A small problem - Arimidex?
Comments
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I started taking Arimidexdorothyt said:Marilyn, I also have the
Marilyn, I also have the joint pains and I have been taking Arimidex for almost four months I have the pain in my wrists , neck, and knees.
I started taking Arimidex last month and so far I haven't felt any pain other than my legs feel tired and ache a little.
Patty0 -
joint pain
Hi there!
I have been on Arimidex for 1 1/2 years now. I have long bone and joint pain. It is generally mild, but there are times that I feel the weather changes and fatigue definitely get to me and I have to medicate. I am 56 now and I really don't know how much of this is age related. Before I had cancer though, I didn't have this problem. For me, the benefits certainly outweigh the side effects. It's a bummer but it's part of the cure. Hope this helps. Best to you....Joan0 -
joint pain
Hi there!
I have been on Arimidex for 1 1/2 years now. I have long bone and joint pain. It is generally mild, but there are times that I feel the weather changes and fatigue definitely get to me and I have to medicate. I am 56 now and I really don't know how much of this is age related. Before I had cancer though, I didn't have this problem. For me, the benefits certainly outweigh the side effects. It's a bummer but it's part of the cure. Hope this helps. Best to you....Joan0 -
I have been on tamoxifin for
I have been on tamoxifin for about 5 months. I have a few small bone pains and have this back door nagging feeling that it is the big scare. I never thought that maybe it is the tamoxifin. I go to the onc. tomorrow, and will mention it, but thanks for reminding me that little aches and pains may be from the change in hormones. Boy, am I once burned twice shy these days! Love to you and all my best wishes. Joyce0 -
Possible help
I am on a cousin to the drug you are on. It is called Exemestane or Aromasin and like yours, it is known to cause joint pain. I had a problem with inflamed toe joints. Don't laugh! I felt like the Little Mermaid who had pain every time she walked on land. Last year, after trying orthodics in my shoes for a year (they helped some, but mornings were still ouchy) and debating daily whether or not to take more Tylenol or Ibruprofen, the oncology physician's assistant recommended that I have my Vitamin D levels checked and go on prescription Vitamin D if the levels were low. I know I work 8-4 three seasons of the year, but I took a multi with D in it, drank milk fortified with D, and worked in the garden or hiked outside all summer and in the evenings the rest of the year too. I never imagined that my levels would be low. They were. The specialist told me that aching joints are sometimes relieved with adequate vitamin D. It worked just like the pain relievers, but no side effects: no rebound headaches and no nosebleeds. When I changed over to the stuff you buy over the counter, it didn't work as well. It turned out I needed a bit more to keep the good effects. I take a double dose every other day. Stretching and avoiding injuries helps too. I haven't carried a shoulder bag in years. When I forget and "shoulder" a bag, my neck and shoulder remind me with a vengence why I only carry a small credit card holder in my pocket to the store. I do weight lifting once or twice a week, but I raise the weights with caution. Strong muscles prevent joint injury but risk-taking causes accidents. So I try very hard to avoid injuries and not overdo. I will be tested for Vitamin D again this winter to make sure I'm not too low or too high. There are bad effects of too much Vitamin D too, but low levels can cause the achy joints. The physician's assistant said that it works for many patients with aromatase inhibitor aches and for some folks with arthritis.
C. Abbott0 -
Arimidexcabbott said:Possible help
I am on a cousin to the drug you are on. It is called Exemestane or Aromasin and like yours, it is known to cause joint pain. I had a problem with inflamed toe joints. Don't laugh! I felt like the Little Mermaid who had pain every time she walked on land. Last year, after trying orthodics in my shoes for a year (they helped some, but mornings were still ouchy) and debating daily whether or not to take more Tylenol or Ibruprofen, the oncology physician's assistant recommended that I have my Vitamin D levels checked and go on prescription Vitamin D if the levels were low. I know I work 8-4 three seasons of the year, but I took a multi with D in it, drank milk fortified with D, and worked in the garden or hiked outside all summer and in the evenings the rest of the year too. I never imagined that my levels would be low. They were. The specialist told me that aching joints are sometimes relieved with adequate vitamin D. It worked just like the pain relievers, but no side effects: no rebound headaches and no nosebleeds. When I changed over to the stuff you buy over the counter, it didn't work as well. It turned out I needed a bit more to keep the good effects. I take a double dose every other day. Stretching and avoiding injuries helps too. I haven't carried a shoulder bag in years. When I forget and "shoulder" a bag, my neck and shoulder remind me with a vengence why I only carry a small credit card holder in my pocket to the store. I do weight lifting once or twice a week, but I raise the weights with caution. Strong muscles prevent joint injury but risk-taking causes accidents. So I try very hard to avoid injuries and not overdo. I will be tested for Vitamin D again this winter to make sure I'm not too low or too high. There are bad effects of too much Vitamin D too, but low levels can cause the achy joints. The physician's assistant said that it works for many patients with aromatase inhibitor aches and for some folks with arthritis.
