For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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School mom that's awesome to hear! I can deal with joint stiffness if it means the cancer stays away. So far, I've been dealing w some nausea. Still on half a pill.
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I think a good thing to do is to start out on the AI's in a 30 day supply script....in the beginning it might cost more, cause a 90 day supply is cheaper if you go "mail order" which works fine.....I have Aetna insurance and they use CareMark which is CVS.........
When Ibegan on Femara and then went to Letrozole I did the 90 day........after 3 1/2 years switched to Arimidex because the Letrozole SE's got to hard to handle....(foot neuropathy was the straw that broke the camel's back)....LOL
So when I decided to try Arimidex since my SIL's mother has no SE"s, I just ordered a 30 day supply knowing that if I got the SE;s back, I was stopping that one also so why buy 90.............after 3 days on Arimidex (anastrozole) I had SEs.....did it for 3 weeks, then stopped again........going back to the MO, and really have a long discussion about what my chances are.I have the actual report .
I spoke with someone at the National Cancer Institute, and they said my chance of recurrence was pretty low becaue of my tumor size, margins, no node involvement, oncotype score, 38 Rad treatments (including 8 boosts directly to the tumor location)....and 3 1/2 years on Letrozole........
Now I read about a 33 year survivor who had none of the above...........sure makes you wonder doesn't it.........
My MIL who is now dead (natural causes)....had a cigar sized tumor when she was 70......she had a masectomy.
No Chemo.......She had 25 Rad treatments............
No tamox or AI's.....they were not even on the market back then.............
She died 26 years later at the age of 96........so can someone explain that too me......
We are being treated......chemo, "the devil pill", and many putting up with the SE;s of both.........not having real quality of life for many of us who do get some or all that there are................
So we are being tortured to stay alive, but not really "being alive".........so many of the women are just existing from day to day, and treatment to treatment.........and it is sad..............for everyone one who has no SE"s there are 100 who do.............
So who can explain the women who survived 33 years, and 26 years and one had only Rads..........ok, its only 2..........but have we really come that far............think about it...........
I'm not saying do nothing for your cancer, but I am baffled over people who did nothing...........andl lived all those years to tell their story................and my MIL died from complications of pneumonia.............
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I hear you, Ducky! No one really knows...
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well think on this one, a old friend reappeared in my life, seems she is now 77 and has survived 2 times breast cancer, lumpies nothing else, this was during the last 25 or so years. well she has continued to smoke during all this time. Recently she contacted me to drive her to a doc apt, she now has a spot on her lungs. You guessed it, lung cancer. The surgeon has said she must stop smoking. She claims to have stopped since she wants hip replacement and the docs are refusing to do that if she is still smoking. She gets annoyed with me when I say I will not get together with her as long as she is smoking (I have asthma)
so is she nuts or am I ? I don't even know how to talk to her as she keeps saying she likes to smoke~~
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She's an addict and in denial both.
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Iris, as I believe I said earlier, you have to do what's BEST FOR YOU! She hasn't been interested in keeping up with you for the past forever. I believe you have no obligation to run her around and endanger your health. You're not nuts. She has made her own decisions about how she wants to live her life and those decisions are not what you would do. Just wish her well and put her in touch with a senior group that can take her to her appointments. I would ask you to not be too judgmental of her continuing to smoke. She knows it is not good for her. Just stress that with your asthma you cannot be around anyone who smokes and leave it at that. That means the door is open if she does decide to quit and perhaps the friendship could be resumed. [As a point of clarity, I quit smoking 17 years ago and I still associate with those who continue to smoke but I don't have asthma which would make that totally dangerous. But I'm me and you're you - which makes the world so very interesting!!]
HUGS!!
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Ruth, very true.
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I know, I have to just say no when she calls, I will but will still feel sorry for her
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I understand that completely, Iris. Just keep stressing that with your asthma you just cannot possibly help her out the way you would like to. That leaves all the doors open, nothing anyone can argue or feel hurt about, and seems to be true from what you are saying. It does get tricky, doesn't it?
HUGS!
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I feel sorry for her too. But you can not let it endanger your health.
