With a great deal of effort, I managed to get my exemestane switched back to the original generic. I still have diarrhea, but not as extreme with the other generic. My oncologist thinks it is not the exemestane that is causing it. She says it is "not usual." It says it is a side effect of unknown frequency at breastcancer.org.
If it isn't the exemestane, then I need to find the cause.
Has anyone else had gastric upset and diarrhea from exemestane, aka Aromasin, (or other AIs)?
I also have thinning hair, right at the back of my crown so I cannot see it without a mirror. Hard to cover.
I was feeling lethargic, but have recovered, but I read an article that said after three months, there is a decrease in daytime physical activity, especially for those who were at higher activity levels and with lower BMI. That is me. I can't do this. Anyone who was very active notice a decline?
Having intermittent insomnia. I read that magnesium can help. Oncologists have never heard of that. (There are placebo double blind studies showing it, in post-menopausal women.) They recommended melatonin, which I have not found helpful. I won't take cannabis.
They have referred me to a psychiatric np to get help with side effects. Maybe she can answer these questions. In the meantime, would like to know others' experiences with exemestane. I know we all differ. (One good thing is that the joint pain I had with anastrozole is mostly gone.)
Thanks, Chris O'
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For sleep, checkout Dr Andrew Huberman for very comprehensive set of information. He is a neurobiology professor and researcher at Stanford and has done extensive research and offers a website and podcasts about sleep.
I try to do all the “right” things but when that fails I take a teeny dose of Xanax when I know I’m sleep deprived and really need some rest. The internet rants about it being addictive but c’mon… if I wake early, and decide I really need some more rest, I take half of a .25mg pill. If I’m stressed out before bedtime, I take a whole one of those. I’ve been using it for a decade and haven’t had to increase my dose so I’m clearly not addicted.
I suppose insomnia can be caused by all our drugs but I think our brains are in overdrive even if we think we’re calm and trying to live life normally.
Thanks, that is helpful. I haven't had any testing done, but I was thinking of going to/talking to the gastroenterologist who did my last (and final, she said) colonoscopy, and also saw me when I was having liquid bowels. (She said that was not a problem, not losing any nutrition.)
I was on antibiotics twice, in mid-September and October. Mild diarrhea. It didn't get bad until two things happened: I had surgery for a hernia, and I went on a new generic of exemestane.
I am aware a lot of these things are signs of aging, but I believe I have learned to tell them apart. For example, my hips and shoulder were painful and stiff on anastrozole, but that stopped with exemestane. I know cancer/cancer treatment fatigue, and that is different from old age. It is partly the sudden onset. My hair is not as plentiful as when I was young, but it is a problem with exemestane and was not before I started taking it. The exemestane is working -- my CA 27-29 is always diagnostic for me. It was 57 and I had a PET/CT that confirmed progression. After three months on exemestane, it is 32. My tumors are small and asymptomatic. I am not at the point where I would trade quality of life for progression. I guess I am saying that your first two paragraphs were very helpful. The second two are things I am well aware of and have thought through.
I can only speak to what I do for sleep. Let me roll back for a second. I was on a very mild form of birth control pills in my mid 40s and went off when I was in my early 50s. Immediately I felt constant anxiety, like I was going to get my period, but EVERY day. My gyn put me on .25 of Xanax three times a day and it REALLY helped. I moved from .25 three times as day pretty quickly, BUT to sleep at night I still take .25 and Tylenol PM (actually a generic sold at Walgreens). And I sleep like a charm. The nights I forget one or the other, I do NOT sleep as well. And I wake up anxious. Clearly my body chemistry needs this...and it works. Literally have been doing this for a decade. My dad who is now 94 was advised to do the same by his doctor, but does he? NO, and then he complains he did not sleep well.
Oh, I have ibuprophen pm. I think it knocks me out too much. I tried to ask about taking it regularly at my last appointment but couldn't get through. Will try again.
