen, he said it was fine and so now I’m still on it even though I’m post menopausal. I hate the side effects but feel that the benefits outweigh the negative side effects, as I don’t really feel I have much choice. It’s disheartening, to say the least, to hear all of the side effects related to endometrial cancer and I worry every time I go to my OBGYN.

  33. I have tried Femara and Arimidex. Both were crippling and greatly effected my quality of life. I had insomnia, major fatigue, developed de Quervain’s in one wrist, severe bone and joint pain that would wake me up crying. Life was passing me by and I didn’t care, no motivation or joy on the meds. Total lack of libido and sexual response. One day I was at a stop light and thought it would be easier to drive in front of a semi than continue on like that. Last day I swallowed an AI. MO started me on Tamoxifen – however, new research looks like it may be dangerous for BRCA 1 women in regards to endometrial cancer. Stopped the Tamoxifen. MO now wants me to try Aromasin. No. I have drawn my line in the sand. Quality of life trumps these meds. My kids need a mom that is alive and cares and can move. These drugs were killing me much faster than the cancer. If I have a recurrance, I will deal with it then. I want to enjoy my life, not endure it!

  34. I’m in the same boat. Took Arimidex for a year. Crippling side effects. Switched to Aromasin for 7 months, not bad at first but hair loss and insomnia became intolerable. I’ve been on a 4 week break, trying to decide whether to try Femara or just stay off and take my chances. Quality of life is so important. I also have heart disease and am very worried about the effects of AI’s on my heart. So far getting mixed messages from my drs.

    1. Lynn, Sometimes it is hard to know what’s best. I hate AIs and the side effects, but we do need to weigh the pros and cons carefully. I would never suggest telling someone else what to do, but as for me, I plan to stick it out for five years on Aromasin and then re-evaluate… Good luck to you. Thanks for sharing.

  35. I took aromasin for five months and had most of the side effects listed. Hot flashes, night sweats, insomnia, sleep disturbance, and fatigue. Then depression and bone pain crept up. I was miserable. My oncologist told me to a stop taking the drug and take a break. It took over a month for the side effects to subside. Now I feel like myself again, and am considering trying another one of the meds. But I have decided if the impact is the same that I will stop. Everyone has to decide what is right for them, but the quality of my life each day matters a lot to me. I resent the rhetoric from the drug companies that say side effects are minimal and easily tolerated. Written by someone who never took the drug.

    1. That’s what my mother did. She tried
      Ariimidex first- bad cough, ankle pain, back pain
      Then
      femara- minimal pain, bad cough.
      Then
      tamoxifen- slight increase with hot flashes, cloudy judgement. But overall, sticking with it.

      We learned over the past year and a half, that getting a cold triggers “the cough”. So with ever cold, we hold off on her tamoxifen till it passes then resumes. It’s working. The first 2 mends she starting coughing immediately and never stopped till she stopped taking the medicine for a month.

    2. Wendy, I hear you. Boy do I. None-the-less I carry on taking my little white pill. I am going to try to stick it out. But as you said, each person must decide what she can and cannot tolerate. Good luck to you. Thanks for sharing.

  36. From all I’ve read online, I must be one of the few who used an aromatase inhibitor, Femara, as a neoadjuvant therapy for a postmenopausal ER/PR+ Her2- IDC diagnosis. I’m still red hot mad that it is not considered standardized, in the US, treatment, I had to initiate it, NO ONE suggested it, particularly since it has been recognized that aromatase inhibitors are far more successful (not to mention: far less toxic and far, far less expensive) than chemo . I also pushed for taking it much longer than my Oncologist desired (my Surgeon was far more agreeable to stretching the time), based on more than one study suggesting that a longer length of therapy might be in order.

    My active tumor, which was initially palpable and even visible to the naked eye, is no longer palpable; a lymph node red alert, on same side, now appears normal; and, other breast, DCIS issues are gone. The active tumor is now much, much, much smaller, though there are now remaining, and tricky, pleomorphic calcification issues (which, if I understand correctly, are also results of neoadjuvant chemo and radiation) where the palpable tumor once was.

    My main query becomes: my side effects seem minimal, to those using aromatase inhibitors as an adjuvant therapy versus a neoadjuvant therapy, and I’ve found no comments from neoadjuvant users to compare with.

