For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Welcome, BigCMel! Sorry you need to be here but you'll find loads of helpful women and information. Have you had joint pain like this at any time prior to taking Arimidex? Let's hope your Forteo injections stop it in its tracks!
You don't mention your age or menopause status but keep in mind that Arimidex is sucking every last bit of estrogen out of your system (which, of course, is the whole idea) so even years after menopause you could have hot flashes and night sweats. Again, ask your MO if there's something can help with them.
You might want to make your profile complete by adding your treatments and surgeries (and make them public). That information is very helpful when we are making suggestions to you of things that have worked for us.
HUGS!!!!
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I know a lot of people who have trouble with Cipro.....so it could be the drug, and these people were on the brand name, not the generic.....Cipro is a tough drug for some..
Glad to hear your doing better on Teva, ...............I must tell you that when i switched from Letrozole to Arimidex I thought the Arimidex would be better since I have a friend on it and she has no SEs other then sore feet, and that just started after years,and years of taking it after Tamox.................
Well was I wrong.......that damn Arimidex is worse then Letrozole.......at least for me it was.......I mean SE's after only 3 days on the stuff.....I was shocked.........but continued for 3 weeks.........until the foot neuropathy came back and then I said "enough".............
Did I also say that my MO told me Arimidex is harder to get rid of the SE's after stoppingit then Letrozole is..........Se's went away after stopping Lettrozole for 3 days.........
So maybe Arimidex is as unkind to you Big......as it was to me.......................one month is ridiculous...........at least when I started Letrozole it took 3 MONTHS for me to get SE's and they were not horrible.....that came later...........so if the Arimidex really causes you all that pain.................ask your DR. if he will let you try Letrozole..........it was bad, but Arimidex was worse......
Good luck with whatever you take.....I'm just glad I did not order 90 Arimidex and only got 30.........I have 15 left..............I think I wi ll take them out back of the house and squash them with my feet................it would make me feel so good.......just wish they had feelings.............LOL............Wouldn't Paybacks be a Bitch............LO
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bigcmel Hey there. I'm in Chicago. Where in Illinois are you?
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Ducky - I enjoy reading your posts...you're a hoot!
I started on a low dose (1/4) and just bumped to one half tab...we shall see.
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Fingers crossed, Jilly!
HUGS!
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Jilly............how do you break that pill down to a 1/4.............
I asked her about doing 1/2 a pill or doing it every other day...........she said "that is not gonna change anything........you need to do it the way it was meant to be doneon the label...........doing it that way or taking it every other day should not be done
She is a big MO with one of the biggest cancer centers in the country...........who told you to do it your way.......I would love to know...........not a name, but which Doc.........assume our MO...........
I was going to try to do it that way......she said clearly "NO"..........it wont change a thing............it has to be done right, just like the dose was meant to be taken............let me know...............
I am really interested............
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Ducky, perhaps by starting with fractional doses, Jilly can see if she can tolerate the pill rather than concentrating on its intended use.
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Understand that, but I would still like to know who advised her to do it that way........
My MO clearly said "no"..........so if there is a way it can be done I would like to know........and I would 'try it on my own........what would I have to lose................
I just knw I approached my MO with that suggestion which I got from this website, and she said "NO", it will not do what it is suppose to do unless it is taken as the company prescribed it to be taken...........
I worked for Big Pharm for years, and I do know some meds you can split but usually that is buying ahigher dose and splitting it to save money........
I wouldn't take Arimidex every again, but if it could be done that way I would try it with Letrozole..........
I can't imagine why a "TOP DOC" at the 4th best cancer center in the country would not inquire about it being done that way ............
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Ducky, if Jilly's MO recommended it, I'm sure he/she had a reason and we should not be second-guessing him. As you know, there is a lot of "art" as well as "science" in medicine and we know that there are quite a number of approaches to treating BC. So while your MO said it was a no-go for you and that was appropriate, it seems Jilly's MO has a different approach and we need to respect that.
HUGS!!
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Ducky, I am so glad that you are working with an MO who listens! As I read so many posts throughout this site, I see posts from folks whose MOs brush off their symptoms and complaints. My MO also listens, and I really appreciate that. Keep the positive vibes and do things that are good for you in other ways.....yoga, meditation, etc. Studies show that they help too!
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Glad you have a doctor who is both empathetic and truthful, Ducky. She sounds like a gem!
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Peggy I was not second guessing anyone...........go back and read what I said............I asked what her Dr. said......tht was it.
What you don't realize obviously is if there is a way for me to continue this drug, without the horrible SE's then I am all ears..............I asked for information that might serve me, not to second guess anyone or even suggest that what my MO said is LAW.........