I have to agree! The one thing that has been constant through this, so far, 2 year MBC journey has been wonderful sleep. I take .25 or .5 xanax with half of a Tylenol or Advil PM at bedtime (which is pretty early typically). I am not the least bit concerned with addiction and may continue to do this even after we have a cure for this monster!
I’ve been on Exemestane since mid 2016. Thinning hair is definitely a problem. A friend looked at it and said it’s breakage. Whatever it is, I shed as much hair as the cat each day. I only comb it once a day and wash it much less often. I still have to pick up handfuls from the drain hole or from my comb, every day. That’s the lack of oestrogen apparently. I am not experiencing full on post menopausal symptoms although I was warned I probably would but sometimes I do break out in a sweat but I can cope with that as I don’t have the hot flashes to go with it. I have dry eye which is lack of oestrogen again. I have to take Dulcolax or something similar every day. Some days I have no bowel movement but the next day I’m back and forth to the bathroom with diarrhoea-like motions. It’s annoying but not too bad. It improves if I add fibre like Metamucil to my day. If I don’t take the dulcolax I’ll be constipated instead. TMI? Sorry 😣
I’m on a generic too as the brand name costs $3 extra and I think $30 is enough. I can’t say I have noticed a difference since I stopped taking the brand name product but it’s been a long while since I made the change. Sleep can be good or bad but I don’t know what causes the sleepless nights. I don’t work and I only have myself and the dog and cat to worry about. If I sleep in too late the cat comes to wake me up. She’s hungry by morning but if I only got to sleep at 4am I can’t pretend I care about her empty tummy. I take Amitriptyline each night but I don’t think it helps much with sleep. My GP says basically there’s nothing that is guaranteed to help as ‘sleeping pills’ is a misnomer.
I’m still happy to take the Exemestane as it’s keeping me stable. Up until now anyway! I don’t have bone pain although I have arthritis particularly in my hands. I don’t use opioids or CBD. Some people say the CBD oil helps them sleep better but I don’t know if it does or not. Maybe it depends upon how much you believe it does but I’m not convinced that just because it’s ‘natural’ that it’s a miracle drug.
A friend who thought her diarrhoea was down to Metformin was just diagnosed with bowel cancer. I definitely second the proposal for more tests. It’s easy enough for us to get a second cancer and that happened to my uncle. It might be nothing except an infection but it never hurts to check it out.
Thanks, good info. On the insomnia, I am going to try magnesium. Someone here sent a podcast by a doc at Stanford who recommends it, along with other things, and gives the kind and dosage. I don't do cannabis products, either.
I was on Metformin and had not frequency but liquid. Wouldn't stomach cancer show up in my tumor marker tests? Pet/CT (I don't have lobular, which is harder to see)?
Bad news on the hair loss. I mind. I got a topper/wiglet, but it is as big and itchy as a wig. I am sure mine is just falling out, not breaking.
I found an article that said that reducing dose of exemestane is just as effective. The high and moderate doses were the same, the low dose was less effective. It wasn't clear what the lower doses were; I think 3 days/week and every other day (4 a week?). I am going to ask my oncologist and reference the study, but she stopped looking at articles I bring in. She used to.
I take Magnesium to help me go to the bathroom. If you already have gastric upset, magnesium may not be the best option for you. I have been prescribed Ambien to help sleep. I only take it when I really feel sleep deprived as I want it to work when I need it to. Good luck.
Please keep in mind there are a number of different types of Magnesium. Magnesium Glycinate is the best Magnesium for sleep. I take it every night along with 20mg of melatonin. Melatonin not only helps with sleep but also inflammation.
I don’t know what markers show up for bowel cancer but with all the scans we have, at some point any additional cancer would show up. It’s just that bowel cancer is in the front of my mind because of my friend’s experience 😒
I haven’t ever considered a lower dose for Exemestane so I don’t know what a reduced dose looks like. If it is just as effective but with reduced side effects there should be no reason not to go for a dose reduction although I have never heard BestBird talking about Exemestane in particular and she did a lot of work on dose reduction. Can you post a link to the article you found?