    As a neoadjuvant user, my main side effects are: joint issues where there was prior joint damage, yet nothing near as excruciating as what I’ve read from some adjuvant users; drenched with sweat hot flashes unlike anything I witnessed under menopause (I take it in the evening for that reason and use a dark colored damp washcloth on my face at night, which helps significantly and serves another purposes of blocking any light); and possible mood issues, though, having been a middle aged female victim of the “recession” just prior to the cake icing of a tumor reminiscent of the movie Aliens, it’s hard to tell about that side effect.

    To nutshell: since there’s not much to compare with, I wonder if aromatase inhibitor side effects aren’t significantly increased given prior therapies such as: chemo, surgery, and radiation?

    1. Anon, I do not know the answer to your final question. You might be right. And I don’t know how many women take an AI as part of neoadjuvant therapy. I am not familiar with those stats. Thank you for sharing about your experience. Your insights are interesting.

  37. Just a word of caution to the ladies out there that have existing heart disease and breast cancer. My cardiologist has warned me against taking AI’s because I have CAD. He said they are cardiotoxic and I should have never been given one. My cancer was caught early and my breast surgeon said that with the AI I have a 7% chance of recurrence, without the AI my chances of recurrence is 10%. I am more worried about what this will do to my heart therefore I am choosing to stop the Aromasin now.

    1. Lynn, Every situation is unique. I’m glad you and your doctors have come to agreement on what is the best course for you. Thank you for sharing about your decision.

  38. (I do hope that my above comment does not appear to be a possible ad for Novartis, the Femara manufacturer. I don’t trust a one of the way too enormous pharma oligarchies as far as I could throw the enormous hard wood conference tables their muckety mucks plot at.)

  39. And yes, as LynneWilson has noted, as an aromitase inhibitor user, I could very well end up with severe heart issues, not to mention that noted chance of endocrine cancer, … sigh; … though, I’m still quite happy I never touched the Chemo drugs for my particular diagnosis (which I’m fairly sure Novartis (Femara/letrozole), Pfizer (Aromasin/exemestane) , and AstraZeneca (Arimidex/anastrozole) also manufacture and promote, for those whom it has minimal, if any, advantage for, let alone the horrid side effects).

    1. Anon, I’m glad you are satisfied with your choices. Each of us must choose our own path based on sound medical info and other individual factors that come into play. Thanks again for sharing about your choices.

  40. good morning nancy it seems I haven’t signed in in a while so I’m going to post before my granddaughter gets here (its grandma play date day) anyways as I said in my previous post in this threadthat my doctor put me on a remedy lyrics after my hysterectomy back in May of 2012, and at this time I had started the arimidex and progressed to spine in Sept 2012, and in May of 2013 they found the liver tumor. at this point in the game I had already been on the medicine for a year and decided it was not working for me besides all of these severe side effects that left me walking with a cane and gaining 60 pounds, it was going to severely impact my quality of life because in June of 2013 my grandbaby came and I was going to be an instrumental part of her life so I needed to make a decision and although I do not regret my decision because I was not able to stop progression I did have a good time span that I was able to give myself a good quality of life lose the weight get off the came and babysit my granddaughter once a week and be able to cook and clean the house but now I have had progression as of last month they found a new primary in my contralateral breast it’s small 6 millimeters but they also found 2 thyroid nodules that were not there before and some nonspecific foci in the right side of the brain-the small 5mm liver tumor has disappeared off the radar for now. cancer is a finicky animal it goes where it finds food and to avoid taking the aromatase inhibitors I’ve been trying to feverishly lose weight because this is where the estrogen stores itself and to keep my bones strong I have been trying to walk everyday because I do not want to go back to the cane in the event that I start this femara they have now given me. Femara contradictions state that I will have at least a 4% bone loss but time to progression would be 9 months on average but here’s the thing, there is hardly any chemos that they treat us with that cross the blood brain barrier but the aromatase inhibitors will help to slow that progression to the brain…..I know I must start the femara, but I want to sit down with my oncologist again and ask him if modos camera might be just as effective because the drug metabolizes in 2 days so its half life is one day and so is it possible that I may be able to take a lower dose and take this drug every other day and lose weight and exercise? it’s an avenue that I’m willing to explore because now it’s too late for my breasts they will take it but I’m not willing to give up my brain just yet…..

