I have had 6 BCG and then 3 BCG Maintenace. I have had mild reaction, a slight fever once, very little bleeding (a drop or two) but I have had the famous "bladder spasms) very uncomfortable, however there is medication that does improve those.
Everyone is different, but in my case, I keep my eye on the results - so far so good for me. I have had two "clean" cystos - so far BCG seems to be working - so I feel it is a small price for big results!
For me BCG is nothing to fear - just a process to get thru and hopefully enjoy the benefits.
There are lots and lots of people who don't have a terrible reaction to BCG's
That is why the Doc's don't know what to do with us who have a freakish response.
My Doc said that he had treated over 150 patients with BCG and never had he known or heard of a reaction like mine. It's kind of like winning the lottery in reverse. ;D I would guess that your odds are at LEAST 150 to 1 that nothing bad will happen and you will go on with life as before.
I had a bad experience, but, I am back to normal.
Craig, thanks for covering the bases...
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
the best I can do is point you to my other posts concerning my experience, and direct you to the BCG article by Dr. Lamm on this site. I can tell you that my body's reaction was quite mild (in my opinion), consisting mostly of a flu-like feverish feeling, but without an actual fever. There were bladder spasms (sudden urge to urinate), and at times some blood and/or debris in the urine. Others have posted even more mild reactions.
I just finished up my intial treatment, so don't have much in terms of "vetran" suggestions. I will however tell you what seems to have worked best for me.
- Scheduled all my treatments for Thursday mornings so that I took only one day off when possible, and so that IF I reacted poorly, I could see the doctor on Friday.
- Stop eating or drinking two hours prior to the instillment.
- After the instillment, lay on your stomach for 15 minutes (Dr. Lamm's recommendation to displace the resultant bubble in the bladder); I requested from my doctor that I be allowed do this.
- Following the instillment, have nothing to eat or drink for two hours. Lay on your sides, back and stomach, rotating every 15 minutes or so (I called this my "rotisserie routine").
- After the first urination (and bleaching of the toilet bowl), start drinking PLENTY of water (for me, this was 13 ounces following each urination), and of course EAT! =O)
NOTE: have a dedicated toilet for the next six hours, bleaching after each urination.
- Six hours (or so) after the instillment, things should be pretty much normal.
- Taking a good nap at sometime after that routine helped me quite a bit; I recovered much faster when I was able to do so.
That was probably more information than you may have been looking for, but you may find it helpful. Other than the inconvenience, it was very managable for me.
OK, so I start my first BCG treatments in a couple of weeks only 3 weeks after my TURB. You guys are freaking me out about the side effects, etc. Can someone please check in with a few positive stories about this chemical? Or are there none?
DX April 2008
TURB April 2008
Last BCG (#15) April 2009