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2 years 10 months ago #54926 by Teacher
Thank you, yes his doctor is presenting his case to the board tomorrow, pending the results of the scrape are available at that time, so I'm sure we will get an answer to that soon.

We just all want him to feel better, and after a month of feeling flu-like, and losing a large amount of weight from not eating and vomiting when he does, we all are eager for it to end. There doesn't seem to be much information available on BCGitis, we found one meta analysis research article, but no mention was made about average duration of symptoms. We just feel at such as loss that my previously active father has ben bed ridden for a month, and even doing a load of laundry takes it out of him.

Thanks for your reply!

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2 years 10 months ago #54925 by sara.anne
Sorry to hear about your father’s problems. BCG can be a life-saver but it also can have side effects. I suspect that it is too early to expect the treatment to have cured the cystitis yet.

The question of what treatment options are available is one for his doctors. For minor cases of BCG-cystitis BCG can be resumed once the irritation heals. But if the reaction is a serious one that may not be possible.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 years 10 months ago #54924 by Teacher

My dad just finished his first round of BCG treatments (1x/ week for 6 weeks). He has been flu-like since his last treatment on February 16th. After a few trips to the ER and being told that it was just continued BCG side effects, he has now been diagnosed with BCGitis. They are treating him with he same antibiotics used to treat a tb infection, for the next 6 months but it's not doing any good. Does anyone have any experience with BCGitis and how long it takes to begin to feel better?

Also he has one spot of CIS, he just had a scrape on Tuesday and the doctor said there is still a spot that looks like CIS visible, but we are waiting for the official results. We are wondering what this means for continued treatment. Can he continue with BCG while taking the antibiotics to fight it?

Thanks for reading and for your words of support

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