C. Abbott
Hello! I'm new here. I actually came because I'm having problems with Arimidex myself and wanted to see what others have experienced. I've been on it for 2 1/2 years. At first I had minor stuff like a little nausea and hot flashes, but that seems to have gone away. (It helped to take my pill at night, but I forget it more easily if I odn't take it first thing with breakfast.) Lately the joint and bone pains have gotten worse. It hurts to carry anything wiht my right arm, my fingers are killing me, and I'm very stiff in all my joints especially in the morning. The big problem I'm having is mood changes and depression, which is getting worse. I was on an antidepressant for a while, but that gave me high blood pressue. I had thought I was feeling depressed because I had an extremely difficult year. My mother was very ill from December until she died in late March, and my husband and I were frazzled caring for her, especially because she was a nasty, miserable person. My son was supposed to deploy to Iraq again,a nd our dog died. So... I thought a little depression was normal. But now all that is over, and the depression is worse; what's more, I notice that if I get up feeling pretty good in the morning, I start feeling miserable about an hour or two after I take my pill. I checked online, and sure enough mood changes and depression can be side effects. I have an appointment with my oncologist on Wednesday, but I wondered if anyone else has experiencde this. A friend at church who has cancer knows someone who had similar problems with Arimidex. Thanks for any input you can give me.
Helen0 -
Possibilitiesgrandmato3 said:Arimidex
Hello! I'm new here. I actually came because I'm having problems with Arimidex myself and wanted to see what others have experienced. I've been on it for 2 1/2 years. At first I had minor stuff like a little nausea and hot flashes, but that seems to have gone away. (It helped to take my pill at night, but I forget it more easily if I odn't take it first thing with breakfast.) Lately the joint and bone pains have gotten worse. It hurts to carry anything wiht my right arm, my fingers are killing me, and I'm very stiff in all my joints especially in the morning. The big problem I'm having is mood changes and depression, which is getting worse. I was on an antidepressant for a while, but that gave me high blood pressue. I had thought I was feeling depressed because I had an extremely difficult year. My mother was very ill from December until she died in late March, and my husband and I were frazzled caring for her, especially because she was a nasty, miserable person. My son was supposed to deploy to Iraq again,a nd our dog died. So... I thought a little depression was normal. But now all that is over, and the depression is worse; what's more, I notice that if I get up feeling pretty good in the morning, I start feeling miserable about an hour or two after I take my pill. I checked online, and sure enough mood changes and depression can be side effects. I have an appointment with my oncologist on Wednesday, but I wondered if anyone else has experiencde this. A friend at church who has cancer knows someone who had similar problems with Arimidex. Thanks for any input you can give me.
Helen
You could talk with your oncologist about taking one of the other aromatase inhibitors. Though they all are famous for hot flashes, different folks respond differently to each. I'm on Aromasin (aka exemestane). Another one is Femara. You can go back to Tamoxifen which works totally differently by blocking the estrogen receptors rather than reducing the amount of estrogen in the body. Tamoxifen was the gold standard prevention treatment for decades. The aromatase inhibitors are about twice as effective, but how much of a difference that makes depends on your particular situation. If I have a ten percent chance of getting a reoccurance with no treatment(90% chance of no reoccurance), Tamoxifen will improve my odds to 5 percent chance of getting a reoccurance(95% chance of no reoccurance) and the aromatase inhibitor will take it to 2 1/2 % chance of a reoccurance (97 1/2 % chance of no reoccurance). The difference between 95% and 97.5% might not be worth all those aches and pains, not to mention the cost to your bones and pocketbook, but of course that depends on how you feel about it and how good your bones are to begin with. My oncologist gives me the facts and lets me decide what treatment I want. That makes me very nervous, but when I research what he's told me I find he's right on the mark with his facts. Nothing they have out there guarentees that we will all live to be 100, but doctors will give us the best they have. We have to decide if the "best" is really worth it. Mind you, if you have a 50% chance of reoccurance with no treatment and Tamoxifen takes it to only 25%(75% chance of no reoccurance) and the aromatase inhibitors take it to only 12% chance of reoccurance(88% chance of no reoccurance), suddenly it may be worth all the aches and pains for you to stay on the aromatase inhibitors. So talk to your oncologist. See if he can recommend a better course of action. Does he have a different mood stabilizer that will keep your blood pressure low? Would Vitamin D testing be helpful? Is there another treatment that would work as well or nearly as well with less expected side effects? These are the questions I would ask my doctor. Let us know what he says.0 -
Cabbot, my learned friend, Icabbott said:Possibilities
You could talk with your oncologist about taking one of the other aromatase inhibitors. Though they all are famous for hot flashes, different folks respond differently to each. I'm on Aromasin (aka exemestane). Another one is Femara. You can go back to Tamoxifen which works totally differently by blocking the estrogen receptors rather than reducing the amount of estrogen in the body. Tamoxifen was the gold standard prevention treatment for decades. The aromatase inhibitors are about twice as effective, but how much of a difference that makes depends on your particular situation. If I have a ten percent chance of getting a reoccurance with no treatment(90% chance of no reoccurance), Tamoxifen will improve my odds to 5 percent chance of getting a reoccurance(95% chance of no reoccurance) and the aromatase inhibitor will take it to 2 1/2 % chance of a reoccurance (97 1/2 % chance of no reoccurance). The difference between 95% and 97.5% might not be worth all those aches and pains, not to mention the cost to your bones and pocketbook, but of course that depends on how you feel about it and how good your bones are to begin with. My oncologist gives me the facts and lets me decide what treatment I want. That makes me very nervous, but when I research what he's told me I find he's right on the mark with his facts. Nothing they have out there guarentees that we will all live to be 100, but doctors will give us the best they have. We have to decide if the "best" is really worth it. Mind you, if you have a 50% chance of reoccurance with no treatment and Tamoxifen takes it to only 25%(75% chance of no reoccurance) and the aromatase inhibitors take it to only 12% chance of reoccurance(88% chance of no reoccurance), suddenly it may be worth all the aches and pains for you to stay on the aromatase inhibitors. So talk to your oncologist. See if he can recommend a better course of action. Does he have a different mood stabilizer that will keep your blood pressure low? Would Vitamin D testing be helpful? Is there another treatment that would work as well or nearly as well with less expected side effects? These are the questions I would ask my doctor. Let us know what he says.