I just commented on what my MO told me.....
I was interested in what Jilly's MO told her, and why the difference of opinion.................if somewhere down the road some MO said it is good to take 1/4, 1/2, less or more of the pill and you can get rid of SE's and continue being complient I want to know bout it.
Jilly, I will PM you...obviously this is something I should discuss in private with you.......thanks for getting the information out there.
And Ruth and Rhody.........QOL means evrything......thanks for the support.....hugs
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Ducky, I mis-understood what you wrote. I know you've said you want to continue AIs. However, MY interpretation of what you wrote was that you thought Jilly's MO was all wrong. I'm sorry. I'm glad that I was wrong. If after you and Jilly discuss this privately perhaps the information that comes from that could be shared with the rest of us. I would think that there are other women who would be very interested.
Please accept my apology.
HUGS!!!
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Peggy, I am neither a Dr or a Nurse, so I would be the last one to ever tell any of these ladies what they should or should ;not do..........nor would I tell them they should not listen to what their Dr. has told them to do with regard to their treatment........
We have women on here who are nurses, and think they are Doctors and can put out information, make suggestions, or challange another Dr.s treatment.......it has happened more then you know..........
I have been here since Feb 2011, so thisi is not my first rodeo........and have experienced women who are nurses, but think they are Doctors.......I am not one of them............
Never would I tell another woman what to do when her Dr. has planned her treatment, but if someone is doing something that sounds like it would work for me, and my MO said "NO", I would want a little more information from that woman which might just help me.............especailly since I have 1 1/2 years left to my 5 years...........
I'll take this damn pill for as many years as they tell me if I can find a way to do it without the SE's .......and trust me I I can handle pain..............6 kids delivered and 5 of them with no medication or epidural because I go too fast when the labor begins.............says "hey lady you can handle pain".............
That is why I told you to go back and read what I wrote......on here if we have a comment to make, we usually send a PM instead of calling someone out pubically.............especially when you misread what they wrote.......
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Ducky, again I apologize and publicly. However, I do stand by the gist of what I said for everyone here. There are many approaches to solving the problem of BC and our doctors seem to use them all. You have to trust that what your doctor tells you is what is best for you. It may not be right for me. I totally get that you desperately want to take the AIs (your pain tolerance is quite awesome!) and maybe Jilly's MO has the key to making them work for you. I must say that it would seem to me that a quarter dose should give some benefit, wouldn't you agree? Cutting those tiny pills in quarters has to be fun! I, for one, would like to hear what Jilly's MO has told her. As you may recall, I'm having no issues with Anastrozole and I've been on it 8 months. But it's information I'd like to tuck into my mental filing cabinet in case I ever need it. You need it now.
HUGS!
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I asked my onc about taking half a pill. He acknowledged that he has patients who do so, and he continually encourages them to move to the full dose. He says the trials used the 1 mg dose, so that is the only dose for which there is data. Other patients have told me that many, maybe most, oncs will not continue to treat someone who takes less than a full dose.
The half life of arimidex is 46.8 hours, which indicates that taking a pill every other day will create a varying level in our system. Taking half a pill will create a more even level, but without data, nobody can tell whether this would be more, or possibly less, protective. The issue from an MO point of view is that only a 1mg dose has been tested and the efficacy of other dosages is unknown and cannot be prescribed.
I'm currently taking six pills/week. My little rebellion is that, as I take my bisphosphonate on Sunday, I skip arimidex on that day. Might be a pretty stupid thing to do, but it allows me to feel I have a little control. And yes, if I'm particularly stiff for a few days, I'll take a half pill, maybe even another half after a couple of days of the full dose. I do not advocate this particular creativity, of course, but it is what allows me to continue the drug with a certain degree of comfort, and a more or less appropriate dosage.
Those who want to try different dosages, I'd encourage you to grill your oncs about their suspicions or experiences concerning the effect of lesser dosages. A flat no-no is usually not that helpful for thinking adults, and a discussion about the why's and why not's can help a lot.
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Well put, Brookside!
HUGS!
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Brook.......as I said I worked for Big Pharma for 15 years in their marketing research........have dealt with every kind of medical professional, including Reps........you learn a lot about medications working right with it (the reason I hate taking any kind of medication) so I do understand the 1/ 2 lifes.....mechanisim of action, etc......
I agree that you would think as long as a pill (some sort of size 1/4, 1/2, whatever gets in your system it should be of value......but sadly they can't do trials on each and every split of a pill......there is tons of research done before any med is put out there, and even while its still in the pipeline........in the final analysis this is the informtion used, and given to the Rejps to take to the Dr.........many Dr.s us different methods on their own.....many use the drugs for other purposes referred to as (off label)......which mean it has not been approved for that use..............not sure if this makes sense to anyone reading it.