    1. Theresa, You have a lot to deal with. I certainly am in no position to offer you any medical advice about your situation. But I can and do wish you well and can offer a listening ear. Good luck with those upcoming discussions with your oncologist and with the decisions you need to make. And enjoy that granddaughter. Thank you for sharing and don’t worry about typos!

  41. 68 years old. I am on an AI for 11 months, stage 1, no lymph node involvement, lumpectomy, IORT. I take arimidex. I had hot flashes the first 5 months, but that has pretty much alleviated. I have bone/joint pain in my feet and ankles. I walk for 30-40 minutes daily. That really helps.

    I seemed to have gone to bed and never got up after going on this drug. Sometimes too tired to email! Now that is tired. My internist gave me a little thyroid boost even though I was in the normal range, to give me a 5-10% energy boost. That was great. I drink coffee a lot and sodas too for caffeine boost. That also helps. Is there a calorie free way to get caffein?

    I saw a dermatologist to see if she could help me with my dry skin so I looked a little better. She was able to suggest some things which I love. I feel like myself again! Kind of attractive 68 year old. I also added some hair products as my hair was too dry, much better now. We are women after all!

    1. Becky, I’m glad you have figured out some effective ways to help manage some of the AI side effects. It’s a constant struggle for many, me included. Thank you for sharing.

  42. Oh….I had no mood problems on these drugs. Not fun but totally tolerable for the 5 years I am supposed to take.

    AI side effects are less serious than tamoxifen side effects. So it is nice to be able to take an AI.

    1. Becky, I’m glad AI side effects aren’t as bad for you as tamoxifen. This isn’t the case for everyone though. I’m glad you’re doing alright. Thanks for the additional comments.

  43. Hi Nancy,

    I have been on Anastrazole for 6 months. The initial side effects were insomnia, severe heartburn, and hot flashes. At 4 months I also developed severe hamstring cramps with sitting making driving any distance difficult, a trigger thumb, difficulty standing and walking after being seated or reclined, decreased grip strength, and decreased range of motion in my shoulders making it impossible to rake my bra off. The hot flashes stopped after about 5 months. I felt really old and helpless. I am on a drug holiday and meet with my oncologist in a month to discuss options. I am seriously considering not taking anything. I was absolutely miserable on Anastrazole and I’m not a wimp or whiner. We have a mountain home that requires a ton of work and I can’t afford to be helpless.

    1. Kris, I totally relate. I had to go off Anastrazole as my body just couldn’t handle it. I am presently on Aromasin, which is no picnic either, but for me things are going better as far as pain goes anyway. Good luck at your appointment. Keep us posted.

    2. I am interested in any studies, and/or personal insights, about breast cancer survivors who had lumpectomy followed by radiation, but chose not to use AIs. Are there any out there?

      Specialists (most of whom undoubtedly never used them) report that tolerance builds for AIs, side effects diminish, and people normalize on them. Ha! Survivors seem to tell another story.

      I have to decide in the next couple of months…and would appreciate any information!

      1. Maggie, I don’t know about such studies. I haven’t really head that tolerance builds and side effects diminish. Would be nice though. Good luck with your decision.

      2. Maggie, I couldn’t handle anastrazole either or any of the Als, but that is me. I had decided to go off them in Feb. with no regrets because I wanted quality of life. But I need to say this though; before thinking at all of going off try the aromasin first. A lot of woman do much better on this one. Also, exhaust all your your options first before you decide if you want to go off the Als because….God forbid, if you have a recurrence the last thing you want to do is put blame on yourself for not doing so. Good luck my friend and God bless.

        1. Deb, thanks for sharing that. I am weighing quality of life, and where my husband and I would be in five years, having lost quality time together.

          Should a recurrence emerge, a question I just posed yesterday to my “oncology team,” what are the options, and wouldn’t they be comparable to the first diagnosis? Getting that answer will further guide me, but honestly, giving up any quality time with the love of my life (35 years) ranks low, low, low today!

          When you went off, did life “return to normal” pretty quickly?

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