There are several things that we need to be aware of when looking at this protocol. First, there are no scientifically valid clinical trials that have been published in peer-reviewed journals that indicate that this would be an effective treatment for CIS. Second, the primary drug mentioned is a dog de-wormer (I am not aware that bladder cancer is caused by a parasite!) PLEASE discuss this with your urologist before becoming involved with it.
Duhhawaiian, am I correct in believing that you had 6 BCG treatments? As you have read, the usual protocol is to follow this with multiple maintenance doses....After my induction I had BCG once a week for three weeks every three months for two years. As Alan suggested, you may want to get a second opinion on your treatment options from a urologist who specializes in bladder cancer. BCG is the treatment of choice for CIS in the bladder and you have not had the recommenced doses. I don't think you are quite at the place where you can state that BCG failed.
Best of luck to you
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I saw a webinar by Dr. Ashish Kamat of MD Andersons, who is one of expertise for bladder cancer. He showed a study which showed that for CIS, 6 weeks induction BCG treatment alone had 55% complete response (no recurrence, no progression). The group who did not have 3 week maintenance course 3 months later, the complete response rate went up 69%. The group who had the 3 weeks maintenance course had the complete response rate went up to 85%. It showed the durability of BCG treatment such that our immune system keep responding to BCG even after BCG treatment.
2. AUA had come up with the definition of BCG unresponsive, which is defined as those who had an adequate BCG treatment but there was recurrence with high risk (HG and CIS). Those with BCG unresponsive will not benefit with further BCG treatment and should be offered alternative treatments including removal of bladder and other bladder preservation treatment such as BCG +Interferon, Gemcitabine + Docetaxel sequential treatment, other intravesical chemotherapy like Gemcitabine, immunotherapy, etc. The adequate BCG treatment is defined as 5-6 weeks induction course + 2-3 weeks maintenance course. So, in your case, you have not been treated with adequate BCG treatment. I would not know what the pathology report said from the initial TURBT. But if I recall correctly, if the recurrence after 6 weeks induction course is T1HG, it is considered as BCG unresponsive.
I would seek for a 2nd opinion from a reputable cancer center if possible.
I don't know what would work best for you but I can tell you my personal experience. I have CIS and originally had the 6 week induction
phase of BCG. Had the follow up cystoscopy and cytology. They were suspicious. Had a turbt and biopsy showed CIS. Dr said that does not necessarily mean BCG failed for me because on some patients it takes a little longer to work, I believe he said it could still work up to 6 month's. He did another 6 week induction of BCG on me. My next three cystoscopies have been negative. Last two cytologies have been negative. Waiting for the results of latest cytology that was done on 2/4/22. Bottom line is so far staying with BCG has worked for me. But your decision will be between you and your doctor. Each of us has unique circumstances. Fortunately my CIS did not spread all over the bladder. It was just small area's on the dome and one side. My doctor does three weeks of maintenance BCG after my quarterly cystoscopies as well. So far I have had 18 BCG treatments.
I've read that Gemcitabine can be an effective treatment as well.
Good luck on your decision and keep us posted! We all learn from each other.
Obviously, recurrences are not good. Trying another agent has its merits. At the same time, BCG sometimes has been done with interfuron added on recurrences. Ask further probing questions of why your URO prefers one or the other? I have to admit, I don't know what I'd do as both applications are good. Perhaps someone with more experience will chime in.
Another possibility is a second opinion.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.