Hi, Does anyone have any thoughts here? Diagnosed metastatic pc in April 2018, psa 255, one core Gleason 4+5, other cores 4+3 or 3+4. Bone scan negative. CT scan includes lymph involvement. Underwent cyberknife followed by five-weeks of external/definitive radiotherapy to all visible disease in Oct 2018. Firmagon from 4/18 until switching to Lupron, Nov 2018. Added Zytiga in Feb 2019. PSA undetectable in Feb 2019, and every test since. The question is: I've gone from getting up once or twice a night to urinate, to recently getting up 2-4 times nightly to urinate. I take Tamsulosin nightly, avoid beverages late, etc. Are there any thoughts about why the sudden increase in frequency? I see my oncologist in Oct but wanted to learn from the wealth of knowledge of the community. Thanks to all the remarkable posters at this site. It's always amazes the amount and quality of posts that are here.
Increased urinary frequency at night - Advanced Prostate...
Increased urinary frequency at night
With that much dose, the probability of "late-term" urinary side effects increases. I found that one Rapaflo worked better than 2 Flomax. Ask your urologist for samples until you find the type of alpha blocker that works best for you.
I'm deeply and particularly grateful to get your reply, Tall_Allen. Thank you very much.
A question, please. You write, 'with that much dose the probability of "late-term" side effects increases."
What is meant by 'late-term'? And what is meant by 'that much dose'? Forgive me for being obtuse.
I will definitely check on alpha blockers with urologist, in particular Rapaflo. Again, many thanks for all you post and share for so many. Gratefully, me.
Late-term side effects (SEs)... After radiation, ROs have noticed that two (or more) bouts of side effects can occur. "Acute" SEs are those that occur within the first 3 months of prostate radiation - almost everyone gets them to some degree or other. They are usually irritative and transient. But sometimes there is also a delayed effect, with side effects that crop up long after the radiation. By "long after," I mean anywhere between 3 months and 2 years - it is very rare for new SEs to occur anytime after that. Those are called "late-term" SEs. They are almost exclusively urinary or sexual (late-term rectal SEs are rare).
Dose... From your post, it appears that you had IMRT to the entire pelvic lymph node area plus a boost dose of SBRT to the prostate itself. Such boosts can cause very high late-term urinary toxicity. In the Anwar study (described below), they used doses that were biologically equivalent to as much as 52% higher than the normal IMRT prostate dose. While they may have achieved better cancer control with such a high dose, it came at a cost - over one in four men suffered significant late-term urinary SEs.
google.com/search?q=acidic+...
Try “Prelief”. Find on Amazon.
I have a personal theory, no evidence,,,that urine becomes more concentrated in bladder at nite because of no fresh water being ingested to dilute it. This concentrate of acids and spicy residue, may irritate bladder lining that may be compromised from a variety of reasons including Pca radiation therapy, old age etc. This phenomenon then causes bladder spasms that send messages to brain to urinate, when in fact the bladder is close to empty,,,so you then experience many false alarms.
Solution? See list if acidic and spicy foods above,,,,sorry, includes wine and other alcohol beverages!
It could be the prednisone you are probably taking with the Zytiga. I've found I have to take my second prednisone dose earlier in the day, usually around 2pm, to avoid insomnia and having my kidneys "turn on" at bedtime.
drugs.com/answers/does-pred...
Here's a fun experiment you can try to determine if the issue is too much urine or just an irritated bladder as Sxrxrnr1 suggests: Weigh yourself before bedtime, and then again first thing in the morning. A pint of water/urine weighs about a pound. A rough educated guess is that your bladder shouldn't be waking you up with less than half a pint in it. So if you're getting up 4 times a night, but losing more than two pounds in the process, then it's probably your kidneys going into overdrive.
Using a similar process, I've found I sweat about a pint an hour on a run 
Hey deervalley , I too did 8 weeks imrt over four years ago . I had other complications ie; tubes, a foley then stents for over a year. I’m just happy that I can pee at all . For that time I couldn’t . Not fun . It’s a royal pain in the ass getting up 5 times per night for these years .. every hour and a half I pop up to pee then followed by a sweet night sweat session . It’s interupted fragmented sleep at best ..Many guys use sleep aids . I do 20 mg melatonin and 4.5 naltrexone prior to bed . Do you still have your prostate ? I do...I think it’s a common a side effect of treatments .. take care ..
it's a common side effect of xtandi ....I keep a OJ jug beside the bed at night so that I don't have to get up ( I also wear two CPAP masks that are a pain to mess with when you are sleepy ) ....I often " go " 4 - 5- 6 or more times a night and can totally fill up a whole quart OJ jug in one night. never have to get out of bed and eventually you can do it without even waking up completely. go to bed at night and by morning the clean jug is full ... didn't even remember waking at all. never had an " accident in a year of using it .... it's neat and clean .. I vacate ( piss ) more completely lying on my side than standing up as well.
just what works for me .....
later brother ..........
Strange that you mention being on your side. For the year that I had two bags and a foley , I noticed the bags really filled up while laying down...weird .. what a gig?
Yea it’s something I discovered by accident, more or less. I go dramatically more on my side and it’s much more satisfying then when I stand up. Never hardly ever went at night before all this. Lots of people here, like you for example , have nightmareish problems going. My problems peeing seem piddley by comparison. There never seems to be an end of the treasures that comes with the territory. Yikes
I’m on the 24 hr pee patrol.. for life..but im Just Lucky to be here and able to pee at all . Whatever condition we are in . There is always someone worse off than we are .. I’m grateful I can all talk and see... no more complaining ,I’ve worn that horse out ... reminds me of this “old town road” video phenom... it says “ I’m going to ride til I can’t ride no more” .
Can’t say it better than that brother .... I hope I can have your attitude . You been through a lot.
💪💪💪
We all have been and will be thru a lot by the time all is done and said .. it’s like that “ the end of the line “ traveling Willburries ,buckle up ! It’s one hell of a ride? Live well...
I doubt that anyone here remotely thought their “ golden years “ would end up like this . Yikes 🤪😱
To add to the possibilities, the tone of the urinary sphincters and pelvic floor muscles is maintained in part by testosterone and estrogen. When they become weak, holding urine is more difficult. My husband found that doing Kegels helped a great deal, but more so with leakage than with frequency.
Did not know that. Thanks ..the “ frequency”” no fix for that so far for me either.....We just learn to live with it .. Good day Shanti1 .
I had eight weeks radiotherapy in 2009. In 2018 I was visiting the loo about 2 or 3 times a night per night so I was given Noqdirna which made little or no difference. More recently someone advised against taking this medicine and said that I should limit drinks to 1.25 litres. last drink around 6:30 pm. Someone else advised drink more with the last drink about 1 hour before bedtime. I was having to visit the toilet up to six times on some occasions. In the last couple of months I have been put on tamsulosin and soleferacin succinate. Now I am limited to 1.25 ltrs and I
fill an incontenence pad every night, wet the bed and I have on occasion wet the bed put on another pad and filled that as well. Any info I have read appears to say that this is for those who have problems 24hours per day. I have very little problems during the day but horrendous trouble at night.
What can I do.
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Prostate cancer has returned, considering experimental therapy (if I can get it).
What's Next?
Is Super Testosterone treatment appropriate or a viable option for me going forward? Should I just wait for an inevitable BCR and more ADT?
