Long Term BCG side effects

That was my thinking too, I would not trust myself to do it properly. I will give the Mirabegron a chance but if that doesn’t work I will request the iAluril definitely.

Good for you, do let me know how you get on. Fingers crossed that the Mirabegron works but at least you will have some sort of back up. I know what you are going through, keep battling through you will get out the other side. 

Take care

Chris 

Hello, no I had mine stopped after 14 bcg's couldn't tolerate it. Burning and discomfort, walking and sitting painful. The only relief was sleeping until I got up to pee. Took painkillers but they didn't work too well. It is if course good to be cancer free just want that added bonus of being pain free. The nurse used to say at least you know the BCG is working some sort of comfort. It's easy to say but ride the storm and come out the other side.

Chris 

After they stopped the BCG  in December I started to feel better and that continued .by Feb I was great as I had my first scan that was clear and I said to the nurse when I wee now I wonder where it all comes from . Last October my bladder only held 100 ml hence my comment.

Just come across this post…im at BCG #15 ( done Sept 23rd)  and here today 29th October im still having a sharp pain when peeing…up a few time a night, if I drink to much im up all night, if I don’t drink enough I have the urge to go and only dribbles happen…also ( although it is getting better) walking is a problem. So sensitive…it only lasts a few minutes buts it rough…

Nigel xx

Hello Nigel, sorry to hear you are having problems with the treatment. I don't think it's very well explained when you start this treatment that there can be consequences. I breezed through the first six without too much trouble but from thereon it gave me a lot of grief. Burning, difficult walking, pressure to pee, disturbed nights, bladder spasms. Sounds bad but some patients have very few problems and do the full course I just wasn't one of them. Over time after they halted the treatment it did gradually improve its left me with an inflamed bladder and cystitis patches inside the bladder. What I found strange is how the consultants didn't seem to have a remedy.

Take care

Chris 

Interesting as I have cystitis patches in my bladder which I have been told are of no concern and to be honest they don’t seem to be.I no longer have the imflamation. So for me it’s so far so good but a year on I still fear the cancer returning but guess that doesn’t go. They blamed my cancer on the fact I smoked and gave up wait for it …………..56 years ago ! I have read on other sites that other females have never smoked so I do wonder on it’s cause .Before diagnosis I had some treatment but can’t remember its name it was an infusion into my bladder which did help calm it down wonder if that might help you. So much stuff we aren’t told about this,

Apart from the odd cigar I have never smoked. I have posted on here that I have had and still have Ialuril instillations which I find do help. I recommend anyone going through this should if they get the chance take the option of Ialuril up.

I had Interstitial cystitis for many years before cancer and regularly got red patches of inflammation.One of my urologists told me that it was auto immune related.The specialists were convinced I had Lupus but tests did not come back positive.Sometimes the patches came and went other times I had to have them removed.I have auto immune heart problems so who knows what is going on.I only know I never feel well these days.My partner has auto immune problems so at least we can support each other.Jane x

I gave up in 1975 after 5 years smoking and 22 years of passive smoking - mother smoked in our home and in public everyone else did too. Mum died of bladder cancer in 1974 after smoking since 1928 (so perhaps also a genetic cause). And some people came into contact with chemicals at work etc.

Nowadays it's drugs they  take that damage the  bladder. 

I've given up wondering what caused mine but there  seem to be a number of us women on here. And if it returns for  me it'll come back elsewhere as I no longer have a bladder.

All the best,

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