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Will have my fourth instillation of BCG tomorrow at 11 am. Question-

2 years 5 months ago #53215 by dieseldoc
Donna
Ask to speak to your doctor next time your in there! If you are having bad side effects he can and should reduce the dose. Don't just rely on the nurse, if she doesn't answer your question to your satisfaction ask for the doctor.
Good luck!



Gary aka Dieseldoc

T1,NO,MO battling bladder cancer since 2005
The following user(s) said Thank You: DonnaD

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2 years 5 months ago - 2 years 5 months ago #53214 by Alan
Donna,

You ask the $1,000,000 question of how many and how often. The best guess I have read is 6 is how this originally was done and packaged. All I know is this works. For sure 6 seems to be good as a start. Then most have a maintenence schedule of 3 every 3 months for awhile graduating to 3 every 6 months and eventually a year. One very respected Dr. Herr of I think Sloan Kettering (now retired I think) did just 6. Mine did 6, waited 6 weeks then 6 more figuring if that didn't do the trick then a cystectomy was next. He theorized this as mine was small and caught early plus the risk of complications are there on every visit. There are more and different protocols.

It really sounds you are on a normal plan. I also guess a scope will be done when you are done. Anything earlier is meaningless as your bladder is probably in an unreadable/angry mode with inflamation from the BCG.

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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2 years 5 months ago #53210 by DonnaD
My doc's nurse does my instillation. I asked her this question last week and she did not really answer it for me. So, I am going to post the question here. How will we know if I will need 3 more instills and/or how long to wait. Her answer to me was the doctor will tell me at week 6 but he will not be doing a cystoscope. If he doesn't do a scope then how in the heck does he know if I should have 3 more treatments. This just doesn't make sense to me.

I also reported horrible side effects and was told to go to ER if and when temperature reaches 101.

I'm wondering if I'm really getting the best care? My doctor is affiliated with MD Anderson but he practices out of a nearby hospital and not out of the MD Anderson Clinic in my city.

Thanks, you all. I know one or more of you will have an answer to this question. God bless and take care. I'll be on to week Four.

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