Remember, you are not alone in this. We may be separated by distances, but we are here in spirit and support. Please continue to share the good, the bad, and the horrid ; as it will help everyone.
For me I didn't see any negative stuff for a long time and credit I needed to share my pitfalls so that others would feel they could open up as well.
Stay safe out there.
Thanks very much for this. I will check out the articles. Lesser effects for me with each passing day, but it has been 7 weeks of side effects. I will consult with Uro following my next cysto scheduled for early Dec. Based on those results I will either dial down dosage of BCG or stop it, at least for a while.
Very helpful to have this info and this support, at least I know I am not the only one with side effects.
I too suffered from side-effects that I haven't read too much about on this forum. I have an earlier post listing out the issues I was suffering.
I suggest you look at that post as there were a couple of journal article links posted in a response that provides information regarding the lower dosages and ultimate outcomes (percentages, etc.). The dosage reduction is a pretty standard way to ameliorate the side effects, but is not a guarantee as this is an immuno-therapy and your body may just be maxed out.
I agree - onco docs trend to treat the disease, not the patient .
I went and saw another urologist after we stopped my treatment to get a consult. She was excellent and we discussed a variety of ways to possibly address the interstitial cystitis. She explained a number of treatment options and left the decision up to me on how to proceed. She also recommended staying with the oncologist for the follow-up cysto's as he has 'been inside' and knows what he is looking at. She told me she has his number on speed dial and would contact him if needs be to ensure I was getting what I need.
I have opted to wait on addressing the cystitis as the symptoms have been steadily resolving themselves (it has taken about 7 weeks since my final BCG instillation). But am thankful to know there are a host of treatments to address the problem.
Thanks for sharing your experience, as I think it helps others to know what the treatment might be like.
Please continue to keep us updated on your journey.
Thank you very much for the thorough and informative replies. The replies are consoling as well, as your experience validates mine and motivates me to seek further information.
My Uro seemed unaware and wary of half dosage, a suggestion I made after session 10; he reluctantly agreed to my choosing every other week rather than weekly for the last BCG (#11 and 12) , suggesting to me that he may not know as much as I had hoped. Nor is his focus where I need it to be. Uro seems to be a first rate surgeon with little interest in the day to day oncological health of the patient, and so I do a lot of research. Your mention of Dr. Lamm is also helpful. Am reading his research now.
THANKS for the work and peer support that make this site so helpful.
Sorry to hear about your issues, Michael. You have gone a lot farther with BCG than a lot of patients do. Since you have already had so many, I would assume that you have gotten the response necessary to "kill off" the cancer cells. My urologist told me that I was one of the few of his patients who went the entire series!!
The dose can be reduced: I was on 1/3 by the end and Dr. Lamm (one of the pioneers of BCG treatment) has said that even 1/10th can be effective.
However, since your side effects are truly affecting your life and job, and since you have done so many, I would seriously consider your uro's advice and just quit. At this point, it will make little to no difference in your risk for recurrence
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
3 weeks 5 days ago - 3 weeks 4 days ago#60114by Alan
Great questions that only you can answer. I add that you probably have revved up your immune response to where if your following cystoscopies show nothing than it might mean stop! You can always resume later. There is no "magic" number, or "perfection" on the instillations. At the same time perhaps a lower dosage is in order and has been done with many. 1/2, 1/3, 1/4, 1/10 doses all have mentioned and used. What you don't want to do is damage your bladder by too much.
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.