BCG treatment side effects

Hi Carla G and welcome to the group although sorry to hear your dad is in some discomfort following BCG. Good to know he is cancer free at the moment. We know BCG has a build up effect but effects can get better with time. Can't offer any advice other than what his consultant has prescribed but hopefully someone with the same experience may be along to help. Best wishes.

Hi Carla, I'm sorry to hear about your father. I have been treated for bladder cancer but in my case not by BCG - my bladder was removed. 

But I do have an 80 year old husband who has had prostate problems and needs to get up in the night. If he was doing it up to 25 times a night and more during the day I would get hold of his consultant and make sure he realises just how often he is needing to get out of bed. I would be worried that being exhausted by it all he might easily stumble and fall. The lack of sleep alone is not good for him.

Are you sure he has explained exactly what is going on? My own experience is that men, especially elderly ones, may not be very clear with doctors. Saying for example that he has to 'get up a lot in the night' might be interpreted as 4 or 5 times not 5 times that. If your father has a CNS I think you should talk to them and tell them about this. 

From reading what people who have had BCG or bladder inflammation or infection have posted in the past I have noticed they often drink Robinson's Barley water - low sugar - to reduce discomfort. I have never tried it but probably it wouldn't hurt to try it on your father.

I hope you can get him some help, he must be having a really miserable time of it.

Good luck.

Latestart

thank you latestart for your reply, yes my dads consultant and nurses are aware of how bad the situation is, he has a list of how many times he gets up each night and has shown it to them, my mum also has spoken to them to explain how bad it’s become but they have just said it may get better in time but it’s been 6 months with little improvement. He is exhausted and I feel he is getting quite depressed by it all. Thank you for your recommendation of barley water, I think he has tried this but I will mention it to him again. 
sorry to hear you and your husband have both had problems too. Hope you’re both ok now. 

Hi Carla G, A warm welcome to the forum and very sorry to hear about your dads suffering. I have had 15 rounds of bcg and the side effects are cumulative and affect people with varying degrees. my nurse insisted i didnt have my last one due to bladder inflammation, so i do understand how difficult things can get.

I agree with Latestart. your poor dad must be exhausted. I would contact his cancer nurse and explain how bad it is. there maybe a different drug than the one he has been prescribed. I really hope he gets a solution soon. sending you love and care 

Goodness, it does sound grim, poor man and poor wife too.

In that case how about telling the GP and possibly having a commode by the bed? Alternatively, I eventually managed to get my husband to sit on the side of the bed and use a bottle - you can get them from the chemists which meant he could lie down again quickly and get a little more rest which helped a bit to stop him being too exhausted. I have no idea how your Dad has managed to do this for 6 months. No wonder he is fed up.

Luckily my husband is now fine and me too, thanks for asking. I'm very grateful that since they removed my bladder I never need to get up to urinate at night - my night bag fills up while I sleep and holds 2 litres.