So this is why I asked Jilly about her MO........maybe he has found a better mouse trap.......doesnt mean it is working, but just means he believes in trying..........
Trust me, I did "grill" my MO about the whys that it should not be taken, other then the way it is prescribed..
She said we can only base our prescribing on the way the trials say it should be taken........taking it any other way even if it is in your system is not being taken at the dosage level that brings trial results.........
Here is another thing you might have heard circulating among the BC ladies........
Some have said "it was there understanding the worst the SE's is proof that the medicine is working.............now that is really a dumb statement.........
That would be like saying............if the Rad treatment doesn't destroy the "breast skin" your Rads are not doing the job...............
So Jilly anything you can tell me about what your MO said about the 1/4 pill would really help me.......as you can see....I am not in total agreement with "myself" about stopping earlier, and would be willing to do 1/4 pill if I had good reason to believe that "A little of something is better then all of nothing"...........which makes sense.......... but not according to my MO.........
I believe in all my Dr's........but they are not God, and they put their pants on the same way we do.......one leg at a time...........I am confident my MO has a very good reason why she said "no, iit has to be taken as prescribed for any type 'of good result".............................but I am always interested in what others have tried with their Dr.'s blessing............
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So, Ducky, with your knowledge base, what would be your guess? Lesser dose better or worse than none at all?
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Just wanted to 'pipe' in before my meeting...when I first presented to my MO I explained in great detail my long-standing drug sensitivity issues. An example is statin intolerence; however, 10 mg of Lipitor 4 days a week is tolerable with good LDL results. There ARE some drugs that can be tweaked. I have no clue about the AI's; however, my MO was the first to suggest starting at 1/4 dose and working up to full dose. She did not give a time-frame.
Big Pharma - I have worked in clinical research, albeit cardiovascular, for 28 years. Cardiovascular medications are tweaked all the time. I have no idea why the AI's are a 'one size fits all', and don't really understand or know if clinical trials were done with different dosing, or if any follow-up is being done on patients taking less than the precribed dose.
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Jilly, not sure if you heard the old saying.............1/2 a loaf is better then none.......makes sense if you have no money, or are running out of food, or need cooperation from someone.......
How does it apply to the AI's........wish I knew, but to me having something in your system seems better then having nothing................
I think the point my MO was trying to make was "if a 1/4 pill would work as well in stopping recurrence the company would have done it that way.....1/4 meaning a lesser dose in its pill form...........
I talked to Teva......they are not the manufacturer of the drug, but I expected the answer I got..........they can only go by and comply with what the FDA approved the drug for..............what individual MO's decide to do is on them...............but for them to suggest alternating the dose of the drug, other then what the FDA said aand the clincial trials showed would be a "liability".
I was sure that was the answer I was going to get.........I said to the person on the phone...............if i was sitting across the table having dinner with someone from your company and said "off th record"..............I am sure I would get an honest answer........................but no one is going to put there self at risk giving out that kind of information...................even if............
A little of something ......is better then........all of nothing..........just wish people ;c;ould be honest about it all...............that is not going to happen.......again its a liability issue with the big companies...............
By the way Jilly.......I went through 4 Statins before I my Cardio found one that was kinder then the others...........old drug.....Pravastatin..............still had all the SE's muscle, joint, all of it...........but I take COq10 everyday.......recommended by a nutritionist, and it made it tolerable................did help.
This was all before BC, so I know its not the statin causing the problem which is what you would normally think.......with the COq10 everyday.....I did really well.....
I had the HA in 2007.....because I refused to take a statin drug when I was told to in 2005......eventually I paid the price....................No heart damage from the HA, I have one artery (not a main one) completely blocked, but another artery took over, so I am doing well for the past 8 years............
Wish I had better news, but I guess I have to find that person from Big Pharma, sit across the table from them and say "HEY OFF THE RECORD"........................LOL
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I understand their reasoning behind the one FDA approved dose, but really - everyone is different. I am a small person but I do not think that is why I have to take the absolute lowest dose of everything.
After several surgeries, anesthesia finally realized I need much lower doses than my body weight indicated.
During a minor surgical procedure, the crash cart appeared - because I was found to be 'sensitive' to epinephrine.
We are all different. It would be interesting to hear how others have faired taking a self-prescribed reduced-dose. I have heard of women taking their AI every other day. I guess if that's your only option, like Ducky said, it's better than no AI at all.
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Jilly.......I have had several surgeries in my 80 years.............never had a problem with anesthesia........always had my surgeries at the same hospital, same cocktail was used each time....
