Frequency

[Etoile3]

Hi everybody,

I am really worried about my dad’s situation. Bref description: diagnosed with PC on December 2019, gleason 9 , psa 12. Started firmagon every month after 3 months , psa 0,9. dr switched it with Eligard, psa 0,2 better than expected he said. Brachytherapy on July 7, problem urination, retention. He has been cathater aside for 10 days.After removal the same issues. Cathater again another 10 days because his bladder was full, week stream etc. Removal again because my dad emptied his bladder without no problem, no pain at all. After 2 days of removal he had a lot frequency and urgency of urine. Very annoying....He started EBRT and the frequency persisted again. He saw the urologist and he gave 2 options: catheter ate him again or self cathater. He choose the 2 because he is very active: exercices, gardening, walking etc....1 day of self cathater he slept well and no too much frequency. He was happy to go to the bathrooms every 3-4 hours. Dr prescribed flomax 2 before the bed time. After 2 days, even he cathaterised him self he went to bathroom every 1 hour after the cathater. So he does’t get enough sleep. The urine sample shows infection of bladder. So he took antibiotics levofloxacin for 1 week+ flomax for 3 months. No improvement..... the culture urine showed for the infection to use bactrim less stronger than the first antibiotic. It’s the 4 day of bactrim and he dos’t see any improvement.many trips to the bathroom Every hour during the day and night. I feel bad my dad can’t relax and sleep well. He has a good of flow ,no burning or pain only frequency , he voids 100- 150 ml every hour. Dr said no more self cathater. My dad becomes anxious because he thinks the bactrim will no work or get the flomax once instead of 2. . I told him to wait finish the bactrim for all the week and see the result after. Any idea, advice, experience would be very appreciated. I love this forum because I learnt a lot. Have a nice day,

[Hidden]

I have a problem with your dad's numbers. 100-150 ml every hour is 2,4 to 3,6 l/day. Myself, just after RP catheter removal at a comparable frequency of once per hour, I could hardly do 60-70 ml. I guess your dad has been advised to drink at least 3 liters of water daily in order to clear his urinary infection. In the latter case, I would thing that he is performing within anticipated range. He can only enjoy some better sleep if he stops taking any liquid 3 hours before getting to bed. From my personal experience I know that one can't dream if awaken for going to the bathroom every hour. I estimate my start dreaming time was well passed one and a half of undisturbed sleep.

[Etoile3 in reply to Hidden]

Yes, he drinks 2- 3 l per day but he stops drinking by 7 pm and still many trips to the bathroom during the night. He goes to bed at 11 o clock in order to avoid the frequency during the night. He took Melatonin at 10: 45 yesterday and still waked up every 1 hour. Thank you

[Hidden in reply to Etoile3]

Yes, I know first hand. I had made my own observations, one of which is the following:

It is from this time of last year. Just before the break of dawn I would wake up, visit the bathroom and after that I had the longest period of undisturbed sleep for the night. I gave the following explanation: The automation of my body would keep some fluid quantity for its secondary respiratory functions. Just before dawn, when the ambient temperature is the lowest of the day, the body would decide that there are more fluid reserves than needed and initiate a disposal cycle. Tell your father to write down the time when he visits the bathroom and he may notice it too.

[Etoile3 in reply to Hidden]

He does every day. Exemple: He went to bed yesterday at 11.pm. He waked up at 00:30 -100 ml, 1:30 - 100 ml, 3: 00- 200ml, 4:00- 180 ml, 5:00 - 150 ml, 6:30- 150 ml, 7:45- 160 ml and after that every 45-1h around 100- 150 till now( 1:45) . Very worried. ........Because of the amount avoided,dr said no more self cathater since Thursday .

[Hidden in reply to Etoile3]

Indeed, your dad's quantities are high.