Cabbot, my learned friend, I have a question about all this. If the Tamoxifin only blocks the receptors, do we still get some benefit from the estrogen in our bodies? Are the aromatase inhibitors more of a estrogen desert? I worry about the side effects of estrogen deprivation like hair loss, aging skin, etc (I won't go on cause the list is just too much of a downer!) I have been on the tamoxifin for about 5 months and so far haven't turned into an overnight old lady. My doc. talks about switching to an aromatase inhibitor and I am scared. Any thoughts? Thanks for all the research you have done to become our resident expert! love, Joyce0 -
Advantages vs. DisadvantagesJoycelouise said:Cabbot, my learned friend, I
Cabbot, my learned friend, I have a question about all this. If the Tamoxifin only blocks the receptors, do we still get some benefit from the estrogen in our bodies? Are the aromatase inhibitors more of a estrogen desert? I worry about the side effects of estrogen deprivation like hair loss, aging skin, etc (I won't go on cause the list is just too much of a downer!) I have been on the tamoxifin for about 5 months and so far haven't turned into an overnight old lady. My doc. talks about switching to an aromatase inhibitor and I am scared. Any thoughts? Thanks for all the research you have done to become our resident expert! love, Joyce
Tamoxifen and the aromatase inhibitors work differently to stop cancer. Tamoxifen blocks the estrogen receptors with a weak estrogen-like substance. Like putting watered down gas in a car makes it stop running, the weak estrogen-like substances keep cancer from growing. Well, at least they seem to work for awhile. But after a few years (some researchers think about 2.5 years) cancer sometimes mutates into a form that actually runs on the weak stuff. It takes about 2.5 years more before these cells get numerous enough to start spreading and causing problems. Taking you off the Tamoxifen after 5 years stops the new cancer from getting the Tamoxifen that is now fueling its growth and slows down the chance of reoccurance for another 5 years (hopefully!). While some women lose bone while on Tamoxifen, many build bone while on Tamoxifen. That may be from the extra estrogen-like substances in addition to their own estrogen. Tamoxifen can cause uterine cancer because it stimulates cell growth there. I was one of the rare lovelies to get stubborn ovarian cysts while on Tamoxifen. That can be one of the rarer but known side effects of Tamoxifen. California lists Tamoxifen as a carcenigen (cancer causing agent). Please note that early stage uterine cancer is much easier to fix when the doctors are looking for it than untreated breast cancer is. Just remember to see your gyn yearly and tell him right away if unexpected bleeding occurs.
The aromatase inhibitors can only be used AFTER menapause has happened. That is because they are not strong enough to stop the ovaries from making estrogen. However, they can stop estrogen from being made by our andrenal glands and body fat. Estrogen dessert about describes it. Since the estrogen level is pretty much nil, the cancer doesn't have any fuel at all. That stops estrogen postitive cancer from growing even better than Tamoxifen with its weak estrogen-like substances. (Totally off the subject, did you know that Tamoxifen was first created to help women get pregnant? Or that it is currently used by body builders to cut fat?)Cancer cells don't adopt to a no fuel environment. However, if an estrogen negative cancer cell exists, it could grow in either environment, so aromatase inhibitors don't mean a zero risk of cancer. As my oncologist said, "If it comes back, hormone therapy won't be all you need. It will be aggressive in nature. . ." He's a nice guy but he doesn't hold back on the bad news. Aromatase inhibitors don't seem to cause uterine cancer. Neither do they prevent it, but at least they don't cause it.
