Greetings all,
I read this site every day and appreciate your contributions. My husband is on Eligard once every 3m months, Xgeva monthly, Erleada nightly and Megace x 2 a day. One of his side effects is frequent urination during the night. He is up at least five times per night and neither of us is getting any sleep. What's a safe option?
Thank you!
My husband had success with Myrbetriq on his second attempt. The urologist urged him to stick with it at least 40 days and it started working on about the 38 day!
Now after 3 years it is not working as well as before. He recently has had two UTIs in a row and 10 days with a Foley catheter so we are hopeful things will improve back to before.
His urologist gave him 30 days of Gemtesa to try next. Urologist felt that could be great improvement for him if it works.
Has he tried an alpha blocker like prazosin, tamsulosin, or silodosin?
He has not tried anything. We were thinking about melatonin and/or Ambien? We see his MO in two weeks. Thanks!
That will just make him sleepy when he has to get up to pee. The goal is to take away the need to get up to pee in the first place.
Thank you! Makes sense!
I totally agree with TA! My choice of a sleep aid is .5 mg of Clonazepam (not really a sleep med); however, it does relax and puts me to sleep quickly without any morning drowsiness. But the difference is that I'm not awakened by the urge to pee which "Grumpy" needs to address first.
I agree. We tried Trazadone, Melatonin and CBD gummies. The need to pee is still there, and it makes it harder for me to get him to the bathroom.
I’ve been urinating a lot ( 8-10 times ) at night for a while, ( 30 months ) , my adt screwed mobility is such that I have a LOT of difficulty getting out of my wonderfully comfy waterbed …. at any time.
I keep a few of those widemouth Florida orange juice plastic jugs beside the bed all the time ( and beside my couch as well ) . When I have to “ go “ I just roll over and use a jug ( or if on the other side , just reach down and get one ). After a short while you can use them without actually waking up at all. Its easy, simple and no new drugs to agonize over drug interactions.
A simple solution that works VERY well for me.
❤️❤️❤️
Ya' know, I made that suggestion. Didn't want to go there, but thank you!
Here, too! I purchased plastic urinals ... SO easy to use, I thought! He just couldn't make it work for him. I think it was in his head, but, if it doesn't work, it doesn't work.
you need to be more demanding. i never found anything that would stop the pee urgency (some times just an ounce or two (I now have a chronic prostatitis that will probably never go away which makes it worse)) hot flash syndrome. I am resigned to it. Last night I woke up just three times and wish I knew what i did right.
I keep a urinal near the bed which is essential for me because the bathroom is down stairs and it would be a half hour before I fell asleep again especially if I turned the lights on to avoid the clutter from my husband and dogs.
Suggest to your husband that he would be doing it for you so your sleep would not be affected, make him feel guilty.
Also keep an old towel nearby in case of a spill.
Kaliber.
Caution - careful not to use the wrong orange juice bottle when making breakfast. Lol 😝
OMG …..I laughed so hard when I read this i almost wet myself. Yayahahahaya. Good one 😁
Ew
I have found trazodone to be helpful on occasion. I believe it is contraindicated for those with heart issues, and possibly other things. A low dose of 50 mg does nothing for me, but 75-100 can get me drowsy in under 30 min and help me stay asleep. 150 mg is a knock-out for me, but I will feel groggy in the am.
My doc some years ago prescribed me 150s and they were scored in the middle on one side and into thirds on the other, so I could easily break them into 50s and 75s and adjust dose as desired.
While some find melatonin helpful (but nobody I know, including me) it is not actually a sleep inducer, as trazodone and other drugs. Proper dosing for the individual can be hard to find, but start VERY low if you try it. I was one of the unfortunate ones who experienced the paradoxical effect of taking melatonin and sleeping soundly until 2-3 am and then being WIDE awake for an hour or more, except when I tried megadoses (which may or may not be advisable). Your mileage may vary.
Don't know a thing about Ambien other than someone once said "don't." So I didn't. I'd be curious about others' results with it, as I am experiencing the 4x peeing and 4x hot flash wakeups that seem to be worse in my third week of COVID recovery, so need to renew a scrip or get a new one. Who knows, Ambien or trazadone, for better long term health?
