A small problem - Arimidex?

cabbott 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

cabbott 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.

Joycelouise 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

cabbott 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

Jadie 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

cabbott 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