Has anyone here decided against taking Arimidex?

My experience with this drug has not been bad. When first going on it I had hot flashes, fatigue and joint pain, but I don't really thing it was all due to the arimidex, I think much of it was related to chemo for as my MO so eloquently put it, "Well we did poison you". Over time my symptoms have diminished, so either chemo was the culprit or I have adjusted to the AI.

I have been on Arimidex (Teva brand, which I hear has the least problems), for almost two years. My symptoms are similar to what I was experiencing before cancer, when I was just post menopausal; occasional hot flashes, mild joint pain that comes and goes (maybe slightly more since starting AI), and vaginal dryness, which increased a bit too. Nothing remarkable.

I would say that if you gave the drug a shot and the side effects were unbearable and didn't diminish, then its not the drug for you, however, if you haven't tried it yet, don't fear side effects you don't have because you may not get them.

Hi Patti, I have been on anastrozole - generic for Arimidex - for 2.5 years and have minimal side effects from it. I think you should give it a try and allow some time for your body to get used to it. In many cases, initial side effects subside after 5- 6 months and become quite tolerable. Not to mention that some women report no noticeable side effects at all.

I have had the same knee jerk no way response to these drugs, but every time someone says, "Why not try it, you might not have any SEs at all?" I ease up a teeney tiny fraction. Teeney.

I also complained so much about taking anything my MO ordered an estrogen test done to see if I was menopausal. I haven't had a period in a year, but they stopped when I had to have an IUD and stop taking the pill. Yes, I got the SE that lots of women get. But my estrogen level was 12. The others were low, too. So maybe I wouldn't have those hot flash type SEs. I didn't during chemo, either.

Anyway, my point here is - the MO said he'd talk to me again after RADs. Maybe by then between the two of us we'll have changed our minds, and we could hold hands and dive in together.

Hi Patti...I'm one who refused anti hormone treatments. There are many reasons, the most important being my generalized poor health prior to my bc diagnosis. I would be happy to discuss in further detail if you want to private message me. Good luck to al.

Just like women all react differently to menopause, it seems we all have different experiences with the AI drugs too. Some breeze right through, others have a hard time. Perhaps the amount of estrogen you are producing at the time you start the drug has something to do with it, the bigger the drop in level the more SE's? Sounds reasonable.

For me, my initial menopause symptoms were MUCH worse than what I experienced when starting AI. My biggest concern is bone loss. I was in the osteopenia category before cancer and it has worsened, but not yet at the osteoporosis level. Is it due to the drug or would have happened anyway, I don't know. Talking to the MO about prolia next visit.

On the other hand, some react to the drug itself, or the fillers used to produce the drug, so trying different generic brands or different AI's can help.

For those of you that decided not to, was part of your decision your stage at the time? Do you think you would have been swayed differently if you had been stage 3 at the time? Just curious. I've been so anti-hormonal for so long. Usually I'm open minded, then there's the "trust your gut."

I feel like I have to make decisions based on what someone tells me, not on facts. I'm just not used to that.

Anti-hormonals certainly are "big guns" in bc arsenal. If you don't believe me, scroll through a stage 4 thread and read the signatures of how many reach NED and are stable for many years on anti-hormonals alone. I believe they are particularly beneficial for grade 1 tumors that may not have responded as well to chemo.

In my early years (60's. 70's & 80's), most women with breast cancer died. Fortunately, the prognosis is much better today. My MO even tries to call bc a "chronic condition" (although I don't accept that term yet), because there are so many new drugs to help keep cancer cells at bay that even women with mbc can live for many years. The anti-hormonals are one of the very important drugs that got us to this place. We can't forget their importance, they save lives.

The difficult part is that for all the cancer tx, we don't yet know who really needs what. My BS said there was a good chance I was "cured" by surgery alone, chemo and AIs are more like an insurance policy. It is certainly unfortunate that to get the survival rates we get today, so many women need to be over-treated. The only alternative is to skip the "insurance policy" treatments and wait it out to see who recurs and treat it then, which is certainly an option and some choose this path instead.

The one treatment I don't have much faith in is the "I've changed my lifestyle, I eat healthy and exercise more now so I don't need other treatment" theory. Yes, in today's world we eat too much refined food and exercise too little. We could all do better. But will a healthier lifestyle prevent or cure cancer? No. Generations ago most people were more active and a healthy weight. Refined, genetically modified food didn't exist, but cancer did and people died from it.

vacationbound,

All women on AIs should have very low estrogen production relative to menstruating women, but we post- meno women still got ER+ cancer. I was seven years out. Our bodies produce estrogen from fat, muscle and other tissue, because your body needs it beyond reproductive purposes.

