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Re:Maintenance BCG begins ... differences

5 years 3 months ago - 5 years 3 months ago #46548 by Alan
Raider,

Do not despair. 22 treatments probably have ended any comebacks. While Dr. Lamm's protocol is widely followed there are others that do this differently, including my URO-who studied under Dr. Lamm. Mine does 6 weeks on 6 off and that is it! His rational is many. Every time you cath to drip BCG there is a risk albeit it is small but there. Infection, irritating the urethra, BCG reaction etc. My yearly checkups include STRONG antibiotics as we somehow stir up bad bacteria-somewhat similar exposure when you are instilling BCG No one knows for sure what is best for each case as every one is different and willreact differently. Just my two cents worth.

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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5 years 3 months ago #46544 by raider
I made it to 9 BCG treatments, after the 9th (2 weeks ago) I was in very bad pain on and off. severe burning during urination and at times curled up in a ball in pain for hours. If I did anything physical it really made it worse, horrible urethral pain. I believe that pain happens especially when the bladder is empty because the damaged/irritated bladder lining rubs against each other.

I was on 1/3 dose on treatment #9, we skipped last weeks treatment and yesterday we just did the interferon alone. I'm not sure that I will be able to us BCG treatment if I get clear on this round. We will see where I'm after my next biopsy. I would like to try 1/10 does as maintenance if I can take it, my Uro is not sure that I will be able to.

I wish I could have made it to 22, best of luck to you!!

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5 years 3 months ago #46541 by Nix
Hi Kathy,

I also had 24 BCG and my bladder was really "beat up" after all that! I did have a lot of bladder pain,(took a long time to heal:( ) but I am happy to report that I have been cancer free for over 6 1/2 years!
My Uro did not cut back on the BCG until the 21 instillation. He used 100% BCG from number 1 - 21. Was it the bladder pain or another problem?
Once my bladder healed everything else fell into place. How long ago was your last BCG? Did you notice during your cystos how red the lining was? It just takes time to heal.

Nancy

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

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5 years 3 months ago #46458 by kathydtilton
Hi .my first time on this site
I love reading the blogs. I have had 22 bcg treatments and I felt terrible the whole time. Trying to find out if this is normal. I feel like it has taken its toll on me. Thanks for feedback

Looking for how you have felt during bcg treatments and what it has done to your system. I have has 22 treatments and I know very little about the cancer

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