For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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208Sandy, that's wonderful that your cortisone shots have been painless and have worked so well.
When considering SEs and people saying you're scaring newbies. Perhaps what was meant that newbies should be reminded that not everyone suffers side effects and not all side effects are debilitating. Obviously yours have been awful. We need to have everyone post here - good, bad and in the middle. That helps us all. We can be aware of what MIGHT go wrong and be on the look out for it to catch it early. And so many of us have offered solutions to the SEs that have worked for them. I think we all are able to contribute valuable information for new and old alike. HUGS!!!
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Jilly, AND they seem to make the print on those inserts so small that they are impossible to read. Good luck with your appointment. Let us know what you and your MO decide is the best drug for you. I agree that all this information here is very helpful.
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No mod will help me and they've told me that "viewpoints" are okay, but not personal attacks. I've moderated on forums like this one and was told that a PA is anything directed to a specific person, as in my own topic now...but mods say is okay. But I'm in the Alt forums and no one cares if we get beat up.
I've been told more than once (in this forum) that what happened to me on Arimidex happened "too fast" and that the SE's I got HAD to be from something else - like a strained muscle or passing a kidney stone. Or that I was "looking" for the SE's and they came due to that.
Yeah, hubbs had to help me on and off the toilet it was so bad...yeah, all in my head...sure. My onc says the same - no one could have SE's in 2 days on Arimidex. I get so tired of having to justify myself. I *never* thought my SE's would be regarded so antagonistically
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Cee67, what a bummer. HUGS!!!!!
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Cee, so sorry if I caused you pain. I know I'm the one who suggested that because your experience was so atypical, perhaps your excruciatingly horrid experience (which I do not minimize) might have been caused by something other than the arimidex, something that just happened to raise its ugly head just as you started the drug. Stranger things have happened. I was simply trying to be helpful, hoping to point out a path that perhaps you might consider, and that would/could allow you to give Ai's another try,
Incidentally, like you, I've reported a post that the mods determined was OK. Afterwards, I did a search under member name, calling up all this person's posts, and found she was normally a pretty nice person who had just gone a bit off the rails (in my opinion, at least). I do not know whether the mods contacted her, but it did seem her gentler side came forth thereafter.
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The mods just messaged me and told me that viewpoints are okay in my thread directed against me. I said I'd then share my viewpoints of my "views" on conventional tx, which I felt would be okay as long as it was only a viewpoint and not a personal attack.
Now my topic has been shut down, a PM sent that I need to consider if I wish to keep posting here, and that I am NOT allowed to offer my viewpoints on chemo. I tell the mods they're being unfair but they don't agree.
I'm sure I'll be deleted shortly. It was nice knowing all of you.
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The SE's I had on Ax were not present until I took it and I'm on no other meds. Upon stopping the Ax, the SE's slowly went away. Doesn't take a rocket scientist to know it was from the drug.
3 hrs after dose 1 I had foot cramps.
8 hrs after dose 2 I couldn't move my hands at all and was in excruciating pain around my middle - like a corset. The next day, with no further dose, I became severely dizzy to the point I couldn't walk.
It took 4 days after dose 2 for those Se's to leave, and the hand stiffness is still there in my left hand but it's mild. I had NO stiffness in my hands before trying this stuff.
BUT, I've asked my pharm. to order the Teva brand and, IF I get my nerve up, I'll try it since I hear Teva MAY be better. I dunno tho....I'm really scared to try that again.
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Cee67, it almost sounds like you are allergic to anastrozole or one of the ingredients in it. Hopefully, Teva will work better for you. I can understand how much courage it will take to try any variety of anastrozole. Perhaps the brand name might be better for you. Or another one of the AIs. Whatever the case, good luck with what you decide. HUGS!!!
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I would recommend getting any severe, strange, or sudden symptom checked out; it absolutely might be Arimidex related, but also it might be something else.
Cee, I hope that you will be able to find some answers and peace as you move forward.
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Cee67, sorry about your experience. I kind of felt like you when someone posted a question about how painful was the injection prior to the node biopsy. I said in my experience, it was the worse part of my entire surgery. Someone acted like that was all in my head and said not to scare people. Well, I wasn't meaning to scare anybody, I was just relating my experience and good for anybody who didn't think it was bad but "I" thought it was terrible and that was not in my head. That was pain, I felt it and I know I did. So, whatever your experience has been with Arimidex, I'm sure you know how you felt.
