Side Effects after completing initial 6 week BCG course

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Hi folks, I finished my last of 6 BCG 9 days ago. Unfortunately I am getting quite a bit of pain in the bladder, and am peeing very frequently including at night, which is really disturbing my sleep. Is this usual after a series of 6 BCG? And how long does it take to settle down, cheers, Leo

  • Hi Leo

    Think this is different for everybody. I have been lucky with the bladder pain as it normally settles down fairly quickly, though going to the loo every 10-20 mins on the first day is a real pain.

    With me the side effects from each instillation have been variable as follows:

    1-4: slight fever for ~6-12 hours

    5 - fever and chills .. knocked me out for 3-4 days

    6 - no side effects

    7 - heavy fraction in the loo after urinating .. like a jelly sinking to the bottom. Told this was the bladder epithelium sloughing off

    8 - blood and scabs in urine for a couple of days

    9 - no side effects.

    Maybe get checked for a UTI at the doctors if this is worrying you? Its quick and painless for the check, and at least will eliminate this cause of your discomfort, or get you on antibiotics to clear it up. Not had UTI myself, but understand its reported often.

  • Hi Leo1, the pain you are experiencing is your poor old bladder responding to becoming a war zone as your cells react to the live bacillus and march down to attack, coincidentally wiping out the cancer cells at the same time. I would expect this to settle down within a couple of weeks without further treatment. Unfortunately in my case the bladder sensitivity which has one peeing so often (including during the night) has continued three years after my final dose. It is a downside to the treatment but the upside has been that thus far I am cancer free, and I'll settle for that. Enjoy your 3 months holiday, During my 3 years of treatments I went off for a couple of brilliant holidays during my 3 month breaks, one time to see elephants and cheetahs in Sri Lanka. Reminded me how great it is to be alive. Sending love H x

  • Thanks for the fab post, cheers Leo

  • Great post thanks Clap

  • H, I am peeing about every 5 minutes today, about 50 to 75 ML each time. It’s driving me mad. Any ideas?

  • Hi Leo1, if it's that intense maybe you need to see a doctor or urinary specialist nurse? In the meantime definitely make sure you knock back loads of liquid. Lemon Barley is my go to. I make up a litre of it twice a day and try to make sure I drink it all. I think flushing things out seems to reduce bladder inflamation which is what makes us erroneously think we need to go. Hope things ease soon. Hx

  • Spoke to the nurse yesterday, but it’s got worse since then. I will call them next week. May need a catheter for a while so I can get some kip. Cheers Leo

  • Robinsons Lemon Barley water is my go to as well. Note that the lemon barley water  has ~4% barley but the others only 1%, Make sure you shake the bottle before pouring as the barley sinks to the bottom

  • Sitting in bed this morning sipping my lemon barley water. My 4 minute pees went all through the night, will 4AM when things subsided enough to get some sleep. Pretty desperate experience that made  E think of other possibilities for treatment.

  • Hi Leo, I am so very sorry to hear you are going through these side effects. I hope the lemon barley is helping and you are getting some peace. Sending you a hug, hope its getting better

    much love Angela

    Much love Angela x