For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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yaya5 - make sure you talk to your MO before quitting. My MO wants me on it for 5 years even though I didn't need chemo or radiation and I had a very low oncotyping score of 5. I personally would want to hear it straight from my MO that it's OK to quit, not his/her PA. There's a reason he's the MO and he should be having this discussion with you, not the PA. My two cents
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YaYa, the PA is nuts! Yes, Herceptin is the most important thing you could do for the HER2 aspect of your cancer, but If you are 98% estrogen positive, arimidex is the most important thing you can do for the hormonal component.....way more important than chemo.
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You're not lazy. You're wounded and your body needs you to cool it so it can heal. I know it's lousy, and probably doubly frustrating because you can't exactly put your finger on the problem. As for me, I'd be full of energy one day, could barely move the next. It was my RO's NP who explaiined it all to me, and probably if you give your RO, your MO, or your BS a call, one of them can tell you more scientifically what's going on. You might also consider giving ritalin or some such a try.
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stage 1, per instructions of my MO, I went cold turkey, felt like crawing the walls for a few days and even contacted a pal who ended hers a year ago, she used antipressants and told me to call for them! I did not.
I am one of those folks who toughs it out whenever I can. It was lousy per sleeping for a week but fine after that
funny as today I saw my personal trainer who is working on his PHD in cancer therapy, he said I was supposed to go cold turkey.....I looked at that cute little face of his....told him he was lucky not to have to deal with me that week!
but in retrospect, I think a week of every other day might have been easier...ask your MO!
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thank you, Proudtospin:) I have been on it since July 2011, so a little short of 3 years, tempted to stop, I am not sure it is worth the SEs. I seem to have all of them....eeeeeekkkk.
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Chemo kicked my butt, but I've been on Arimidex for almost 9 years with NO side effects. Only some people have side effects with it - all those others who don't have problems with it are off living their lives.
I also had no side effects with one full year of Herceptin. I believe it has saved my life.
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optimistic,
Thanks for the uplifting post. I am planning on staying on Arimidex for 10 years, so far a little rough, but confident it will get easier.
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holeinone,
I TOTALLY understand. I started Anastrozole (mine from Kaiser: Breckenridge distributes and made in India) Dec 2. Besides hot flashes worse than menopause and heart beating in one ear and timnitis, I had a four day migraine early March that meds did not stop. Who knows whether it was the AI meds, the fillers, the India manufacturing, or just coincidence.
However, my oncologist did agree about switching to brand/Arimidex and seeing how that went. $1000/3 months through Kaiser. Cannot afford. So, yes, I too am looking into the $40/month program. In the interim, I will be trying Femara.
Anyone have any of these possible side effects?
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ruthbru, you think arimidex is more important than chemo? i need to clarify that i didn't see a PA; she is actually a nurse practitioner. that could make a little difference? in addition, my onco has also told me that the arimidex isn't that important. according to my oncotype DX, and as my onco told me, my results were 'off the scale.' everything, including Ki-67 and p53, was elevated except progesterone. My HER2 was 13, which i think is as high as it goes. all this to say that i think i'm considered high risk for recurrence even with chemo, radiation, herceptin and arimidex, although not as much after all those treatments, of course. i'm so confused. from what i've read, AIs are important for other kinds of cancers that can occur once you've had breast cancer? i've researched this again religiously since i saw the nurse practitioner and i just can't understand why she and the onco would think it's not important.
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mine is the Breckonridge from Kaiser also. Lots of SEs. My main concern is bone loss, I have osteopenia. My first bone scan was useless as a baseline, as Kaiser changes machines, and MO says you can't compare the second scan. Just reads, I Still have osteopenia. I do stay busy...daily exercise with the 10,000 step goal. Loving my Fitbit, logging all food consumed and exercising right through the pain!
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holly boo, I have had a short time with the heart beat/ ear tinnitus. Not very long. Some night sweats, but my main SE is joint pain. Luckily I used to be active, and am trying to get back to that lifestyle.
