Half of breast cancer patients treated with antihormonals are noncompliant ie, do not

[BonnieR]

Of course age probably is a factor too...I was already menopausal so did not have to bear being plunged into that state. But the AIs certainly exaggerated all the discomforts! Esp since for years prior to cancer I had taken HRT.(which probably fed the cancer, but that is another story)
And a short break from meds is not the same as discontinuing. My onc explained that switching them through the course of treatment can releive symptoms for awhile. Since we all seem to react differently to the drugs even tho they all do basically the same thing. So it buys time to finish the course of treatment. But there is no denying that our QOL has been compromised.

[Hopeful]

I am still trying to reconcile the doctor's reccommended "vacation" with the compliance issue as described in the article and some earlier posts. I looked up the FDA approved inserts for the most common AI's, Femara (Letrozole) and Arimidex (Anastrazole). Here is what it says about how long the drug is active in the body when you cease taking it:

Letrozole’s terminal elimination half-life is about 2 days and steady-state plasma concentration after daily 2.5 mg dosing is reached in 2-6 weeks.

The reccomended daily dose, ARIMIDEX 1 mg, reduced estradiol by approximately 70% within 24 hours and by approximately 80% after 14 days of daily dosing. Suppression of serum estradiol was maintained for up to 6 days after cessation of daily dosing with ARIMIDEX 1 mg.

So, if you are on a month's "vacation," you are unprotected for rougly 24 days out of 30. If you take enough "vacations," how does that impact the statistical results you will see?

The fact of the matter is, no one knows what the truly optimum duration of therapy with these agents is. My onc said to me that 5 years of treatment is an arbitrary number based on the arbitrary number of 5 years used in trials. When issues arose about the potential for exended therapy, he said to me, the drug manufacturers were probably saying to themselves, "Dang, we should have gone for 10 years from the start!"

These are pills, not magic bullets. They are efficacious and toxic in about half the patients who take them, and just toxic in the other half. It is not unreasonable to balance QOL against the particular risk you are managing in deciding how long to take them.

Hopeful

[Jean]

Interesting topic, but no answer is found.
First of all I have alway thought that the women who are dx. at a young age are faced with so many issues.
As most young women today work full time and also are raising their families. Difficult in any form let alone adding breast cancer to it and the med.

The older group of us who were post menapausal are facing side effects of thinning hair, joint pain, and all the other issues that come with the AI med.

Most important for me I changed my gyo to a women a while back and found that a female gyo was a major difference than any male gyo. They know first hand what giving birth feels like, what our body parts feel like etc. If you have a dr. that you cannot discuss the AI issues with forget it, all is lost before you begin to open your mouth.

We just do not have all the answers to these meds.
For me with an estrogen level of 90% I decided to deal with the negatives issues and try to alter as much as I can. I do find that swimming is a great way to exercise and get results, strange that I can do laps in the pool and come out and feel no joint pain or ache. The swimming is great for getting my joints and muscles in shape. Too bad I live in the East and close my pool in the fall and I just do not make it to the YMCA pool.
I just can't seem to find the time to get there on a regular schedule.

Oh, talking about finding the time another point to consider is I find in operating my company that no matter what time line I give I will always have a % of people who do not comply with reports when due and other items, etc. Maybe the same thing with taking the med. Just maybe there is a % of women who have intentions of taking them and darn it the day flys by and she forgets or is just to busy with family and jobs? Who knows, we do not have the answers. There are many reasons for not taking the meds. By choice, by accident, etc.

We are all adults and have to make life choices that work for us on a personal level. Some of the choices we have had to make since dx. are risky and dangerous.
But so is our dx. No easy way in and for sure no easy way out.

Of course we must tell our dr. what our side effects are and some dr. are better at addressing those issues.
But the issues remain these AI do cause strong side effects and it is different for each one of us.
Just like our breast cancer.

Great Thread Ladies.
For me I will take my chances with the AI

Best Wishes,
jean

[CoolBreeze]

Becky, good for you on not taking it But, I have to say, I have a responsibility to my family too and if I hurt so bad I can't move I'm not living up to that responsibly either.