I've been on both drugs. After a surgical menapause for suspected ovarian cancer (false alarm), my doctor suggested I change to the aromatase inhibitor. I had been on Tamoxifen for 2.5 to three years. A study had been done to show that patients who switched at 2.5 years from Tamoxifen to Exemestane survived much longer and with less reoccurances than folks who stayed on Tamoxifen. A lot of research suggests that folks that START on the aromatase inhibitors get less reoccurances than folks that start on Tamoxifen. But the research is very young because the drugs haven't existed all that long. There is no research yet to show how long the better effects last. There is no 20 year research to show what the long term outcome will be on our bodies. There is no comparison long term research showing when is the optimal time to quit Tamoxifen and start on an aromatase inhibitor. There are only a few completed shorter studies so my doctor went with the one that he knew was successful mentioned above and suggested I switch. That was about 3 or 4 years ago. It is hard for me to separate the surgical menapause from the effects of the aromatase inhibitor, but between the two I certainly experienced plenty of hot flashes. I have also learned to really baby my joints. Aromatase inhibitors do cause inflamed joints that feel somewhat like arthritis. However, Vitamin D testing and treatment seemed to stop that effect on my joints. I was very grateful that it worked. I'm sure the orthodics and the exercises I do help too. But I still have to make sure I don't get an overuse injury. I am very active but I don't carry a shoulder bag, do too many toe stretches in yoga class, or work past the point of being tired at anything. Pain is not the same as tired. Tired muscles are good. Strained muscles are not. Another effect of aromatase inhibitors is that they are all bone eaters. Many studies have pointed out that going on bone builders like Alendronate sodium (Fosamax) will stop bone loss for folks on aromatase inhibitors. After 2 years on the Exemestane, my regular doctor finally decided that it was time to stop the bone loss and put me on the generic form of Fosamax. I don't have osteoporosis yet, but my back had some osteopenic spots and I didn't want it to get worse. Before you go on an aromatase inhibitor, you should have a bone scan. This needs to be repeated every two years to keep close track of how your bones are faring. You don't want to beat cancer only to break a hip and die anyhow of complications of osteoporosis a few years later!
So what should you do? You need to assess your risk. If you are dealing with aggressive cancer that just happens to be estrogen driven, then it is certainly worth your while to check out the aromatase inhibitors. Yes, I have hot flashes regularly (like every hour though they are not as hot this year as they were last year). Yes, my joints have been problematic at times, but I've found ways to take care of most of that problem. But these aromatase inhibitors are TWICE as good as Tamoxifen at stopping cancer growth and spread. If you find them unbearable, you can always go back to Tamoxifen. You could stay on Tamoxifen for a few years and then go on the aromatase inhibitors. You could go on the aromatase inhibitors for 5 years and then quit. Perhaps future research will discover that we can stay on the aromatase inhibitors much longer. Maybe they will discover that we can flip from one to the other back and forth for several decades. Maybe they will discover that 5 years is sufficient treatment. Right now, it is a guessing game. The only thing that is known is that the aromatase inhibitors are about twice as good as Tamoxifen, which was the gold standard for treatment for the last few decades.
C. Abbott0 -
more thoughtsJoycelouise said:Cabbot, my learned friend, I
Cabbot, my learned friend, I have a question about all this. If the Tamoxifin only blocks the receptors, do we still get some benefit from the estrogen in our bodies? Are the aromatase inhibitors more of a estrogen desert? I worry about the side effects of estrogen deprivation like hair loss, aging skin, etc (I won't go on cause the list is just too much of a downer!) I have been on the tamoxifin for about 5 months and so far haven't turned into an overnight old lady. My doc. talks about switching to an aromatase inhibitor and I am scared. Any thoughts? Thanks for all the research you have done to become our resident expert! love, Joyce
Another thing crossed my mind. I haven't noticed any extra wrinkles or hair loss on the aromatase inhibitors. I did notice a lot of hair in the tub while on Tamoxifen, not that I went bald. Maybe other women have other experiences, but those two things have not been something I've had to deal with. Also, my moods are more level now, but that may be the effect of surgery as well as the aromatase inhibitors. Finally, I do not have monthly headaches anymore. Again, surgery may have caused that. Ovaries may be great for having babies, but I don't miss the PMS!0 -
Wow, Cabbot! That wascabbott said:more thoughts
Another thing crossed my mind. I haven't noticed any extra wrinkles or hair loss on the aromatase inhibitors. I did notice a lot of hair in the tub while on Tamoxifen, not that I went bald. Maybe other women have other experiences, but those two things have not been something I've had to deal with. Also, my moods are more level now, but that may be the effect of surgery as well as the aromatase inhibitors. Finally, I do not have monthly headaches anymore. Again, surgery may have caused that. Ovaries may be great for having babies, but I don't miss the PMS!
Wow, Cabbot! That was fascinating and so well written. I feel much better, both from the medical news and the personal news about secondary problems. I can't tell you how much I appreciate the time it took you to explain all that and even more, the time it took you to learn all that. A million thanks.