I filled out the paperwork to get it from Arimidex 3 weeks ago. I found out yesterday that it never was given to the nurse, the social worker still had it. Arrrrg....so, waiting for another month. I will pick up the India Anastrozole tomorrow from Costco. $1000 for 3 months is insane. I think we will both be happier when we get those "wonder" pills in the mail...
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YaYa, everybody's statistics are different, of course, but for me chemo gave me a 20% reduction of risk, anti-hormonals 40%. For every estrogen positive woman, anti-hormonals greatly reduce the risk of recurrence.
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if I remember right it was 20% reduction of the 2% recurrence possibility. That's the way my radiation decision was based on.
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YaYa, I think the issue is not so much whether you should be on or off the arimidex, but why. It just sounds as though you ought to call either the NP or the doc (probably the doc) and ask to really discuss the pros and cons of stopping, or maybe changing to another AI. If you'd feel safer on one of these drugs, talk with him about trying another one, or maybe just taking a couple of weeks off. Whenever i see my onc, he listens to my arimidex gripes, then offers two or three workarounds. I love this, because I know I'm not stuck in a box. Also, as you may have read in my earlier posts, I found my own solution to hip pain--ordinary, everyday aspirin.
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Bosum - being a cranky-pants is totally acceptable here
......we all understand! The fatigue I've experienced is more annoying than crippling. Do you sleep well? If not I would recommend trying some sort of sleep aid. Exercise can help greatly but if you suffer with crippling fatigue right now you're not likely up to working out. I work out quite regularly unfortunately it doesn't seem to help my sleep habits much at all. I would be in the nut house if I didn't use a sleep aid. I've tried everything from Tylenol and Ibuprofen PM to Melatonin to Sominex to Z-quil and am now taking one 10mg Ambien at night. The Ambien has worked the best so far. My sleep can still be somewhat restless but I'm pretty much out for at least 5 to 6 hours (it's been YEARS since I slept that long in one continual stretch!) and when I wake up I'm not groggy. Oh, and I don't have nearly as many strange dreams on Ambien as I do on OTC stuff.Edited to add: I just read back through your previous post and want to say don't you dare let yourself think you're being lazy! No, no, no, no! Your body has been through hell and is now dealing with pharmaceutical stuff messing with it. The fatigue is a side effect, not laziness. You WILL get through this. If no one else in your life understands what you're experiencing right now dont' forget that WE DO. You can rant and rave and vent and bitch and moan here any time you want to, but please try to remember that 'This too shall pass.' It ain't always easy and sometimes it's downright miserable, but you WILL get through it. We're here for you.
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Bren it's actually best to put it on when your hair is wet. Why? Because your hair will absorb less when it's wet allowing more to be absorbed into your scalp. I would say the morning after the shower is more important than in the evening because more will get into your system.
YaYa5 Ask to speak with your onc about this. You can't be a little bit pregnant was my understanding of hormone positive.I'm with Ruth. Anastrozole might be the most effective tool against hormone positive. That's why some only get that and no chemo.
No one asked me what is the meaning of life but does it really matter. Just enjoy it!BosumBlues when you feel like crap it takes a lot out of you... and each day you feel like this it wears on your more. Cranky is normal. We all get that way at times. But you need to get this addressed. Call the MDs. If you were lazy you wouldn't care about being lazy. You're just tired and wiped out. Totally different.
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Lago & Ruth,
You both are my cheerleader regarding Arimidex...thank- you. Moving is the best thing we can do. I called it the "wonder" pill. I guess I wonder if it will do its job. Still struggling with the panic of stage 3, but determined to live & enjoy.
Hope all has a great weekend, I plan on getting out, walking & hitting some golf balls.
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Thank you back! Hitting golf balls, walking and/or other exercises, retail therapy, hanging out with people you enjoy, planning (and then doing) fun/interesting/rewarding things, and helping others are the best prescriptions for a happy life for everyone, and especially for us!!!!
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Ha! The wonder drug! I sure 'wonder' if this one is going to work for me, too.
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Mine pretty much did.
