Arimidex
Comments
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I'm with you Otter, I was actually quite annoyed to be preached to in such a way that I was very uncomfortable and quite frankly angry. I am also fearful and concerned that the newbies that post will be even more confused if they read those arguments out of the alternate therapy thread. Anyway thanks, you said it well. Love n hugs. chrissy
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I believe that the issues raised about Arimidex are valid. I am taking it and will continue until my 5 years are up. However, I am suspicious about the statistics as well. There should be enough data to compare the survival rates of women before Arimidex was developed to survival rates of women who have completed Arimidex. Now some doctors are talking about a lifetime of Arimidex to prevent recurrence. I will want to see some hard facts and figures before I stay on Arimidex one day past the initial five years.
I think it is a great service when someone expresses concerns about some of the meds we take. I for one am always ready to listen.
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Otter and chrissy - I do appreciate your comments and agree totally with you.
At this point, I know there is no cure. Some of us get lucky and some of us don't with this disease. However, overall, women are surviving longer and that is because of the new treatments and medications.
Ideally, I'd like a real cure. But until then I'm taking my Arimidex.
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I have been on A for 4 months. These recent posts leave me feeling kind of sick to my stomach. I liked this thread because it was positive and supportive. I don't want to feel like I have to 'defend' my choice. I weighed the options carefully, did my research and made the A choice. I think it would be a wonderful idea for someone to start another thread for those who choose not to do AIs. It would be very informative for that group and you could then support each other in your choices.
I can't cut and paste or copy and paste on BCO does anyone know how to do this? Sounds dumb but it has befuddled me for weeks!!!
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What notself said is true. Any of our therapies should be able to withstand scrutiny without people getting angry or upset. We can't cover our ears every time somebody asks about the evidence for a treatment.
It's not about who does AIs or who doesn't--it's about examining how AIs came to be recommended. I wouldn't want to be in a support group where everybody thought my choice was perfect. I want the truth. I definitely want to be challenged if my life is at stake.
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I believe that my medical team is giving me the best possible advice based on my circumstances and the most current research. I do not believe there is a vast medical conspiracy. I like knowing the research and check it out to a degree. I also had an independent "cancer navigator" helping me who provided much of the research. We talked pros and cons and how to manage any symptoms. I am comfortable with my decision and not to take A was never an option in my opinion.
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I came on here today looking for some good information on my sore throat side effect from Arimidex, which, while irritating, is certainly something I can deal with.
I was surprised and sad to see the last several pages of posts. We are all angry, hurt and sad that we have to deal with breast cancer. We are trying to do the best we can to deal with it. We all had to make decisions about treating our cancer with the information and medical/surgical care we have at hand. The decisions boil down to being our very own choices, regardless of all the information out there, and therefore are quite personal.
This is a discussion board, so it's great to see varied points of view and think about them. What is not great to see arguments or beliefs that one opinion is better than another. No one knows better than us that our choices have been hard, brutually hard in some situations. Personally I'm looking for a way to stay as positive at the same time I face this situation as realistically as possible. I know the treatments have significant issues and they are anything but easy and can do harm in some cases. But I'm trying to keep my cancer from controlling my body.
I listen to people all the time explain to me that I got my breast cancer from the limited hormone therapy I took, from my animal diet, from my growing up on a farm where herbicides were used, from the high cancer incidents in my family, the fact that I am six feet tall, that I lost weight, that I gained weight...you get the picture. They all have an opinion as to why I got hit, but the answer is, no one really knows why. In the end, I got breast cancer. I had to find someone besides myself to help me. I picked the best people I could find, who gave me several options, and I researched them and I made my own decisions. I knew there would be consequences.
Let's keep exchanging information, pro and con, about Arimidex and other treatments, but let's give other a wide berth and understand we wont always agree. It's good to share opinions and consider the information presented. Let's not judge or argue that our ideas are better than anyone else, because until there is a solid cure, we really don't know for sure, do we? I want to read what everyone has to say as long as it is presented as helpful, lively and good spirited debate. Don't ever forget that in spite of all of this, it's our bc that is the enemy, not each other.