Compare them with my graph bellow:

ibb.co/3m3L58c

It depicts my all time most frequent night. During that afternoon I had a CT and they advised me to drink 3 glasses of water so that the injected contrast material would leave quickly the body. So I did, drunk 3 large glasses of water ~3x300 ml. It must have been no later than 8PM and as you can see from the graph I went to bed at ~1AM. That night I visited the bathroom 14! times, but quantity-wise less than half that of your dad's.

Now, one year later, I visit the bathroom 2-3 times per night having 3-4 hour periods between visits. Dreams are plenty now. And it gets better with time.

Please convey my sincerest sympathy along with best wishes to your dad.

[Etoile3 in reply to Hidden]

Let’s hope my dad will have 3-4 trips to the bathroom having at least 3 hours periods between visits. Let’s se what’s going on after getting all the bactrim. Thanks again

[Etoile3 in reply to Hidden]

What did you do to decrease the trips to the bathroom.???????

[Hidden in reply to Etoile3]

Patience is what I did. Time heals. I just drunk a full glass of water with my supplements. This was a big NO-NO a year ago. FYI, melatonin didn't work for me either.

[Hidden in reply to Etoile3]

Better to pee a lot than not a all . Many of us have this same pattern . No self cathing is a blessing . 🙏

[Etoile3 in reply to Hidden]

You are right. Dr said better to pee a lot than small quantity.

[Hidden in reply to Etoile3]

We must be grateful if he’s peeing freely now. So need an artificial valve implanted. What I’m saying is that it good be worse. I call it the night por train. At the start of covid o bought led toilet bowl lights from amazon . 3-$25 . No fun long for the lights anymore. It’s A motion detector. I went thru years of chronic fatigue back then . He surly might need a nap or two during the day. Melatonin and naltrexone prescribed to me by a naturalpathic oncologist are both said to have cancer fighting properties.. Please Tell you dad that I welcome him to the pee patrol. We do what we must to survive ..Exercise is a must for sleep.The firmagon should be pushing the pc down . How old is your father? .

[Etoile3 in reply to Hidden]

He is76, very actif, does gardening and a lot exercices. He loves walking but with that condition he can’t. He used to walk every day for 1 hour.

[Hidden in reply to Etoile3]

He will return to walking . 🙏

[Hidden in reply to Etoile3]

I take 20 mgs , some take 40 . Plus I’m prescribed 4.5 mgs naltrexone prior to bed. I Pee 6-7 times per night. I awake every hour and a half to pee. Followed by night sweats .. This has been my interrupted sleep pattern of five years. I’m lucky to be peeing freely now with no pain . Lucky to be alive . ✌️

[Etoile3 in reply to Hidden]

What’s naltrexone for.? I am really curious why melatonin did not work and he had 2 pills 5 mg. I take 1 and feel asleep immediately.

[Hidden in reply to Etoile3]

It’s used to ween people off of heroin in high dose. In low dose it helps sleep and does other good stuff for cancer patients I’m told by my doctor. It comes from a compounding pharmacy .

[Etoile3 in reply to Hidden]

Let’s see when he will finish bactrim. It’s the 3 day today.( Ithought the 4day. Thank you so much for your opinion and support.

[Hidden in reply to Etoile3]

After a year and 1/2 of antibiotics I exhausted them all except the Bactrim. It was the only one that still worked for me . Yuk , I dislike it and all the others. But let’s face it with out antibiotics none of would be here ..

[Hidden]

Hello Etoile3, I welcome your love for your father . Worry goes had in hand with a stage #4 dx. It was over 5 years ago for me .. I was 53 then . My urology was even worse than your dads. I was given a 50/50 shot to survive initial treatments. I had pc tumors exploded from my giant prostate Into my bladder and urethra causing k failure . I had tubes surgically attached into my back and kidneys and a foley for over a year and a 1/2.. I had constant UTI ‘s with constant bad antibiotics causing me during and afterwards neuropathy joint and muscle pain. I grew immune to all except the Bactrim.... Once things shrank down from imrt and double adt I had internal stents for 9 months. Then that Magical day when tubes stents and foley were shed.. Hallelujah! This is what I wish for your father.too. To get to clear place with pc . It’s a tough road to travel . Demeaning in many untold ways . But I think that he can get to a much better place. The good news for me was I went into remission soon after and stayed there over 4 years. This is the best that we can hope for . Get him though it .. Your love and caring are the most needed medicines . My father also had this . I was living several thousand miles away from him at the time and didn’t see him much. He passed of a heart issue 2 yrs after having a Radical prostatectomy..At 71.. his problem was always my mom. She was cold and callous to him to the point of leaving him for a much younger man during his health struggles. He decided to check out . As long as you father has good reasons to live he can survive with this for many years if all goes right from here. So love him and pamper him any way you can . Peace to you 🌵🙏

