Hi all, I'm wondering has anyone experienced sleep problems on Xtandi? My Father takes it at 10am, he does have fatigue during the day which is increasing and is experiencing some weakness in his right leg. But awake almost every hour at night. I'm wondering if he took it at night would it make a difference.
(currently started Peace 111 TRIAL xtandi - Xofigo - zometa, decapeptyl every 3 months. Diagnosed Aug 2020, widespread mets pelvis, shoulder, spine...) PSA 70)
Edit to add: Dad takes melatonin 2x3mg and Stillnoct 10mg at night, also recently CBD gummies
Thanks in advance for your input 😊
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Nickhmcg
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To test whether Extandi is causing sleep problem...is to swith the time he takes Extandi. If he takes Extandi in morning and his sleep gets better then we can assume that the problem was caused by Extandi.Also, Melatonin can help ..it promotes better sleep and is reportedly has some anti cancer effect.
Thansk so much for the reply, I should have noted my Dad also takes Stilnoct 10mg and 2 x melatonin 3mg at night. They don't seem to work or rather work less since xtandi started 7 weeks ago
Thank u Magnus, is it directly before bedtime? I just think it must be a factor since he is taking the extra sleep aids but might aswell be taking smarties 🙄
Sleep is important. And sometimes short-term (2 weeks) use of sleeping pills can re-establish the sleep cycle. Zolpidem (stilnoct) helps him get to sleep but doesn't help one stay asleep. I'm not sure what is available there, but Ambien CR (continuous release) may be a better choice to help him stay asleep. Eszopiclone may also be available there to help him stay asleep.
There is cross tolerance with alcohol, so he should avoid using alcohol and sleeping pills. I've also found that alcohol may help one get asleep but there is a rebound - it wakes you up afterward.
Xtandi is a GABAA agonist, which accounts for the fatigue it causes. If he takes it before bed, he may be able to sleep at night.
I struggle big time with sleep. Have as long as Ive been the drugs. Also crazy dreams, all the time. And Im on Ambien every night 10mg. Ive tried everything and its very frustrating.
I use to seldom remember any dreams but since going on enzalutimide I have vivid dreams; not nightmares, just dreams that I remember upon waking. And they seem to come all night long since I can wake to pee and remember the dream that was interrupted. Its been almost a year on the med and the dreams seem to be less intense lately.
I take 20 mgs melatonin and 4.5 naltrexone ( from a compounding pharmacy) prior to bed. Vivid dreams. I still wake 7 times to pee but I go back into rem easily only to jump back up every 90 minutes. Sleep is a common issue for us. This lack of solid sleep grinds one down . Exercise helps everything. ✌️
I like the gummies. A high thc oil dose even better IMO .
Hi. Also on Xtandi and also had a sleep problem. I take 1 x 2mg Melatonin, slow release and the Xtandi last thing at night and this has helped a bit. I tend to wake later as well.
I’ve been taking Xtandi for about 16 months now and initially had the same problem when taking it in the morning (day was a complete mess - very fatigued in late afternoon / into the evening). After discussing this with members of the Australian advanced PCSG I moved to taking the medication around 8 - 8.30pm each night.
My fatigue is still present during the day but NOWHERE near the same levels. I find that I get a pretty good nights sleep and wake up reasonably well I.e. still a bit lethargic / dopey but better than what I previously was 😀😀.
I do take a drop of cannabis oil around 8.30 pm also to assist with some aches and pains I suffer but no sleeping medication as such.
Try taking it in the evening for a few weeks to compare morning v evenings. I’d be interested to hear your results.
Take them before bed. Problem solved. Enzalutamide stays in the system for a week (apparently) so it really doesn't matter what time of day you take them. My only sleep problem is that as soon as I take them I need ten hours sleep so I take mine before bed.
Take Xtandi in the evening, I usually take it around 8:00 pm by 10:30 I’m ready to hit the rack and sleep really well. Ive been taking it for over 6 years and have always taken it at night, that was the original recommendation from my MO.
I was undetectable for about 6 years despite a Stage 4 G9 dx. Just recently PSA has become detectable again although at very low levels using an ultra sensitive test. Too low for scans to be any value at this time. I start Provenge treatment on Monday. I credit God and Snuffy Myers for my long run. His philosophy of hit it hard and hit it early seems to have paid off. I also have a great group of local MO’s guiding me along the way.
Just read your Bio. Pretty incredible. We had a very similar dx except I was 10 years younger. We too believe God has had an incredible impact in our lives. Im going to read up about Provenge as that could be a next treatment for me as my onc tells me its only a matter of time when I fail Xtandi/Lupron. Im 54 months in now.
I've been on Xtandi since 2015. I'm in a trial at nih that's coming to an end. How do u guys pay for Xtandi, if you're on medicare? I've been .04 since on Xtandi and lupron/ eligard and would like to continue ride as long as it lasts. I also get zometa.
Gabapentin, low-dose, has done wonders for my sleep. It was prescribed for neuropathy, but since taking it I get a solid 7 hrs of sleep nightly and wake up alert. Sometimes I even wait an hour before first cup of coffee. I seldom even get up for bathroom. I am 73 and have been taking Xtandi for about 3 years. Unlike ambien Gabapentin supports low wave sleep according to a number of studies. Just google “gabapentin and sleep” to learn more.
300 mg. Doc said she prescribed up to 2500. Another doc had recommended it two years ago but hardheaded as I am I didn’t want to add anything to my drug cocktail. I do not drink alcohol at all but I do self-precribe potent weed with doc’s knowledge. I also take 3 mg of melatonin nightly but I had never considered it very effective. I have bedtime discipline for first time ever. Always asleep by 11:00 pm. Never take or need a daytime nap, which I did routinely before adding Gaby. Best wishes.
I was advised to take my extandi at night before bed. I have been doing so for the last 3 years with no sleep issues. He should give it a try. it may work.
I was on Xtandi with Zoladex and couldn’t sleep a wink. Not kidding (pun). I changed from evening to morning and it made no difference. MO stopped the Extandi when I showed him shredding armpits but they still shred. Anyways short story is I am in a new phase 2 study where I sleep all the time.
Same diagnosis as your dad’s.
I want to stop Zoladex but it depends on the study protocol.
Four years of Xtandi this month. Switched from 8pm to bedtime because I was falling asleep during movies. I also take Gabapentin 3 times a day with one at bedtime. A whimper to Fastingguy re Gabapentin and sleep. I have a podcast on 15 minute timer and sleep except for the couple of pee times every night.
My Dad was on Xtandi for one year, off since April. Thank goodness. He only took his one pill at bedtime. And yes sleepy in the am. He is almost 89. Taking a Xtandi break, improved cognition. The detox was the whole month of June - all 4 lower extremities were warm with rash, thought it was Cellulitis rash. Detoxing. Originally, the Oncologist wanted to put Dad on 4 a day. This sight gave me the insights to advocate for Dad, so we began with one pill. No detection in his blood - 0.03. Back story: Dad had gland removed at 63 years of age. Radiation, then no count for 10 years. Then his PSA blood work showed the Cancer was in his blood. He's been on and off 6 different therapies over 15 years. No driving, support in home now. Hang in and know you're doing the best you can do as his Daughter.
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