Post by
SupermanLantern on Jan 06, 2016 3:40pm
TRUTH
Started my BC journey in Jan ’14. Dx was T1HG. My 6 BCG treatments were unremarkable – but left me with a tender & swollen testicle. This turned out to be the initial symptom of disseminated BCG infection – a (thankfully) rare side effect that cost me one testicle, and a warning from my doctors that I could never, ever, under any circumstances, have BCG again.
So it’s now a year since my last BCG, w/o recurrence (and w/o any BCG maintenance). My next cysto is just 2 weeks away – and I’m anxious as hell. I’d feel much better if I were getting some drug to discourage return, but all I’m doing is waiting & hoping.
My troubles occurred along with the BCG shortage – so I felt that I had company wanting to know what was the next best thing to use. There was lots of complaining about the shortage, but so little information on the alternatives it seemed as ‘tho there really weren’t any.
How can that be?
I’ve studied articles on recent (and current) trials, trying to learn which ones might be leading to a BCG alternative. A replacement would be great, but I’d be happy to learn of a good 2nd best. OK, I’ll settle for a mediocre 2nd best. Just tell me which one it is.
But here’s my real question. As I study the descriptions of all of the possible alternatives (new drugs in trials as well as old ones) the most often repeated qualification is “for BCG refractory patients”. I understand why that’s desirable in trials, but what about afterward? Does being BCG refractory indicate that your cancer cells are different from those who responded well to BCG? And if so, does that mean that those drugs will be of little use to people like me who are not refractory – but simply can’t take BCG for other reasons? What about us? Is there a clear agent #2 for Ta/T1HG that’s out of its trials, approved, and in current use?
Comment by
vega509 on Jan 06, 2016 4:31pm
best of luck with your treatment and test results. I have a family member in the same situation.
Comment by
SupermanLantern on Jan 06, 2016 5:03pm
Must clarify. This is a post from a cancer patient. I have just been reading about all the issues from users of BCG. Wanted to share.
Comment by
redatnight on Jan 06, 2016 7:16pm
That Cowdoc was exceptionally well put...good work
Comment by
cowdoc447 on Jan 06, 2016 7:19pm
The literature and medical community refer to BCG refractory basically because BCG is the best choice at present that has FDA approval and is the benchmark referred to.