[Etoile3 in reply to Hidden]

I feel bad to see him urinating frequently and Not getting enough sleep. He needs to relax and has 3 weeks left radiation.

[Hidden in reply to Etoile3]

As Rt goes on it can drive fatigue also . I did for me . He might have low points. But When it Pushes the pc away it will be worth it. It will take time to recover. My dad es whither and gaunt after the RP. I really felt for him .

[Hidden in reply to Hidden]

Excellent pieces of advice Whimpy. Sorry for your father though.

[Hidden in reply to Hidden]

Thanks , my Dad told me once in my life that he loved me . Made a special trip to tell me goodbye. This was fantastic from a stoic man to his youngest of four sons. He came to me in a dream

After he passed and just said “ I’m OK” I’m at peace with him. Love is eternal is my belief. Take care , be strong yourself and hold dads hand wherever you can .❤️

.

[Etoile3 in reply to Hidden]

You made me cry. I do everything for my dad.He knows he is surrounded by love and care of my mom and my brother as well.. Good advise to be strong, but I am not. I cry in my room seeing my dad suffering but after that I say everything will be OK. The most important is to beat the beast.

[Hidden in reply to Etoile3]

This is the human in you . If you didn’t cry I’d be worried about you . It’s tuff to see our folks age and suffer . Love is painful . It rewards outlive the dam pain. I’m sorry to make you cry . It’s natural to let it all out . Life is trying right for the entire world so when we’re going thru this at this time it’s more difficult than normal times . You now see that our health is our greatest asset .Live happy take risk and be young . Thank you for sharing with me. It makes my day .😂😷

[j-o-h-n in reply to Etoile3]

Tell your dad to keep an empty bottle of gatoraid (or any wide mouth bottle) near his bed and to urinate in that during the night (don't turn on lights) and go back to sleep right away. Keep some damp paper towels nearby in the event he wants clean his hands. Of course no fluid before 3 hours to bedtime.....

(Also he may try sleeping wearing two depends and make sure of a rubber mat in the bed)

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/09/2020 3:40 PM DST

[Hidden in reply to Hidden]

Mom

Suffered emotionally her entire life . Dad stayed to the end . Although we begged him to save himself 40 years ago . She had him pinned down . There hasn’t been a day go by in 23 years than I don’t think of him . ❤️😎

[monte1111]

I guess that rubber mat idea might work. Advil, a little before bedtime, helped me a lot. Seemed to relax everything. I freaked when I was told I couldn't use it with chemo. Switched to Tylenol and that seemed to work also. And then just a few days after the first chemo the worst of it went away. I get up a couple of times a night. No more Advil or Tylenol. I remember the 10 times a night. Relaxing music or podcasts help me nod off quickly.

[Etoile3 in reply to monte1111]

Thanks a lot!

[Hidden]

Try this. It worked extremely well for me. First, take your Flomax, twice a day. One morning, one 12 hours later, I have been on Flomax twice a day since 2003. Second, take Sitz Baths and pee away. After Brachytherapy 16 years ago, I took up to five or six a day. Third, drink your water. If you stop priming the waterworks, you will start to retain in your bladder running the risk of infection. Even today, if I start to retain urine, I’ll take a Sitz Bath........ and, if you are concerned snout sitting in hot water with urine, don't be, it won’t hurt you.

GD

[Etoile3]

Thank you for your advice.