Bcg side effects

Hi Gem Gem,

Sorry to hear your husband is having problems with his BCG treatments.

I have urgency to wee after each session but this normally goes after 24 hours. I find it tough for those 24 hours, so I do feel for you having to go through this for longer. I don't go outside for a couple of days after the BCG. Fortunately things do improve for me though.

Although I guess overall my urgency has increased since starting my treatments. I suspect having catheters regularly will do something to us for sure.

I don't really know what to suggest. I also drink lots of water and fruit and barley drinks. I gave up tea and coffee a year ago now, plus other drinks, coke etc.

I was told I could ring the oncology nurse anytime about any issues, perhaps he could give his nurse a call? 

I really hope things improve for you both and hopefully someone with more experience will pop along soon.

Kindest Regards 

Thank you BFG, my husband has had a mini breakthrough simply by drinking even more water (2.5 + litres) which seems to have definitely alleviated the pain when peeing - mentally too because at first I think he was hesitant to drink too much so he wouldn’t go so often!! He is still peeing frequently throughout the day & night but he’s definitely happier without such pain. Small steps. 

That's great news, glad he has found something that helps.

The docs should tell everyone that drinking too little creates over-concentrated urine, which is much more irritant and therefore potentially painful to pass. And risks getting repeat UTIs!

My husband has just had cycle 4 of BCG and seems to be struggling a bit with it.  He’s got no energy and not much appetite.  His symptoms of needing to per a lot usually settle down after 48 hours but not the tiredness.  He’s also complaining of a pain in his right side which he’s mentioned to the nurses and also been to a walk in centre with but has been told it’s probably muscular  but he’s nattered to death a bout it. 

I can only suggest he calls his cancer nurse, or you do, as soon as they are available. Meantime, try to ensure high nutrient content in what he does eat?

You might ask your specialist nurse to recommend prescribing / ask him/her about Mirabegron to help with urgency. It’s for over active bladders. 

Hi Gem Gem, sorry you’re here but welcome to an amazing group of people… this was my routine for my BCG first six..

I would take two pain killers before I left for the treatment… after I got home, I would just keep drinking as much water as I possibly could… once I had been once I was then going every 15-20 minutes for the six hours..in between pee-ing I would just keep drinking… even now I’m up at least twice a night for a wee…I was very lucky in that my side effects were minimal at best. 

I hope you both find a solution..

Nigel xxx

Hi Gem, welcome to the group.

Sorry to hear your husband is having a difficult time with the side effects of BCG, many of us here can relate to what he’s experiencing but be assured it’s doing what it has to do. I have had nine BCG the six induction and three maintenance and it’s been challenging from fifth onwards. I asked my GP for advice on pain relief and now take Codeine 60mg x 2 two hours before BCG and every four hours afterwards for at least twelve hours and it really helps. You must also take a laxative as it’s an opiate which causes constipation.. my preferred drink is sugar free Vimto or Robinson Fruits of the forest..I also drink lots of decaf tea during the day. In my experience the hourly cystitis eased after 24 hours but if it was going on longer, I would speak to my specialist nurse for advice.. I hope this is helpful 

Best wishes

Frank 

My husband has G3Ta too.. and has had the TURBT op and biopsies.  He is now booked for 6 week BCG starting in 4 weeks time.  I am sorry to hear your husband is struggling with side effects. :(  My husband had a lot of trouble after the TURBT due to damage to his urethra so the catheter had to stay in 12 days with a lot of discomfort and some pain... He had just as much trouble when the catheter was taken out with 3 lots of antibiotics, pain, and urgency.  In fact we ended up in A&E after a night of painful peeing every 10 mins, so the catheter went back in.  It sounds like you are doing everything right... lots of water does help the pain but excessive drinking just means more and more peeing.  It's such a tricky balance to find.  We purchased some pee bottles - partly because the damage to his urethra meant that peeing was more like a garden sprinkler and partly to ease the stress of getting to a toilet in time.  He has a cross body bag which is perfect for carrying a bottle in and gives him some flexibility and more freedom.  Things have eased up since the 3rd catheter was removed so we are enjoying the 'lull' before the BCG starts.  I am so sorry that the treatment is proving so challenging for you both.. I do hope it eases up and you both feel life is more manageable very soon.  Hang in there!