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Steve's BCG Nightmare

13 years 6 days ago #3738 by wendy

Was Isoniazid tried?
Lamm says (from webcafe),
"Treatment of BCG Side Effects and Complications

By lowering the dose of BCG to 1/3, 1/10/, 1/30, or 1/100th as needed to avoid increased irritative or systemic symptoms, very few patients have any difficulty with BCG immunotherapy. If irritative symptoms persist beyond three days, fail to respond to symptomatic treatment, or are severe isoniazid 300mg a day can be given. If patients respond promptly, I generally stop treatment after only one or two weeks. In patients who have true BCG infection requiring antituberculous antibiotics, for example symptomatic prostatitis, epididymitis, or hepatitis, isoniazid plus rifampin 600mg daily should be given for 3-6 months. With serious infections triple antibiotic therapy may be needed, and ethambutol 1200mg daily or a fluoroquinolone may be added. BCG is relatively resistant to cycloserine and pyrazinamide. "

By the way, the 5 studies I used to reference on the subject of low dose BCG came from either Japan or Europe. Maybe doctors just don't like to be 'educated' by their patients.

I think your doctor is wise to treat CIS with much suspicion as even the Europeans agree BCG maintenance is needed to adequately treat CIS, otherwise it's cystectomy. And the doctor doesn't think Steve can stand another dose. He may be right, too. I don't think it's very popular in the UK but US uros are often resorting to the BCG (low dose) + Interferon combination for those who BCG fails.

Here is other important info:
"RC should be performed prior to progression in high risk superficial tumors that fail after TUR and BCG. In patients with clinical and pathological nonmuscle invasive disease,radical cystectomy (RC) provides an excellent disease-free survival. One third of patients with high-risk superficial bladder tumors who underwent RC after BCG failure were understaged and had a shorter survival. Tumor in the prostatic urethra at endoscopic staging was the only factor associated to understaging and shorter survival.14"

Wishing you and your husband a wonderful time in Dubai.

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13 years 6 days ago #3732 by The_Rabbit
Hi Folks

I previously posted stating that Steve had suffered very bad side effects to the BCG, namely conjunctivitis and painful joints. We now know after two visits to our local Eye Hospital that he has Dry Eyes and scratched corneas - and never had conjunctivitis (misdiagnosed by GP). He has had this now for four weeks and regular drops are just starting to improve his vision. He has been unable to drive or work since this happened. His joints still hurt first thing but NSAIDs help. His mouth ulcers have been treated with steroids and his spots of face and chest come and go. We went to see his Consultant last week who informed us that since 2000 he and his 'team' have put approx 2 people a month through BCG - so approx 150 in 7 years - and only two have had serious side effects, Steve being the worst he had witnessed. The other sufferer was a 40 year old male. It was explained that younger people do suffer more than older. He said he will not allow Steve to have any more BCG. His next Op is on 5th March and we will have to wait and see what effect the 6 doses have had on the bladder. His diagnosis was Ta/G2 (not T1 as I was originally told) and multi-focal CIS. He said if the CIS is still there then the bladder will come out. His words were 'I am not happy to leave in a bladder with severe dysplasia'. Surely though, we should wait for the 6 month check as I believe BCG takes this long to work? Also, as Steve is now starting to feel better, he said that he would reconsider a lower dose of BCG. The Consultant referred to Dr Lamm and said the US tend to follow his 'paper' but we sometimes chose to do things differently and didn't go with the 'lower dose' regimen. Hmmm. Anyway, we are off to Dubai tomorrow in the hope that the sun and sea will make him feel a lot better (although friends have said the flight and desert heat could play havoc with his eyes!). I'll keep you posted. Ceri

GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis

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