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Started Maintenance BCG!
Posted by Bill Jr on September 12, 2009 at 1:20 pmStarted Maintenance BCG (#7) this Thursdday. The aftermath has been the worst yet. Pain was almost unbearable Thur-afternoon and all day Friday. My baldder feels like it’s full of burning-gasoline and urinating is horribly painful. I am on Vasicare, the med that turns your unine orange (?). They are no help at all. I had another med for pain, “Balladonna/Opium Suppositories” which I took, and it did stop the spazams, but no real help for the pain.
Bleeding, well I was passing clots as big as quarters, and you know that blood is an irritant to the bladder. At this point I am considering stopping all further BCG-treatments.
62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)Melodie replied 15 years, 5 months ago 5 Members · 7 Replies7 Replies-
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. :angry:
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 !!!!!!! :woohoo: :woohoo: :woohoo:
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright:blink: 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 :) :P :) 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 :S :angry: Get my drift!
62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)GuestSeptember 13, 2009 at 5:20 pmBill…read these
http://blcwebcafe.org/bcg.asp
and……go to side effects and interactions
http://www.rxlist.com/theracys-drug.htmdraw your own conclusions.
PatHmmm. 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
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.:( 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!
62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)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
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007Bill,
Yikes! That certainly sounds awful. Are they doing full strength? You may be able to go way down on the strength and not have such severe side effects.
Dr. Lamm says it can get really low strength without any evidence of decreased efficacy.
You might discuss that with you uro prior to making the decision to stop altogether.
I sure hope you feel better soon!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
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