For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Okay, just reading about it and I'm kegeling again! Peggy - I am married to a rose-colored glasses guy. Opposites do attract! Your husband is lucky to have you - trust me - your way of seeing the world rubs off on us. Again, thanks to all of you for sharing the AL/bone density info. Finished rads today, have bone density test Friday and start Arimedex next week. Peaceful night to all, Linda
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Nothing like doing Kegels at breakfast as I read all these posts. Maybe a good thing since I'm having coffee
Moonflwr, I think I do them both ways. But more often elevator style (what a good description). It's however I learned them in my Lamaze class back in the Dark Ages!
Booklady1, YES for finishing your rads! Hope your SEs have been mild. You'll do just fine on Arimidex!
HUGS to all of you!
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Booklady: congrats on finishing your rads!
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had the steroid injection today. Does it work immediately? Maybe a little bit feels better, but not a ton. Felt great while the lidocaine was working
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Fluff, the one time I had a cortisone shot (for a ganglion cyst), I recall it working right away. But it's been 10-15 years ago so the memory isn't reliable. I'll bet it did feel good while the lidocaine was active. Hopefully, the cortisone will kick in NOW!! HUGS!!!
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I noticed a big difference within a week of the shot. In a month my thumb was completely healed (for 9 months, now back), :---(
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Hello all on Arimidex!
Oh that drug almost killed me and Aromison too! I had such bad arthritic pain in my wrists and thumbs that I was in total tears one day in December last year. I said, "I can't feel like this for 5 years!" I changed MO and was told that I shouldn't have started that med during cold months. Now granted, I live in Southern California, but we had a very cold December. The med peaks in 3-6 months and cold weather effects it. So I started Femara about a month ago so warm weather will prevail during the first 3-6 months your body is getting used to it. Well, I am doing great so far on Femara. I have ILC and this is the drug my MO prefers for this DX. My hands are so much better with very little pain left. Some sore areas on the wrists if I turn them wrong, but I can live with it. My right knee had a bit of pain and it is better as well. I use the arthritis cream Australian Dream and that seems to help as well. I take CoQ10, liquid D3, liquid B complex, Aleve and Glucosamine, Coral Calcium as well. I am praying that this combination will get me through the 5 years.
I am 5 weeks post exchange surgery so feeling really good and healing well. Hugs to all of my sisters in this continueing battle. God has given me a wonderful peace about my DX and recovery. Only in Him do we get our strength.
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Robin, first I've heard about not starting anastrozole during cold months. I started in October and so far no issues at all. Glad you are doing well on femara. HUGS!!!
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Robin I live in SoCal too and I have ILC. I can't take Anastrozole at all though the Accord brand is all I've tried but after my experience even if Teva were offered I don't know if I'd have the courage to try Ax again from any maker.
Maybe I'll ask about Femara. That'll take a big gulp of courage too...after what happened on Ax. *shudders*
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Cindy - I was diagnosed with osteopenia early on in the game and the drs. here put me on something like Fosamax for two years (which they took me off after two years because it apparently can have a negative effect on the heart if you are on it too long!) and a dexa scan once a year. Since I stopped taking an AI last September, I hopefully will only have to have another dexa in September, 2015. I am so sorry to hear about your problems with AIs - I also had to stop taking them after only 3 years and 3 months. This medication is definitely not a one size fits all and most definitely has the potential to do much more harm than good. I am still scared about not taking an AI anymore, but I am enjoying feeling human again. Unfortunately, there are a lot of oncologists out there who do not listen or take their patients seriously! I am so sorry to hear what you are going through and am sending you big hugs from afar XXX
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Hi Cee,'
I have been on Femara for 6 months and the pain, sleeplessness and hair loss has me nuts.
I tried other meds in this category and they all lead to hair loss. Sorry to give such a bad review of Femara but
hair loss is a big thing in my life and don't want to go back to wearing wigs. Has anyone else losss with these death drugs?
Thank you and good luck.
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Oh no worries Glowcat. One has to decide on a good QoL of life, at whatever the cost.
Personally, I feel doctors are not honest with people with regard to these AI's and the potential for damage.
I've read too many posts, in this thread and others, by ladies who take the AI's and tell their oncs that it's causing them trouble, only to have the onc look them right in the face and say that their problems are caused by something else; or it's all in their head.
Heck, ladies even do it to each other here.
