Not advocating stoppping AI's but...
I'm not advocating stopping your AI's, but I am trying to say is that I believe once we complete our five years or so of taking these drugs, life improves 100 fold. Somehow, that makes the next four years seem like a cake walk for me. Now I will know that these problems of insomnia, etc. will pass and that life without them will be sweeter again.
Love to you all, Marilynn
Comments
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Thanks for sharing this recent experience...
And, I love your attitude towards it, too. I've been taking Arimidex 3+ years now, and still counting. I put up with the really annoying side effects because for me - it's treatment I really need, and the only one available.
Nice to know there's light at the end of this tunnel, too.
Thanks, again, Marilynn!
Kind regards, Susan0 -
Thank you Marilyn. I'm on
Thank you Marilyn. I'm on aromasin and have been in a funk the past couple of weeks physically and mentally) and blaming it on everything else but suspecting aromasin has been the cause. Just like the last 2 I've tried. I'm glad you're getting it sorted out.
jan0 -
Arimidex vs. Aromasinlynn1950 said:Your experience with AI
Thanks for sharing your experience with AIs. Do you think the Arimidex will be any different? Why did you switch in the first place? Lynn
First let me say that if there are side effects for chemo and for medications, I'll have them. I'm just one of those hard luck kids. My system does not tolerate drugs very well. During chemo, they had the crash cart ready for each session. So, after completing my treatment, I was put on Arimidex. I stayed on it for approximately seven months. During that time, I developed extreme stiffness and pain in my joints, but my hands presented an additional problem. I developed trigger finger in all four fingers of my right hand because of the inflamation of the joints. (I'm right handed) Anyway, this condition will require minor surgery to alleviate the problem. Consequently, my oncologist switched me to Aromasin in the hopes that it's chemical structure was different enough from the Arimidex that I might not have severe joint stiffness. Instead of joint stiffness, I developed muscles spasms in my neck, wrists, forearms, and torso. I had 20 - 30 spasms a day and it was painful and frightening, not to mention debilitating. They tested me for Lupus, Rheumatoid Arthritis, heart attack, other anti-immune disorders and other cancers. All tests were negative. That caused them to begin to examine all medications that I was taking. The conclusion was that the Aromasin MAY BE causing the problem. They took me off of it and voile. Miracles of miracles. Within a week, the spasms started to subside and my entire system seemed to return to normal. After a lot of discussion, my oncologist and I agreed that I would try Arimidex again. At least I can't get any additional trigger fingers and I know how to handle the joint pain and stiffness. All of Arimidex' side effects are predictable for me. Because of the benefit of AI's, I'm more than willing to put up with the problems. Lynn, please understand, I'm just one of those highly allergic individuals. Many women don't have any side effects at all - yet others of us have all of them. Everyone is different. I'm very grateful that AI's exist. And, I'm happy to put up with the side effects - as long as they allow me to function. Didn't mean to bore you or scare you, but you asked. Take care of yourself. Hugs, Marilynn0 -
Hang in there...phoenixrising said:Thank you Marilyn. I'm on
Thank you Marilyn. I'm on aromasin and have been in a funk the past couple of weeks physically and mentally) and blaming it on everything else but suspecting aromasin has been the cause. Just like the last 2 I've tried. I'm glad you're getting it sorted out.
jan
Jan, like you, I kept imagining that I was losing it and that I was falling apart. But, now I KNOW that is not the case. Hang in there. There is light at the end of the tunnel. I wish my tunnel weren't four years long, but that's life -- literally and figuratively. Hugs Marilynn0 -
Hey, Julie....jgridley said:Marilynn
I am on Ameridex...My knees, and feet hurt all the time...But that could be because
I am on my feet all day long...Your thoughts?