Aside: I have tried three of those pee drugs to no avail … might have slowed it down some but nothing to actually fix the situation. My oncologist is happy if I can find a hardware solution rather than further complicate my drug regimen too yayahahaha.
I know you love your honey, but maybe you should sleep in a different room. One of you needs to get rest.(Preferably both of you) If you are a light sleeper then he will keep waking you up when he gets up to use the bathroom. Until the problem is solved cuddle or whatever for 30 minutes then retreat to a bed elsewhere. If you don't get sleep you will get sick. Sending you both hugs, love and get well wishes.
I take Tamsulosin and melatonin. The Tamsulosin helps reduce the need to urinate so I don’t wake up as often and melatonin helps with actual sleep. Depending on how well I monitor my fluid intake prior to bedtime I generally wake up once or twice during the night. Once if I’ve monitored well, twice if I haven’t.
Perfect, thank you!
If he is not taking diuretics, has edema in the legs which is reabsorbed during the night, or he is drinking a lot of fluids and alcohol at night, most probable the nocturia is caused by a difficulty to empty the bladder during urination.
A trial of alpha blockers such as Tamsulosin. cardura etc , which dilate the urethra leading to a better emptying of the bladder may be indicated.
He doesn't have any of those conditions, but thank you!
Then discuss having an alpha blocker to try to improve the urine flow and the emptying of the bladder. He does have nocturia, since he is urinating more than 1 time during the night.
My RO prescribed Motrin ( ibuprophin ) relaxes muscles and cut my night trips in half.I also take over the counter sleeping pills that work very well with no hang over or side effects.
Thank you! Great info as always!
There are two things that worked for me which I tried separately. I was up around 6 times at one point. It's extremely frustrating and exhausting, isn't it?One was melatonin: It reduced my need to go to about once or twice a night. The issue I had with melatonin, however, was it sometimes made me feel groggy the next day. But it was much better than being up all night!
The other was an increase in D3. This was by far the best results for me. Now it's not normal for me to get up at anytime during the night. I sleep all the way through.
I take 10,000 IUs daily. It took about 2/3 weeks to see changes. I did 15,000IUs for a while initially, and gradually reduced it to sort of bottom out the intake with the same results. This was around the 10,000. It's hard to tell an exact dose that will work because it's all to do with the concentration in your blood. It varies quite a lot for different people. So 10K might work for me, but you could require more or even less. Blood concentration is the only accurate way to measure it. You could also consider a loading dosage initially if your bloodwork shows around the 20ng mark. Most people are deficient and so will probably need this to get the concentration up in their blood. That should be a conversation with your medical team if you wish to try it out.
Hope that helps.
Try some cannabis oil.... works for a lot of people. Good luck
My personal experience is approx every 2 to 2.5 hours I get up to pee. Full bladder & no trouble doing so. On monthly Lupron. Few hot flushes at night.That said if I stop drinking liquids three hours before bed and elevate my legs in a recliner I can go once at five to six hours. But I need to take a stool softener those nights or am constipated the next day big time.
I was getting up 10 times per night. I am on Eligard, and was taking Flomax as well. What it came down to.... I had sleep apnea. I was waking up due to my breathing but I thought it was from my bladder. Now I only go 2 times a night if that. Dr. stated, that if you keep waking up, you brain never switches the kidneys into rest mode. Just saying this could be another option to consider.
I am about to take a sleep study to see if this is the root of my problem…. My MO gave me a referral to a Sleep Medicine doctor to try and help me sleep through the night. Between a severely bad back, and the nocturia, I wake up 3-5 times a night.
FloMax does help, but if I take it daily I get dehydrated and get a mix of vertigo and some irregular / fast heart beats…
Thank you, good luck on your sleep study!
There is a medication called myterbrig discussed in another post. Bills doc said absolutely no caffeine. Can second dose of erlada be earlier in day or all taken at same time?
Thanks! Erleada is in the evening because we did not know what effect it might have so opted for night. Thank you for your reply!
He could try not drinking coffee in particular, no caffeine if that doesn't work. Lemon/lime juice early in the day and sparse liquid after lunch. Those have generally worked for me, but I'm not on anything but Lupron and Xgeva.
