Yes, Warren. To all of the above. Several times during maintenance I had "BCG-cystitis" and the infusion was delayed for a week. By the time I finished, I was on 1/3 the beginning dose. Mike is right....get your dose REDUCED.
My uro explained to me that there is no scientific reason for the dosage used. That is just the amount that the companies packaged and was available when this was first used! And Dr. Lamm, as Mike mentioned, states that even 1/10 dose can be effective!! As Mike points out, it is well worth it to work with the dosage. And the two hours is not gospel either...just the longer (up to that) the better. Sometimes I didn't make it.
The lower dose may also help with the crappiness (clinical term for fatigue, painful urination, etc.)
BUT remember that these side effects mean that your immune system is kicking in. Much better than having NO reactions, no effect.
Stick in there, if you can.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
If the reactions are increasing, ask about reducing dose strength.
According to Dr. Lamm, even a 10% solution shows no reduced efficacy.
My reaction was so strong that I was not allowed to continue. Very high fever for days, shakes, etc.
My local uro wouldn't to the reduced dose and I was too naive to argue at that time so they just switched me to mitomycin for a few treatments and then waited for it to come back invasive two years later. If I knew then....
I've been reading posts for so long you'd think I'd remember these discussions, but I don't. Last time I had BCG a year ago for my first recurrence of CIS I had a reaction to the last treatment. This time I just finished the third BCG/Interferon treatment and I'm having dysuria, frequency, constant burning & pain, and generally feeling crappy as a result. Pyridium, Urelle, ibuprofen, and wine take the edge off. My last treatment was Thursday. It's Monday now and every time I think I'm getting better the symptoms return with a vengeance. Perhaps the fact that I have to catheterize myself Saturday and Monday so that my most recent stricture will stay open for the treatments adds to the irritability. I don't see how I'll be able to hold the treatment in my bladder for 2 hours feeling the way I do, to say nothing of my anxiety about escalation of the reaction. So, has anybody had to delay or interrupt treatment for a reaction? If so, what happens?
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...