I joined the BCG reactor\'s club

14 years 3 months ago - 14 years 3 months ago #29263 by mmc
Replied by mmc on topic I joined the BCG reactor\'s club
I agree with you Jim!

Granted, I was a BCG dropout anyway due to severe reaction. Had that not been the case, I'd sure liked to have stayed on it though.

Given it wasn't an option for me, I am certainly glad I got the neobladder!
Even with the miscellaneous complications that I've had, I am one happy camper.

Mike

P.S. Jack: Neobladder = Bladder gone, therefore bladder cancer gone forever (as long as they get it before it sneaks into other places). :)

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...

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14 years 3 months ago #29259 by Moonerj
Replied by Moonerj on topic I joined the BCG reactor\'s club
I had 30 treatments of BCG. I did stay at full strength for the treatments.
My last 18 treatments, especially my last 12 maintenance were very difficult.
I found taking very warm baths, and a heating pad helped for the few days after treatment.
I have been cancer free for 25 months now.
Everyone reacts differently to the treatments.
I am fortunate my tumors were noninvasive low grade.
I wish you all taking treatments well.
BCG = Bladder Cancer Gone
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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14 years 3 months ago #29258 by Humpy
Replied by Humpy on topic I joined the BCG reactor\'s club
This may sound stupid, but after reading this thread, I am glad I got a Neobladder, and
got it over with, once and for all.

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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14 years 3 months ago #29233 by blb
Replied by blb on topic I joined the BCG reactor\'s club
I agree Nix - keep the fingers and toes crossed. I also e-mailed Dr. Lamm when my reaction started - his response was to reduce the amount if we returned to the maintenance schedule unless I couldn't tolerate it at all. So we shall see what the future holds.

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14 years 3 months ago #29232 by Nix
Replied by Nix on topic I joined the BCG reactor\'s club
When I started to get worse with the 22nd BCG (in a Maintenance of three) my Uro reduced to 30% then 10% It was of no use, the BCG tolerance and my angry bladder did not do well at all.
I had written to Dr. Lamm, and asked him how low of a dosage that we could go and this is what he wrote back: [i] We go as low as 1%. You can also reduce retention to 30 minutes or less.
I also sometimes give heat inactivated BCG to those who do not tolerate
live BCG.
Don Lamm, MD

On Sun, 24 May 2009 19:22:39 -0400, [/i]

My Uro said now, no more BCG, so I guess I will cross my fingers toes and eyes and hope for the best. :S


Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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14 years 3 months ago #29230 by blb
Replied by blb on topic I joined the BCG reactor\'s club
I haven't been on the computer for a while and find it interesting reading about the comments regarding BCG. I too can not tolerate it, after my 4th treatment - I woke up to swollen eyes, and the start of arthritis in my wrists and knees that took a month to come out of. I have had my regular 3 month cysto with no signs of reoccurance, but have wondered without the maintenance am I more vulnerable? We did agree that if I have a reoccurance that we would decide the best course of action at that time whether it be lower dosage of BCG or what (hoping that time never comes)
Bobbi

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