I will have to get that to send to my oncologist. It is summarized here (ASCO news), and refers to the full article. The study was of post-menopausal women, but not Stage IV. It was being studied for prevention as compared to Tamoxifen, but the women in the study did have bc.
I know what my oncologist will say: the study sample was women with early breast cancer, not metastatic. I found a study she did herself on acupuncture helping with joint pain from Arimidex. I asked her why she never recommended that to me when I was reporting pain every visit. She said the study was only of women with Stage I or II. But it is the same medication with the same side effect. I didn't understand why she thought it wouldn't apply. She couldn't explain, just said I could try acupuncture.
Same here. The measures of effectiveness of every other day and daily examestane were not different, so...
I’m wondering if there’s an ethical dilemma involved. In the study quoted all the patients went on to have surgery so there was no harm done if the dosage was wrong. Also, they quoted compliance as taking 80% of the required doses but I’d say compliance is taking every dose within the six hour window of the planned time. I aim to take mine at midday but I nearly always take it before 12.30 but occasionally it’s later. If it’s taken more than six hours late, because you forgot it, then you skip that day’s dose.
I’m 100% reactive to oestrogen and Exemestane has worked for me. Letrazole didn’t but it has worked for a long time for others. I wonder whether the percentage makes a difference to the reaction to hormone therapy?
Apparently the flu vaccine didn’t go through the full range of trials such as double blind random tests because it was deemed unethical to withhold a treatment from a group with the flu so all participants got the vaccine. That same belief may be applied to stage four cancer too as there’s no way to redress a dosing error if three times a week, for instance, is not efficacious. And for the same reason your doctor isn’t going to agree to something that’s not been trialled for fear of getting it wrong and then facing the consequences.
If compliance truly is 80% then a reduced dose at least to 80% could be considered ’normal’ whereas every second day it would be 50% but compliance would have to be 100% (in my opinion). The dosage is 25mg so you’d be taking a half dose. You’re using the logic of dose reductions that’s much more prevalent now than it was when the original trials were conducted. I’m not dealing with unbearable side effects so I wouldn’t change my dose but you might feel the risk is worth taking to get the benefit of the drug with reduced side effects. Your oncologist probably has an opinion on that and it will be interesting to hear her response.
If BestBird was still here you could have directed the question to her but the advocacy group still exist. Maybe you could ask them for an opinion?
You are probably right: she will want a clinical trial. But this was one. I am supposed to go on ribociclib (Kisqali), too, and she was willing to reduce the dose on that. (She thought my diarrhea was from the Kisqali that I have never taken. Gives one confidence, doesn't it?)
Yeah, nah. Treatment is an ongoing experiment at a personal level anyway. When I was considering Afinitor I found the post trial modality and mortality report online so I told my oncologist that I'd read it but not being a statistician I struggled to make sense of most of the numbers. And she said, doctors do too. Made me feel better in a way but I found one woman in my age range with bone mets only and she got two years on the AA combination. And the doctor said you could definitely get two years. As it happened I didn't get two years on Afinitor due to a side effect and I stopped at ten months. The doctor thought I'd still get the two years on Exemestane alone and I've exceeded that time frame by a long way. Like I said, it's all experimental and we are the guinea pigs. I'm not complaining about that, I'm merely pointing out that whatever the impact of your desired dosage, you're the one who will pay the price.
Ultimately, it is your decision and if you're getting regular scans then the potential damage would be limited to the time between scans. All changes to dosage patterns started with an experiment. Maybe your doctor would consider this reasoning and support you. You'll never know if you don't have an open conversation with her.