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Pegg,
they just want to see what I'm starting at, or rather I want to see and my doc agrees. She said actually that's a great idea, as the lower they are she says the fewer side effects. I haven't had any hormone levels checked since the first gulf war, then they were basically non existant after chemo
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Just for the record........even if she doesn't smoke when she is around you, in the car or otherwise........if she smoked before she got to you, in her house, or anywhere inside, or has worn a coat or clothes that she had on while she was smoking and did not wash them or have them cleaned the smoke smell will still be one them..
I know this for a fact cause my entire family has asthma........grandparents, mother, me, children, grandchildren.......and if anyone comes anywhere near us who has smoked we sound like a TB Ward in some hospital..............so just bcause she doesn't smoke by your side makes no difference............unless your not as sensitive as we are to the smoke...
When I go to my grandaughters softball game there is a woman who smokes......she goes behind the bleachers to do it, but the smoke flows forward to where we are sitting, and I cough lke I'm dying.......LOL.........and that is outside in an open field, and not during allergy season..............
Just saying...........
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Suladog, you're right. It can't hurt to have those levels checked. I didn't have hardly any trouble when I went through menopause, just some nice flushes that I appreciated. And nothing from the Arimidex. Be interesting to see if the levels are zilch or if they bounced back
HUGS!
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Hi ladies,
I have been on Anastrozole since the beginning of the year and switched from the Accord brand (india) to Teva brand 2 months ago. I have noticed that I do not get any hot flashes anymore. Is it because I am using Teva brand for 2 months? Could it be my estrogen levels have increased lately? Any ideas?
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New2BC, you should hope that your hormone levels have dropped! I don't know how old you are nor your dx and treatments since you haven't made those public. Had you been in menopause before starting the Anastrozole? HUGS!
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Peggy,
My last hormone test in December showed that I was in menopause. I am 53 years old. I think either the Teva brand causes less hot flashes or my estrogen levels have increased. I think when estrogen levels drop, then your hot flashes get worse. That is why I am thinking my estrogen levels have increased so that is why my hot flashes are gone. Or the Teva brand has different fillers that cause less hot flashes. Anyone with similar results?
I also have urinary incontinence when I jump on the trampoline. I don't think Teva has anything to do with this problem!.
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New when I switched from Femara to Letrozole,,,,,,,my SE's were a little less, but I still had them...I never got hot flashes on Femara or LEtrozole......FYI...........Letrozole is the Femara Generic in case you did not know that...Cost was a factor for going to the generic in this case, but after 3 1/2 years I got foot neuropathy which I could not handle.......it was bad, so I tried Anastrozole (Arimidex) which was worse.........
But it is possible the Teva brand decreased the hot flashes......and yes the fillers and the dyes make the difference........doubt very much if it is the estrogen increasing.............the AI's kill your estrogen........if that eases your mind........
You can always request a tet of your estrogen levels.
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duckyb1,
Thanks for sharing your story. Yes, I can request to test the hormone levels again. Do you take any AI right now?
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Ruth and Peggy, thanks for slapping me up to remember to think of my health! I too sound like a frog horn at times when the lungs get crankie. I think when this pal calls, best to follow the caller ID and not pick up.
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Iris, not picking up is an option. However, you might consider what I suggested earlier and tell her that your health won't allow you to be around anyone who smokes and that even smoke on clothing is enough to trigger an asthma attack. Say that you're sorry but that's the way it has to be. Refer her to senior services and say goodbye. You don't want her continuing to call and annoy you and that should take care of the problem. Just a suggestion. I think that's what I'd do. But you know your friend and how to deal with her. You don't need an asthma attack!!! HUGS!!
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Ruth, oh I already told her that I had an asthma attack the day I took her to the oncologist and she did not smoke while in my car but figure, she smoked before the got in the car. It does not register to her and she ignores my comment so really, best for me to not pick up the phone. What good is caller ID if not to use it....
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Iris, in that case, use the CallerID!!
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New2
No, I am not on anything......there are about 10 pills left in the bottle, but I have not finished them........I took 21 of them which was 3 more weeks........I was so hoping I would do better making a change to a new AI, but it didn't work that way............some people are lucky and get a few or none, but I can tell you after being on BCO for just over 4 year I can tell you this.
There are a lot more women who have bad SE's....I know many who have given up.............and chose quality of life of quanity.
