Hi Klau1973, & Patricia, & Rosemary, & Wendy & Rosie, & Zach et al!
Howdy Y’all from Hot, Sunny and Humid but Dry Florida,
A Mini Celebration, I completed the last of my first 6 BCG treatments today here in Florida AND I got a call Dr. H’s office in NYC setting up the follow up examination, ...Scope, urine test etc. for Aug 13th. I asked the question I was fairly sure I knew the answer to ( Q...How long should I plan to stay in NYC?) Answer ...It depends on what Dr. H saw and the test’s reveal. Oh well ,,,it’s just NYC lodging is somewhat expensive as well as plane fare... but worth it--besides I can probably stay with my son again....oh well....
Anyway, I did ask Sue from Dr. H’s office if you could draw any conclusions from the presence /absence and degree of side effects with BCG and she replied that you can’t. I.e, some of their patience have had many side effects and it didn’t work (if by working you mean preventing any reoccurrence at all) to patience who have had few or no side effects having it “work”. Once again the definition of “did it work?” it seems depends on the reference point of preventing them all to preventing any?
Anyway, I have had few side effects, but these minor effects have been somewhat progressive/cumulative if still not severe. Mainly very gradually increasing urgency and burning and some tiredness. I finished my last BCG today at 9:55 AM and now at 4:37 PM I’m fine, just a little remaining burning in my urethra and some small amounts of blood and some very minor aching & stiffness...but no fever etc.
As to the question about “How long to hold the BCG?” Here is my experience /understanding. After leaving after the first BCG I remember being told (besides the rolling over every 15 minutes and lying on each side (back, left, right, stomach for15 minutes and if possible with legs elevated for a few minutes?) I was told to keep it in for AT LEAST two hours. This first time the 2 hours was a piece of cake and I wondered what the optimum time was. So I called my Florida Dr.s office (where I am having the BCG) and asked and was told by the office/nursing? staff ...THE LONGER THE BETTER. So I held it about 5 hours. The next time I could only about 3 hours and the amount of time I could hold it has been decreasing with each subsequent treatment since. (Today I had to run to the loo at 2 hours and3 minutes!)
Anyway, when I finally saw Dr. S. and he asked about side effects and I told him about the decreasing time I could hold the BCG from 5 hours to under 4 to...He said “FIVE HOURS!” THAT’S WAY MORE THAN NEEDED... 3 Hours max should be sufficient.
Anda oneah mo liddle ting.....I can’t say with 100% certainty about Dr. H and the “Bud Light” opps I mean Blue light....as I didn’t ask directly (as I had no idea what it was or if it was necessary) I can just relate what I said before..
.”I am pretty sure Dr. H uses a “Blue Light” as this was one of the few times he seemed jovial..This occurred as he was scoping me on the first office visit and I was watching on a TV monitor and he said “See you can’t see it but,,,bingo see all that necrotic? Tissue (or something like that) when I turn on the Blue light!” It seemed he had a kewl new toy!”
Hope this helps a little to anyone out there as the folks who replied to me have been wonderful...my humble thanks.
Yosarian