Oh, maybe the pain I had on Ax was me passing a kidney stone. I had someone tell me that b/c I READ about the possible issues of AI's, that it happened - a psychosomatic thing. I'm sorry but, what a pile! I took my pills and had NO problems UNTIL I took them. I don't have to be Sherlock Holmes to know that if I take something and feel bad, then it's what I took. AND, when I stopped, the problems cease. 2+2 does = 4.
Mind you, what happened to me was likely an allergic reaction, but it STILL happened and it WAS caused by the AI and nothing else. Since I stopped taking it I'm completely back to normal. Two doses of Ax and it took me a week to recover, and I had stiffness in one finger for 2 months....from 2 (two) pills. Yikes, this stuff is dangerous!.
Why do they look for some other issue instead of admitting it's the AI? All you have to do is read the threads around here to see all the issues affecting ladies on the AI's.
I feel the reason the doctor wants to play the blame game for other issues is, if he sat down and looked a patient in the eye and went over all the possible stuff that could happen to us on the AI, not many patients would be interested. So they give us the scrip and wish us well and move on. If oncologists actually had to try these things for a while maybe they'd change their tune.
WHY do we do that? Maybe some people need that as a way to go on. Maybe it comforts them. It doesn't comfort me. I want the doctor or whoever to give it to me straight:
'AI's are going to age you and make you feel like crap. But if you don't take them, you'll die of the cancer. Mind you, you may still die when the AI quits working but the question is, do you want to feel good for as long as possible, or live for as long as possible? Here's your scrip, but it's your choice.'
Now a doctor like that I can respect and trust because he's telling me the worst, first. The best will take care of itself. Better that then being told all the "best" stuff and then have to deal with the worst on my own. That would be terrifying. I prefer it the other way around.
Glowcat thanks for the heads up and honesty on Femara. It seems all the AI's cause the same issues. I am still debating whether I want to try them at all. I keep reading these forums and sorry, I don't buy that there's thousands of ladies walking around out there SE-free. I think they do this to everyone and the few who have no SE's are 1/10 of 1%.
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Cee67 - I feel EXACTLY the same way. It's a pile! I'm not the type to bang a drum of "don't take medicine" if it's going to help, but I swear, if I had known, I would never have taken the AI's.
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I'm of the opinion that there's no remedy for cancer. A remedy means taking a thing, feeling better and moving on with life and feeling fine.
I think they're on the right track treating late stage cancer as a chronic condition but we're still waiting on meds that can do that without messing us up.
We've not come near as far with cancer tx as the establishment wants us to believe.
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Just a caution here - I flunked all the AIs and am well known on this thread because of my complaints BUT I have progressed over the last few years to Stage IV because I DID NOT take the AIs - it was my choice because I was just miserable on the AIs and my QOL was non-existent - that said, I am 69 years old, a widow without children so that was my choice - it is not for everyone and please understand that the cancer can progress - my complaint really is that the se's can be just awful and I wish money would be poured into finding better long term treatments - also wish that MO's would start admitting that the se's are real and not in our heads. Also my very best friend (for over 65 years) was on Femera for 10 years and had NO se's.
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I feel that women are not being told the truth and given all the information needed, so how can they make an informed choice?
Would anyone go and make an important decision about a thing - I don't care what it is - without having all of the facts on said decision?
Giving us a handout on the drug is nowhere near the same as having a doctor tell us what might happen.
A few weeks ago I was having trouble with my appetite (lack thereof) and my GP gave me Reglan (metoclopramide) because it can stimulate the appetite. BEFORE he even allowed me to touch the scrip he said, I need to tell you about a rare side effect of this medication called tardive dyskinesia. It involves involuntary movements of the mouth - lip smacking, puffing of the cheeks, other movements. It can be permanent.
A person is at greater risk of these if they take the med for longer than 4 months. I took it for less than a week (it didn't work for appetite for me).
Now, WHY can't our oncologists have a chit-chat to us about these AI's like this???? Is it because they get a kickback of some kind from the drug mfgr? Is it because they don't want us asking them questions and taking more of their time? Do they simply not care?
My GP gave me all the information on Reglan so I could make an informed decision before swallowing one.
This is cancer we're talking about. Our lives are on the line and we need to be as informed as we can be, and while these forums are a great way to glean information, the first info we receive should come from our oncs and they need to be as open and HONEST as possible, even if we don't like what they're telling us.