Good you got two years. They say each successive treatment gives less time. I have gone through three; got two years on the first, one on the second (but it is notorious for not working for long; I exceeded the minimum) and one year on the third. Exestane + Kisqali is the last of the AI + CDK4/6 before chemo for me (Xeloda next). The exemestane alone is working so far! In three months, the tumor marker that was high (progression confirmed by a scan) dropped by almost half and is normal. I am hopeful that I will get two years on, which I think is the median.
I can read stats. There are two things about the stats reported, however. It doesn't matter what the population statistics are; it is what happens to you. For example, 5% of people on Xgeva get osteonecrosis of the jaw. I did. It doesn't matter that 95% don't. The other is that they usually report median PFS or OS. Median (as opposed to mean or mode) means that half the people in the trial had progression, or half died. So....
As for my oncologist, she is hard to talk to. The nurse practitioners listen and will look stuff up. She just does "standard of care" and will not consider anything else or new studies. She is supposed to be very good, however, because her patients do well. But the only one I know personally, because she lived in my building, is dead. Our oncologist missed progression. This woman saw another oncologist in the practice one day and he immediately picked it up. Treatments didn't work for her, however, so it is not our doctor's fault that she didn't make it. It is "just" the diagnosis she screwed up.
So I will try to tell her about the dose reduction study, but she will ignore it. I hope, at least, she will explain beyond "not standard of care." That is unlikely.
Many times Oncs will not recommend anything unless there has been a clinical trial (not sure if this is for insurance purposes and afraid of getting sued). I get so frustrated at times with I hear that. It almost sounds like if they weren't taught something or have had a clinical trail it can't be true. I have read research that talks about how acupuncture and/or dry needing can help a lot.
I will bring up the testing. Or go to gastroenterologist on my own.
I think I am a realist. I just have thought this through, and have observed and analyzed what is age and what is side effect. Kind of important to know. I didn't think you were minimizing, just "schooling" me. I am a social scientist so have some ability to read the research literature, at least can tell valid research from invalid, although the biochemistry is sometimes beyond me.
You had to stop magnesium? Not exemestane, right? Yeah, I am worried about that. There are alternatives if one has gi issues, but I prefer a non-prescription approach. Constipation would be welcome. Maybe it would balance out.
Oh, no. Too bad. Exemestane is supposed to be one of the easy ones in terms of side effects, but we all differ. Thanks for telling me. My oncologist insists it is not the exemestane that is doing a number on my digestive tract. Obviously, it can go there.
mine said it wasn’t the exemestane, but the problem stopped when I stopped the exemestane. He also said it didn’t cause hair loss, but it did. We’re all different and they should listen better.
Also they should read better. It clearly says hair thinning is one of the side effects (and diarrhea and gastric upset is a side effect of "unknown frequency").
I changed oncologist because I wasn’t being heard, at all. I’m 75 so I’m not looking for 20 years. I just don’t want to die from treatment, or have no peace for whatever I have left.
Curious if you are drinking pomegranate juice? I know this might seem funny but I have read on other forums from people suffering from AI side effects that introducing an enzyme called Akkermansia can help. In a nut shell Akkermansia is produced naturally in the gut from drinking pomegranate juice (about 8oz a day). I started taking Akkermansia (the supplement but it is expensive) about 7-8 months ago. I have not had hot flashes or other side effects in a long time (also taking exemestane) but thought my body was now used to it. I have no research to back this up only a theory. I recently read that 8oz daily of pomegranate juice is the best way to produce Akkermansia in the gut. Just a thought but have no idea if it would help.
I swear I responded to this a couple of hours ago but I don't see my response. I will definitely try it -- drinking it; the oncology nutritionist advises against supplements. It wasn't well advertised, but in the Ibrance insert it said to avoid pomegranate, so I will check it out first, but I definitely prefer adjusting gut biome, enzymes, before turning t another medication.
I didn't see it with Verzenio, and you had to look hard to find it with Ibrance. I think it was in the package insert and nowhere else. I decided to err on the side of caution.