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Angelia50, I had that kind of experience with my first biopsy 13 years ago. I swore I'd never have another one it was so awful (and done in a hospital). My experience this summer was 180° different. My doctor and the nurses were caring and made sure that I had plenty of lidocaine prior to surgery. So I totally get that you were miserable. No fun. Hopefully you'll never have that bad an experience again!
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Deleting post. It was not helpful to anyone. I read some additional posts and decided to self censor.
Still incredibly sad.
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Cee, I would also say it sounds more like an allergic reaction rather than a SE, an allergic reaction can come on so quickly where as SE's usually take a few days. My joint pain was very severe & it was discovered that I was highly allergic to a filler used in many drugs, not the actual drug itself. Sometimes you have to do your own homework I'm afraid. Sorry you had a hard time of it, maybe another maker will give you a better result.
Angelia, I hate when people belittle your experiences. Not nice at all. When I had my core biopsy the radiologist didn't bother giving me much freezing, it was the most painful experience of the entire BMX, recon, etc. I still recoil at the thought of that biopsy. For most, it's no biggie, but for me, the worst.
Cheers, Dee
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Not sure what you mean with the comment, and the source you used was mine. I'm just saying that I don't need a doctor's permission if a med is hurting me. I'm not gonna wait to have him tell me what I already know: that I need off of it. Doesn't mean I don't care about the flesh and blood patient. No, that behavior comes from my doctors, which is why I don't feel the need to worship them. They don't care about me and never have. I'm no one special just another cancer patient. But my views aren't welcome here just so you know. That comment you pasted in that was mine, the mods didn't like that and warned me to not be disruptive on the forums with similar. You see, *my* viewpoints are not acceptable, but others bashing me is okay. It's because chemo is accepted where Altmed isn't, though in a few years that is going to change in a big way and this forum will have to give up their Draconian views about it and come into the present.
Thank you everyone who has shared their experiences on certain meds and surgeries. It means a lot to me and I don't feel as alone. It's just hard when everyone says it's not the Ax when I know it was, esp the hand immobility, foot cramps and low backache. The aching around the middle I admit is strange but went away within hours of stopping Ax so was definitely Ax-related.
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Cee67 That's where I was ganged up on, Alternative thread. At that time they didn't have a separate alternative/complimentary. I just left. I bet it's the same "gang." Granted they were attacking me (basically saying I was an idiot). If you don't agree with them they think you're a moron. Don't post viewpoints on chemo in the alternative threads. Stick to the complimentary. PM me. I wonder if it's the same group.
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Jenny, I have a brother in law and his son who are my dentists. I have dental phobia badly. They give me a Valium to take before I come to my appt., and if I need treatment, I make them numb me until I look like a stroke victim...and then I grip the chairs. Gas doesn't work for me. If I couldn't have numbing, they would have to put me completely out...or pry me off the ceiling or floor. Or I would never go, lol.
Doxie...Advil,doesn't help my tendon pain either. That compounding cream helps the general pain a lot, but nothing helps it when the tendon decides to roll or move. Awful.
Lago, I am lmao off over the English comment. That is classic.
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Dental phobiac here too! I've had the one that makes you totally asleep for my wisdoms - sodium pentothal I think? Laughing gas is okay but doesn't work all that great. I take anti-anxiety meds too beforehand but pump enough adrenaline that I counteract it all and then, when it's over I go home and sleep really good LOL!
Lago, I'll PM
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Lago I can't PM you - it says my account can only send a limited number of Pm's per day. Wow I must really threaten the dogma here OMG! I'm getting my topic closed and now they don't want me communincating. Like wow... Just...wow.
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Pontiac Peggy, I hope I never have to have another biopsy or any of that again. I really can't blame it on my doctors. I had cream to rub on prior to the injection, which I did, but it still stung like heck, brought tears to my eyes. I will agree, it wasn't long lasting, but it hurt and nobody can convince me it didn't. Just like I had no trouble with having fills with my reconstruction but I"m not going to try to tell somebody who did that it didn't happen. I have a friend right now having expansion and she says they hit nerves and it hurts each time. So, we are all different and so are side effects. So far, I'm not having many side effects with Arimidex and I hope that keeps up.
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cede, I used to get that when I was new to the boards. I can't remember what the fix is. Maybe after posting so many?
