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9 years 1 month ago #28137 by mmc
Glad to hear it Sara Anne. I misunderstood and thought he was pushing for going back to higher dose.

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...

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9 years 1 month ago #28133 by Leigh
I take my hat off to all of you having BCG, I read of so many struggling with side effects...

Wishing you all the best sara anne...

Leigh

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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9 years 1 month ago #28130 by sara.anne
I think I gave the impression that my uro was insisting on going back to the higher dosse. That was just part of our discussion, including giving me the option to quit altogether. We have discussed Dr. Lamm's protocols several times. But, as my uro says, there is no way to know what the proper dose is...what we are given just happens to be the way it comes from the supplier!! Lamm does his maintenance at 1/3, which is an easy division since the stuff comes in 3 cc amounts. I WILL be at 1/3 dose next week.

So far (three days out) I am having no more than the usual...
fatigue, some burning. I CAN do this.

Thanks to everyone for their help

SA

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 1 month ago #28117 by mmc
Stick to your guns Sara Anne!

Dr. Lamm says the lower doses (even as low as 1/10th) do NOT show lower efficacy.

I don't know WHY uro's insist on going with the higher dose.
It is true that those with reactions teand to have better outcomes, you don't want severe reactions if it can be avoided without a higher chance of cancer coming back.

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...

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9 years 1 month ago #28106 by Alan
Sara Anne,

Be strong with what you feel! Everything I have read that cutting dosage won't affect it's efficacy (is that the correct wordage)? After 6 on, 6 off and 6 on my URO just has me on peeks and cytology but, I know if I have to do anymore, I will request weaker doses as the 11th and 12th instillations were becoming hard to handle. I was voiding every 15 minutes for 12 hours among the other side effects.

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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9 years 2 months ago #28102 by Nix
I don't blame you Sara Ann. I had to put my foot down (probably too late) with my ex Uro, and by the time he dropped the bcg dose down - too late, my bladder was so injured from the BCG high dose, I had BCG Cystitis. Not something you want to experience. You know your body better than anyone. Only do what you feel comfortable with.
I have my 2 yr cysto tomorrow, with my new Uro @ Moffitt, so I am very nervous today :woohoo:
Bill Jr.-I have emailed Dr Lamm serveral times and get a response within a few days.
This email address is being protected from spambots. You need JavaScript enabled to view it. - he is terrific and has helped a lot with my questions and concerns with BCG.

Nix

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

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