Is this a BCG side effect?

Just to update you on my situation. After several days of pain, it was determined that the root cause was ciatica. Although not directly related to the BCG treatment, both my Urologist and Dr. Lamb stated that the surge in the immune system might have triggered an existing condition. In any case, Dr. Lamb suggested and my Urologist concurred to treat me as if I had a reaction. We went to one-third dosage and I will only have three treatments instead of the normal six.

Dr. Lamb told my Urologist that one of his studies showed that going with only three dosages at the reduced dosage had a better results (for reoccurrence) [65% vs. 45%] than giving 6 treatments at the reduced dosage. That seems strange to me, but as we know, Dr. Lamb is the expert. Has anyone heard of this before?

I know I am being pessimistic, but if the following TURBT still finds active tumors, then I think I am going to seek that second opinion for further treatment. I have had one series of Mitomycin and two of BCG. I acknowledge that some of you had much more before obtaining positive results, but since my tumors seem to have advanced to high grade (TaG3) and I had two reoccurrences in less than six months, I’m getting a little “gun shy”. So my question: if you were going for a second opinion, where would you go? I live in SE Florida, but traveling is not an obstacle for me. We have a branch of the Cleveland Clinic not too far from my home. We have the Moffitt Center in Tampa and also a branch of Mayo Clinic in Jacksonville. I wouldn’t be averse to going to Baltimore to John Hopkins either. Your thoughts would be appreciated.

The side-effects I've had from bcg are slight (fever, sore muscles, joint pain) and they dissipate after a few days. My bladder and urethra are always a wreck for weeks though. I keep on the advil when I'm feeling the effects. I hope things clear up for you.

Steve

As we all do, we turn to our group when something happens that we don’t understand. I’m reaching out to see if anyone has had what I’m experiencing today and if so what was done. I started my second round of 6 weeks treatment of BCG after my latest TURBT found a TAG3 (high grade) tumor. Yesterday the procedure went as it had in the past and the side effects last night was the normal (fatigue, body aches, slight fever and urethra discharge). After a good night sleep I got up and was preparing to go to the office when I experienced lower back weakness that progressively turned into severe pain. So severe that it was almost impossible to stand or walk. I called my URO when his office opened. He sent me to the ER where they took x-rays of the lower back. This revealed nothing and I was sent home with pain meds and muscle relaxers. The medication has lowered the pain so it is somewhat tolerable, but I continue to suffer. My URO stated that he has never had a patient experience this type of side effect, but he said if was reasonable, that the immune system triggered an existing condition. I have had back pain from over doing sports or manual work in the past, but nothing like this.

So the question, has anyone experienced or heard of the lower back going into muscle spasms or severe irritation? I looked around on the internet and found a couple of places that stated that if you experienced back or joint pain, to notify your doctor. However, I didn’t find anything that this was a common side effect. My URO contacted Dr. Lamb’s office to consult with him. Hopefully this is something that will not stop my treatments. Perhaps going to a lower dose, will moderate the reactions. Otherwise, I really hate the thought of having to give up on the BCG.

As always, I appreciate your opinions, your experiences and support.

Thanks,

Chuck