BCG after effects

Phil G 9 months ago

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I was diagnosed with bladder cancer almost 2 years ago I have undergone initial operation to remove tumour high grade carcinoma in situ I ve had the initial 6 bcg treatments numerous flexi to check bladder

4 ridged under general anaesthetic once to remove a reoccurrence the other 3 to take biopsy’s all with no reoccurrence .

i have had another 2 x 3 bcg treatments and recently started another 3 after the second one the side effects have been so unbearable that the urology department did not give me the third one .

the main side effects are severe pain from lower abdomen down to penis for the first 4 days after treatment urgency to urinate every hour very little sleep joint pain and feeling totally drained

every time they look in my bladder they tell me the bladder is very red and inflamed which they say could be BCG side effect

I am now waiting for another flexi on 4 th October to see what’s going on .my last treatment was in July and I’m still in pain stinging when urinating very little sleep and no energy .

last week I passed blood which carried on for 2 days urology carried out urine test the result that I got today showed normal no action required

BFG 9 months ago in reply to Pompey365

Hi Pompey,

Thanks for the recommendation on the Ural powers, sounds promising so have just bought some. My symptoms aren't too bad (15 BCGs in) but have some discomfort when weeing, so going to give them a go.

If they work I'll ask my BCG nurse if I can take after the instillations. Worth a try.

Thanks again.

Trevor

Sarah45 9 months ago

Hi Phil, I hope things settle for you Asa. My father is suffering since Sunday with constant need to pee. He has had his first round of bcg which was completed at the beginning of August. Last week he went back after his 6 weeks rest period and he just couldn’t tolerate the big in his bladder. Since then he has hardly slept and is in pain and discomfort. Bcg has caused him pain and he is reluctant on carrying on with this treatment. Doctors have given him a pill to take but it’s just not working at the moment. Anything worked for anyone to help with the constant peeing, please let me know.. so hard seeing him suffer like this

Pompey365 9 months ago in reply to BFG

Hope they work for you too as they really did improve things for me. I only discovered them once I'd finished the BCG course so don't know if you can have them during treatment or not but would be interested to hear what your BCG nurse says. When I told my consultant that I was using them he agreed it was a good idea as it is the BCG inflammation that causes the pain when you have a full bladder and the Ural powders make your urine less acidic and therefore ease the discomfort.

Pompey365 9 months ago in reply to Pompey365

And meant to add the other thing you can try is Buscopan if you are having bladder spasms as they help a bit too.

BFG 9 months ago in reply to Pompey365

Thanks Pompey, my next BCG instillations will be around Feb 2025, but will give them a go during this break. Although I've got a biopsy next month, so will ask my consultant also.

I'm more in mild discomfort, but it's the urgency that gets me. I have to go, hard holding it in.

I'll let you know how I get on.

Thanks again for the head's up.

Trevor

Pompey365 9 months ago in reply to BFG

I know exactly what you mean, I was going every half an hour at least and once I had the powders and Buscopan it was still a bit uncomfortable but it became a whole lot less frequent. Hope they help.

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BCG after effects