It's great that you are sharing you journey with this. I am finding more and more that there is no standard treatment, but rather adjustments made case by case.
Knowing that information will make a difference for someone who thinks they just must fail rather than reduce the dose.
Hi Ann, Sorry to hear you are reacting like you have to bcg. What a drag. I hope you start to feel better soon especially with your back. My back is Is messed up and when it I can't keep going to stay in shape it seems it just gets worse.
Hope you feel better soon. Rocky
I read your post and was very interested. I had 4 treatments of BCG and then I had the onset of Rheumoid Arthritis in several joints and eyes. After getting shots from the rheumatologist and several weeks of pain - It has gone away except for when the weather changes. Since that time I have had clear scopes and have not had maintenance treatments. My Uro and Primary doctor decided that if the cancer came back we would have to decide at that time what course of action to take. Thankfully we have not had to make that decision. Thanks for writing in - good luck, hope to keep hearing the good news. Bobbi
Ann, I am supposed to follow you on Tuesday, but my back is KILLING me. Have no idea what may have caused this....do you suppose it was trying to put together the Sauder desk-in-a-box? But I worked on it Sunday/Monday/Tuesday and my back started hurting on Thursday. So bad that today I relented and am taking Vicodin. No way I am going to do BCG on Tuesday if it is still like this....I can hardly squat to sit down "you know where." I keep telling myself that I hurt my back...this is NOT caused by kidney/bladder or whatever else my imagination cooks up. YES, I DEFINITELY HURT MY BACK.
Re: the dose/scheduling of BCG. As my uro loves to point out, there is no real "science" behind any of this. Really, only Dr. Lamm has really looked into it. The reason for the 1/3 as the next lower dose? The stuff comes in a vial that is easier to break down into thirds than halves! The reason for the initial dose? That is how the original company packaged it. The reason for the length of time? It seems to work!!! Ah to be at the forefront of science!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society