Thank you for your reply, of course that would mean cutting out a beer in the afternoon and we have tried to keep things as "normal" as possible for him.
I went through all the drugs for sleep mentioned here. I was awakened by the hot flashes....and went to pee while awake. The urinary drugs were not what would help....so tried the sleep drugs. The frustration level kept me up....so did a course of CBT Sleep Therapy...which helped. In your case if the need to go is the stimulus....then investigate those drugs. Try the sleep drugs if you can't get back to sleep. Be VERY careful with Ambien. CBT is a help for a non-drug anxiety due to lack of sleep approach. Good luck.
I had been wanting to ask the same question as my hubby isn’t getting the sleep he needs to fight this beast. Luckily I’m a sound sleeper and it doesn’t wake me up but we also have a thick foam topper so their isn’t much bed movement. He’s worried he’ll pee bed if he takes something too strong. Flomax didn’t help either so discontinued. Melatonin is taken but sleep is disturbed by nightlight in bathroom. He stops drinking hours before bedtime but it seems like it’s been happening for the last few years. Almost like he’s conditioned to pee more once he lays down. Dr said they could perform a procedure to take away some of the Prostate tissue that’s putting pressure on the uretha but hubby felt that would piss off the cancer to spread more😞
My husband found Tamsulosin (Flomax) helped quite a bit with frequent urination. He did not seem to have any side effects from that. However, after reading a small study that showed Prazosin, which is used for high blood pressure, also showed to relieve the urination issue and reduce BCR in men with PCa, he switched to that. (He did have to make his case to convince the doctor to make the switch though bc his BP is on the high side but not crazy.) It's working for him. He notices when he doesn't take it.
How long has he been on Prazosin?
About 2 years. Original PSA was 455, T3b, six years ago in September. Treated with RT/HT. PSA was 0.21 around 3 months ago.
I have been taking Prazosin for about 1 month based on a similar study, maybe even the same one you saw.Some have said the effect may wear off over time so I am not sure how long I will be able to maintain present dose.
Would like to keep in touch and follow his progress.
especially interested to see if has BCR.
is he now castrate sensitive?
Interesting you would say that. He just mentioned the other day that he might review his dosage with the doc, but I can't remember why. (Clearly, I was only half-listening.) He was on full blockade of Casodex and Lupron for the first 2 years and was still responding when he went off. PSA stayed undetectable for the next 6 mos, then crept up a bit and has been holding steady since. So, I assume he's still sensitive to ADT.
what is his PSA history since finishing Lupron?
This is study that I saw, I especially like the chart in the middle of study
nature.com/articles/s41598-...
This one is better than the one he used a couple of years ago because it has a comparison of tamsulosin and prazosin. The one he used just had control and prazosin groups.
His PSA was <0.02 until 6 months after the last dose period of Lupron. Jan, 2019, it was 0.02 and has gone up in small increments with last one in March at 0.21. Keep in mind that he dies still have a prostate so some PSA will continue to be produced. Doctor said they'll wait to get excited until it reaches 1.0. But I have read that 2 points above nadir is standard point of concern.
I use a half tablet of Kirkland Sleep Aid. Amazon should stock it.
Sweet dreams
😴
I'm not trying to be a smart ass but separate bedrooms and a urine bottle next to the bed is what I do. Ceiling and hand held fans for the hot flashes.
Rather than getting a sleep aid, have you considered a condom catheter? He has his choice of a leg bag or a full-size bag. This has been a game-changer for me and my husband. In addition to stage 4 metastatic prostate cancer, he also has bladder cancer. Between the two, he was also needing to pee 5-6 times each night. Your urologist can help fit your husband with the perfect size condoms ... be sure to stay on top of it and try a few sized to get the one that is ideal. With practice, it's really easy to put on and take off.
My husband doesn't want to wear it during the day, only at night, but it's designed for 24-hour wear.
Hope this helps both of you get your ZZZZ's!
Thank you! Glad you have a solution!
Is this something you'll both consider?
Not at this time.
No surgery, but thanks!
Sleep while taking Xtandi and Adt
HELP with getting sleep!
Sleep in heavenly peace 
Sleep on Lupron & Chemo with Nyquil
The positive effect of sleep on the immune system