Now I will happily stay on my tamoxifin till my onc. tells me to switch and I will not dread any changes. I have lost my cycles what with all the chemo but my onc. wants to wait a little longer before declaring me officially menopausal. My blood tests show me right at the border. And I will remember to ask about bone support too.
I also do yoga. Namaste! Joyce0 -
Arimidex
I already have osteoporosis - another side effect of the Arimidex that I acquired. I take calcium and vitamin D for that. I don't take anything else yet, because I'm concerned about the side effects on the digestive system. I have Crohn's disease and diverticulosis. After my next bone density scan, we'll see. My oncologist suggests a once-a-year injection that doesn't have much in the way of side effects; he's finding out whether insurance will pay for it. When I was considering treatment options after my mastectomy, the oncologist gave me tons of information to look over. He also let me make up my own mind, and only then gave me his opinion. Will let you know what he says about my current problem with joints and depression. Maybe he will suggest a different antidepressant.0 -
My Gratitudecabbott said:Advantages vs. Disadvantages
Tamoxifen and the aromatase inhibitors work differently to stop cancer. Tamoxifen blocks the estrogen receptors with a weak estrogen-like substance. Like putting watered down gas in a car makes it stop running, the weak estrogen-like substances keep cancer from growing. Well, at least they seem to work for awhile. But after a few years (some researchers think about 2.5 years) cancer sometimes mutates into a form that actually runs on the weak stuff. It takes about 2.5 years more before these cells get numerous enough to start spreading and causing problems. Taking you off the Tamoxifen after 5 years stops the new cancer from getting the Tamoxifen that is now fueling its growth and slows down the chance of reoccurance for another 5 years (hopefully!). While some women lose bone while on Tamoxifen, many build bone while on Tamoxifen. That may be from the extra estrogen-like substances in addition to their own estrogen. Tamoxifen can cause uterine cancer because it stimulates cell growth there. I was one of the rare lovelies to get stubborn ovarian cysts while on Tamoxifen. That can be one of the rarer but known side effects of Tamoxifen. California lists Tamoxifen as a carcenigen (cancer causing agent). Please note that early stage uterine cancer is much easier to fix when the doctors are looking for it than untreated breast cancer is. Just remember to see your gyn yearly and tell him right away if unexpected bleeding occurs.
The aromatase inhibitors can only be used AFTER menapause has happened. That is because they are not strong enough to stop the ovaries from making estrogen. However, they can stop estrogen from being made by our andrenal glands and body fat. Estrogen dessert about describes it. Since the estrogen level is pretty much nil, the cancer doesn't have any fuel at all. That stops estrogen postitive cancer from growing even better than Tamoxifen with its weak estrogen-like substances. (Totally off the subject, did you know that Tamoxifen was first created to help women get pregnant? Or that it is currently used by body builders to cut fat?)Cancer cells don't adopt to a no fuel environment. However, if an estrogen negative cancer cell exists, it could grow in either environment, so aromatase inhibitors don't mean a zero risk of cancer. As my oncologist said, "If it comes back, hormone therapy won't be all you need. It will be aggressive in nature. . ." He's a nice guy but he doesn't hold back on the bad news. Aromatase inhibitors don't seem to cause uterine cancer. Neither do they prevent it, but at least they don't cause it.
I've been on both drugs. After a surgical menapause for suspected ovarian cancer (false alarm), my doctor suggested I change to the aromatase inhibitor. I had been on Tamoxifen for 2.5 to three years. A study had been done to show that patients who switched at 2.5 years from Tamoxifen to Exemestane survived much longer and with less reoccurances than folks who stayed on Tamoxifen. A lot of research suggests that folks that START on the aromatase inhibitors get less reoccurances than folks that start on Tamoxifen. But the research is very young because the drugs haven't existed all that long. There is no research yet to show how long the better effects last. There is no 20 year research to show what the long term outcome will be on our bodies. There is no comparison long term research showing when is the optimal time to quit Tamoxifen and start on an aromatase inhibitor. There are only a few completed shorter studies so my doctor went with the one that he knew was successful mentioned above and suggested I switch. That was about 3 or 4 years ago. It is hard for me to separate the surgical menapause from the effects of the aromatase inhibitor, but between the two I certainly experienced plenty of hot flashes. I have also learned to really baby my joints. Aromatase inhibitors do cause inflamed joints that feel somewhat like arthritis. However, Vitamin D testing and treatment seemed to stop that effect on my joints. I was very grateful that it worked. I'm sure the orthodics and the exercises I do help too. But I still have to make sure I don't get an overuse injury. I am very active but I don't carry a shoulder bag, do too many toe stretches in yoga class, or work past the point of being tired at anything. Pain is not the same as tired. Tired muscles are good. Strained muscles are not. Another effect of aromatase inhibitors is that they are all bone eaters. Many studies have pointed out that going on bone builders like Alendronate sodium (Fosamax) will stop bone loss for folks on aromatase inhibitors. After 2 years on the Exemestane, my regular doctor finally decided that it was time to stop the bone loss and put me on the generic form of Fosamax. I don't have osteoporosis yet, but my back had some osteopenic spots and I didn't want it to get worse. Before you go on an aromatase inhibitor, you should have a bone scan. This needs to be repeated every two years to keep close track of how your bones are faring. You don't want to beat cancer only to break a hip and die anyhow of complications of osteoporosis a few years later!