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wrist is hugely better today! Woo hoo. Hope it holds for awhile.
I was in macys the other day helping a customer. She mentioned something for the 60's and I said oh I remember that! She said, Oh you lie, you aren't old enough. Told her I would be 60 this year. She said I didn't look over 47. I'll take that any day! I must hide my creaky joints well, lol.
I felt I received good information when they switched me from tamoxifen to arimidex, but I was in my ONC's office who had my ob/gyn on the speaker phone so it was a group conversation. They were pretty honest about everything. For me, Quality of life is important also, but other people have to take drugs that have equally bad or worse side effects for equally serious diseases, so I'll do my best to push through .
Honestly at the moment, my biggest problem is painful sex, which I am working on, and this wrist issue, which I'm not sure is related to the AI. Joint pain is so much better since I started Cymbalta. I'll just keep looking for fixes for the problems. If I was 20 years younger, I would probably be affected.
Whomever asked about hair loss, I have had some mild shedding on the arimidex, but it seems to have eased off now, and it wast ever anything that required addressing. I just kind of kept an eye on things and noticed more hair in my bruch, and a few more loose stat rands floating around
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Hiya - Well, I'm going ahead and starting Arimidex on Monday when I'll hopefully be feeling better with my aching, itchy, yet happy-to-be-done-with-rads breast. Had bone density test today and my MO and RO will compare results to the one I had two years ago and talk with me next week. I am lucky (?) that I have been followed closely by a great PC and OB/Gyn over the years. Also, over-educated about all things BC as my mom was diagnosed the same day as Betty Ford, back in the dark times. She made it for over 30 years, and she suffered every side effect known to woman. She always said she didnt mind being a guinea pig and was grateful for every day. That was my mom. She had more strength in her little finger than I do in my whole body. Thanks to her (and good insurance, I know) I have a MO and RO who are great at their jobs and tell me the truth so, along with the advice and sharing from y'all, I'm going forward. Have a great weekend - Linda
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Seriously? Some or your oncs did not properly inform/warn/prepare you for AI? Isn't that illegal in these full disclosure days? I know your reaction was off the charts, Cee, and probably there is not an onc out there who would/could have addressed that, but many of the rest of you too?
Well, my onc, when he started talking about AI's dove right into the issue. He went over all the potential side effects from the point of view of being there to help me through them. I think even before he addressed any side effects, he talked about drug holidays, and the fact that there are several meds, and we could try different ones. (Yes, Cee, having tried both arimidex and exemestane, I can assure you that different AI's do have different side effects.) I've said this before, but in my opinion, the main role of the onc is to help us through our treatments. Something like an AI, which is known to produce "difficult" side effects, needs to be presented, and managed, and supported, if there is any hope of the patient sticking to the plan.
I think the reason the oncs push AI's is simply that they subscribe to the statistics--chance of recurrence is reduced by about half for most of us early stagers, and the med can slow, or reduce the size of, mets. If these two facts were not clearly validated, no onc would, or could, push any of these pills!
I just found this on a 2011 ABC news story, "According to a survey of nearly 700 women on the drugs, 36 percent of them stopped taking the pills after four years, citing a number of intolerable side effects; 10 percent quit after just two years on the drugs."
My side effects (stiffness, especially on standing, and thinning hair) are annoying. If the stiffness gets too much, I skip a pill, or take half a pill, here and there, or take a couple o f weeks off (this with my onc's knowledge and approval), and it gets better. I've made it two years, so I guess I'm not in the 10%. Working on not being in the 36%.
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I am not saying that no one has problems, and that some may have significant difficulties. But I personally was NOT aged, I did NOT feel like crap, I did not lose my hair, I did not have bone loss, I did not do bad in the winter (actually winter was good because I did feel warmer at first), I did not get arthritis, nothing. I felt great, looked great, did everything, everything, everything I have always done (and actually I've done more....things that I had put off for 'someday'). And another good side effect, possibly from the drug, is that I am alive and WELL eight years later.
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"Personally, I feel doctors are not honest with people with regard to these AI's"
"the se's can be just awful and I wish money would be poured into finding better long term treatments - also wish that MO's would start admitting that the se's are real and not in our heads."
