Thanks Sara. Thank you also for giving me an opportunity to participate in a well designed forum platform. Though I am now on annual surveillance by cystoscopy only, the images of sequences still stay clearly in my mind from the weird guts feeling I had when I first saw painless pinkish urine in the bathroom 4.5 years ago, startled and shocked by seeing red blood covering the basin in a public bathroom trying to hide the scene from the guys standing next to me for some reason, which led to the visit to ER and eventually seeing a cauliflower like tumor on the screen and finally had to tell my wife that I had bladder cancer. I am sure it made my family worried. For some reason, doing research has become my mindful activity so my mind not being occupied by the thought of cancer constantly. I have become fascinated by how super super complex automated factories our body is made of. I would have gotten much better grades in school if I had studied as much as I spent my time in doing research about bladder cancer. I am sure that many fellow patients have gone through the same path. Over the years, I have come to know who's who in the field of bladder cancer. So I have been following some of them on Twitter. When I find a new and relevant subject, I do background check and post it. I think I understand better about my prognosis and calm on the matter till about a few weeks before the next cystoscopy when I start having anxiety.
Last edit: 1 day 14 hours ago by joea73. Reason: typo
That was an absolutely fascinating article, Joe. And it will help a lot of patients who are worried when it is necessary for their BCG dose to be reduced.
I have been meaning for some time to comment on your always very informative posts. They are a valuable resource to all of us. Thank you for the time you spend researching these issues and then sharing them with us.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
A while ago, I sent an email to Dr. Lamm about possible impreciseness of reduced dose BCG protocol, which is used to enable a patient with severe side effect to continue BCG therapy. My question to him was the product monograph of MERCK ONTICE BCG says that a vial contains 1-8x10**8 CFU. It indicates MERCK guarantee that the vial contains between 100 million CFU and 800 million CFU. CFU (Colony Forming UNIT) is a unit which is used to measure how many bacteria exist. So, it is possible that a patient who had been treated with the vials containing 100 million CFU and developed severe side effects, and the patient switched 1/3 dose expecting the reduced dose will reduce the side effects. But a possible scenario is that the vial which is used for 1/3 dose may contain 800 million CFU translating to 267 million CFU which is more than 100 million CFU which was used for the full dose treatment. Dr. Lamm's response was mathematically true but the BCG vial contains live and dead bacteria so we need to rely on clinical test. The 1/3 dose protocol has been used also do address BCG shortage and recommended by AUA to be used for maintenance treatment. But this 1/3 dose protocol is facing some problem for those patients with 1/3 dose regimen are not being accepted by sponsors for their clinical trials for the treatment for BCG Unresponsive. The report with the link below is addressing the impreciseness of reduced dose protocol and asking the sponsors to include those patients who have been treated with 1/3 dose because of the shortage.