For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Patoo, so true!
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Hi All,
I'm new here. This March, I will have been on Tamoxifen for 5 years after BC treatments (all started in 2008). My Onc says she will talk to me about the possibility of being on Tamox or AI for a total of 10 years, in my appointment this April. When I started out, it was a 5 year outlook, but apparently, things have changed.
Questions:
Have any of you here gone on an AI after 5 years of Tamoxifen? Or is there a thread like this somewhere you've heard of?
Are any of you doing MORE than 5 years of the AI?
Thanks.
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Springtime (hope it comes soon - tired of this snow!!!). I know some, not me, started on Tamox and after 2-4 years were switched to Arimidex/Anastrozole, I believe because they were fully post-menopause. Someone will probably come on and give you an answer.
I think about a year or so ago something came out that said 7 years might be the new protocol for Arimidex. At the time I asked my MO about that but he kind of pooh-poohed it (big surprise - not!). Up until my last visit in October he was still hinting that I would only be on it the 5 years. Going to have to find that study to take with me in April to get a clear answer from him although I am also leaning toward just going off and trying natural ways to keep this beast at bay.
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I know I posted on here somewhere but only as a general question. I got my results back today so wanted to see what others thought. My estrogen levels are showing 289 and I don't have any ovaries. My FSH level was 65.2. My MO ask me if I was sure I didn't have any ovaries. Someone on here said they can grow back so I researched it and it is possible. But what's really blown my mind is exactly how high they are. Levels this high are indications of what??? I don't even know how to look it up or what to look up. My cancer is 100% ER+. Does arimidex always work or have you heard of any instances where it doesn't work??
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Kathie there are women with mets that are just doing Arimidex and it keeps that cancer at bay. The AIs are supposed to work a little better than Tamoxifen. That's why they switch over if you don't get your cycles back. If your 100% ER and keep your weight at a healthy level you should do OK. I would press your onc further on that though but given you are grade 1 and 100% ER+ I bet the Arimidex will be your most powerful gun, even over chemo.
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Not to be a jerk but any AI could fail. I mean, Tamoxifen failed me. I don't know anything about estrogen levels but it's a good enough question to warrant a call to your MO.
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Springtime, have you been post-menopausal all the way through?
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I just started armidex seven days ago so far so good. what did i do? Went with my daughter and got a tattoo at age 52?!!! It's breast cancer ribbon says faith love and hope. I love it!!!
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My onc wanted me to switch to tamoxifen but I told her I would rather wait for a while. I don't like the high risk of strokes They questioned me about wearing the HRT patch again but I told her absolutely not. Ive got an appointment with my gynecologist to get his thoughts. My onc set up an appt for 3 months. I don't want to wait 3 months if my estrogen is gonna stay so high. If I don't get any where with gynecologist I will go to a endocrinologist. I don't know what to do but it seems its our responsibility to follow up. Yea I know I'm paranoid but I wanna make sure I kick its a#% 😉
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Msmaples love the idea of the tattoo. You go girl
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I have been reading back, & I know this has been discussed before. I can get Anastrozole at Costco for $6.29 or have the name brand mailed to my home for $40.00.
What is the opinion here.
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ruthbru,
I still had regular periods in 2008 when I was diagnosed, but they stopped during chemo. My Onc was not totally convinced I was really in menopause because my Mom was 54 when she went through menopuase, and at diagnosis and chemo, I was 50. I also am an "extreme metabolizer" of Tamoxifen, so she put me on that for 5 years. I have never had my period again, and everything seems to indicate I am full blown menopause now. It would be safe for me to be on the AI.
I just wonder if after 5 years on Tamoxifen, if I can do another 5 years of a drug. On the other hand, I do not want a recurrence either. UGH.
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msmaples516 I got my 2 tattoos on my 51st birthday.
Kathie100 I would do the same thing. I would ask the gyno if your ovaries grew back
Holeinone I had been getting my Anastrozole at Costco (requesting TEVA brand) up until 2 months ago. Costco pharmacist said he would sell me the Indian generic for $9 but now the Teva was going to cost me $80. I am using my insurance which has a set amount on what they will reimburse. Personally I find this BS as did my insurance. Went to CVS and they are currently selling me the TEVA brand for $9 and change.
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Lago,
Is the Teva brand, and the stuff from India both Anastrozole ? My insurance does not allow Arimidex, will only pay for generic, but I can buy it from manufactor for $40 a month. That would be $33 more than I need to spend, but I am willing to do so if it is better, less SE..guaranteed to prevent something bad happening to me...lol...what do you think? Money wasted?
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hello, everyone. i haven't been here in quite some time, so i've been reading backwards. i can't remember what i've read though! i've been on arimidex for a year and i'm not happy. my onco suggested i changed to something else, but i am hesitating because i don't want to deal with other/different SE's. i have all the joint pain, but can manage. however, i'm stuck. i have such a hard time getting up and getting out. everything exhausts me. i feel like i'm 90 and i'm only 68. haha! i think the whole journey is finally beginning to catch up with me and i'm so very tired. i take an antidepressant, so it's not really depression. it's just an overall feeling of tiredness. anyone else deal with this?
