I did it again...and survived!

With my first 30 BCG treatments I did half of them at 50%. The next day I would be almost be back to normal until #30. But I did recover from that one-just took longer with a complication. Then stayed clear for 5 good years! Then last fall began treatments again and had great diffculty recovering. My bladder was not happy and I was not happy so ready to give it up. My doctor finally went to 10% in February and I could tolerate it. I wish I had insisted in December to go lower since I was afraid to go anywhere other than home or work. Next exam is in September with 3 more treatments in October scheduled. They will be 10%. So don't be afraid to go lower. You are listening to your body better than I was. Good Luck. Hopefully we both get 5 or more good years.

Sure would be nice if there was a way to do some sort of sensitivity test on individuals to figure out the "right dose" for them.

I don't know. Subcutaneous skin test or something? Tiny little amount, see how bad it reacts and then gauge from that?

Maybe some day someone will come up with that one.

Mike

Everybody reacts so differently to BCG, became apparent to me just reading our BC Forum the past 4 years. Some patients can't get through the 6 weeks, due to reaction, while others go through 30 with little problem.
I did well until the 24th. It did get harder each time, but when I went for my 24th I felt good that day, no infection, BCG dose was 10% and downhill from there.
My Uro @ Moffitt works with BCG all the time and said that happens. Sometimes it is one too many, no warning, bladder just had enough So one year later, I am still trying to get over that last BCG.
I guess it would be hard to test for the perfect dose, because everyone reacts so differently.
So far the BCG has kept the CIS away for 2 yrs 8 months, so at least it worked so far

Nancy

Sara, great news, hang in there.

I have my cysto follow up 06/10/10 then if all is clear I will have my 16 through 18 BCG installments starting 06/15/10. I will also then be on the 6 month plan which is worrisome. Amazing the closer you get the more worried one gets.

Joey

Glad to hear you have another series behind you! It might be worth discussing reducing further to maybe 1/10th. As Nancy noted, Lamm goes as low as 1%. If 10% induces the reaction, that's good enough (and he's told me before and I've quoted him other times that it may even be better).

My guess (just a guess) is what they really need to to is figure out a way to determine the absolute minimum amount to produce a reaction in each patient. Collect the data on that around the world and then reset the standard. If 80% of the population of bladder cancer patients got the reaction needed at a 1% solution, then you have a new standard. Then they would be increasing the dose for those that don't rather than dealing with some potentially very nasty side effects for many and then having to scale back the dose.

In any case, glad you are through this series!

Mike