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BCG Immunotherapy and its effects on other procedures...

3 weeks 6 days ago #60105 by Lorraineanne
Thank you for this information. Good to hear "tumor free"! Some of the stats I have been reading about recurrence are disheartening, along with the descriptors of the adverse side effects with continued BCG treatments. All frightening to me. Great that you made it through 6 + 6. I am curious what percentage of people with my diagnosis get to keep their bladders??? (non-invasive, high grade, papillary urothelial carcinoma, Toa)

8/20 tumor found, 2 TURB with stent, tumor resected from bladder, another portion lasered from ureter, Toa,papillary urothelial carcinoma, non-invasive, high grade, BCG began Oct 22,2020

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4 weeks 16 hours ago - 4 weeks 16 hours ago #60104 by Alan
There are MANY protocols. What appears to be common is that 6 are a minimum to start and then there deviations that follow. All of them have pluses and minuses (the deviations). I have seen once a month for a year after the first 6. Then there is the SWOG (Dr. Lamm) which is 3 for 3 weeks, go 3 months and repeat until 2 years are up, then 3 every 6 months to year 5 after the first 6. My URO who did study under Dr. Lamm had me do just the 6 plus more. His reasoning was every procedure involves some risk of problems....infection, scarring the urethra, etc. Plus my tumor was singular and while high grade was caught early. All he wanted for me was the 6+6. Most posters that have posted here seem to have problems with increasing irritation to where very few make the 5 year program. That is OK. Getting the first 6 plus whatever one can do after is all a plus and many remain tumor free.

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.

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4 weeks 17 hours ago #60100 by Lorraineanne
Really helpful, thank you Allan
did you make it all the way through your maintenance BCG? How many?

8/20 tumor found, 2 TURB with stent, tumor resected from bladder, another portion lasered from ureter, Toa,papillary urothelial carcinoma, non-invasive, high grade, BCG began Oct 22,2020

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4 weeks 1 day ago - 4 weeks 1 day ago #60098 by Alan
Descriptors? Go to your profile by clicking on your name. In the upper left there is an "edit" link. Pull down and then an edit your profile will show up clicking on it and the middle slide is where you can put signatures. The box to the right is room for a picture.

Travel. The first 6 treatments were not a problem. The next 6 treatments caused issues with urgency and burning. The first day and the next day I simply had to stay close to a restroom....meaning I couldn't hold the urine for no more than 30-60 seconds....and it could have just been a dribble. The fatigue I could handle. This will be a trial and error as everyone will react differently. Personally, once you hit the maintenance part I wouldn't plan any expensive trips until you know how your body will react. The weeks off you are probably OK. It is all doable just no fun.

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.

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4 weeks 2 days ago #60096 by Lorraineanne
Allan, did you still travel as you might normally do during your BCG treatments or were there times when you decided travel was unwise? (trying to plan some travel in the next few months, just started initial BCG 6 week sessions, maintenance to follow) Also, how do you get the descriptors of your journey under your name in the forum? thank you!

8/20 tumor found, 2 TURB with stent, tumor resected from bladder, another portion lasered from ureter, Toa,papillary urothelial carcinoma, non-invasive, high grade, BCG began Oct 22,2020

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1 month 5 days ago - 1 month 4 days ago #60067 by Alan
Fatigue! The problem is at 12.5 years ago I don't remember how long and when except I was tired a lot. I still worked and moved on with my life each day. It wasn't that bad!

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.
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