BCG Treatment symptoms

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Good morning,

This is my first time posting, my husband was diagnosed with bladder cancer last year, he has had two turbs and has G3 T1 non muscle invasive. First I must say that reading this  forum has helped me so much this last year so thank you. My husband has his 9th BCG treatment on 6th August. Had the usual urgency problems but now has got much worse. He is getting up nearly every half hour during night with urgency to urinate but it’s not a lot. It is slightly better during the day but still a lot more than ever before. We thought he might have an infection so doctor tested and it came back borderline. He is obviously exhausted as not sleeping. I just wondered if this was normal after BCG treatment. 

  • Hi  and welcome to the group although sorry to hear your husband is feeling the side effects of BCG. Not had this treatment myself but we do see these symptoms here quite often and if you browse through the posts you will see it often. Good to know no infections. Is your husband drinking enough water ? In cases of frequent urination some people stop drinking in the thought it will stop the peeing. This has an adverse effect on the bladder. With not drinking, the urine becomes concentrated and acidic and irritates an already inflamed bladder, causing the feeling of needing to go all the time. It does sound like a  contradiction in the circumstances but drinking plenty of water can help. It also helps to have longer more satisfying wees, rather than the annoying little dribbles. Some people recommend a touch of lemon barley to help getting the water down. As always, though, if things become too bad, then contact the medics. Best wishes.

    Best wishes to All,   rily.

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  • Thank you rily, he does drink a fair amount but think he is going to have to drink a lot more, I know it is difficult as it makes you feel you will need to pee even more but got to be done. 

  • Hi Starsign,

    Welcome to this friendly forum, sorry to hear about your husband's issues with BCG.

    This happens to me and did get worse the more treatment's I had. However, I was normally back to normal ISH after a couple of days. Although after my 18th the issue stayed with me for a lot longer.

    The Bladder becomes inflamed, which is what the BCG does and how it works. I understood the inflammation causes the bladder to hold less urine.

    It really is tiring so I feel your husband's pain.

    I wish you both all the best and hope the symptoms ease up soon.

    Trevor 

  • Hi 

    my mum has had her 1st BCG treatment today . She was told that if she suffers with frequent urination they can prescribe her something to help . 
    Hope your husband starts to feel better soon. 
    I hope you are ok as well , my dad had lung cancer last year and now my mum is going through this so I know how hard it is for the family as well x

  • Thank you for that. I hope your Mum is ok after first BCG treatment, it’s the unknown that is worrying. My husband’s initial six treatments went well and just felt very tired for a day or so. This must be so difficult for you coping with your Dads lung cancer last year too. I have found this forum so helpful and it has really helped me this last year, although today was first time I posted anything. I’ve found a lot of answers to my questions just by reading posts on here. It’s so good to hear how others are coping. Take care of yourself. 

  • Hi Starsign,

    With frequent urination I generally suggest you get your husband a bottle so he can sit up in bed or sit on the side of the bed and then lie down again quickly. Then at least he can rest and may even doze a bit between emptying.

    One of the men on here says to put the bottle inside a washing up bowl so it doesn't go everywhere if it falls over. Of course these bottles generally have lids but it sounded like a good idea. We also use bed protectors in case of leaks. Hopefully things will soon calm down.

    All the best,

    Latestart

  • Thank you, Latestart, they now have told us he has got an infection and on antibiotics, hopefully this explains things and things hopefully improve. 

  • Just to say my husband stopped BCG after he had completed the initial 6 treatments, the 3 maintenance and two more i.e. after 11 treatments. he was in such pain that they  agreed to stop treatment at this point. That was in 2021 and he has been NED since and has  now gone on to yearly cystoscopies.

    The symptoms gradually subsided and he now has to only get up once in the night. Obviously each case is different but we are very glad he stopped the BCG which was causing real problems with his bladder. 

    Hope this helps.

  • I had the same. Ended up with a RC

  • Well it's been seven years now and he's 77 so let's hope life continues like this.