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This is going to be a rant, I guess. And I realize that not even the Angel Gaberiel bringing statistics from heaven on a golden tablet would be enough for people whose minds are set. But here are the facts: In the not so distant 'olden' days, before the advent of radiation, chemotherapy, Herceptin, oxotyping and yes, anti-hormonals, what happened when you got BC, was that they would chop off your boob (and I do mean chop), and then you would live or you would die (guess what happened more often than not?). If there is a conspiracy, it is a conspiracy of people trying to find better ways to treat and to CURE this diease, some of these advances must be working because BC is no longer a death sentence and most of us are going to live on to old age and die from something else, and even Stage IV ladies can expect, with the treatments now available, to have options and a longer and better quality of life than even a few years ago. O.K. that is the last thing I'm going to say on the subject, and I too worry about new people who are coming here for SUPPORT and FRIENDSHIP and hope that is what we can get back to. Sorry for my crabbiness. Ruth
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Yes, it would be so nice if the new people coming here learn that getting their facts straight about overall survival is not a conspiracy. Asking questions is not a conspiracy.
The newly-diagnosed are best served by learning they can access the facts--or even lack of evidence for certain treatments. This access to information is very empowering. Facts and questions are your friends!
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Well said Daznfused and Ruth!
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Totally agree Dazdnfused and Ruth, both of you well said.
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Sunflowers, so you want us to keep the fact that Arimidex has not been tested for overall survival a secret?
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I read just the last few pages of this thread (not a regular reader or contributor though I have posted here in the past) and all I can say is wow! Just some thoughts.
1. Thank God for "guinea pigs". Without them we would have no solid information on anything. I have been one myself, and I kiss the ground that other women going before me were willing to also play that role. That's how my doctors have known how to intelligently guide my treatment in the most focused and effective manner possible.
2. I decided at the beginning of my journey that I would seek out the best medical professionals I could find and would trust their guidance in my decision making. I did not have one doctor INSIST that I do anything. I asked their advice and recommendations based on my particular circumstances - my cancer was considered aggressive - and I did not hesitate to take their advice. If I had any difficulties they were there to help out.
3. I have had every possible treatment I can think of - neoadjuvant chemo, a mastectomy, postmastectomy chemo (where like most women I ended up losing my hair), radiation, herceptin, a prophylactic mastectomy, followed by five plus years of arimidex. I am still on arimidex and was hoping to be on it for good but the new OSCO guidelines may have put the kabash on that.
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Though this thread supposedly deals with arimidex, I noticed a post on radiation where someone said that it seems that women who don't have it "fair" (sic - it's "fare") better. I'd be interested to know where that notion comes from. There is no question I needed radiation based on my circumstances. And I have fared beautifully. I don't see the tie-in between radiation and arimidex, but I know that facets of my particular treatments were discrete based on my particular circumstances, so I needed both radiation as well as an AI.
At the beginning of my journey I decided that my goal was to get rid of this disease. Rather than worry about how I was going to feel at the hands of any of the treatments utilized in my quest, I decided that if my doctors told me that the particular treatments would help me get to my goal, I would crawl on my hands and knees to get them. Again, I was lucky enough to go to one of the best cancer centers in the country (IMO anyway) and to get referrals to other professionals, such as a radiation center closer to home, from them.
It's perhaps a personal thing but I trust my medical professionals more than I do posters on a forum who believe that they have more of a handle on the research and best way to go. That's just me though. Again, I decided what I wanted out of this journey and I made a decision on the way I would go about it, and it has fared me well.
(I also have another ace in the hole, and that is a brother who is an ob-gyn who practices in Houston and deals with the docs at MD Anderson all the time. I've also conferred with him throughout my journey and he told me about the effectiveness of AIs long before I was told I would be using an AI.)
There will never be a one-size-fits-all when it comes to pleasing women dealing with our disease. Not to minimize any aspect of this disease, but if I had come to the table with an extremely early, nonaggressive cancer, chances are I wouldn't have needed to have all of the treatment that I did. But I didn't. I thank God in heaven that I had the opportunity to access all of the treatments that I did. I would do it over again and wouldn't change a thing. I respect any women who make decisions for whatever reasons they do to forego any kind of treatment. That's their decision. But if anyone asked my advice, and based on where I have been, I would tell them not to forego treatment if it has the possibility of helping out their situation.
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About overall survival and disease-free survival. The second is certainly a subset of the first. The way I think of disease-free survival is this. For every minute of life, there is the possibility of some great discovery. So if someone can have a treatment that has proven to give them longer intervals without disease, there's that much more time they have to find out what else is in the pipelines.
Finally thank you from the bottom of my heart to all of the men and women who work tirelessly in the hopes of finding a cure for cancer. You are devoting your lives to helping people like me. And thank you to the women who are willing to participate in trials so that we can find out which treatments work and which don't, and what gives us better results than something else, even if by inches. Inches added together eventually turn into miles. I thank God for the medical profession and for their ongoing information. I know my doctors are there to help, not to hurt. I will continue to place my trust in them. They haven't led me astray yet.