Julie
Julie, I'm not a doctor and all I can tell you is that the Arimidex did affect my joints. They were stiff, particularly in the morning. I took an Aleve for the aches. It helped a lot, plus once I was up and moving around, the stiffness eased up. But, I was not working in a job which required me to be on feet all day long. I'm retired. I think that with or without Arimidex, if I had to be on my feet all day long, they would ache. Try to take it easy on yourself and sit down whenever you can. Hugs, Marilynn0 -
I pretty much had those samemgm42 said:Arimidex vs. Aromasin
First let me say that if there are side effects for chemo and for medications, I'll have them. I'm just one of those hard luck kids. My system does not tolerate drugs very well. During chemo, they had the crash cart ready for each session. So, after completing my treatment, I was put on Arimidex. I stayed on it for approximately seven months. During that time, I developed extreme stiffness and pain in my joints, but my hands presented an additional problem. I developed trigger finger in all four fingers of my right hand because of the inflamation of the joints. (I'm right handed) Anyway, this condition will require minor surgery to alleviate the problem. Consequently, my oncologist switched me to Aromasin in the hopes that it's chemical structure was different enough from the Arimidex that I might not have severe joint stiffness. Instead of joint stiffness, I developed muscles spasms in my neck, wrists, forearms, and torso. I had 20 - 30 spasms a day and it was painful and frightening, not to mention debilitating. They tested me for Lupus, Rheumatoid Arthritis, heart attack, other anti-immune disorders and other cancers. All tests were negative. That caused them to begin to examine all medications that I was taking. The conclusion was that the Aromasin MAY BE causing the problem. They took me off of it and voile. Miracles of miracles. Within a week, the spasms started to subside and my entire system seemed to return to normal. After a lot of discussion, my oncologist and I agreed that I would try Arimidex again. At least I can't get any additional trigger fingers and I know how to handle the joint pain and stiffness. All of Arimidex' side effects are predictable for me. Because of the benefit of AI's, I'm more than willing to put up with the problems. Lynn, please understand, I'm just one of those highly allergic individuals. Many women don't have any side effects at all - yet others of us have all of them. Everyone is different. I'm very grateful that AI's exist. And, I'm happy to put up with the side effects - as long as they allow me to function. Didn't mean to bore you or scare you, but you asked. Take care of yourself. Hugs, Marilynn
I pretty much had those same symptoms with Tamoxifen, so I've now been on
Arimidex for 8 weeks and have developed more muscle aches and muscle spasms then when I was on the Tamoxifen. I'm going to the oncologist tomorrow for my 3 month check up and I'll see what he says. Like you I'm willing to go through everything just to give myself a better chance of no recurrence. The last time I was there and I had the problems with the Tamoxifen, he had suggested, that they may just take my off the meds for a short while when the symptoms get too bad and then put me back on. I totally agree with you, I will continue to take the Al's for as long as I can. Hugs, Lili0 -
amazing
Marilynn, I was completely amazed to read this post because I have experienced the exact same things, minus the joint pain. I have been so depressed lately, and nothing is happening in my life to warrant this. I went online and found many sites about AIs and depression, and Dr. Hoffman (my oncologist) confirmed that Femara can cause depression. We already know it caused my hair to thin. Dr. Hoffman suggested stopping the Femara for a week to see if my mood improved, or seeing a psychiatrist. But it is still a relief to hear that others have had similar experiences.
About looking forward to stopping these drugs in 5 years, though, I felt like saying hold your horses, Marilynn! The current research is pointing toward us possibly having to take the AIs for 10 years (although the current standard is 5, they are investigating that more long-term use might be warranted), and also I'm afraid of what will happen when we stop taking these drugs and there is nothing to 'protect' us anymore.
But it was still good to hear I am not alone. Especially the depression part.
Hugs,
Phyllis0 -
I've heard that tooohilly said:amazing
Marilynn, I was completely amazed to read this post because I have experienced the exact same things, minus the joint pain. I have been so depressed lately, and nothing is happening in my life to warrant this. I went online and found many sites about AIs and depression, and Dr. Hoffman (my oncologist) confirmed that Femara can cause depression. We already know it caused my hair to thin. Dr. Hoffman suggested stopping the Femara for a week to see if my mood improved, or seeing a psychiatrist. But it is still a relief to hear that others have had similar experiences.
