Mike, I agree with you. Never do BCG if you have sepsis. It is a form of blood poison. It is when your own immune system attacks your body, like rhumatoid arthritis. Very rare. The thing is, you can't put off BCG because of it because the only way you will know you are going to get it is when you get it... and then you will end up in the hospital. And usually you will pull through just fine.
With BCG your immune system does the work, not the BCG. So your best bet is to get the immune system up to full force before you start. Lots of vitamim C and exercise. No animal fat as that helps create cancer. No sugar as that feeds cancer. Keep the urine alkalinity high as cancer hates acidic urine.The drug store has urine strips to test your urine ph. Miotmyicin is neutralized by acidic urine. Play the cards you are delt. And remember, there are thousands of success stories for every non-success story...people just don't blog about them as much.
"Don't believe all the stuff about the bad effects of BCG. Just do it."
Kind of dangerous advice in my opinion. Maybe you didn't quite mean it the way it sounded to me.
BCG is the best treatment for CIS and the gold standard if you can tolerate it. Some reactions can be severe and that is why the medication lists the life threatening potential reactions in the paperwork. Sepsis can kill you quickly and ignoring bad reactions can be deadly. I would agree that fear of a reaction is not a good reason to avoid BCG but not everyone can take it and for some there is not even a reaction generated at all so BCG fails in those cases and alternatives need to be tried. Still, I would agree that CIS patients should try it first as is indicated in the NCCN guidelines. BCG is the first choice best option given those parameters.
I tried hard to get my doctor to just lower my dosage strength because research showed no reduction in efficacy. He would not though because my reaction was too severe and his concern was a potential for sepsis so I had to switch to mitomycin.
So, if you (others reading this post) are on BCG and do have a severe reaction report it to your doctor right away. Allergic reactions or sepsis are not cured by attitude. A positive attitude is always better than a negative attitude but it won't cure cancer, sepsis, or a compound fracture by itself or make severe reactions disappear.
Well, all was not smooth sailing, but it really did not affect me that much. The trick of course is mental attitude. A valium at night helped a lot. I had something that .5% of BCG patients get...it is called Reiders Syndrome or Reactive Arthritis. About 14% of people from Northern European background have a gene know as HLA-B-27. If you have that gene and then have a serious infection you can get it. It will appear weeks after the infection has ended. A human body thinks that BCG is an infection. To make a long story short I got arthritis so bad I could only walk with a walker, my ribs hurt so bad I could barely roll over or stand, and my eyes were as red as Dracula. Reactive arthritis can last 3-6 months. But I was back at the gym in less than two months. The point is that some sore anlkes and red eyes are a small price to pay to be cancer free. For now my maintance will alternate between BCG and Mitomycin. I have read several reseach papers indicating that people who take cardio preventive medicines like aspirin, ibuprophen, or celebrex have a reduction of cancer returning by as much as of 40% after their rounds of BCG.
Congratulations!!! I, too, had CIS and went through the BCG treatments, mainenance treatments, and then...now I have been "all clear" for a total of 4 years!!
BCG is, as you noted, usually just "uncomfortable" but some patients have real problems with it. Twice, in my case, we had to delay treatments due to BCG-induced cystitis. Mike, whom you have probably met on these pages, had a horrible time and "failed" when the BCG had to be discontinued. In very rare cases, the side effects can be life-threatening.
That noted, it is, indeed, a life saver for many of us. Studies have shown that when problems arise the dose can be lowered significantly. At the end I was on 1/3 of the initial dose; doses down to 1/10th have been effectinve. In fact, my urologist explained that there is no scientific reason for the dose being used....that was just the way the material was packaged and available when it began to be used for bladder cancer treatment!
Good luck for your continued health. Will you be undergoing maintenance therapy with BCG?
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Two years ago a cyto found a really large mass in my bladder. The uro thought it was cancer. It was benign and I was told I had no cancer. Then several months ago I thought I had a prostate infection as I was peeing some blood. This time I saw the top Uro in Miami. The mass had come back. He removed it, did a kidney wash and prostate biopsy. Those were negative and I am 65. However, he found cancer in situ in many places of my bladder, including over the prostate. As you know CSI is a very aggressive malignancy. He put me on BCG. The second round caused lots of blood, mucous,etc. I bled everytime. He is a smart uro and kept it going, regardless of the blood. I took soda bicaronate daily to raise my urine akalinity. No sugar and nothing from a cow, dairy or meat. After the sixth round he did a cysto...negative. Then the very accuate urine test called a FISH test. Negative. Then under sedation biopsy of all the parts of my bladder..Negative. Don't believe all the stuff about the bad effects of BCG. Just do it. IT works. I wish you all the best. The news media never reports on the house that didn't burn down. BCG works on almost everyone. If you do the maintenance, it completely disappears in 84% of people.