Trisha
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I too had the same weight gain problem and I was carefully watching my diet - I am a big fan of low carb, low fat protein, low or no sugar foods and that stopped the weight gain but there was no weight loss - only when I had to ditch the Arimidex did my weight drop back to normal - oh yes, I am walking every single day now but couldn't on the AI - but nonetheless you need to talk to your primary care person - talking to oncs about this doesn't always get you a reply or even a nod and once again let me say to all of you - try the AIs you may not EVER have any se's or just small ones you can cope with - and ALWAYS run any supplements or huge diet changes through your doctors they need to know - they are there for you.
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And if you want a voice of experience, here I am kids! I was diagnosed in 2003.
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Sorry, but you can't designate a thread that keeps the overall survival facts a secret. That would be non-disclosure. Now that would be a conspiracy.
I'm sure you don't want newbies to think you buried all the no overall survival info.
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"Sunflowers, so you want us to keep the fact that Arimidex has not been tested for overall survival a secret?"
I don't know (or particularly care) if arimidex has been tested for overall survival! I have no side effects of which to speak and have been on it for over 5 years. I DO know that it is effective in preventing recurrences. Check it out. That's what I want.
I also know that it helps with disease-free survival. What in hell is better than that for women waiting for a cure? Every minute free of the disease is another minute closer to finding better treatment.
I bet the HER+ women who died before the discovery of herceptin would have given their eye teeth for some "disease-free" survival because maybe those extra minutes would have kept them alive long enough to be herceptin users.
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For some reason I still had this thread marked, even though I had not been on it in a long time because I realized there was only one viewpoint allowed here. It was Arimidex that brought me to bc org, three years ago. I was furious that my doctors wanted to put me on a drug and the more I read about it, the more I was convinced they just wanted me to trade one illness for another. So I found my way to a thread here about alternatives to arimidex, and I started researching like crazy. Just like Janesluvdogs, I found there are lots of safer and just as effective alternatives. I could not believe that doctors wanted me to take a drug that would block all my estrogen. We need estrogen for our minds and hearts and joints. Of the three kinds of estrogen, only one kind attaches itself to cancer cells. I take I3C which is a natural compound in cuciferous veggies that naturaly inhibits this estrogen. There are tons of studies on the benefits of i3C and eating more broccoli. I have lowered my estrogen naturally by daily exercise, and diet, which helped me to lose all those menopausal midriff pounds. All I can say is I feel fantastic and I have absolutely no fear cancer will return. Cancer does not invade healthy bodies. I know I am healthier now that I ever was in my whole life.
I rarely come to bcorg anymore because of arguments like this. Anyone who thinks outside the box is attacked for daring to speak out. Why is that? Why can't there be two sides to the story? The problem with the whole cancer business is that doctors do not give us a choice. They just want to dole out the pills, even for those of us who would prefer to take a different approach.
I will not invade this forum anymore, just as I rarely invade bcorg anymore, but I just wanted to say in Janes defense, it seems to me she is only trying to help by showing that there are other choices. One size does not fit all, and I am enjoying my new size 6. And doctors are not gods. They only know what drug companies teach them. They are tools.
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Wow...Otter and Jo - I am getting on board with you guys...what happened to this thread????? Holy Cow! Ruth....good rant!
We had the Moderators set up a stage iv specific AL thread over in the stage iv forum because this thread wasn't giving us information that truly pertained to us - studies and statistics mean nothing to me when I can count on getting one more day of life by following the treatment program my onc has set for me which includes AL's. Perhaps a consideration should be given to allow this to be the 'debate' site and begin a new thread for those who are actually taking the al's and concerned about the se's and coping and options so that newcomers do not have wade through all the retoric to find how to deal with the hot flashes.
Treatment is always a personal choice - could I trade Arimidex for Tamoxifin? No, I am post menaposal. At my first 6 months scans, Arimidex resolved many lesions completely, stablized or shrunk many more - isn't that what I am striving for? I am alive and if this type of outcome continues...I will be for quite some time. The se's are under control and perhaps I can be one of the 'statistics' that count in the overall 'survival' rate of the use of Arimidex. At stage iv mets - statistically, I have 12 to 36 months to live. I am coming up on 12 months - 24 to go...I will let you know if I am still around at 37 months - thank you Arimidex for giving me more life.
Just my personal opinion in relation to my personal experience...
LowRider
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Sunflowers, I say so humbly that we are blessed to be at Dana Farber. I too wish every woman with breast cancer could receive the same level of treatment. It saddens me that not everyone has access to the same level of treatment.