About looking forward to stopping these drugs in 5 years, though, I felt like saying hold your horses, Marilynn! The current research is pointing toward us possibly having to take the AIs for 10 years (although the current standard is 5, they are investigating that more long-term use might be warranted), and also I'm afraid of what will happen when we stop taking these drugs and there is nothing to 'protect' us anymore.
But it was still good to hear I am not alone. Especially the depression part.
Hugs,
Phyllis
about longer tx time with the AI's. ...... sigh!0 -
Yes, testing 10 years vs. 5...phoenixrising said:I've heard that too
about longer tx time with the AI's. ...... sigh!
That's exactly what I'm doing right now, part of the trial... (sigh)
Kind regards, Susan0 -
This may be a stupidChristmas Girl said:Yes, testing 10 years vs. 5...
That's exactly what I'm doing right now, part of the trial... (sigh)
Kind regards, Susan
This may be a stupid question so don't get all over me, but, why take something if it doesn't lower your risk that much and if it has that many side effects, affecting your quality of life? I thought sometimes it is only suppose to lower your risk by a few percent, like 3% or something. Just a question, please don't beat me up.
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Noel......there are no stupid questionsNoel said:This may be a stupid
This may be a stupid question so don't get all over me, but, why take something if it doesn't lower your risk that much and if it has that many side effects, affecting your quality of life? I thought sometimes it is only suppose to lower your risk by a few percent, like 3% or something. Just a question, please don't beat me up.
I have nothing to quote but I am under the impression that the benefits are quite large. I think the hormone therapy is probably one of the most crucial treatments in er+ bc.0 -
Thank you Phoenixrising!phoenixrising said:Noel......there are no stupid questions
I have nothing to quote but I am under the impression that the benefits are quite large. I think the hormone therapy is probably one of the most crucial treatments in er+ bc.
Thank you Phoenixrising! So, do only er+ do the hormone replacement drugs? Er- doesn't? But, isn't er- more serious as it is a more aggressive cancer? And, surely some people don't take any of the hormone replacement drugs and do fine, wouldn't you think?0 -
I'll never take AI's....
I had a total hysterectomy, so I am eligible....but...
My bone density took such a hit during chemo, I ended up osteoporotic. AND I have had a struggle with high cholesterol for most of my adult life. Both of these things are negatively affected by the AI's. So, for the 1% difference in chance of reoccurance, I'm sticking with Tamoxifen for the 5 years...I don't have a uterus, so I can't get uterine cancer (the biggest danger of Tamoxifen use).
I am blessed, in so many ways. I don't have side effects to Tami....so that, too!
Hugs to you warriors!!!
Hugs, Kathi0 -
Hi Noel, only the er+ takeNoel said:Thank you Phoenixrising!
Thank you Phoenixrising! So, do only er+ do the hormone replacement drugs? Er- doesn't? But, isn't er- more serious as it is a more aggressive cancer? And, surely some people don't take any of the hormone replacement drugs and do fine, wouldn't you think?
Hi Noel, only the er+ take anti-estrogen medication. These tumours are fed by estrogen so we need to eliminate it. Er neg bc doesn't take anti-estrogens as they are not hormonal fed. I think er neg is more serious because it is harder to treat since one can't throw anti-estrogens at it which then makes the chemo very important. Your right, there are a few cases where er+ women do nothing and seem to be fine. I think it's rare though that they gain the rest of their lives cancer free. If you've had an er+ bc and just did the surgery, rads and chemo without the anti-estrogen, you still have/create estrogen to feed any cells that remain. I think there is a significant number of women who get bc back after discontinuing their 5 yr tx which is why there are studies lengthening the tx time for anti-estrogens.
There are those proponents for Alternative therapies and those who advocate just boosting your immune and alkalizing your body will prevent a recurrence. But I still can't figure out how those remedies repair or wake up a tumour suppressor gene that didn't do it's job.