So what should you do? You need to assess your risk. If you are dealing with aggressive cancer that just happens to be estrogen driven, then it is certainly worth your while to check out the aromatase inhibitors. Yes, I have hot flashes regularly (like every hour though they are not as hot this year as they were last year). Yes, my joints have been problematic at times, but I've found ways to take care of most of that problem. But these aromatase inhibitors are TWICE as good as Tamoxifen at stopping cancer growth and spread. If you find them unbearable, you can always go back to Tamoxifen. You could stay on Tamoxifen for a few years and then go on the aromatase inhibitors. You could go on the aromatase inhibitors for 5 years and then quit. Perhaps future research will discover that we can stay on the aromatase inhibitors much longer. Maybe they will discover that we can flip from one to the other back and forth for several decades. Maybe they will discover that 5 years is sufficient treatment. Right now, it is a guessing game. The only thing that is known is that the aromatase inhibitors are about twice as good as Tamoxifen, which was the gold standard for treatment for the last few decades.
C. Abbott
I'm grateful for your replies no matter whose question. I make it a point to read your posts whatever the topic because you provide all of the detailed information that is often times just implied by my doctors or nurses. You also make me feel more confident about the treatment choices I have made. I do my research but somehow, you bring "layman research" to an art form or pherhaps I should say a scientific art form. Thank you. Marilynn0 -
Toe Paincabbott said:Possible help
I am on a cousin to the drug you are on. It is called Exemestane or Aromasin and like yours, it is known to cause joint pain. I had a problem with inflamed toe joints. Don't laugh! I felt like the Little Mermaid who had pain every time she walked on land. Last year, after trying orthodics in my shoes for a year (they helped some, but mornings were still ouchy) and debating daily whether or not to take more Tylenol or Ibruprofen, the oncology physician's assistant recommended that I have my Vitamin D levels checked and go on prescription Vitamin D if the levels were low. I know I work 8-4 three seasons of the year, but I took a multi with D in it, drank milk fortified with D, and worked in the garden or hiked outside all summer and in the evenings the rest of the year too. I never imagined that my levels would be low. They were. The specialist told me that aching joints are sometimes relieved with adequate vitamin D. It worked just like the pain relievers, but no side effects: no rebound headaches and no nosebleeds. When I changed over to the stuff you buy over the counter, it didn't work as well. It turned out I needed a bit more to keep the good effects. I take a double dose every other day. Stretching and avoiding injuries helps too. I haven't carried a shoulder bag in years. When I forget and "shoulder" a bag, my neck and shoulder remind me with a vengence why I only carry a small credit card holder in my pocket to the store. I do weight lifting once or twice a week, but I raise the weights with caution. Strong muscles prevent joint injury but risk-taking causes accidents. So I try very hard to avoid injuries and not overdo. I will be tested for Vitamin D again this winter to make sure I'm not too low or too high. There are bad effects of too much Vitamin D too, but low levels can cause the achy joints. The physician's assistant said that it works for many patients with aromatase inhibitor aches and for some folks with arthritis.
C. Abbott
Hi C. Abbott
I was so glad to read your post. I am on Aromasin too and have had a lot of pain in one toe. Sometimes I have trouble walking on that foot. Occasionally some of my other toes hurt too. Maby I should have my vitamin D level checked. I have been wanting to post to see if anyone else has this problem but I was ashamed to post about a "toe pain". lol The thing is I was on Aromasin for like a year before I noticed the pain. Do you think it could still be the Aromasin?
Thanks
Jadie0 -
Toe Paincabbott said:Possible help
I am on a cousin to the drug you are on. It is called Exemestane or Aromasin and like yours, it is known to cause joint pain. I had a problem with inflamed toe joints. Don't laugh! I felt like the Little Mermaid who had pain every time she walked on land. Last year, after trying orthodics in my shoes for a year (they helped some, but mornings were still ouchy) and debating daily whether or not to take more Tylenol or Ibruprofen, the oncology physician's assistant recommended that I have my Vitamin D levels checked and go on prescription Vitamin D if the levels were low. I know I work 8-4 three seasons of the year, but I took a multi with D in it, drank milk fortified with D, and worked in the garden or hiked outside all summer and in the evenings the rest of the year too. I never imagined that my levels would be low. They were. The specialist told me that aching joints are sometimes relieved with adequate vitamin D. It worked just like the pain relievers, but no side effects: no rebound headaches and no nosebleeds. When I changed over to the stuff you buy over the counter, it didn't work as well. It turned out I needed a bit more to keep the good effects. I take a double dose every other day. Stretching and avoiding injuries helps too. I haven't carried a shoulder bag in years. When I forget and "shoulder" a bag, my neck and shoulder remind me with a vengence why I only carry a small credit card holder in my pocket to the store. I do weight lifting once or twice a week, but I raise the weights with caution. Strong muscles prevent joint injury but risk-taking causes accidents. So I try very hard to avoid injuries and not overdo. I will be tested for Vitamin D again this winter to make sure I'm not too low or too high. There are bad effects of too much Vitamin D too, but low levels can cause the achy joints. The physician's assistant said that it works for many patients with aromatase inhibitor aches and for some folks with arthritis.
