@coco46 I'm sitting here at 4:00 in the morning and decided to reread some of the comments. It's so awful that I am overwhelmed with how people have to live with the so-called life saving medications. I have made a decision which was right before Christmas really. I was going to see my family and I thought I want to feel so much better. So I stopped an astrozole two days before Christmas which was really dumb on my part because it has a 50-hour half life which means I didn't change anything by going off of them at that point. I wanted my Christmas to be better than I knew what it was going to be. It was awful. I was dizzy nauseous some of the time but the worst thing was my cognition was gone. I couldn't even play a simple game with my family. I couldn't figure anything out,
@saraabrooks I am sorry to hear that it didn't help you to stop the pills a couple of days before. Having your Christmas ruined by them is just terrible. I suffer really badly with my cognition as well, so I definitely know the feeling. It drives me crazy, I feel like I am losing my mind sometimes. I actually have been doing the same thing, with skipping pills more and more. I stop some of my meds that I know make me feel horrible, a few days before I am going some place or have a holiday or family gathering. It's just awful that we have to even be doing these things and just trying to figure out our own way to live with this horrible poison. I am getting worse and worse side effects still, I guess from being on them for longer and longer. It's been almost 3 years now.
@saraabrooks I am sorry to hear that it didn't help you to stop the pills a couple of days before. Having your Christmas ruined by them is just terrible. I suffer really badly with my cognition as well, so I definitely know the feeling. It drives me crazy, I feel like I am losing my mind sometimes. I actually have been doing the same thing, with skipping pills more and more. I stop some of my meds that I know make me feel horrible, a few days before I am going some place or have a holiday or family gathering. It's just awful that we have to even be doing these things and just trying to figure out our own way to live with this horrible poison. I am getting worse and worse side effects still, I guess from being on them for longer and longer. It's been almost 3 years now.
@coco46 I saw the physicians assistant today. It was a planned follow-up. After listening to my story he told me that there's many people who decide that they need to go off of them because the side effects are so horrible. He told me to remember that the cancer doesn't necessarily have to come back. There is a chance that it won't. Also that because people take anastrozole it may not guarantee that the cancer won't come back but your risk is reduced. He told me that it's possible that the cancer will not come back and that's what we can hope for. But to me, it sounded like a lot of women have decided against taking them because it's just too much. So I really am going to go cold turkey since 2 days before Christmas and I am not returning to any drug. It's a big risk, but then again she says people can't take the drug and they still do not have cancer down the road. So in other words, it's a crapshoot! We just have to do the best we can with what we've got. If I had a young family I'm sure I would feel differently. But I am 80 and my family is healthy and Lively and on their own. I want to live the rest of my life without being drugged. In the end I will probably have palliative care no matter what I have or don't have. And it's okay in my book. It was nice chatting with you. Since it's been 3 years for you I applaud you. Good luck.
I kind of agree. While I take Letrozole every day and right now symptoms are manageable have read one study that suggests taking it every other day has the same effect.
Honestly why don’t oncologists test our levels of striven to determine what dose I necessary? Has anyone had their levels tested?
Just begs the question that maybe we should advocate for regular testing to determine what levels of ai drugs are appropriate for each person ?
@coco46 I'm sitting here at 4:00 in the morning and decided to reread some of the comments. It's so awful that I am overwhelmed with how people have to live with the so-called life saving medications. I have made a decision which was right before Christmas really. I was going to see my family and I thought I want to feel so much better. So I stopped an astrozole two days before Christmas which was really dumb on my part because it has a 50-hour half life which means I didn't change anything by going off of them at that point. I wanted my Christmas to be better than I knew what it was going to be. It was awful. I was dizzy nauseous some of the time but the worst thing was my cognition was gone. I couldn't even play a simple game with my family. I couldn't figure anything out,
I was on Letrazole which has a half life of 48 hours. They also did a study with it, reducing it to 1/2 and 1/4 dose and taking it Monday, Wednesday and Friday and there wasn't much difference than taking a full dose e ery day. I was taking the quarter dose every M,W,F but stopped taking it when it made my blood pressure sky rocket and made my thumbs hurt too much. I'm 68 and will take my chances with clean living. The AIs don't guarantee that you won't get cancer reoccurance. For me, mine we t from 3% with AIs to 6% without. Quality of life is important too. Besides if you read these studies carefully, they just say they decrease the incidences of breast cancer reoccurance by a certain percentage, but women will die from other causes- like heart attacks, stokes etc... that the AIs likely caused.
