Lower dose of Exemestane (<25 mg)

Posted by lauranc @lauranc, Aug 17, 2021

I started to take Exemestane to avoid some of the side effects that I had from Letrazole that made me extremely fatigued. Even though I feel better with Exemestane I do have joint pains. I wanted to know if somebody knows of clinical trials to study doce reduction. Could I try a lower dose and still have the benefit of the drug but with lower side effects? If you know of any trials or doctors that are working with a doce reduction please let me know

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@whr

Thank you, I sent the article to my oncologist, I would be willing to try a reduced dosage, something to discuss.

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Good for you we have to advocate for ourselves where we can. Please keep me posted, I will be thinking about you.

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I've questioned virtually everything since this nightmare began, she's very patient with me.

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@whr

I can't say I'm "comfortable" not taking it but I was pretty miserable so felt there wasn't a choice, I was offered Tamoxifen or try another brand of the same thing. I don't feel there has been enough done to determine if it is right for everyone and feel your hormone levels should be checked before beginning treatment so you have a benchmark during treatment to see if it is doing what it was intended to do.

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Totally agree with your statement of having a baseline/benchmark prior to starting Anastrozole or others. This was not done for me. When I asked how do doctors Know med is working he said “we take it for granted “. Not a very professional answer in my book.

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I agree, if they don't it is working, it is even more difficult to suffer the side effects.

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Is there a way to investigate if there are clinical trials on lower doses? It is encouraging that a doctor is allowing half of the regular dose for
windyshores 

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@whr

I can't say I'm "comfortable" not taking it but I was pretty miserable so felt there wasn't a choice, I was offered Tamoxifen or try another brand of the same thing. I don't feel there has been enough done to determine if it is right for everyone and feel your hormone levels should be checked before beginning treatment so you have a benchmark during treatment to see if it is doing what it was intended to do.

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I got off chemo several months ago for breast cancer, HER2 positive.. I had radiation also. I don't want to take Tamoxifen. It didn't make me feel well. I talked to a friend who was miserable on it for 3 years and finally stopped. She said our oncologist admitted it only improved the chances of cancer not coming back by 2%. I asked him and he agreed that was true. He is going to find something else for me.

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I hope he finds something that will agree with you. My situation was a bit different, they offered chem and radiation "in case" since there were positive lymph nodes, but I passed. I am told every time I see the oncologist every three months that the risk of recurrence is the greatest the first two years following surgery, it will be two years in December, so far all the blood work and physical exams are good. I had a PET scan following surgery and it was clear, praying for that to continue. I would be interested in knowing if he finds something else for you.

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@raebaby

I got off chemo several months ago for breast cancer, HER2 positive.. I had radiation also. I don't want to take Tamoxifen. It didn't make me feel well. I talked to a friend who was miserable on it for 3 years and finally stopped. She said our oncologist admitted it only improved the chances of cancer not coming back by 2%. I asked him and he agreed that was true. He is going to find something else for me.

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I also am her2 positive, if you are also estrogen positive, I would hope that your doctor explained the higher risk of recurrence and poorer outcomes with this type of cancer. I question everything and I hedged my bets and took everything. You can find information on most everything on the internet if you look. It has still been a long and winding road with this cancer. I am grateful for the life I have but enduring side effects is certainly part of that life. I hope you will have an easier time of it but I also hope you will keep an open mind about treatments. Drugs act different on everyone, some people do great on one and some people do great on a different one.

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@auntieoakley

I am hopeful that you can find a way to continue on some form of therapy, as it can lower your risk of recurrence. It does seem like a smaller dose or intermittent dose would be better than giving up altogether. Also there are still a few other choices if you are willing to try them.

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Chris, I was on Anastrozole 1 mg, (estrogen didn't reduce enough), went on the trial for Anastrozole 10 mg (which did drop my estrogen <10. ) I have been on Letrozole for about a year, and now I am waking up 3 - 4 times a night with shin, calf, and feet cramps, which makes me get up to walk it off . With Dr's suggestion, I am off Letrozole for 1 week and those side effects are gone.... Now what? What do you know about side effects with Exemestane? I'm not excited about Tamoxifen as my sister was on it and her cancer metastasized and she died... I want to stay on AI to give myself the best chance, but I'm working thru AI's pretty quickly. Cancer diagnosis was Feb 2020. Thanks for any help or info you can provide me. Thanks for all the help you give ALL of us!!!

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Unfortunately I haven’t taken exemestane to know for sure but I can tell you that all of these treatments can have weird side effects on some of us. I also have issue with really bad cramps at night, so does my husband and a friend of mine that has had breast cancer and takes letrozole. I use a product called calm, it is a magnesium supplement, my doctor said if it works use it but be careful and don’t take it more than you need, because it can act as a laxative. I use it half strength for both of us, that typically is enough to stop cramps for at least a week and sometimes 3 or 4 weeks. I guess it depends on how much we are getting in our food.
My friend drinks pickle juice, her doctor told her to try it because treatments make you burn through salts like potassium and magnesium. I wouldn’t recommend it without your doctors blessing. But it might be able to keep you on track if the cramps are the thing keeping you from it. Calm is a powder you can mix in water, it comes in flavors but I find the plain more palatable. When do you see your doctor again? Other than cramps have you been tolerating letrozole well?

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