In no way do you come across as a fool, and funny thing about the internet, nobody using it seems old, at least to me!
Searching for answers and taking a pro-active stance regarding your diagnosis is a wise thing, though it's certainly not for everyone. I think doctors prefer an informed patient these days. It's a proven fact that people who are knowledgable about their diagnosis and involved in their treatment decisions do better than those who remain passive. That was a breast cancer study, but I'd think it would apply across the board...
I'm glad you have your sons to ask for input, also that you have a doctor who communicates with you! You've been through a lot these past few years, it must very scary. Maybe it's not such a bad idea to postpone BCG until you and your doctor are sure it will help and not harm.
Good luck with everything and please keep us posted.
I went to the web site you gave me and found that Drs. Kamat.A. and lamm,D. had presentented a paper in May suggesting antibiotic effectiveness in low grade tumor recurrences. Since I have unresolved queries because of my allergy, I have decided to postpone the BCG treatment.
Your support and prompt response to my Q's are greatly appreciated. I hope I can help someone else as well. Thank you, and God bless.
I would like to get the full paper, and now believe it will do no harm to delay the initial BCG steps until I'm sure it not a big mistake. I have to be careful not to act like an old fool.
I will also refer the paper to my family Doc and my sons for their input. I will continue to post here until a final conclusion is made. Hopefully the conclusion will be clearly made and others can benefit from it.
Your doctor has already given you the 'new standard' for recurrent, low grade TCC, a chemo wash after resection. BCG would be an even bigger and better treatment but is it really necessary, considering your tumors were low grade. Why wouldn't he give this treatment time to work before moving on to BCG, I'm wondering, especially since you're nervous about contracting TB and don't know the answer to your initial question.
There was a recent article from France about using antibiotics along with BCG in order to allieviate and/or prevent bad side effects, I copy it below. If you and your doctor find it interesting enough you could buy the whole article. There has been other research that found antibiotics are actually good at preventing recurrence
Improving Compliance of BCG Immunotherapy: Practical Approaches to Managing
Pascal Rischmann, a,aCentre Hospitalier Universitaire de Rangueil, 1, avenue Jean Poulhès TSA50032, 31059 Toulouse Cedex 9, France
Available online 8 June 2006.
Adverse events (AEs) following intravesical bacillus Calmette-Guérin (BCG)
therapy are directly related to reduced compliance, leading to treatment
cessation and incomplete treatment. Dr Rischmann and his team designed a
prospective study to determine whether prophylaxis with ofloxacin could
improve the tolerance of BCG in the treatment of transitional cell carcinoma
(TCC) of the bladder. A secondary objective was to investigate the effect on
efficacy. The use of ofloxacin significantly decreased the incidence of
class 2 or higher AEs (moderate or severe) between instillations four and
six. With ofloxacin the percentage of class 3 AEs was also significantly
decreased between instillations one and nine. Although ofloxacin reduced AEs
involving the lower urinary tract, it did not prevent class 1 AEs.
Compliance to full BCG treatment was also improved. Ofloxacin did not appear
to impair the efficacy of BCG during 12 mo after treatment. The use of
prophylactic ofloxacin 200 mg given twice after BCG instillations appears to
be a simple and practical method of improving BCG tolerability yet
This is the third surgical removal in the urogenital area. I have had prostate cancer 1998, a tumor removed 2004, from the ureter, and last year some small lesions of the bladder were resected by csystoscopic method. After the latest resection, the bladders was rinsed with a chemo wash and then the CT scan to verify that the ureters were clear. The BCG was suggested as a prevention therapy. I have talked with a virologist who reminded me that the bladder is considered "outside" the body, so the introduction of a low grade infection is not the same as entering the vascular system. And that a positive reaction to the infection will actully be an indication that the therapy is working. As for mitigation of the severity, I guess I'll just have to take what comes, using antibiotics if the temperature gets too high.
Any suggestions will be appreciated, as I plan to go ahead tomorrow with the appointment to begin the therapy. My understanding is that the most severe reactions are after the third week, rather than right away. The rest of the literature suggests that this therapy is effective in reducing recurrence of even low grade tumors.
I'm also curious, why BCG for a low grade tumor, was it high risk in some way? Large, over 4 cm? Is this your first bladder tumor?
Over-treatment can be just as bad as under-treatment. Have you had a second opinion?
About your concerns re:allergic reaction...you'd need to ask an expert. Try Dr. Lamm's site:
He's an expert on BCG.