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Ever Decreasing Circles part three

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User
Posted 06 Sep 2018 at 21:59
Fingers crossed for the improvement Paul. You’ve managed the self-cathing in the past so hopefully this won’t prove to be to much of an issue for you

Bri
User
Posted 02 Oct 2018 at 10:41
So my oncologist has gone, replacement not coming. So I saw another consultant from Sheffield who was fine. PSA up slightly to 23.16. CT Scan was fine apart from a kidney issue. He is happy to continue regime whilst urology look at kidney issue. Functioning of kidney has not been good for while and scan reveals blockages in the tubes. Scan does not show it is cancer and hopefully it is not. Urology will look at it and decide how best to unblock via stents or an external bag. So it’s an issue but hopefully not cancer-related. Otherwise I continue for 4 weeks as before. Not bad really.

Saw urology nurse yesterday who has prescribed a tablet to reduce bladder contractions which alongside self catherisation it is hoped will reduce nighttime wetness. If this fails it will be down to keeping me dry via sheaths or pads.

So on-going issues and usual side effects but still on enzalutimide for another 4 weeks. So I am happy with that.
User
Posted 02 Oct 2018 at 10:46
Good news and another few weeks of breathing space for you.

But something bad has happened and your sign in name has been changed to your email address - eeeek!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Oct 2018 at 11:06
Thanks Lyn i’ve Corrected it I hope.
User
Posted 03 Oct 2018 at 14:56

Paul


Keep going mate, the joys of ISC. Just being nosey, what meds have you been prescribed for the bladder ?


Thanks Chris

User
Posted 03 Oct 2018 at 18:39
As stoic as ever Paul. Good you are continuing with the Enza and obviously hoping they sort the kidney problem. Are you still getting about with your scooter?

Bri
User
Posted 03 Oct 2018 at 19:20

My view is that the kidney issue is more diabetic related Paul (same as my father) keep an eye on arteries (heart/kidney) which often become constricted due to diabetic progression. Where does your Onco see you heading next after Enza. Does he think there are any trials for nuclear treatments that should be considered or possible.


Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 03 Oct 2018 at 21:03
Chris I am taking Toviaz fesoterodine fumarate 4mg one tablet daily. First two days have not been encouraging.

Brian, I get on the scooter quite a bit mainly when I am with my son. Confidence has took a bit of a beating and going out on my own feels quite challenging. But happier if with others.

Fresh I guess it could be diabetic but it’s been in reasonable control for a while now. Not due to see my consultant on that until next March which is annoying,

I will have either chemo or radium 223 if I choose to go with either but that can all depend too on how they resolve the kidney issue. So the longer on enzalutimide, the less I need to make decisions on what next,
User
Posted 03 Oct 2018 at 21:12

Paul


I have tried about 5 different bladder relaxing medications and they do take about a week to kick in. Like others have commented on here they sometimes lose thier effectiveness after a while, not tried the one you are on. Best wishes.


Thanks Chris

User
Posted 19 Oct 2018 at 15:04
So next steps on the kidney issue. I’ll try and give a summary. Saw my favourite urologist today which was great. There were a number of possibilities, some worse than others which he investigated via a flexible cystoscopy. Not easy but got through it. There is good news. Lots of debris in bladder (old books, articles, clothes etc etc) but it indicates that the kidney blockages are being caused through taking up this debris. So no stoma bags for now, no turp to clear out urethra, but most likely is a permanent catheter. You can imagine I greeted this with a whoop. If this works, dry nights, no getting caught short, bladder clears kidney tubes and therefore kidney function improves and I feel better. So they have given me the weekend to think it through and it will be fitted Monday. The doc plus The nurse practitioner were brilliant, I got a bit upset. It’s been difficult coping with all the side effects from this so if this works my quality of life should improve. This solution is the least invasive so there is good news in there somewhere as bladder otherwise was ok. So another circle disappears and life continues. Just hope it gives me better sleep and maybe I can get used to it.
User
Posted 19 Oct 2018 at 15:21

Paul


Are we talking supra pubic , uretheral or something slightly different ? I have had a SPC for about 18 months night times are great, attach a night bag open the tap and wake up hours later. Day time is slightly different, the natural function ot the bladder does kick in even when I am on free drainage so a pad is still required. The amount of leaking is easily managed. I joined a urostomy awareness Facebook site they do seem to struggle with attaching bags to the skin and lots of leaks. I will stick with the SPC for now. 


Best wishes Chris


 

User
Posted 19 Oct 2018 at 16:21
The words supra pubic were not used so I assume normal catheter.
User
Posted 23 Oct 2018 at 11:23
Turned out to be a difficult day yesterday. Catheter went in, no problem and was draining well but then I got pain at the end of my penis which would not shift. At times it was unbearable. Nurse tried a number if things but it did not improve, so after a harrowing 90 minutes she removed the catheter. So felt tired and washed out last night and the old regime of short sleeps and wet beds were back.

Tiday feel ok but awaiting news as to what they will try next, after all this was designed to solve kidney problem. Another day in the life to deal with.
User
Posted 24 Oct 2018 at 05:43

Have you considered an external catheter?


They use a condom style attachment rather than inserting a tube.


Amazon has them.


P

Edited by member 24 Oct 2018 at 05:45  | Reason: Not specified

User
Posted 24 Oct 2018 at 06:31
Paul,
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Barry
User
Posted 24 Oct 2018 at 09:40
I have looked at the convenient sheaths and this would help the night time leakage. However the reason for the catheter was to solve the problem of my kidneys getting blocked. This is the main medical issue. I am awaiting next steps on ways to resolve the kidney issue but if it can be done without a bag or catheter then I will be able to look into the sheaths.
User
Posted 24 Oct 2018 at 09:41
This is ridiculous, how do you feel about getting a supra-pubic instead? Or was it a different type of plastic to the ones you usually self-catheterise with? Some people are very allergic to some catheter tubes.

I hope they call you back in with a solution quickly x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Oct 2018 at 21:58
I was surprised and disappointed as it was suggested this would deal with the kidney problem. Obviously I have to see what they suggest next and whether they would try a catheter again or other versions or something more direct with the kidneys - stoma bags and stents have been suggested. For now a bit in limbo as I wait for the view of the urologist.
User
Posted 31 Oct 2018 at 11:16
So four weekly oncologist check up again. Another new temporary medical oncologist (what’s the difference between a medical and clinical oncologist) but she was fine. Understood where I was at and given everything going on in urological area a slight PSA rise was largely discounted. -26 now. But she talked of having chemo before I was not well enough to have it but agreed to continue same enzalutimide treatment for another 4 weeks. So good news really. Also kidney function improved down from 141 to 116 which is where it was 2 months ago. Not sure what is the normal range but the washout I had with the cystoscopy must have helped unblock the tubes. Again good news.

Then went for zometa infusion and weight down again by 4gs in four weeks. Now this is the best diet I have ever been on but maybe not healthy. Because I was so overweight I am getting back to a reasonable weight which is cool but eating remains a problem as do the wet nights. Urologist in two weeks hope some solutions around the corner.
User
Posted 31 Oct 2018 at 12:18

You have a lot going on Paul but a good few positives there.


I hope you get some sort of solution on the wet nights.


Best wishes,


Ian

Ido4

 
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