Regardles of what it was...no one I know of ever quite because of hot flashes. or thinning hair........it was joint pain and aches so bad we can't get out of a chair, or walk any distance.........I never had bone loss, I now have ostopenia, and so far this year I have not gotten my dexa scan this year................no idea how much bone I have lost since last year.
In the beginning I had "trigger finger" , but that eased up a lot with the first year..........it was more annoying then anything else, but I did develop arthritis in my joints and my fingers go north and south...LOL
I broke 2 vertebrae one was repaired the other it was too late but even that is tolerable.........however the lower body joint pain is the worst.............
So to answer your question........No, I am not on anything now............and after stopping letrozole my SE's eased up almost 75%........not so with Arimidex I still have them after being offit for 2 weeks, I am sorry I started it...............
The main reason I stopped the Letrozole was after all that time I developed Neuropathy in my feet, and that was brutal......once I stopped the Letrozole the neuropathy wwent away.
But more annoying then anything was being dizzy..........and walking like I was drunk...side to side, horrible balance......LOL, and not even having a drink............I told my kids...........if I got stopped by a cop for any reason and they said "Ok, get out and walk that straight line heel to toe".........I would have to say "officer take me to jail, cause there is no way I can do that maneuver..............LOL.
I didn't want to even start the AI, but with the help from the ladies here, even those who had stpped taking it because of SE's they never discouraged me........they cheered me on, and said "try it cause remember you can always stop..............and that is what I did.......I still keep in touch with those ladies and am grateful I did do it for 3 1/2 years.but like them I could not go any further.
But I say "try because you could be one of the lucky ones".................and who knows, maybe I will try to complete my last 1 1/2 years......................I just hope the first 3 1/2 were worth the struggle to stay with it...................so far...........so good........
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ducky....my mom has struggled for years with an enlarged arm from the radical removal of lymph nodes. Standard surgery in the 80s. It limited her clothing choices. She vaguely remembers taking a pill a few months and that is all she remembers. I don't know size....but she found it so it was big enough to feel. She doesn't know hormone or her2 status. Things were different then. I just read if you have er + breastfed at some time you have 48% less chance of recurrence. Article is on website. My chances just improved!
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Here is the article Breastfeeding and recurrence. I ought to be golden since I nursed both boys for over a year. Let's hope the research holds up!!!
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Schoolmom......i have lymphedema too..........got it about 3 weeks into Rads........just another thing to deal with.........
I had therapy, custom sleeves that no one could get right......did the LeBed exercises all the time, but it is something once you get it you have it for life..............
Just dealing with it all................doing the best we can right................
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Hi All - Just wondering if any you with a natural breast taking Arimidex is having any breast tenderness/pain?
I feel like I have gone through most of the side effects of Tamoxifen (2010-2013) Anastrozole (2013-2014) and now Arimidex (since April 2014) and have been coping ok. Up until recently my only lingering side effect is the achey bones.
But about 2 months ago I started having weird "sensations" in my natural breast. It's almost like a burning nerve type ache rather than a pain. It feels like I have a rash or something but there is nothing visible on my skin.
I went to my GP who gave me a thorough breast exam and felt nothing. She looked up Arimidex and told me that Breast pain/tenderness/swelling is listed as a side efffect.
I'm a bit surprised because it's been a year since I started taking Arimidex and didn't think I would develop new side effects like this.
Anyone else with this odd breast ache?
Marie
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duckyb1,
I am sorry for all the bad side effects you had. I had osteopenia before my diagnosis. So after AI, it is going to be much worse. Was your anastrozole made by Teva? This is the one with less side effects. That is why my hot flashes have stopped. I hope all the bad side effects go away soon. Have you tried curcumin with black pepper for pain?
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new2bc, don't assume your osteopenia will progress during your time on AL. I had osteopenia but had taken Fosamax for likely 5 years before I was diagnosed. I was ok at the start of the med. But when I read about the bone loss as a side effect, I changed and increased my time in the gym, also got much more regular in taking calcium. Result was that the dexa scan at the end of the 5 years was still normal range. So hoping for the same for you. Oh yeah, the gym kept my mind in shape as well
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Hot Flashes we all have different triggers. Mine are from hot peppers like Jalapeno…but I eat them anyway.
Lymphedema. I didn't have radiation but did have 10 nodes removed from my left arm. I was diagnosed after my 4th chemo. I wear my sleeve daily and exercise. I have it under control. I'm lucky
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