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Well put, Spookiesmom! Hair---We love it. We hate it. All depends on the geography.
HollyBoo
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I too am interested/concerned about the Anastrozole different manufacturers and what is healthiest. (LOL! Geesh.)
I do not even know what kind I am on. Kaiser pharmacy. I will call and find out. Just started Dec 2.
BTW I started taking at night. But 3 out of 8 nights I just laid in bed.....awake. Not anxious. Just...awake. Now I take it on AM. Had nausea but that went away quickly. I have had several more awake nights but not as frequent.
Mostly I am, like BusomBlues, sleeping a delish 10-12 hours/night since I had started rads. Another cancer survivor friend who is almost post menopausal said rads is the best kept sleep secret of the century. If I don't get that long sleep, I am wiped out all day. With it, I cruise. But I have 2-4 fewer hours to every day. Hard when one works full time!
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YaYa5 - I hear you about getting up and out -especially getting out of a chair - ugh! Its an effort but after I get up and move around I feel better -
Have all of you had your estrogen levels checked? I haven't but am wondering about it - we should have them checked to make sure this stuff is working, right?
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Holeinone There are 2 drug manufacturers that make generic Anastrozole. Teva (from Israel) and the brand from India. I prefer not to get any of my drugs from India. Teva is one of the largest generic drug manufacturers in the world. Check with your insurance. They might have a preferred drug store. I know when I started it was Walgreens but now it's CVS. But in general Costco is the least expensive especially if you don't go through your insurance.
I have always used the generic. I would say use the generic. If you are getting really bad SE then think about trying the brand name Arimidex or switching to a different AI. But for me the SE weren't to bad and many of the SE got better or went away after a year on the medication.
YaYa what do you have to lose. Try something else. If worse go back to the Anastrozole. I know women who have tried Anastrozole, Femara and ended find that Aromasin had the least SE.
hollyboo I have always taken it in the morning as recommended by my NP to avoid sleep issues.
Iamnancy chances are if you are having SE then you know for sure it's doing its job. Not so with chemo but with these drugs yes.
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to all,
I bought the Anastrozole at Costco, very cheap. It looks like the manufacture is , Breckenbridge.
I could get the real Arimidex from manufacture, bypass insurance. Does anyone do that ? I think I am being paranoid right now. I have only taken it for one week, so far nothing, a little sweaty in the morning, but healing from rads so that could be the cause of that.
I am not as afraid of SE, as I am about it getting the real thing. I know this is a little crazy.
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Either way it is 'the real thing'; as it is a 'serious drug' (my pharmacist's words) they can not mess with the actual drug formula, just with the fillers.
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Holeinone I did not get any SE for 3 months! I thought gee am I one of the lucky ones that gets no SE. But exactly 3 months to the day it started. 9 months later the SE started to be much less intense. You can get Teva from costco but you have to request it and it will have to be ordered (takes about a day). Just make sure they are charging the cheap price. For some reason the pharmacist at my Costco refused. They shouldn't be doing that.
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Has anyone used Target pharmacy? My anastrozole from reckenrriddge is $0.00 after january co-pay of 8 and change. ---------kad2kar
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Lago, thanks for your help, I know you help so many women, you rock girl !
My Anastrozole is from India, it is Breckenbridge. I might go back to Costco and ask about getting the Teva but I am leaning towards spending $40 a month and get the original. Most people would think I am paranoid, I agree, but I think for the first year or two, I need to believe I am doing all I can. Money down the drain, yes.
hoolboo, just look on your pill bottle it will tell you were it is manufactured.
These stinkin' disease can make you crazy.....
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Picked up prescription for Arimidex today and it is waiting on the counter for my last rad treatment tomorrow. I'll take the med on Thursday. You are all right. Afraid to start after reading about all the side effects, but I won't know unless I start. I'll stay here to get the info from you all. Thanks.
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I just started on Arimidex, and my onc told me last week that if you have SEs (not life threatening ones) they plateau after 6 months of taking it and often start to decrease or disappear after then. I am on my 4th day and already have the joint pain, but when I exercise aerobically for 45 minutes or so the pain goes away for about 6 hours. I'm hoping that this is the only side effect I have, but I am reading up on preventing osteopenia and osteoporosis using yoga. I am getting a baseline DEXA scan tomorrow. She also told me about Epsom salt baths for the joint pain. Haven't tried that yet.
Thanks to all of you for being here.
Hugs,
Peggy
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what is SE?
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Side Effect
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The issue about where my Arimidex comes from got me searching for the manufacturer of my anastrozole. I found a site that seems to suggest that there are many manufacturers of anastrozole. http://www.drugs.com/availability/generic-arimidex.html
My husband researched my particular prescription and found that it was manufactured in the USA by Roxane Laboratories from Columbus Ohio.
I need to refill my prescription soon. I will check with my pharmacy to see if this is true.
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lol thanks
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