I liked what you had to say. My choice is to live a happy life as long as I'm allowed. I'm off drugs. I won't be Trading Anastrozole for something else. We all need a worthwhile life that makes us happy. And drugs are not a part of it for me. Thanks for your comments.
@coco46 I saw the physicians assistant today. It was a planned follow-up. After listening to my story he told me that there's many people who decide that they need to go off of them because the side effects are so horrible. He told me to remember that the cancer doesn't necessarily have to come back. There is a chance that it won't. Also that because people take anastrozole it may not guarantee that the cancer won't come back but your risk is reduced. He told me that it's possible that the cancer will not come back and that's what we can hope for. But to me, it sounded like a lot of women have decided against taking them because it's just too much. So I really am going to go cold turkey since 2 days before Christmas and I am not returning to any drug. It's a big risk, but then again she says people can't take the drug and they still do not have cancer down the road. So in other words, it's a crapshoot! We just have to do the best we can with what we've got. If I had a young family I'm sure I would feel differently. But I am 80 and my family is healthy and Lively and on their own. I want to live the rest of my life without being drugged. In the end I will probably have palliative care no matter what I have or don't have. And it's okay in my book. It was nice chatting with you. Since it's been 3 years for you I applaud you. Good luck.
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I will write back. We'll see if the surgery was enuff.
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1 Reaction@saraabrooks I am sorry to hear that it didn't help you to stop the pills a couple of days before. Having your Christmas ruined by them is just terrible. I suffer really badly with my cognition as well, so I definitely know the feeling. It drives me crazy, I feel like I am losing my mind sometimes. I actually have been doing the same thing, with skipping pills more and more. I stop some of my meds that I know make me feel horrible, a few days before I am going some place or have a holiday or family gathering. It's just awful that we have to even be doing these things and just trying to figure out our own way to live with this horrible poison. I am getting worse and worse side effects still, I guess from being on them for longer and longer. It's been almost 3 years now.
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4 Reactions@coco46 I saw the physicians assistant today. It was a planned follow-up. After listening to my story he told me that there's many people who decide that they need to go off of them because the side effects are so horrible. He told me to remember that the cancer doesn't necessarily have to come back. There is a chance that it won't. Also that because people take anastrozole it may not guarantee that the cancer won't come back but your risk is reduced. He told me that it's possible that the cancer will not come back and that's what we can hope for. But to me, it sounded like a lot of women have decided against taking them because it's just too much. So I really am going to go cold turkey since 2 days before Christmas and I am not returning to any drug. It's a big risk, but then again she says people can't take the drug and they still do not have cancer down the road. So in other words, it's a crapshoot! We just have to do the best we can with what we've got. If I had a young family I'm sure I would feel differently. But I am 80 and my family is healthy and Lively and on their own. I want to live the rest of my life without being drugged. In the end I will probably have palliative care no matter what I have or don't have. And it's okay in my book. It was nice chatting with you. Since it's been 3 years for you I applaud you. Good luck.
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6 ReactionsI kind of agree. While I take Letrozole every day and right now symptoms are manageable have read one study that suggests taking it every other day has the same effect.
Honestly why don’t oncologists test our levels of striven to determine what dose I necessary? Has anyone had their levels tested?
Just begs the question that maybe we should advocate for regular testing to determine what levels of ai drugs are appropriate for each person ?
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2 Reactions@saraabrooks
I was on Letrazole which has a half life of 48 hours. They also did a study with it, reducing it to 1/2 and 1/4 dose and taking it Monday, Wednesday and Friday and there wasn't much difference than taking a full dose e ery day. I was taking the quarter dose every M,W,F but stopped taking it when it made my blood pressure sky rocket and made my thumbs hurt too much. I'm 68 and will take my chances with clean living. The AIs don't guarantee that you won't get cancer reoccurance. For me, mine we t from 3% with AIs to 6% without. Quality of life is important too. Besides if you read these studies carefully, they just say they decrease the incidences of breast cancer reoccurance by a certain percentage, but women will die from other causes- like heart attacks, stokes etc... that the AIs likely caused.
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9 ReactionsI liked what you had to say. My choice is to live a happy life as long as I'm allowed. I'm off drugs. I won't be Trading Anastrozole for something else. We all need a worthwhile life that makes us happy. And drugs are not a part of it for me. Thanks for your comments.
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4 ReactionsYes, I decided to do that and the side effects are much less.
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2 Reactionstake it 4 times a week for past 3 yrs, no apparent side effects in my case
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1 Reaction@saraabrooks
I went off Anastrozole after a year due to side effects. Have been on Tamoxifen 20mg for 3 years with no side effects.
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