You have to really balance your quality of life with the possibility of recurrence and that's a pretty hard choice to make.

I'm still taking tamoxifen but only because I have pain control. There will come a day when he says "no more pain meds" and then I may have to reconsider taking it. I don't *want* to stop but my quality of life is not good at all. I'm on my third month and I have heard that some people adjust so I hope end up being one but so far, not good.

Even with percocet I have problems doing things. Today we went to a museum with the family, and just in two hours I was in some pretty bad pain, had to sit at the end, and wanted to sleep when I got home. I'm only 52 and was perfectly healthy before this. I could walk all day and never feel tired. Today, my back, my hips, my thighs, my knees just ached. Before, I looked and felt ten years younger. I didn't understand why people my age complained of aches and pains - I never had any. That's changed, with a vengeance.

I work in a school and go back to work in one week - haven't worked since I started tamox. I'm just not sure how I am going to be able to manage, getting up at 5:00 a.m. especially in the winter when it's cold and dark.

I don't want cancer again but also want to live my life. I feel like I'm on a teeter-totter.

That brings me to Terri's question about her wife and exercise. I had always planned to exercise as soon as my expander was out and I was healed. I have always been thin and so never got into the exercise routine. I have always been very healthy even without it, and even though I never did formal excercise, I walked places and took stairs rather than elevators, etc. I moved. But, after cancer, I feel like I should keep my body at its optimum and I thought I'd sign up for yoga or something gentle. I have not had weight gain from the drug but of course, it's important to exercise. I always knew that but ignored it.

I cannot even imagine it now since tamox, I hurt so much.

I am still going to try it when my surgery is done. Because, who knows, maybe it will help. Since the reason we have the joint pain is that our cartiledge needs estrogen and that's gone, and we lose that padding between our bones, then it seems logical that it is important to strengthen your muscles to take some of the pressure off your joints But, it's very hard to get motivated when you can hardly move until your two percocet kick in.

The hot flashes are miserable but the pain is the worst part. I could do it all without that.

For those of us who have the extreme SEs, like me, I think it's important that we tell our doctors that it is not like menopause. Because, it isn't. Think of all the thousands of 60-70 year olds out there who have been through menopause and who still ride bikes, take classes and live full lives. I think physicians need to know how bad it is - and not that we are just "suddenly plunged into menopause" which is what I've heard in some articles.

[Monica]

My decision to stop taking tamoxifen was very difficult for me, and not one that I did easily. I am 95% ER+. However, the tamoxifen caused me to have MS relapses. I tried three times, and every time I would have problems. Not to mention, I had anxiety spells that I never have had in my life and to be honest freaked me out. It has been six years since I have been diagnosed, and keeping my fingers crossed, so far so good. There’s a very serious risk with the choice that I made, but I asked myself if I would punish myself if my cancer came back. I decided, no; for me, quality of life trumped a possible recurrence.
Best,
Monica

[AlaskaAngel]

Also, in 2002 when I was diagnosed, AI's were still being tested for metastatic bc and were not given for adjuvant therapy, so they still have a relatively short history of use in terms of what the effects actually are for long-term use. Adjuvant use is the group with the longest likely duration of use.

We ARE the test group. If they don't hear much from us, they aren't going to see or focus much on any problems with these drugs -- any more than they have about the issues of chemo brain or sexuality. As long as we take the attitude that we "have to suffer" to stay alive, it isn't likely that anyone will do much about it.

For example, if the intention of using these drugs is the effect on aromatase, then what is bringing about the joint pain? Is there aromatase in our joints? And if there is joint pain where there is no aromatase to inhibit, what ELSE does the drug do that is not sensed through the nervous system but that may not be beneficial long-term? Is bone loss a side effect, or a primary effect? Are there other "side effects" that are unintended and that long-term are not beneficial that genuinely should be considered along with QOL in making a rational decision about whether to discontinue the drug or take it long-term?

A.A.