That is good news Donna . It is so important that patients take charge of their care . I wish more would do it!

Sara Anne

Thank you, Jack. Please see my reply to Sara Anne. I will check the link you posted also.

Donna

Hi, Sara Anne,

I met with a new doc at MD Anderson and I am switching my care. What a difference it was to be at Anderson. Everyone was so warm, friendly and understanding. I never felt rushed and they answered all my questions no matter how stupid I thought they might be!

The specialist at Anderson told me he'll do the 1/2 strength but if my reactions are as bad as my 5th and 6th were then he will switch to Mitomycin, which he states he feels is less dramatic a reaction and every bit as good at fighting my TaN0M0 high grade. I start the end of the month.

It really makes a difference to be at a place and with a doctor you can talk with and as well as the rest of the team.

Donna

Donna,

Congrats on you 3 month milestone.

At BCG #28 I finally reacted to such an extent that the my two offered options were stop BCG or reduce the dose - so reduce it was The warnings of increasing reaction (for some of us) appears to be true for me.

Researcher Michael McDonnell addresses some of the non-supported "customs" of BCG in his FAQ, beginning on page 13 of the article at:

http://thomaschallenger.com/wp-content/uploads/2011/10/Mike-ODonnell-Protocol-long.pdf

Dr. Donald Lamm has addressed the question of why the "official" protocol has not been updated to reflect lower doses in a number of publications - perhaps none more to the point than within an 8 year old post on this, the ABCS website:

https://bladdercancersupport.org/forum/8-non-invasive-superficial-bladder-cancer-questions-and-comments/24923-why-not-change-the-bcg-protocol-to-lower-strength.html

We are indebted to Mike, 'mmc', for asking Dr. Lamm, reporting the response, and for his many contributions to this site.

Best,
Jack

Thank you Sara Anne! I am most comfortable now with the full explanation. That really helps.

Donna, there is no real scientific reason for the dose of BCG given. I was told that this is what was commercially available when it was first used and found to be effective. Some people never experience excessive discomfort with the initial dose and some cannot tolerate it at all. As you have found out, side effects increase as the treatments go on and the body becomes more sensitized to it. And this is what we WANT to happen.....this shows that the immune system is "kicked up" to fight the cancer. And when this happens, and the side effects become intolerable, the dose can be reduced and still be effective. I was on 1/3 the initial dose when I completed my maintenance treatments and some people finish up at 1/10th the initial dose.

Since most people are OK, at least at the beginning, with the initial dose, and since it has been shown to be effective,
that is what is used. I would wonder if the reduced dose would be as effective before the immune system has been stimulated.

Sara Anne