I had the same problem with bleeding my first 6 BCG did not work so Interferon was added it was after my doctor had taken many biopsies at one time the bleeding started in the end had to go back in hospital and let them cauterize all the places he had biopsied. the Interferon added to the BCG worked for me for a while. I also had to keep missing my treatments also came home with cath so the bladder could heal. I spent 4 years being treated with BCG and Interferon every 3 months after reading on here most people just get it every 6 months for maintenence.It has shrunk my baldder kept the cancer contained in the bladder but scared the bladder so bad its now of no use. Will have it removed March 6.
Good luck if you can tolerate the BCG maybe it will help you.
Jeff: I hope you get back on schedule yourself with the BCG, and that the bleeding doesn't prohibit you from finishing your series of treatments. Good luck.
Wendy: I, too, have wondered if the bleeding is a result of two TUR's (the second of which was to find out why I was still bleeding four weeks after the first), the two BCG treatments which followed the two TUR's, or a combination thereof. I've asked my DR about BCG + Interferon, and he said if I'm bleeding, there's no amount of BCG he wants to instill, whether with Interferon or not. He is encouraging me to be patient, with the goal of getting through all six BCG's, stating that there's no hard data indicating that I'll realize a less desirable outcome by spreading my BCG's over more than six weeks. I'm just thinking ahead to the posibility I won't be able to continue at all, and have become a little depressed. Next Monday (02/12/07) was to have been my fifth treatment, but as it stands, it will only be my third (if I can even go). I'm still bleeding today, so I'm not holding out any hope.
I'm sorry to meet you under these circumstances but welcome here. Your doctor is prudent to postpone BCG if you have bleeding. But...what is causing it, the TUR of the BCG? I guess the BCG because you didn't have bleeding when you started. Some people cannot tolerate BCG at all....I hope you're not one of those.
I wondered if there was also a papillary tumor along with the CIS? It's rare to have primary CIS, it's almost always concurrent with more common tumor types.
Is your doctor very experienced with BCG and bladder cancer? If not, maybe a second opinion from a uro-oncologist is an idea.
CIS is tricky, there are other treatments besides BCG but none that are as effective. I think the second best option might be BCG+Interferon, it's BCG low dose. There are a number of intravesical chemo drugs that are used, most commonly Mitomycin C. There's a lot of info on the site under 'superficial blca"
I'd say contact Dr. Michael O'Donnell at U of Iowa, he's been working on new protocols (including the IFN+BCG one), and knows a whole lot on this subject.
Your could get advise from him and then bring it to your doctor. I know many others who have done this...
I hope things clear up and that you can proceed with your path.
This is my first post, and it relates to the fact that I've continued to have blood in my urine since my second BCG treatment. This fact has caused my doctor to refrain from admistering my third treatment for two weeks now for fear of sepsis. I'm disappointed that I'm "off schedule", and concerned that if the bleeding doesn't stop, I'll never get to proceed with the BCG treatments.
My first TUR (11/20/06) returned a dx of CIS. Continued bleeding from that biopsy prevented my starting the originally scheduled BCG regimen (12/18/06). A second TUR was performed (12/13/06), which returned the same CIS dx, and the Dr. stated since he knew of the CIS from the first TUR, he was more "agressive" in removing the affected area (2.5 x 2cm) this second time around, resulting in "clean edges". I was sent home with a Foley catheter for five days to facilitate healing, and was able to begin BCG four weeks later (01/16/07). I had no side affects, and went to my second BCG (01/22/07). I've had drops of blood at the end of the stream of urine almost every time since then and occasional small clots. A urine specimen and culture shows no infection.
Has anybody had a similar experience of continued bleeding? If so, were you able to resume your BCG treatments? If not, what alternate treatments should I seek? Logic tells me that a reduced dose of BCG is not the answer due to the continued posibillity of sepsis. I want to avoid a cystectomy if at all possible, but the thought of it has me a bit down for the past three days.