I was diagnosed 1.5 years ago with high-grade non-invasive urothelial carcinoma - two TURB's to remove it all.
Am in a clinical trial getting the Tokyo version of BCG - the initiation phase (6 instillations) went fine.
Am now in the midst of my 3rd round of treatments (week 1 and week 2 have been instilled)and will get the 3rd instillation on 30 SEP 2020.
I am in so much pain from this I don't know if I can continue the protocol.
From the previous rounds I tolerate the 1st instillation fine and am recovered by the next morning.
After round two (which is where I am at now) has taken between 1 and 2 weeks to recover.
My third rounds have taken about 5 weeks to fully recover.
I have been provided Myrbetriq and Oxybutynin for bladder spasms as well as Belladonna & Opium suppositories, none of which are doing much to control the spasms. A heating pad provides minimal pain reduction, but is causing a heat rash.
I have to pee every 15 - 30 minutes (so sleep is not happening).
I have gotten mild relief from acupuncture (but have to pay out of pocket at $100.00 per visit).
I do not think I can continue treatment and am looking for insight from others, I have yet to see anyone reporting similar difficulties - but feel there must be people who are struggling as much as I am.
Right now all cystoscopies and cytologies have come back clear of cancer - so I am in a good spot.
Any info from those who have been unable to continue BCG treatment and what was the alternate course would be most beneficial.
Sorry to hear about your issues. Sort of "been there, done that" although not as severe.
First thing, you need to put yourself first. You are in a clinical trial and "they" may feel the need to maintain the prescribed protocol. You need to make some changes!! One thing, with the usual BCG infusions, it is not necessary to get the full dose. I was down to 1/3 by the time I finished the instillations, and it is possible to go down to 1/10th if necessary.
Second, if you feel that you REALLY do not want any more BCG that is your decision to make. From what you described you have received not only the induction phase but several maintenance treatments. You should have received most of the benefit of BCG and would probably do fine if you quit now.
If you are unable to complete the series in the research study, you are not a "failure" but have provided information that the researchers need to know.
Best to you
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I know I am the one in control here, I am a research scientist myself, so I also understand that regardless of my involvement outcome the information gleaned from my participation in the clinical trial will be beneficial in the long run.
I shall play it by ear for the next couple of weeks - my brothers and their wives are all very supportive and I've been chatting with the nurses in my family regarding how I might proceed.
Again, I am hopeful that others that are struggling might have some further insight.
There are many protocols out there. My URO, who studied under Dr. Lamm in San Antonio 40+ years ago, had me on a total of 6 weeks on, 6 off then another 6. I have seen 6 plus 3 weeks every 3 months for 2 years then every then 3 weeks on 6 months out until 2 more years have passed. I have seen once a month for 12 weeks. I am not sure anyone has an optimal strategy other than to say you have attacked it.
The points is you have done the initial induction stage+ so, as Sara Anne posted you havea good floor. Not worth ruining your bladder in the process. Let us know what your follow up might be as we all learn bits and pieces as we go.
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.
Glad to know someone is on the clinical trial. Did they use 50 mg per instillation for the 6 weeks induction course?
Dr. Shashi Kamat, a well know figure in the bladder cancer community, who is the professor and clinical urologist at MD Anderson in Texas , Kamat says that the duration of treatment with BCG seems to matter more than the dose of the therapy. The patients who received 3 years of the full dose had a 5-year disease-free rate of 64.2% vs 58.8% with 1 year of maintenance therapy. When a 1/3 of dose is used, the number changes to
62.6% vs 54.5%. So, it makes 6-8% difference in recurrence rate between 3 year vs 1 year. I have listed the link below.
So, you may want to ask your urologist to see reducing the dose will mitigate the side effects you are having. The dose reduction can be 1/3 or even to 1/10 and continue with 3 year protocol rather than stopping after one year. I recall 1/10 dose maintenance works as well as pointed out by Dr. Lamm.
I understand there are already over 750 patients on the trial, but still needs more people to get to 1000 patients. I think medical communities know that Tokyo-172 strain or any other BCG strain available in the world should give comparable efficacy with comparable side effects as they all come from one original strain which was developed at the Paseur Institute but WHO says each stain possesses different characteristics.
Merck website says each vial come with 50mg wet weight. Tokyo-172 strain which is manufacture by Japan BCG corporation comes in 40mg and 80mg. The company website says usually 80mg is instilled and administered 8 weeks.