Started Maintenance BCG!

Bill,

Yes, I get it, sounds like politics as usual. But in this situation, it's the squeaky wheel that gets the oil. We cancer warriors so very often have to be a royal pain in the butt to get the attention and care we need. So be it, if that is what it takes.

So glad to hear you are being so direct about getting your needs met. YOU are the customer! Considering how much money we are charged for bladder cancer treatment, we should have no qualms about demanding that we be listened to and respected for our opinon. We are the ones going through the turmoil, the pain, the disruption to our lives...while for the medical people, for them its simply all routine...so it's up to us to make ourselves heard as individuals.

Go, Bill, GO !!!!!!!

Called Uro's office today asking that the rest of my maintenance BCG's be cut to 1/3 dose or less (as suggested by Dr. Lamm). Talked to what is called the "phone-nurse" and she said she would pass the request on to my Uro. I also said politely, that if they would not go to 1/3, that I want to cancel all future BCG-treatments, except the every 3-mo Cysto's.

If, and I say if, I hear back I will let you folks know.

_____________________________
Wife is an OR-Nurse and Mgr of OR's & PACU at one of our local hospitals. She cornered my Uro, a while ago, and explained my request for BCG-dose reduction. He agreed to reduce the dose and said he would talk to the "NP" that administers BCG for his office PTL. It was either dose-reduction or NO more BCG! She said I had contacted Dr Lamm about dose reduction. My Uro said "Yea, Don's a smart guy"!


It's really tough living in a small city, where all the Uro's are out of the same office, and when the Corporation that owns our 2 hospitals, also owns the Uro's practice Get my drift!

Bill...read these
blcwebcafe.org/bcg.asp
and......go to side effects and interactions
www.rxlist.com/theracys-drug.htm

draw your own conclusions.
Pat

Hmmm. See your FP about what?

If you don't have a UTI (seems like you probably wouldn't after 4 weeks of antibiotics) then what is she suggesting the FP would be seeing you about?

There is some truth to the effects being indicative that it is working but it doesn't have to be as severe as you describe.

You might want to use Dr. Lamm as a reference point when asking about the reduced dose. How about saying, "I want the reduced dose, and if you need me to sign something saying it is against your advice, then fine I will sign it."

Based on questions and answers to Dr. Lamm (some from me and some from others) I have the feeling that the dose they normally use is WAAAAYYYYY more than needed but there is not money to do research at lower doses. My guess is that if they had lower doses from the start that there would be far less people failing BCG treatment (as I did) with an even better record of non-recurrence than there is.

There are some indications that the lower doses have an even better efficacy but not enough research to prove it.

Mike

The "NP" says that bleeding is completely normal and not to be concerned. Secondly, she said since I just came off antibiotics for 4-weeks, there could not be an infection involved, that maybe I should see my FP-Dr (go figure:S ). She in my opinion is a lost cause. In the room, dump in the BCG and out of the room in 6-min).

Got the BCG Thur, today (Sun) bladder is sore (about a 3) and I feel like I have a "nail" stuck in my prostate (about a 3)and still burn to pee (no bleeding this AM). The NP said the worse the side affects the better the outcome?

I will check Monday, with reducing the mix to 50%, but I know they will not be receptive to it!

Hi Bill

Sorry to hear of your problems with the side effects.
Have been checked for an UTI?
I also found the maintenace treatments had more and longer side effects. But I would get that blood clots checked by the Uro. As Mike has stated you can get the doseage of BCG reduced.
All the best,
Jack