C. Abbott
Hi C. Abbott
I was so glad to read your post. I am on Aromasin too and have had a lot of pain in one toe. Sometimes I have trouble walking on that foot. Occasionally some of my other toes hurt too. Maby I should have my vitamin D level checked. I have been wanting to post to see if anyone else has this problem but I was ashamed to post about a "toe pain". lol The thing is I was on Aromasin for like a year before I noticed the pain. Do you think it could still be the Aromasin?
Thanks
Jadie0 -
foot painJadie said:Toe Pain
Hi C. Abbott
I was so glad to read your post. I am on Aromasin too and have had a lot of pain in one toe. Sometimes I have trouble walking on that foot. Occasionally some of my other toes hurt too. Maby I should have my vitamin D level checked. I have been wanting to post to see if anyone else has this problem but I was ashamed to post about a "toe pain". lol The thing is I was on Aromasin for like a year before I noticed the pain. Do you think it could still be the Aromasin?
Thanks
Jadie
I did not develop foot pain until about 6 months on exemestane had passed. Another thing that seems to help is pushing my feet against a flat surface like I was standing on them while I am in bed at night. My sister did this for plantar fasciitis where the heels of her feet hurt. If you don't have a foot board on your bed, you can sleep so that you can use the headboard. Boy does that make my husband think I'm weird! But it helped and didn't cost anything. It is kind of like a down dog with no weight and no bends in your toes. The doctor totally nixed bended toes until I could go two weeks without pain. Now I'm able to do the down dogs but I'm still avoiding the weekly toe stretches. Maybe in a few months...Hope that helps too!0 -
Toe painJadie said:Toe Pain
Hi C. Abbott
I was so glad to read your post. I am on Aromasin too and have had a lot of pain in one toe. Sometimes I have trouble walking on that foot. Occasionally some of my other toes hurt too. Maby I should have my vitamin D level checked. I have been wanting to post to see if anyone else has this problem but I was ashamed to post about a "toe pain". lol The thing is I was on Aromasin for like a year before I noticed the pain. Do you think it could still be the Aromasin?
Thanks
Jadie
Hi Jadie, I too have toe pain, it's real and it 'hurts' it's like what gout must feel like, I have been blaming it on the Taxol.....hmmmm wonder if it's the Arimidex? It started during chemo with Taxol, still hurts and burns, pins and needles at times. But the R. big toe is so sore, can't stand socks or sheets on it...I sleep with my feet out and it's cold here in Ontario Canada! brrrrr
I am always looking for the cure for my feet....one lady told me to put Vicks on the toe, it has eucaliptus (sp)in it and seems to ease the pain.
Hope that helps......your not alone!0 -
Thank you C. for yourcabbott said:Advantages vs. Disadvantages
Tamoxifen and the aromatase inhibitors work differently to stop cancer. Tamoxifen blocks the estrogen receptors with a weak estrogen-like substance. Like putting watered down gas in a car makes it stop running, the weak estrogen-like substances keep cancer from growing. Well, at least they seem to work for awhile. But after a few years (some researchers think about 2.5 years) cancer sometimes mutates into a form that actually runs on the weak stuff. It takes about 2.5 years more before these cells get numerous enough to start spreading and causing problems. Taking you off the Tamoxifen after 5 years stops the new cancer from getting the Tamoxifen that is now fueling its growth and slows down the chance of reoccurance for another 5 years (hopefully!). While some women lose bone while on Tamoxifen, many build bone while on Tamoxifen. That may be from the extra estrogen-like substances in addition to their own estrogen. Tamoxifen can cause uterine cancer because it stimulates cell growth there. I was one of the rare lovelies to get stubborn ovarian cysts while on Tamoxifen. That can be one of the rarer but known side effects of Tamoxifen. California lists Tamoxifen as a carcenigen (cancer causing agent). Please note that early stage uterine cancer is much easier to fix when the doctors are looking for it than untreated breast cancer is. Just remember to see your gyn yearly and tell him right away if unexpected bleeding occurs.
