Harriet,
Welcome to the forum.
Some lucky people have no problems at all with BCG. I react poorly, with burning, frequency, bladder spasms and inability to urinate. My symptoms gradually subside 8 to 10 weeks following a course of BCG,
Be sure to bring your concerns and difficulties to your doctor or care team. Involve them in all issues that arise. The docs should be providing you with ways to manage the problems of BCG. That said,
I do find Pyridium (Phenazopyridine) somewhat helpful taking the edge off. It is available without a prescription as "Urinary Pain Relief (check the ingredient) for less than my copay. Ask your doc if you can up the dosage and see if that helps.
My greatest relief comes from water - lots of it - i aim for about 4 liters a day. keeping the urine dilute helps a lot, BUT ask your doctor about the possible effect of large water consumption on the drugs you take or on general electrolytes - Don't just up water intake without the doctor discussion.
With high grade cancer, it is possible that you will begin maintenance BCG. Many report that reducing either the dosage and/or the retain time (often 2 hours) reduces the side effects. Both Dr. Lamm and Dr. O'Donnell have written about such reduction and benefits (did not help me, unfortunately, but many find it to be helpful). Again, ask your doctor about this should additional BCG therapy be planned.
The following link talks about BCG and reduced doses - again, material for a doctor discussion as needed.
blcwebcafe.org/drlammsprotocol.asp
Best,
Jack
