I did contact Dr Lamm several times through the two years, via email. You are right, he always answered my questions and concerns immediately. (I don't think he answers individual emails any more)
My ex Uro, did drop last three maintenance to 50%, 33% and then 10% with no avail. The reaction was way beyond what it should have been. With my bladder taking so long to heal, I think I have reached my limit with BCG. I am happy I could go to 24 BCG washes before all my problems. Hopefully, this will take care of the CIS.
This bladder cancer not a race, it is a journey, isn't it
Good luck with your BCG, keep us posted.
Thanks to both of you. I am at work today because it doesn't matter where I am-I am still very uncomfortable. Atleast here I won't concentrate too much on it and just make lots of trip to the bathroom. After I asked my doctor to cut my BCG to 1/3, thanks to you all, the treatments are barely bearable but a little better. But tremendous pressure still there and of course now there is pain. So on Monday when I am feeling better it will be harder to go back in for more BCG. And only 2 more treatments and he will let me rest for 6 months so I can enjoy spring and summer. And I am releived and glad to be able to talk about it with you all.
Thank you Nancy. Please don't think anything you write about your symptoms or experiences are too gross. We are all going through this in one fashion or the other. I recently had to cut my dosage of BCG to 1/3 and reduce the treatment from 6 to 3. According to Dr. Lamb, reducing the number of treatments from 6 to 3 has more beneficial results (64% to 47%) for reoccurrence. My Uro spoke with Dr. Lamb about my situation and he recommended the reduction. According to Dr. Lamb, in many patients, after three treatments there are limited good effects because of the toxicity of the virus, etc. Since Dr. Lamb is suppose to be the leading authority on BCG therapy, I’m putting my faith in his research. You might have your Uro contact Dr. Lamb in your situation and see what he recommends. My Uro had no trouble contacting and getting a return call from Dr. Lamb. Again, thank you for your reply and explanation.
dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
Unfortunately, there isn't any clear evidence to say this is exactly what you have - "nerve sensitivity". But with all the problems I had after my 24 BCG, and process of elimination, this is the conclusion of all the doctors. I think I had some problems with the nerve endings after my BCG in Dec 08. That did heal over time (about 4 months). But my Uro just said that was the way my bladder reacted to the BCG. So in May we continued a three maintenance series of BCG. After my last one, I was in so much pain and pressure, I could not leave the house to go any where. My Uro tried an antibiotic, and a 5 day steroid pack too with no relief. Changing doctors, to one who specializes in BCG (@ Moffitt) we decided I can not have anymore BCG and the nerve damage does seem to be healing. I did go to my GYN and Gastroenterologist, because of the location of the pain, and both came to the same conclusion "nerve senitivity in the bladder. In the past months the pressure was all day, and spasms too. I hope this isn't too grafic - Now I only get pressure at different times. Even when I have to urinate I have a painful pressure in the bottom of my bladder, and after I urinate it goes away.
I know everyone reacts differently to BCG - but so far it has done what it was suppose to do. I wish my first Uro had dropped the high dosage of BCG right after the original 6.
My Uro said he has seen this a couple of times, so I guess that is what I am dealing with.
I hope this helps any questions you might have, but I can only explain what my symtoms are and the conclusion my doctors came to.
That is interesting about the nerve endings. When I had my last cysto 2 weeks ago he saw an ulcer which I hope is an explanation for a soreness with my bladder. This cysto was the first time it was ever painful. I had never even been uncomfortable with one of which I spent 5 years having them from quaterly to semiannually the last year and then it came back after 6 years. Anyway go to get a BCG this afternoon after a break since Christmas, I am dreading it as they are worse now than the first 2 years of them. ANd I wonder what it is doing to the ulcer. But maybe all this difficulty is nerve endings. I don't feel as stoic as I used to. I would also like more explanation of nerve ending. We just have to hang in there.