Elecestrant & sleep: Hi all, I've been... - SHARE Metastatic ...

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Elecestrant & sleep

tanz2019 profile image
15 Replies

Hi all,

I've been on Elecestrant for 6 months now and after the first month I noticed that I couldn't sleep. I've been taking 10 mg of Melatonin and that seemed to work for a while but now I am back to waking up every 2 hours. Is anyone else having this experience and if so did you find something that helped?

With respect to stomach issues I notice that I can go for a couple of weeks with no problems and then all of a sudden I can't keep my dinner down. I take the meds with dinner and am really cautious about anything I eat after dinner that might cause stomach upset.

The good news is that my tumor markers went down by 50% at my last bloodwork. I get the results of the latest scans tomorrow.😬

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tanz2019
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15 Replies
Hazelgreen profile image
Hazelgreen

It was good to read your good news! Fingers crossed for your positive scans tomorrow!

Sharon0122 profile image
Sharon0122

Congratulations on your tumor markers! That’s great news. I’m on anatrozle and Ibrance. I have insomnia. I’d be grateful if I just woke up every two hours. I get two hours of sleep at night at the most. Best wishes to you. Hugs

love2golfwell profile image
love2golfwell

So happy that your results on good on this medication but sorry about the insomnia. I have been on Letrozole and Ibrance for over 3 years and have bad insomnia. I started taking a children's size gummy of melatonin which has helped but I still wake up often during the night and am not always able to get back to a good sleep. Have you tried any essential oils in a diffuser? That might help. There is a Sleep blend from a company called Revive that I have found to help some or you could look up best essential oils for sleep. Otherwise, I have heard taking magnesium can help, but not sure you would be able to take it with your meds. Best wishes on your scan results and hope you find something to help you sleep.

ba5083 profile image
ba5083

Hopefully your scans back up your bloodwork results. I have ILC ER/PR+ HER2- and on Verzenio 50mg and exemestane. Not sure if you might be taking melatonin for sleep or the anti-inflammatory properties that some studies have shown to help with cancer. If for the anti-inflammatory properties for cancer my Onc has said to take a minimum of 20mg per night. I take 2 - 10mg tablets that are time released. I also take magnesium glycinate at night. If you take magnesium and you want to utilize it for sleep make sure and get glycinate as there are about 8-10 different types of magnesium. From my understanding there could be a lot of reasons for waking and not being able to get back to sleep. It could be stress regarding your scans, foods, time of day when you eat and take meds etc. Praying for good scans!

Totheriver profile image
Totheriver

Hope your results will be good💕

CTGirl1962 profile image
CTGirl1962

I use medical marijuana for sleep. The gummies. They are the only things that help.

🙏🏻🙏🏻🙏🏻

13plus profile image
13plus in reply to CTGirl1962

What mix exactly? I don't need anything for sleeping right now but sometimes I go through sleepless periods

CTGirl1962 profile image
CTGirl1962 in reply to 13plus

It’s sativa I believe. I really don’t know!! LOL

I just know they work!! 😁

13plus profile image
13plus in reply to CTGirl1962

Looks like the opposite actually. Indica?

Text
CTGirl1962 profile image
CTGirl1962 in reply to 13plus

It may be!! I’m not home so I can’t check my bottle. I know I’ve tried both. Possibly I misspoke.

TammyCross profile image
TammyCross

I have the same intermittent problems. Insomnia some nights. Diarrhea -- well, more often, but it can surprise me. I have to be careful about what I eat. I am on exemestane only, until Kisqali comes.

I tried magnesium glycinate, which is supposed to increase production of melatonin by our own bodies. Didn't work for me. Tried a melatonin that is supposed to help if one wakes up during the night and can't go back to sleep. Didn't work. The things that work for me are a LOT of exercise, wearing my body out, and, I discovered on New Year's, a sip of hard liquor, straight. Out and don't wake up.

Insomnia is also associated with aging.

mariootsi profile image
mariootsi

Hoping for good scan results!

monkeygirl62 profile image
monkeygirl62

Great 😃 news about your tumor markers! Have your scans come back yet? I too had trouble sleeping just from the worry about having stage 4 metastatic breast cancer alone. Also I was crying a lot and feeling depressed. So I am on an anti-depressant that helps me sleep and no waking up every two hours like I was. It's Mirtazapine 7.5 mg and it worked the first night I used it. It's intended to work for sleep issues too. For me it was like a small miracle and I haven't had any side effects from it it and for me it doesn't contradict all the medications I am on. You could ask your doctor about it.

tanz2019 profile image
tanz2019

Hi all - thanks for your replies and suggestions. I should have clarified that I was on Ibrance and Faslodex for 4 years and when we switched to the Elecestrant that's when I had the real sleep issues. My doctor suggested taking 2 Benadryl but that didn't help which is odd because in the past 1 Benadryl would knock me out. That's when I switched to the Melatonin.

I got mixed results on my scans...the CT scan didn't show anything new. The bone scan shows progression where my leg bones go into the hip joint area. My doctor is trying to correlate that with the significant decrease in the tumor markers. One of the things she surfaced is that I have been on XGeva as a bone strengthener for 4 years and apparently one of the side effects is that it can cause fractures in the long bones. I will have to have some x-rays done and then see an orthopedic specialist to get their input. More data is needed to figure out whether this is a result of the XGeva or whether it is further disease progression. I don't get the sense that there is an easy to test for this. Anyone else run into this situation?

Have a great weekend everyone and thanks for being there 😀

Healthplus1 profile image
Healthplus1

Yes me too. I have found that if I have a bannana or really anything when I wake (before 10:00am) and then take the medication within 30 minutes and nothing for at least an hour after; then I can sleep at night. But you must take the medication early in day.

Good luck. I t is trial by error to find what works for you.

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