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Lowered dose BCG - so far so good

9 years 1 week ago #31833 by Moonerj
Hi Ann

I hope the next 2 treatments are not too hard on you.
I finished my 30 treatments all at 100% but was because I was too stubborn to listen to my Uro and not belonging to a support group and not aware of Dr. Lamm's proven trials about reduced strength. It took me about 10 months to fully recover from the last treatment. I guess my bladder saying he had had enough BCG.
I have a friend who was TA High grade who has chosen to do the complete 10 year maintenance as per Dr. Lamm's long term protocol. He is now entering year 9 of treatments, now at 10% BCG and is still cancer free. He says the same as you, the 1st treatment really only some burning the day of and then the 2nd and 3rd treatment, urgency and spasms and fatigue.
I wish you all the best and the next 2.
BCG = Bladder Cancer Gone
Jack

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

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9 years 2 weeks ago #31830 by mmc
Great to hear Ann! Hope it stays that way for the series.

As Nancy said, it can go even lower if needed without evidence of reduced efficacy. As long as there is some reaction, it is doing what it's supposed to do.

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 2 weeks ago #31828 by Nix
Ann, I am happy your Uro cut the dose of BCG. How many have you had so far? After 19 @ regular strength, then two @ 33% - then 10% and finally 1%(Dr Lamm said 1% will work as long as Bladder reacts) Well Betsy Bladder is still reacting - for the last 12 months! It has improved somewhat, but after all the scans and tests, they believe it is "nerve sensitivity" since I am the one dealing with it every day - I call it nerve damage.
I do feel better reading your post about 27 BCG is now the protocol, because I had 24 and can't have anymore.
BCG sure did the trick so far for my CIS - 2 yrs 7 months out - I just can't wait until I have a pain free day :)
I will keep my fingers, toes and eyes crossed all goes well for you.

Nancy

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

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9 years 2 weeks ago #31827 by pemquid
After having had a lot of pain and fever with my last round of maintenance BCG instillations last October-November, uro and I decided to try dropping to 1/3rd dilution for my next round. I had the first done on Thursday, and so far so good--no symptoms at all. They had me take Vesicare 2 hours before (to try to reduce any cramping/spasms) and another dose of it the next day. I'm hoping all goes well for the next two weeks; I'm not counting my chickens yet, as last time my strong reactions didn't start until the 2nd and 3rd weeks.

But, for any of you who've had BCG reactions, the dilution may do the trick, and the literature suggests it's just as effective clinically. You can dilute even more than 1/3rd, down to 1/10th I believe.

As a side note, the nurse told me that the new protocol they are using calls for 27 total treatments (down from 30); that's the first 6 weeks induction plus the maintenance thereafter (the Dr. Lamm protocol).

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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