Dr. Lamm & reducing BCG dose during maintenance

• By Moonerj
• Posted October 31, 2009 at 10:39 am
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During my maintenance treatments the BCG dosage was kept at 100%. My Uro did suggest reducing the dosage due to the side effects I was having especially the last 6 treatments. I just could not get my head around this reduction in dosage. Just me.
If a less dosage works as well as the full dosage, then why isn't the original dosage less.
I could never find enough information or proven studies that back up the theory that less was as good as the initial. If less then what is this %.
With all this in mind, remember I am a big fan of Dr. Lamm.
Jack

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• By SilverGrizzly
• Posted October 31, 2009 at 10:45 am
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Thanks, Jack for your response. And yes, seeing the original studies would be really helpful. The guy writing this mentions that Dr. Lamm has more statistics from his practice than are necessarily out there in the world of medical research. But still, there must be something documenting this approach of reduced dosage.

I'll keep trying to find something published, but if you couldn't find it, I doubt if i am going to be able to either. But I'll report back of course if i do find something.

I wonder if some of this reduction in dosage is recommended to preserve the bladder from having to deal with so much BCG. A number of people on this forum have reported they eventually had to have an RC from bladder irritation from the BCG. I wonder if a lower dose would help prevent that from happening? More questions than answers, I guess... -Jan

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• By Moonerj
• Posted October 31, 2009 at 11:01 am
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Hi Jan
I am with you on this, I just wish there were more published studies on this subject.
I do believe the reason is that research dollars are being spent on finding a replacement for BCG due to the side effects of BCG, and the number of people that can not complete the treatment regime even with a reduced dosage.
Over the next few years we should see how Valstar performs which is a new refractory treatment.
There are a few other treatments in the trial stage also. Hopefully soon they will have a treatment that has very few side effects and does cure the cancer.
I honestly believe they will.
Jack

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• By SilverGrizzly
• Posted October 31, 2009 at 11:06 am
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Hi jack,
Thanks for your very encouraging and positive post about future treatments for this disease. We all can't wait for that day!

I have found one long term study looking at a reduced dosage for the induction BCG. It seems to be saying that for high grade tumors the full dose is better for induction, but for non-high grade the reduced dose seems to work just as well. Then they end by saying they recommend the reduced dosage for maintenance, but don't give any statistics. Thus supporting your contention that there isn't much out there on this topic.

Long-term follow-up of a randomized prospective trial comparing a standard 81 mg dose of intravesical bacille Calmette-Guérin with a reduced dose of 27 mg in superficial bladder cancer.
Source: BJU international (BJU Int) 2002 May; 89(7): 671-80

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• By SilverGrizzly
• Posted October 31, 2009 at 11:10 am
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Forgot to say I found the abstract for this in PubMed.

http://www.ncbi.nlm.nih.gov/pubmed/11966623?itool=EntrezSystem2.PEntrez.Pub med.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=7

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• By Moonerj
• Posted October 31, 2009 at 11:36 am
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Hi Jan
I had read this study in 2008, while I was having my maintenance treatments. Although my tumors were low grade this study is one of the reasons I wanted to stay on full rate if I could tolerate the side effects.
Although this study did say the results were the same results for maintenance for full or reduced dosage, I did not see enough proof. But again that is just me, I was not involved with a support group back then, and I was scared because of the 2 recurrences I had.
I really had no-one with similar experiences to discuss this treatment.
If I had to do it all over again, based on the experiences of several people on 2 forums I now frequent, I most likely would have went with the reduced dosage that my Uro recommended.
I envy people dx today that are able to find this site, and learn from other's experiences.
I will do what I can to get the newly dx to these sites.
I never want to see anyone be the train wreck I was during the 1st 2 years of bladder cancer.
Bladder Cancer Awareness.
In summary:)
BCG = Bladder Cancer Gone.
Jack

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• By lsh
• Posted October 31, 2009 at 11:58 am
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Hi Jan,

My doc at MDA didn't hesitate to lower the dose after I urinated every hour to hour and a half for a month after the last treatment of my first round of maintenance. After my last scope, he said something like "well you have been doing this for almost a year now. Most people don't finish the three years we would like to see." The side effects only lasted a few days with the 30 percent instead of what seemed like forever. He does have a clinical trial with a drug that works like BCG and I think somehow attacks dividing cells(aka cancer cells). If he asks me to particiapte when I have had as much BCG as I can stand, I will. Hope this helps.

Lynda

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• By SilverGrizzly
• Posted October 31, 2009 at 4:51 pm
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Lynda,
Wow, that must have been awful, having the frequency last for a month! Did they stop the treatments till that cleared or just continue on?

It will be interesting to know more about the clinical trial your uro is doing. Please keep us posted! -Jan

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• By SilverGrizzly
• Posted October 31, 2009 at 4:53 pm
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Jack,
We all appreciate so much how you reach out to help others. I too would have been an absolute train wreck without the help I've gotten from other bladder cancer people--not knowing anyone with the disease, never having even heard of the disease before my diagnosis.

And my new motto? BCG=Bladder Cancer Gone :-) -Jan

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• By darwin
• Posted November 1, 2009 at 11:50 pm
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I don't know how relevant this is to the discussion, but
I'll throw it in. My tumors have been high grade, so I
wound up doing treatments with 1/3 BCG and 2/3 Interferon. It was successful and my bladder is now
cancer-free. My Uro wants me to continue this same
treatment for three treatments every six months for the
next year and a half. He was very concerned about how
I tolerated the BCG. I tolerated it well, so he's keeping me
on the same ratio. He says that the combination of BCG
and Interferon has a synergistic effect even down to 10%
BCG to 90% Interferon, but of course there's no need to change the ratio unless I started having reactions
to BCG. My experience with the Interferon is that it
has no side effects whatsoever. Hope this helps in
some way.

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• By calypsois
• Posted November 2, 2009 at 9:01 am
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Oh, my gosh! RC . . . is that radical cystectomy? . . . from BCG? BCG could cause one to lose his/her bladder? I didn't know.
I am still having side effects 2.5 months after the latest BCG - frequent, urgent urination, sometimes with a little pain. The same pain occurs when a lot of walking (and then it can be uncomfortable sitting).

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