The aromatase inhibitors can only be used AFTER menapause has happened. That is because they are not strong enough to stop the ovaries from making estrogen. However, they can stop estrogen from being made by our andrenal glands and body fat. Estrogen dessert about describes it. Since the estrogen level is pretty much nil, the cancer doesn't have any fuel at all. That stops estrogen postitive cancer from growing even better than Tamoxifen with its weak estrogen-like substances. (Totally off the subject, did you know that Tamoxifen was first created to help women get pregnant? Or that it is currently used by body builders to cut fat?)Cancer cells don't adopt to a no fuel environment. However, if an estrogen negative cancer cell exists, it could grow in either environment, so aromatase inhibitors don't mean a zero risk of cancer. As my oncologist said, "If it comes back, hormone therapy won't be all you need. It will be aggressive in nature. . ." He's a nice guy but he doesn't hold back on the bad news. Aromatase inhibitors don't seem to cause uterine cancer. Neither do they prevent it, but at least they don't cause it.
I've been on both drugs. After a surgical menapause for suspected ovarian cancer (false alarm), my doctor suggested I change to the aromatase inhibitor. I had been on Tamoxifen for 2.5 to three years. A study had been done to show that patients who switched at 2.5 years from Tamoxifen to Exemestane survived much longer and with less reoccurances than folks who stayed on Tamoxifen. A lot of research suggests that folks that START on the aromatase inhibitors get less reoccurances than folks that start on Tamoxifen. But the research is very young because the drugs haven't existed all that long. There is no research yet to show how long the better effects last. There is no 20 year research to show what the long term outcome will be on our bodies. There is no comparison long term research showing when is the optimal time to quit Tamoxifen and start on an aromatase inhibitor. There are only a few completed shorter studies so my doctor went with the one that he knew was successful mentioned above and suggested I switch. That was about 3 or 4 years ago. It is hard for me to separate the surgical menapause from the effects of the aromatase inhibitor, but between the two I certainly experienced plenty of hot flashes. I have also learned to really baby my joints. Aromatase inhibitors do cause inflamed joints that feel somewhat like arthritis. However, Vitamin D testing and treatment seemed to stop that effect on my joints. I was very grateful that it worked. I'm sure the orthodics and the exercises I do help too. But I still have to make sure I don't get an overuse injury. I am very active but I don't carry a shoulder bag, do too many toe stretches in yoga class, or work past the point of being tired at anything. Pain is not the same as tired. Tired muscles are good. Strained muscles are not. Another effect of aromatase inhibitors is that they are all bone eaters. Many studies have pointed out that going on bone builders like Alendronate sodium (Fosamax) will stop bone loss for folks on aromatase inhibitors. After 2 years on the Exemestane, my regular doctor finally decided that it was time to stop the bone loss and put me on the generic form of Fosamax. I don't have osteoporosis yet, but my back had some osteopenic spots and I didn't want it to get worse. Before you go on an aromatase inhibitor, you should have a bone scan. This needs to be repeated every two years to keep close track of how your bones are faring. You don't want to beat cancer only to break a hip and die anyhow of complications of osteoporosis a few years later!
So what should you do? You need to assess your risk. If you are dealing with aggressive cancer that just happens to be estrogen driven, then it is certainly worth your while to check out the aromatase inhibitors. Yes, I have hot flashes regularly (like every hour though they are not as hot this year as they were last year). Yes, my joints have been problematic at times, but I've found ways to take care of most of that problem. But these aromatase inhibitors are TWICE as good as Tamoxifen at stopping cancer growth and spread. If you find them unbearable, you can always go back to Tamoxifen. You could stay on Tamoxifen for a few years and then go on the aromatase inhibitors. You could go on the aromatase inhibitors for 5 years and then quit. Perhaps future research will discover that we can stay on the aromatase inhibitors much longer. Maybe they will discover that we can flip from one to the other back and forth for several decades. Maybe they will discover that 5 years is sufficient treatment. Right now, it is a guessing game. The only thing that is known is that the aromatase inhibitors are about twice as good as Tamoxifen, which was the gold standard for treatment for the last few decades.
C. Abbott
Thank you C. for your informative post, I love reading them because you explain everything so well and in such detail. I have been on the Tamoxifen for 11 months now and will question my oncologist about aromatase inhibitors. Hugs, Lili0 -
Toe painSkybuf said:Toe pain
Hi Jadie, I too have toe pain, it's real and it 'hurts' it's like what gout must feel like, I have been blaming it on the Taxol.....hmmmm wonder if it's the Arimidex? It started during chemo with Taxol, still hurts and burns, pins and needles at times. But the R. big toe is so sore, can't stand socks or sheets on it...I sleep with my feet out and it's cold here in Ontario Canada! brrrrr
I am always looking for the cure for my feet....one lady told me to put Vicks on the toe, it has eucaliptus (sp)in it and seems to ease the pain.
Hope that helps......your not alone!
Thanks Skybuf and Cabbott. I will try your suggestions. Sky it sounds like it could be either one (Taxol or Arimidex) dosen't it. Anyway it HURTS!
Thanks again
Jadie0
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