Hey Gents,
In January 2019 after my PC was defined as nmCRPC I started a regimen of Erleada/Lupron/Xgeva.
In October 2019, I switched out the Erleada/apalutamide with Nubeqa/darolutamide. With Nubeqa I noticed I had much more frequency and I was urinating in bed. I switched back to Erleada and I am still urinating in the bed. Anyone else experience this? I am contacting my MO.
Thanks for any contributions.
Yep that was my thought! Thanks.
Hi MJCA, I’ve been on on Darolutamide for close to two months and haven’t had any incontinence issues at this point.
Glad you have no issues!
Do you take any sedatives to sleep? One causes me problem sometimes. It seems to put you in a deep sleep and relax the muscles.
Maybe a cystoscopy will reveal the source of the problem?
Well not being a part of the medical community I had no idea what that was. After referring to WebMD for clarification, that does not sound fun. I am so tired of things being inserted up my ass or inside my penis. But it is troubling.
Not fun but not the worst thing you will experience, either. A while back I put myself on low dose naltrexone. After two episodes of pissing the bed I discontinued the medicine. Even at a 1:50 dose the sedation was enough to out me in deep enough sleep that my sphincter let go.
In the grand scheme of things a cystoscopy is no big deal. I've had a couple, many years apart. The first one prior to TURP surgery.
I found that I was getting up at night every 1-2 hours depending on the drugs I was taking. My bladder has become sensitive . Most drugs, hot sauce, carbonated drinks (carbolic acid), juices, tea, etc. set me off.
So... sleep on a water proof pad, use some sort of absorbing material in undies to give you enough time to rocket out of bed before the bed gets wet, no water after 6 (unless uncomfortably dehydrated), use plastic pants for travel.
Incidentally, NSAIDS before bed actually double the time before one needs to get up. But they have their own negative side effects. A baby aspirin also works, one before bed. Run it by your Dr.
Regards,
Craig
Thanks for the suggestions. I am traveling for 3 weeks next month - hence my concern. Unfortunately I can’t take NSAIDS.
Just thinking here but I wonder if it is a unrelated problem. I am that person that I think everything new is related to my cancer and I do have a problem keeping dry sheets as well. I hear you when you say you are getting tired of having things stuck in places but it might be worth it. Keep fighting we are here with you.
Thanks PK. It’s quite disconcerting since I am only 59 ☹️
I know brother I am 58, found it 4 years ago. Had the prostate removed but it was a grade 5 so 49 radiation treatments, 4 surgeries and 10 chemo treatments later it's still growing. Take care let me know how you are. By the way where you from I'm from Indiana USA.
Try imipramine. It might help.
I wear Depends underwear all the time now. I also put on a pair of underwear over them to hold them in place and not slip down. I have had several cystoscopy tests into my penis. I was put into a twilight sleep and they found certain things about my urethra. My cancer is in remission, but I still have urinary incontinence. For a while I took a drug called Myrbetric that helps me get to the bathroom, but you could talk with your doctor about that drug. I also did Kegel exercises to strengthen the muscles to hold in the urine. I did them daily for about 3 months. They helped a lot. Also, I found that with this disease things change about every 6 months and I just do the best I can to make it work.
Thanks Jim. I have been a frequent flyer now for 14 years. I experienced incontinence right after radiation 13 years ago, nothing since.
I also have kidney disease and I am told to drink 1/2 gallon of liquid daily.
I also have kidney disease and incontinence. Wish I could give you some great advice. I just try to be very aware of urge to urinate. I wear a pad when I go outside of the house
I tried a drug Myrbetric that helps you from peeing. I used only 25 mg (not 50 mg) because I have kidney disease stage 5. The drug did work and helped the problem about 50%, but after 6 months I had urinary stasis (couldn't pee) and quit the drug.
See a good reliable urologist or drink liquid cement instead......
I've been there, done that and wear the tee shirt and depends to prove it....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 12/07/2019 1:23 PM EST -Day of Infamy
well...I went almost 5 years into my "journey" with no real issue with peeing except having to go a little more often...sometimes 3 or 4 times during the night. Then I started having "stress" incontinence...I had cystoscopy and the doctor told me to start doing Kugels...then a month later..I ended up NOT being able to pee...in the emergency room...and catheterized for 6 weeks....after that another issue less than a week later...another catherization...but then ...I suddenly passed some tissue and could pee. However, NOW...the "stress" incontinence has gotten more often...until it's a little more than stress....I now just wear a depends all day and all night...just to be safe. I've started back the Kugels and I am hoping for a miracle. The "diaper" shit is a drag....even at 62...LOL. But I'll tell you ...it's MUCH better to leak than to NOT be able to pee and have a Foley catheter in you....it's the worse thing imaginable.
big hugs,
John
Get a Physical Therapy referral for "Incontinence, evaluate and treat". Ask the PT office if they use a biofeedback technique where they apply electrodes to your inner thighs. (no nothing is going to shock you). With the electrodes and a computer the PT can help you train how to engage your pelvic floor muscles.
Kegles sounds easy but to do it right is what this PT method helps you learn. It is very subtle.
5-6 sessions should do it. Expect to go back in 6 months for a few sessions as a refresher.
Google a list for urgency trigger foods and beverages.
Cut them out for 2 weeks and then start adding them back slowly. See which one are the worst and add them last.
Also, learn to hydrate steadily over the day so that you pee 5-6 times over 24 hours. That alone will help because it keeps the urine from getting concentrated (yellow), as that is a big trigger too.
Been there, done that; I am a much happier man and get better sleep too.
Try avoiding any and all acidic or spicy foodstuff or drinks. Read the labels.
The list is long.
Start here
en.wikipedia.org/wiki/Overa...
And here
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