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Good morning ladies, I have a question that I haven't seen posted before. I have recently quit taking arimidex due to SE. Someone told me the other day that if I had a recurrence down the road my insurance may not pay for treatment if they knew that I had refused a treatment that could of prevented recurrence. Has anyone heard this before. I have Humana Insurance. I find it hard to believe since taking it isn't a guarantee anyway
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Kathie That's sounds nuts especially with Obamacare and pre-conditions no lonter an issue. You can always ask your insurance but you should have to do treatment to get treatment. If I refuse treatment for osteoporosis and break a hip I don't believe insurance can refuse hip replacement.
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Thanks for the input, that's what I thought. Just to give you more info the person passed from mets to the brain and the family had to gather info from her Dr's saying they did not diagnose her with any cancer nor did she refuse any treatment. How it came to the forefront was after she was diagnosed she made a comment 'I guess it got worse.' which her emergency room Dr documented in her file. The insurance company did treat her but the family did have to go to all the Dr's that was reported on her insurance to confirm. This was 4 years ago before Obamacare.
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Insurance won't cover for skydiving, bungie jumping and a few other things. Also as far as reconstruction surgeries... There will be a point when a good doctor will say this is all I can do for you. You can't revision for ever.
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I, personally, wouldn't put anything past the slimy insurance companies. Blue Cross/Blue Shield of North Dakota does not pay for a wig, because they don't 'consider hair to be part of the body' (if you live right across the border in Minnesota, Minnesota's Blue Cross does pay for a wig......apparently hair becomes part of your body as you cross the state line)!!!! I contested this all the way to the North Dakota Insurance Commissioner to no avail (and what a surprise, shortly thereafter the Insurance Commissioner resigned to take a job as a lobbyist for the insurance industry.....grrrrrr, I am still mad!). That does not at all answer your question, nor is it Arimidex related.....is there a way you could anonymously ask a Humana representative (I don't think I'd want my name in their files as asking questions), anything in the fine print of your contract, do you have a friend in the insurance industry who could snoop around for you?
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Actually a social worker or patient navigator (if available) at your treatment center should be able to help you find an answer to this.
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My insurance has a nurse that contacts me every 3 weeks to see 'How I'm doing.'. they also ask to enroll me in Humana Achieve which sets goals for me and follow-up weekly. I'm beginning to think this is on purpose since I stopped arimidex, but that's probably me being paranoid. I want to think its all good but, and that's a big but, they didn't do for my husband who last year at 49 had stints put in his heart.....I find myself being cautious of what I say or if I even answer the phone. 😉 who knows, I'm just trying to be the best I can be. Lol
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Dealing with the insurance companies is such a love/hate relationship. I am glad they covered everything they did going thru all the testing and tx, even the BRCA testing. However they wouldn't pay anything towards a wig, no matter how the doctor coded it, and we have what they call a "premium" plan. In January I had 3-D tatooes done at my PS office. At first they said it did not need pre-approval, now they are telling me that it is cosmetic and not medically necessary and won't be covered. On the other hand they are telling my PS that because they didn't get it pre-approved it won't be covered. Always an adventure
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Kathie100 I had a nurse call when I was on chemo and had BC&BS of MA. My last chemo was in January and new insurance (BC&BS of IL) so the calls stopped. If you don't want her to call tell her but that's how I found out about Claritin for Nuelasta pain.
BC&BC differs from state to state and plan to plan. I found the BC&BS of MA great as long as things were coded properly. They covered my wig. BC&BS of IL not as good. Aetna sucks but could be worse. They covered my nipple tattoos but what they felt was reasonable and customary was a joke.
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Reading the info from Kathie100 said about the ER doc reporting a remark made casually reminded me of my feelings when my husband was very ill for weeks in hospital. I found that many casual remarks to nurses or docs and even between husband and I were documented. They repeated comments back to me from his record that I didn't know they heard or listened to. Although it never caused real trouble, there were judgements about mood etc. Even judgement about my mental health as he got sicker and sicker because i was so anxious. I learned to be much less chatty when there were others in the room. I can see how a remark could cause trouble with insurance companies.
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