Update and Question

5 years 1 month ago #56972 by Ray6701
Replied by Ray6701 on topic Update and Question
Well, I was diagnosed with BC back in 2011 and had one recurrence in 2015 but since than have had maintenance treatments successfully. Initially I handled the BCG and sometimes minomycin really well. Lately the treatments have been much more difficult. Being that I have had these treatments since 2011 has there been any studies done on long term effects for bi-yearly treatments for over 8 years?
Thanks

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9 years 9 months ago #46450 by sara.anne
Replied by sara.anne on topic Update and Question
I am now on my 6th year....after an initial diagnosis of CIS. Please be sure that you do the maintenance regimen for BCG!!! Exams every three months for two years, then every six months up to five years, and yearly thereafter forever is the protocol!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Ray6701

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9 years 9 months ago #46449 by Ray6701
Replied by Ray6701 on topic Update and Question
Thanks for reaching out to me. We did not do BCG maintenance after the first series, I had a Cystoscopy done every tree months for the first year and after that every six months. The high grade this time was CIS.

Right now feeling very confident that I will be able to keep the bladder and that is my goal for now.

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9 years 9 months ago #46447 by sara.anne
Replied by sara.anne on topic Update and Question
Hi Ray, and Welcome. As you have discovered, we learn almost more from each other than through the usual channels!

Did you have maintenance BCG after your first series? That has been shown to really increase the effectiveness. What is your "high grade?" Is it CIS?

Wishing you the best of luck...

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 10 months ago #46444 by Ray6701
Update and Question was created by Ray6701
Glad to have found the website! I was diagnosed with Bladder Cancer in 2011 and after the surgery I received BCG treatments. Not knowing what to expect back then I was a little unsure of how this process would work out but other than the usual side affects I handled the treatments well and felt very lucky that the treatments were not at all like other Chemo treatments.

I had no more cancer until April of this year when I was diagnosed with high grade invasive cancer this time. I feel very lucky I was able to go almost three years without a reoccurrence. I just completed my 6th BCG treatment this time around and I was on line looking up information on the Lamm protocol for BCG treatments when I found this site. I already found quite a bit of useful information on here Just want tot say hello and thanks. Looking forward to another three years cancer free hopefully.

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