Noel, I hope this has helped. I, by far, am no expert and I welcome anyone to jump in and make corrections. I certainly don't want to give bad information.
hugs
jan0 -
Hey Phyllis, my hair, too...ohilly said:amazing
Marilynn, I was completely amazed to read this post because I have experienced the exact same things, minus the joint pain. I have been so depressed lately, and nothing is happening in my life to warrant this. I went online and found many sites about AIs and depression, and Dr. Hoffman (my oncologist) confirmed that Femara can cause depression. We already know it caused my hair to thin. Dr. Hoffman suggested stopping the Femara for a week to see if my mood improved, or seeing a psychiatrist. But it is still a relief to hear that others have had similar experiences.
About looking forward to stopping these drugs in 5 years, though, I felt like saying hold your horses, Marilynn! The current research is pointing toward us possibly having to take the AIs for 10 years (although the current standard is 5, they are investigating that more long-term use might be warranted), and also I'm afraid of what will happen when we stop taking these drugs and there is nothing to 'protect' us anymore.
But it was still good to hear I am not alone. Especially the depression part.
Hugs,
Phyllis
I know about the possibility of 10 years but I'm not allowing myself to think about that possibility. I'm content fighting all these pitfalls of AI's for 4 more years. That's what will get me through. Oh, my hair has thinned on top, too. Yukko. But, like you, I'm wearing it in a style that "hides" the lack of hair. To take a quote that from that wonderful muscial, "life is like a fiddler on the roof." Hugs, Marilynn0 -
24% to 12% reduction in risk...phoenixrising said:Noel......there are no stupid questions
I have nothing to quote but I am under the impression that the benefits are quite large. I think the hormone therapy is probably one of the most crucial treatments in er+ bc.
In my case, the risk reduction was significant. It went from 24% to 12%. So, AI therapy is a MUST for me. You see, I intend to live to be 94. How's that for goal ??!!!! Lol. Hugs, Mariilynn0 -
Thanks phoenixrising. Yourphoenixrising said:Hi Noel, only the er+ take
Hi Noel, only the er+ take anti-estrogen medication. These tumours are fed by estrogen so we need to eliminate it. Er neg bc doesn't take anti-estrogens as they are not hormonal fed. I think er neg is more serious because it is harder to treat since one can't throw anti-estrogens at it which then makes the chemo very important. Your right, there are a few cases where er+ women do nothing and seem to be fine. I think it's rare though that they gain the rest of their lives cancer free. If you've had an er+ bc and just did the surgery, rads and chemo without the anti-estrogen, you still have/create estrogen to feed any cells that remain. I think there is a significant number of women who get bc back after discontinuing their 5 yr tx which is why there are studies lengthening the tx time for anti-estrogens.
There are those proponents for Alternative therapies and those who advocate just boosting your immune and alkalizing your body will prevent a recurrence. But I still can't figure out how those remedies repair or wake up a tumour suppressor gene that didn't do it's job.
Noel, I hope this has helped. I, by far, am no expert and I welcome anyone to jump in and make corrections. I certainly don't want to give bad information.
hugs
jan
Thanks phoenixrising. Your explanations for my questions really help. For me, this hormone therapy is so questionable anyway. Not sure if I want to take it or not. I just keep putting it off. But, it is confusing, isn't it? It isn't just me I hope.0 -
Hi NoelNoel said:Thanks phoenixrising. Your
Thanks phoenixrising. Your explanations for my questions really help. For me, this hormone therapy is so questionable anyway. Not sure if I want to take it or not. I just keep putting it off. But, it is confusing, isn't it? It isn't just me I hope.
I'm glad my answers were helpful. I don't know what your risk of recurrence is but if you are choosing not to take the anti-hormonals then a good idea would be to really really look into it and learn all about it to understand. That way you are going into it with your eyes wide open and if it should return you won't be in the uncomfortable spot saying, I didn't know that. To me the only thing worse then hearing bc is hearing mets, and I don't ever want to go through chemo again. I hope that helps you.
Take care
hugs
jan0
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