I went to a different hospital for some wrist sugery for torn ligaments, and went under genreal for the procedure..........in recovery they could not wake me up........no crash cart, but could not keep me awake.
The next day I was in agony with chest aches and pains......thought maybe I was man handled on the operating table.....LOL.....was not.
Being scared of that result when I went back to the hospital for the "big surgery" on my wrist (same place), I took my "records of anesthesai from my usual hospital with me)............they said they would use that cocktail for the new surgery, and they did................
I had not one problem.....none......woke up immediately, and the nurse in recovery said "Oh there you are all pink cheeked and bushy tailed"....................Last time we couldn't wake you up, you had a bad reaction to the cocktail they used on you"............
So everyone is different, and so is every cocktail they use..............and I am certain body size and weight makes a diference..........many times they ask your weight with some drugs........................especially anesthesia..................but 90% of the scripts written, and drugs approved by the FDA, have nothing about the persons body when it comes to dosage or tolerance to the drug...............
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Right on Brookside!!!!!!
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Ladies, if you are interested in joining up with some Michigan (and an Orgeon) BCO members, we'd love to have you come. We're meeting Saturday May 30th at 11:30AM at Sand Hill Vineyards, Jackson, Michigan. Here is the thread and there's more info there. May 30 Michigan Meet Up We had a wonderful time when we met in April. If you need more information, please PM me.
HUGS!!!
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I called Teva today......asked many questions of medical queries which was a man who also asked me questions back.
2 hours later I got a phone call from another member of the Teva a team, and she asked many more questions and I also told her about my interest in the product Letrozole, and shared my infor about their generic for Arimidex...........she too a lot of information documented everything I told her, and asked for the name of my MO, her location and phone number.............she said someone else will be contacting me soon to delve into this further.............she had no idea about the Foot Neuropathy, and said they would like my help further.
Someone will be calling me back...........just wanted to pas that by all of you.............
If you are on any of the AI's find out who your Mfg. is and call and talk to them.........if they don't know they cannot help research any of our complaints.,.......by the way.......the name is pronounced TEV-A
I thought it was TE-VA...........my bad.......LOL
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Thanks, Ducky, for the correct pronunciation! I was mispronouncing it, too.
"My bad" - sounds like you are around your grandkids a lot!
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Peggy......thanks for the invite, but this Pa. gal is way too far from Michigan...........there is another meet-up in Ca. in June......would love to have made that one....
These ladies are fantastic and are on a thread called......STFU (we all know what that means), Bonfire of the Goddesses..............and OMG They Found The Cure For Stupid..........these are 3 threads that will keep you laughing........come join us if you would like to...........a great bunch of ladies, and we are always looking for people who want to have a good time.............JUST SAY DUCKY SENT YOU...............you will be glad you came..........just SEARCH us with the names I gave you.................it will pop up.........
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Was thinking last night......my Doc may not be thrilled that I gave her name to TEVA..........not that I care.
My feeling..........these Dr.s mine along with all the rest have to start taking SE's seriously........mine does, but if you don't report these problems to the manufacturer you are doing a dis-service to your patients..........and I do believe there are more that don't report then do.
When i worked in Big Pharma we would get reports from Dr.s as to how our products were working...........they were called "VERBATIMS".........
It was part of my job to get the exact good, bad, indifferent SE's that our drugs were causing patients..............and this information had to be written up........."Verbatim"........not our rearrangement of what the Dr. said, but what he said Verbatim................it gave our team insite as to how the drug was working, what problems it had......the good it was doing.............
Just because a drug gets FDA approval does not mean its a "great drug"............I think anyone reading the SE's of the AI's would say "OMG, do I need to live in pain, have trouble walking, get thinning hair, ostopenia, "dry everything", trigger fingers, hot flashes, constipation, nausea, dizzy, balance problems.........and this is what companies want to know................but who bothers to tell them.............
The both Teva people that called me were surprised to hear about the foot neuropathy...........said they did not know that..........and I told them............one person could be nothing, but when you have 100's of women saying the same thing.................we can't all be wrong...............
I told them about the closeness of BCO, and how we share everything, and that is how we know what cancer is really about......................information is valuable........and we share it........good and bad............
But like i told them.....we always say "try it, never give up without trying.....becaue you might be one of the lucky ones................no SE's......now wouldn't that be wonderful..........
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Ducky, that is great that you have been able to talk with the manufacturer, absolutely if you do not tell them of a problem, they may not know. Now a solution for my achie feet would be really wonderful! dang but mine still hurt and I am off the med for over 6 months, have been working on my balance with PT and that is showing improvement
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