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Angelia...the fills killed me! I used EMLA every time. Ps said it was because they went through the muscle sometimes based on where the little thing they have to stick into is. One side wasn't bad, but the other side consistently hurt like crazy. He always kept apologizing.
He did give me free Botox twice though, so I forgave him, lol
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Cee67 I think they might have limited you to 5 per day. No matter which side of the fence you're on bashing folks is not supportive. I pick my threads wisely now. Life is too short.
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Yes, they do limit the number of PMs per day.
*edited to add that I'd like some free Botox, but don't want to go through anything painful first to get it!!!
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I haven't stopped crying all night. I feel alone and unwanted, here, everywhere.
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Cee, I hope that you have been in contact with your oncologist, let him know of your difficulties with Arimidex, and have come up with a new plan on how to proceed with your treatments. Your cancer center should also have social workers, spiritual advisors and/or support groups, who may be able to help you navigate through both the difficult physical and emotional aspects of this experience. Online discussion groups such as this can be helpful (or not, as you have found) but I don't think can replace 'real life/real time' help of the 'boots on the ground' people in your life. Best of luck!
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fluffqueen, you know, as I read these boards, I realize, I was truly blessed that God sent me to the doctors he sent me to. I had the mastectomy and expander at same time, not so bad, had all the fills, never had what I would call pain, more like pressure but the muscle relaxers resolved that, and have now had the exchange and lift, and again, so far, no issues. I was terrified of the fills, just watching the youtube video freaked me out, although, the lady that was having it done, was smiling and talking. When I went, the nurse did the first one and she said nope, won't hurt and I trusted her and sure enough, it didn't hurt. Sometimes, it would be a little more of a pinch but no actual pain, and then, the following day, some pressure. But, that said, I do not doubt for one minute that others, have had a terrible time with their surgeries and all that came after. I think maybe part of why I didnt' have such a rough time was number 1, I only had one side to deal with and number 2, no chemo or radiation to weaken my system. If someone started with Arimidex right after having all of that, that could also be why more problems or in my case, I had already been through menopause, so that may also be a factor in to why I haven' had as many side effects. Just never know but I know I consider myself blessed after seeing how bad it has been for some of the ladies.
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Cee67 I had to switch to Exemestane (Aromasin). But do note that some of these drugs can cause depression and anxiety and can be treated. I'm doing much better on Exemestane. My SE are all gone except it did give me anxiety. I'm taking a drug for that. Been almost a year on it. First time since I've been on an AI that I felt like me again!
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Angelia- I agree 100% with your feelings about your sentinel node injections...That was the worst of my active treatment also..... Hands down. If it come back, the boobs are going before they do that to me again......Seriously.0 -
Redheaded, thanks for helping me know I was not just being a baby. I mean, I had a mastectomy, expanders, fills, exchange and that injection was the only really what I could call painful thing. Bee sting my rear end, that was a hornet sting, in a place hornets not ever need be.
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I do feel the need to make a few comments. First, I want to note that nothing I write in any way is to deny the fact that some people do have bad side effects that can make staying on an anti-hormonal difficult or impossible BUT......
*most people do not have terrible side effects, I know a number of local acquaintances who take or have taken anti-hormonals, none of them have had severe side effects. If your only source of information about this is the internet, you are going to get skewed view because it is only natural that the people who are having difficulties are the ones talking about it online, the rest are just out living their lives.
* every single drug you take, including aspirin and other non-prescription medications, has a long list of possible side effects, some life threatening. None of us would ever dare take anything if we dwelt on what could possibly happen. My advice to a person just starting out is to go in expecting that you will do fine, take your pill like you take any other pill or medication. Swallow it and get on with your day.....if you are going to have side effects, they will find you! Deal with them at that point.
* As estrogen positive women, anti-hormonals are the biggest guns we have in our arsenal. Chemo (which I did) gave me personally a 20% risk reduction, 5 years of anti-hormonals gave me a 40% risk reduction. That is HUGE! Did surgery alone save my life? Did chemo? Did Arimidex? A combination? Was it just luck? I don't know. But what I do know is that I am alive and well eight years later......I have gotten to see my son graduate from both high school & college, I was able to help my dad navigate his declining years with dignity, I have been able to work, to play, to travel, to live and really enjoy life. So I am grateful, grateful, grateful for all the medical options I had available (and that most certainly includes Arimidex)....and I am grateful for good luck as well!
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