My waterworks again!

[27-359]

Hi. I have just had my third Carbo/Caelyx and my bladder is giving me issues again. I developed an overactive bladder after chemo in 2017, and it had since settled down to occasional flare ups which I managed with tablets from the eurologist. In the last week, the compulsion to urinate is with me constantly and if ignored, I become incontinent. The tablets which worked before, only help for about twelve hours, and I am only supposed to take one in twenty four hours.

My oncologist does not accept that chemo is responsible but I am convinced otherwise. Has anyone else experienced an overactive bladder, and did they find anything that helped?

I do not have an infection, but strangely enough, antibiotics have helped in the last past.

Jenny

[JayGeeCee]

Jenny did they insert a jj catheter into your uretha during surgery?

They did with me because the cancer had scarred and weakened my left one. The whole time it was in situ I felt like I had cystitis. The relief when it was removed 18 months later was instantaneous.

I hope you can get things sorted and get some relief soon.

Hugs

Joy

[27-359 in reply to JayGeeCee]

Yes I did have a catheter but that was four years ago and this has only got this uncomfortable since starting chemo three months ago.

Jenny

[delia2]

Hi Jenny. I think it might be a version of peripheral neuropathy in which case it might get better over time. I developed a need to go quite frequently even though I don’t really have to but if I ignore it it can go away or at least not get worse. I don’t have incontinence (yet). Xx

[27-359 in reply to delia2]

I have contacted the hospice today for advice, and was told that chemo chemicals can irritate the bladder lining. They have also advised on medication that will help. Hopefully everything will clear up when chemo is finished.

Jenny

[ElayneZ]

Hi Jenny - I am on carbo/caelyx too. The first few days following my first couple infusions - I had bladder issues. ie I didn’t even feel the need to go so had incontinence. This only happened if I was laying flat. Didn’t have issue standing or sitting. Thankfully after 3rd and 4th infusion there wasn’t incontinence issue. However I do need to pee more often the first week following infusion. Hopefully it will improve for you soon too.

[27-359]

I am reassured to hear that someone else has experienced bladder issues too. I really don't want to have to start using pads so hope that I see some improvement too

Jenny

[Kkaren]

I find your post of interest. I’ve just finished carbo/Caelyx and had a lot of urinary issues which I put down to kidney stents but perhaps it’s not been that at all. I spent three days in hospital being treated for a urine infection and after that pleaded with my GP to put me on daily antibiotics as I was terrified I would end up with another infection and miss my last treatment. Oddly enough I haven’t noticed as much discomfort since I finished the chemo. Definitely food for thought. Karen

[27-359 in reply to Kkaren]

My on c won't accept it, but the hospice nurse said that it's due to harsh chemicals irritating the bladder lining. She suggested drinking cranberry juice.

Jenny

[mrstadpole]

Hello Jenny

How strange that you have had bladder issues because this is exactly what I experienced when I was on Caelyx. I didn't associate this with the chemo but mentioned the urge to go to the loo to my oncologist.

As I had never had this problem before it was suggested that perhaps I had a urine infection and was given antibiotics. I feel certain now, as when I look back on this time this disappeared when I had finished the Caelyx.

I hope this can be solved for you as it is difficult to do alot when you have to be so near to the toilet.

Ann x

[27-359 in reply to mrstadpole]

I have been given medication which definitely helps. I have another three months treatment to go and really couldn't go on as I was.

Jenny

[Broader]

I had awful bladder problems when on carbo/ taxol I think mine was some sort of neuropathy, I was peeing 30 plus times a day but only producing a teaspoon amount followed by awful surge right through my body, Had urine tested... no infection found, I had to wear tenner pants at night otherwise I would have spent the night in the loo. It’s awful and I feel for you, as if we haven’t enough to put up with, I do hope you get better quickly

Wishing you well

Christine x

[27-359 in reply to Broader]

How you describe the sensation is exactly right. I would pass a minute amount of urine then feel a dragging sensation down below, as if everything was about to fall out.

Jenny

[Hidden]

Hi Jenny

I too have had bladder issues with various chemo. Seems to be the first week or so. Feel the need to go but the moment I stand up I had no control.

Has usually resolved after a week or so but am now on weekly Taxol so could be a problem.

Have resorted to pads especially night time .

Hope the issue sorts itself out.

Best of luck with everything.

Janet

[27-359]

It's really not fair is it? We have enough to contend without the assorted symptoms that never get mentioned. I shall give my onc the forum feedback when I talk to him next. It might mean he is more sympathetic to future patients with this debilitating side effect.

Jenny

[MarleyZ]

So had similar issue but not to a great extent nonetheless unnerving to say the least, spoke to my cns nurse and together with the chemo Dr they suggested a referral to another Dr who deals with exercise which could rectify the slight drop of the bladder ie muscle strengthening is the lay term I had for that ... think you can find the exercises which help the muscles...tried it a few times and it does improve the situation... had two episodes of absolute incontinence first time was day after relase from full hysterectomy op and then on the first chemo since then haven't had any episodes have tried the exercises occasionally I have to say.

[Shinebright2020]

I had my second cycle yesterday and last night i didn't even the need to go to pee but had some incontinence whilst sleeping only to realize later when it was wet on my bed. Seems very strange, as my chemo had a rocky start and now this. Hopefully it is only one off and will see how today the day goes.

Hopefully you are on the mend.

xx

[27-359]

I am ok at present, but expect to have issues after the next chemo. Just have to be ready I suppose.

Jenny