Just read article in National Library of Medicine and PubMed -- which do not review or endorse articles -- that makes the case that pomegranates, and pom juice and oil have anti-tumorigenic, anti-proliferative and anti-inflammatory properties. They examine the mechanisms in cells. No studies in humans and no info on dosage, but it sounds possible, so why not?
I read a lot of research on Pub Med. If the language gets into to much science I copy and paste in into Chat GPT and ask to simplify this paragraph. Chat GPT does a good job dumbing things down for me.
I am starting Kisqali soon. It says no pomegranate juice or grapefruit juice. Both increase the level of Kisqali in the drug. I saw the same thing when I was on Ibrance.
All over health unlocked, in other forums than this one, people are recommending pomegranate. It may just be Kisqali, or the targeted meds, but be careful and check.
Oh, Tammy, I can sooo relate to what you are going thru! I sure hope you find the answers you need to be comfortable, active and feeeling more like yourself! The whole "aging" business has added a layer to my experience. Memory, thinning hair, losss of strength, etc etc etc! Is it aging. cancer, side effects. And just who is most able to soer it all out! My first onc was so good at all that! She retired several years ago, in her 70's, too, and I never had a chance to say good-bye! I miss her alot, and her wisdom! I qas on Exemestane, 3rd line, for about five years. My hair thinned more on it than on the other meds I'd been on. (It's helped my appearance alot to give up long hair and keep it short, for me. a "pixie" cut). I don't think the GI issues I developed were related to Exemestane, but who knows! 14 months ago was the worst month of my life! Projectile vomiting led to ER, discovering cancer cells in my abdomen, bowel blockage. Minimally invasive surgery for that removed the valve between stomach and small bowel. I lost muscles, energy, confidence in medical system (profits over patient care). It took a long time for that to heal. I did lose alot of weight, which I don't think was a "bad thing." I have no appetite. I almost wish I had diarrhea! My bowels aren't that loose, but they don't give me accurate senses about what's going on. Sometimes I think I've passed stool, but no such luck. Sometimes I've passed some without knowing it until I lower my pant. GI doc only makes suggestions about what to eat.... I sure hopr you don"t develop a bowel obstruction! Do call your dr. if you are eating normally but go much longer than usual with no bowel movement. Sending, love and hope...................
The comment about not sensing bowel movement is me. I stopped exemestane in October and still hair still isn't growing back. Still can't taste food. Barely eating. Brain fog is improving.
I'm so sorry that you have such harsh side effects! This cancer is so hard to livewith. I hope you feel bettr soon. And thank you for mentioning not sensing bowel movements! (a much better way to discribe it than I'd comemup with. And I didn't knowmit could be related to the exemestane!
Since you checked my profile, I checked yours. It has no info except that you are awesome4, etc. Nothing about when you were diagnosed, genetic profile of your cancer, where it is, treatments...or your age. Feels...unequal.
Gee. We are all so different. I got a good run on exemestane (aromasin) and zometa IV. 7 years. Maybe increase in fatigue but I was able to get out and do things. Ibrance and Kisqali have not been my drugs. Ibrance ultra fatigue, practically brain dead. Kisqali lung inflammation. Waiting to see if lung inflammation clears up after predinosone treatment. Oncologist said that I will not go back on Kisqali. I have been off Kisqali since Oct 30. I will have chest CTA around end of January to monitor lung inflammation. Petscan Jan 12 to see if I am stable. If I am stable I will stay off cancer drugs for a while and just do Faslodex (fulvestrant) injections. Fingers cross that I am stable and can take a break from cancer drugs.
We certainly are! I am having some fatigue on exemestane, but much less than Verzenio. I am supposed to start Kisqali next week. ugh.
But I fulvestrant great. Really cleared up the cancer and no side effects. I think the SERDs are better than AIs, more effective and fewer side effects. -- But I also had a relatively easy time on Ibrance.
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Fulvestrant side effects and updates
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