LowRider, God bless you and keep up the good fight. None of us know what treatment tomorrow will bring but dammit we know there is research, discovery, and trials going on 24-7, 365 days a year, every year. New and exciting things on the horizon. Some blockbuster right around the corner. Where there is life, there is hope.
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Vivre -
I'm glad you used the word "invade" to describe your actions. Well put. Would you be as supportive if we "invaded" the alternative and complementary threads just to present an alternative viewpoint?
The women here are take Arimidex because they've chosen to do so, just as you've chosen another route. I'm glad that your choices have been good for you. Likewise, many women who take Arimidex have good results. There's no need to turn this Arimidex thread, started as call for help with side effects, into a political/medical debate. That belongs elsewhere.
E
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Seriously, just as there is a thread for women who choose not to have reconstruction, so I'm sure there could be a thread for women who do not believe in the use of arimidex or other hormonals (if that is their belief). It is a fact that this thread was started to talk about the side effects of arimidex.
My two cents for whatever it is worth - maybe not even two cents!
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Whew ladies - guess I'll not be posting on this thread again - the bullying is a little offputting (to say the least) let me just leave you with this information which I may have not given - after 16 months on Arimidex and Femara I have mets in my left breast and a suspected recurrence in my right breast so perhaps for some of us AIs don't work - that is all some of us were trying to get across - good luck and love and prayers to you all.
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I do not think the women who chose Arimidex (I am one) are against all information being out there. We all know knowledge is power. I think it was clearly stated that it should be a separate topic where anyone interested in the research can go and read about both sides of the argument for or against. The point is, and it was posted before, but I will say it again is that this particular topic is designed for the women who did choose to take the A and have questions about possible side effects and how to lessen them. I don't think it is preaching women to take the A, but to help them through any effects once they have made that decision. This is a support group. That being said I do think any and all info should be posted, but under the appropriate thread. Well actually this is the right thread, just needs a separate topic. I like the ability to pick and choose what interests me and not read what might not feel relevant at the time. Please do not stop sharing info, just place it under an appropriate heading. We are all in this together and need to be able to access any and all info we deem appropriate to our individual circumstances. If I made the decision to take A, I need a place to get support and answers from others who are also taking it. Please respect the proper use of topics within a thread..............thanks
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And now I leave you to go walking. By the way, I did two things to counteract weight gain. (I don't think my weight gain was a product of using arimidex. I blame it more on holiday indulgences!) But in any event, I was going to our first family reunion and vowed that I wouldn't have to wear a sundress but rather would fit into my capris. So I went on South Beach and lo and behold, I lost the weight.
After the reunion, this very undisciplined being found it hard to go back to doing all of the necessary eating associated with South Beach so I decided to add exercise to my routine. I started off slow and gradually worked my way up to walking 5 miles a day. Boy oh boy it is working.
(I know that some women deal with debilitating pain as a side effect to arimidex and therefore cannot walk or exercise. But maybe swimming at a pool or some other similar exercise might work? I'm just putting in my vote for exercise at this point.)
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Sandy, I hope and pray you do find something that will work for you. There are lots of treatments out there and what works for one may not work for another.
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This would make a good news story-- that patients taking a drug that has no overall survival benefits want to keep the information from new breast cancer patients. I'm going to suggest this topic to a friend who is a national reporter. Maybe she will want to interview those who want to block the Arimidex survival information.
After the Avastin catastrophe, Arimidex could be the next drug exposed as a dud for adjuvant therapy. This subject is very timely!
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Please define "survival benefit". I think that there may be different definitions at play here. I see great survival benefit.
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I exercise like crazy too and have found that it pretty much takes care of any creakiness, and I have not gained any weight either (in fact lost a few pounds; except last week when my sister was visiting and we had two barbecue picnics with all the trimmings, ate at two Mexican and one Chinese restaurant, had frappes and muffins several mornings, Dairy Queen cake etc. etc.; you get the drift!). Now, I will have to go back to my Richard Simmons Food Mover and be good
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Okay ruthbru, that convinced me to move away from the computer and do what I set out to do - walk!
Talk about survival benefits will have to wait.
However, I do find it interesting that the BREAKING NEWS at the bottom of this thread - at least at the bottom of mine - is "Top Choice for Breast CA Is Aromatase Inhibitor". It must be doing something right!!!
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In the meantime, feel free to quote me that preventing a recurrence indeed is a survival benefit! Those who don't have recurrrences have a greater chance at surviving longer. And AIs have been shown to prevent recurrences.
I'm there! Prevent my recurrences while you are waiting to discover an overall cure, or even more effective treatment. Sign me up baby!
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