Long Lasting BCG Side Effects

My understanding of BCG treatments during times of blood in the urine is that it all depends on how much.

If there is more than trace amounts of blood, then I think the chance of sepsis is higher because there is access for the BCG to enter the blood stream.

I know mine were delayed when I had more than trace.

Mike

From the BCG package insert (the bold highlight in the quote is from me):

David:
Yes, I am rather fair, being 1/2 Irish. (Not super light, or red hair, though.) I think in my case, it is my body recognizing an invader after repeated BCG's, and putting up a bigger battle. The other thing I wondered about was this: should BCG be given when there is blood in the urine? Always before, the doc would delay BCG if there was blood. Before this last BCG in August, there was .2 blood, but he went ahead with the BCG anyway. So maybe the inside of my bladder was still looking like a "war-zone" and a little recovery before the next "battle" would have helped . . . anybody have info on this?
At any rate, I know BCG is essential and really on MY side in this "battle". I'm glad to hear that eventually I will get past this pain, I was mostly concerned, because I just didn't really understand was was going on for so long, when doc kept saying all was fine. Thanks for all your input.
Calypso

Calypso,

I can certainly understand your pain and discomfort with the BCG treatments: Several years ago I had two occurences of CIS and papilliary tumors and was started on a round of 6 BCG treatments. I only made it through 5 and had to stop due to extreme pain and burning. My doc said I had the worst reaction to BCG he had ever observed. Later, he tried Mitomycin C in conjunction with a TURB and the reaction was just as bad, if not worse. At least the treatment seems to have put a stop to the CIS and other tumors and replaced it with Dysplasia and atypical cells which the pathologist refers to as "reactive" whatever that means.

It WILL get better with time. For about a year I still had occasional urethra pain and burning similar to what you described. Cystoscopy exams continued to show inflammation and even some edema (swollen, blister type areas) for about a year, finally improving untill the burning and urgency almost stopped. The only thing which bothers me now are the TURB's --- routine cystoscopies don't pose a problem.

As for using Cipro or Levaquin for infections, I can't comment, but I do remember having a persistent problem with getting rid of low-grade infections and had to use a drug called Macrobid several times.

I can't help but wonder if my fair skin and red hair have made me more reactive to BCG and Mitymycin treatments. Perhaps you have a similar physical makeup?

Hope you find more comfort soon!

David Doyle
Houston

Thanks, Patricia.
No, no discharge. Yes, sounds like I need another opinion here.
Thanks!

calypso, I can identify with you. It's been about 5-mo since BCG #9. Without testing ??? I was told I had BCG-infection of the prostate (pain for weeks after #9). Was on Antibiotics for 5-mo, w/no effect, so I am off the junk.

Starting a stream burns and is very painful and exercise seems to make matters worse, but I exercise anyway. A Dr at UVA told me not to take anymore BCG (at any %), that to do so I would only be asking for trouble.

I will see a NEW Uro for my next Cysto in mid-Jan, which I dread. Passing the cath thru my prostate is near unbearable!

Yes! I do realize things could be worse!

Merry Christmas, Happy New Year and Good Health to All!

Calypso.....Cipro definately can cause the cramping..don't take that one again...it can lead to tearing of the tenden of the leg. That actually happened to a friend of mine..very painful.
And i wonder if you don't have urethritis from a traumatic cath or from the BCG? Is there any discharge?
4months is a bit long for a reaction. I might try to see an infectious disease specialist at this point.
Pat