Don't get me started. It was my PC doctor who admitted that the SE are hell and many of her patients didn't even last a year. I'm now 4 years, 2nd AI (Anastrozole 1st now Exemestane). The MOs are trying to save our lives, I understand but it is more frustrating when they say these SE are not from the AI. Even when I quit one for a week my MO felt some of the SE weren't from the AI even though I no longer had the symptom!
I'm doing OK now though but do have osteoperosis. I have a family history so I knew the AI would be a problem.
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I'm alive to bi$ch about my se's. I'm very grateful for that.
I just hope your comments don't scare the bejeebers out of the newbies.
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Me, too, SpookiesMom. I've had no SEs and several people I know personally have had no trouble on AIs. For those of you just starting out, please remember that a great many people have no issues with AIs. But they are usually not the ones posting here. I'm not diminishing the problems that can occur with AIs at all. But NOT EVERYONE HAS A PROBLEM with AIs! HUGS to everyone on their journey!
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One more comment before I put you on blocked.
Do you take aspirin or Tylenol? Did your doc warn you about those " innocent" drugs having se's up to and including death?
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SpookiesMom
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Brookside, NOPE, my MO has been the opposite of yours! Even through chemo, she never said anything ahead of time about what SEs might occur (the chemo nurses were much better). She put me on tamoxifen and the only SE she would admit it might cause was hot flashes. I gained 30 lbs on that evil drug and she blamed it on menopause. I got terrible joint pain and at first she denied it was the tamoxifen! Then when it got so bad I couldn't keep going, she offered some suggestions (high dose vitamin D) and eventually switched to anastrazole. She has not mentioned one single SE for that. I brought up the osteoporosis issue, so she sent me for a bone density test before starting. I said "aren't the AIs even more notorious for joint pain than tamoxifen?" and she just said everybody is different, you never know until you try.
I can understand that the power of suggestion is strong, and they don't want to "put those ideas in your head", but when SEs do occur, it's just plain wrong to deny that it's the drug, and not offer you any help or options. And too many of us have too many stories of that happening.
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I guess whether or not we choose to take any medicine is entirely up to us. Those decisions are probably tempered by the stage and grade of our disease and our overall prognosis. I am so sorry CEE that your cancer wasn't caught earlier.The doctors role is to give us his best advice, but ultimately you are in control.
My rule has always been to always do what I think is right--that way, if something goes wrong, its just on me. but I won't be sitting here saying I wish I hadn't done that when I thought all along I shouldn't...... My doctor did go over the side effects with me. My pharmacist and I have had candid conversations about it. I had taken the time to read and research all I could about all of them. from the minute I had my path report and was determined to play a role in the decision making. If I didn't think my doctor was a good fit, I'd try another doctor.
. I've decided that the side effects so far are not as bad as having the cancer return to my bones, my liver, my brain or my lungs. We all know I took Femara 5 days and said No F'ing way will I live like this. The Arimidex is night and day for me in terms of aches and pains.
I will take the medicine in one form or another for as long as I can. I am not reluctant to tell my doctor if something is not acceptable to me. Just because it doesn't work well for me does not mean that nobody else should do it. Nor does it mean they will experience the same thing as I have. I appreciate the comments and tips and suggestions others have made, whether it has been over different brands of the same drug, or a coping mechanism.
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Yikes, Jenny! I had one of those, "not from the drug" conversations with a nurse and pointed her to the small print at the bottom of the prescribing information. She responded that she was using a website that posted only the most frequent side effects. I spoke "quite clearly" to her about familiarizing herself with the medications her office prescribes. I have her name engraved on my mind, and do not plan to speak with her again. I'm not proud of my response, nor of the fact that just thinking of that months-ago conversation still raises my hackles. Maybe we should all have these side effect conversations with the medication printout in our hands! Show and tell is always fun.
The first time I met with my onc, before I had the oncotype and he nixed chemo, the conversation was mostly about chemo and its side effects. The onc actually took notes for me--wrote down everything he wanted me to remember. I thought that was absolutely brilliant. At those first appointments, with practically no background in this cancer stuff, how can we know what we need to remember
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Well, put, Red!
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BrooksideVT, I've never heard of a doctor of any type writing down stuff you should remember. That's beyond wonderful. We don't know anything going into BC; there's so much to learn. All the terms are foreign to us, treatment choices, chemo, AIs - nothing makes sense. Your onc is definitely a keeper! Then again, that nurse was definitely not a keeper. HUGS!
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