I think I gave the impression that my uro was insisting on going back to the higher dosse. That was just part of our discussion, including giving me the option to quit altogether. We have discussed Dr. Lamm's protocols several times. But, as my uro says, there is no way to know what the proper dose is...what we are given just happens to be the way it comes from the supplier!! Lamm does his maintenance at 1/3, which is an easy division since the stuff comes in 3 cc amounts. I WILL be at 1/3 dose next week.
So far (three days out) I am having no more than the usual...
fatigue, some burning. I CAN do this.
Thanks to everyone for their help
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Dr. Lamm says the lower doses (even as low as 1/10th) do NOT show lower efficacy.
I don't know WHY uro's insist on going with the higher dose.
It is true that those with reactions teand to have better outcomes, you don't want severe reactions if it can be avoided without a higher chance of cancer coming back.
Be strong with what you feel! Everything I have read that cutting dosage won't affect it's efficacy (is that the correct wordage)? After 6 on, 6 off and 6 on my URO just has me on peeks and cytology but, I know if I have to do anymore, I will request weaker doses as the 11th and 12th instillations were becoming hard to handle. I was voiding every 15 minutes for 12 hours among the other side effects.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I don't blame you Sara Ann. I had to put my foot down (probably too late) with my ex Uro, and by the time he dropped the bcg dose down - too late, my bladder was so injured from the BCG high dose, I had BCG Cystitis. Not something you want to experience. You know your body better than anyone. Only do what you feel comfortable with.
I have my 2 yr cysto tomorrow, with my new Uro @ Moffitt, so I am very nervous today