AIs reduce up to 97% of estrogen, so are critical in preventing a recurrence or spread of BC. I suggest asking a pharmacist for how your various medications affect your kidneys and liver, then meeting with your MO with this information. The Arimidex you are taking may be the key to keeping your mets in check.

I agree with you dtad. In 2014, I was the person contemplating hormone therapy and I needed to hear all views, not just the encouraging ones. The opinion is often expressed that only women with problems post but I do not believe that is true. I think many women put up with side effects without complaining due to fear of stopping (that's me) and not wanting to seem ungrateful (that's me). I began anastrozole thinking I might escape SEs, but that has not been the case unfortunately - I have a range of serious side effects which have compromised my health and quality of life in many ways. I have posted occasionally about specific side effects, e.g. cognitive decline, hair thinning, but not about the full range, which are related to oestrogen depletion.

At present I am waiting for a hip replacement consultation, and will take the opportunity to ask about the pain I have been experiencing with other joints and tendon damage that have begun since I began aromatase inhibitor therapy. AI-induced fatigue has changed how I want to live my life and pain has limited my capacity to exercise. I note seachain's recent comments about advancing AI-induced osteoarthritis. I fear that this may be going on for me and will be making a decision on whether to continue medication in the coming months.

I will also be reporting the SEs to my national medication-approving body, which accepts patient reports. I have several articles about AI SEs which mention that SEs may be under-reported and under-acknowledged by doctors and I'd be happy to post links for anyone interested.

Meantime I hope you'll keep posting dtad - your perspective is needed. It's a pity that conversations which could be helpful to others have to be carried on privately because it is not safe for the posters. Wishing you health for many years.

I'm really glad your experience with AIs has been so positive Grazy and hope that continues for the duration of your treatment.

I think dad's point, which I support, is that there are other threads where many come in with their positive experiences and reassure those who are fearful about starting AIs - a good thing. I feel it would also be good to have other threads where the sharing of different views and negative experiences can run without being 'cancelled out' by positive ones - apart from the individual poster's need to feel supported, I think there may be important information in such experiences that could contribute to knowledge and future treatments.

Go well.

dtad and star, While some may express their outlook on a particular subject a little more strongly than others regarding their experiences, I just don't read anything here that seems to be attempting to shame or scare. I have found that most of the women who post here are compassionate partners in this disease, who are just trying to learn and help in any way they can. Nor do I believe that imparting such information, in support of or not of said Tx, is in any way trying to "judge" another. There is plenty of room on any thread for opinions, negative or positive, for imparting experience and information. I don't think your negative experience and telling about it, cancels out any positive information I have read, and vice versa. To me the more information the better. I can then assimilate it as I choose. When we start trying to weed out every nuance of a discussion into separate threads, it makes the information more fragmented and difficult to access.

I have had a bi- lateral mastectomy. I had dcis in both breasts- nodes clear & her2 in my left and Pagents disease in my right ready. Done 12 chemo treatments and five months left to go on my year of herceptin. I am 65 & starting reconstruction. I am ready to get on with feeling better and my life. My oncologist really wants me to start arimidex . I don't want to. I don't want any of those side effects. Being this age, every day matters. There is no guarantee 'that arimidex would keep a recurrence at bay . Does anyone out there feel this way too

afoster1 - I can certainly understand your perspective. I'm 63 now.

The shots of mortality across my bow (in the shape of breast cancer) in recent years, focus my mind in ways that ageing with my former good health in itself did not. For me, this is a good thing - it has helped me to say yes and no and to prioritise how I'd like to create my remaining life (within the usual physical, financial limitations etc). I struggle with fears and doubts but try to have them rather than letting them have me - not always succeeding, but trying to stay conscious.

Anyone will tell you that you won't know what side effects you'll have until you try, and that taking an AI is a personal decision, dependent upon many factors. I'm sure you've read through the threads in the hormone therapies forum and found lots of good information. I don't regret starting an AI though feeling now that my body has paid a high price for any additional protection (not guaranteed as you say).

Sorry but I stand by what I said. I might be a bit defensive but that's because everytime I discuss my decision I get bombarded by those who don't seem to understand or respect my decision. So when I saw someone actually start a thread on the subject I felt it was finally safe to discuss. This is why we have different threads right? There are plenty of other threads that are pro anti hormones, but very few that are not. I realize I'm in the minority but certainly not alone. Its just not fair that I have to discuss this matter in private. The subject of the thread was "has anyone decided not to take Arimidex". What would happen if no one followed the subjects? IMO it would be a very confusing forum. Again I respect all treatment decisions and happy for all doing well on anti hormones....

Well--if anyone is still following this thread---I'd like to know if anyone has done their Arimidex every other day? My Onc has suggested this as a way of getting to the five year mark with some protection, as I am 2.5 years in and suddenly having classic toxicity issues with hands and feet-- I failed after4 days on Femara----.