BCG adverse effects

2 months 1 week ago #61464 by Alan
Replied by Alan on topic BCG adverse effects
Sensei,

 While it is rare, I have an acquaintance go through almost exactly what you are going through several years ago. It took him 18 months to finally get past this. I know this is not what you are looking for and am sorry to read about it. Personally, I might try and get help with a second opinion or a big university setting as someone might have a good option. As you have discovered, BCG as a good drug but, can still cause problems.

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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2 months 1 week ago #61463 by Sensei
BCG adverse effects was created by Sensei
Good morning folks, I am new to the forum, please excuse me if I make protocol mistakes.
I was diagnosed with "In situ" high grade bladder cancer in Sept. 2020. Oct. 2020 had my first TURBT to remove cancer. Dec. 2020 began 6 rounds of BCG initial treatments. April, 2021, another TURBT to biopsy bladder and verify situation; very inflamed but no cancer. BCG appears to have cumulative effects, pain, urgency and frequency of urination, burning, everything seems to get worse with each treatment. May and Aug. 2021, received 3 maintenance treatments each time, cannot recover from the effects...everything just gets worse...but, no cancer. My doctor decides (and I agree) to cease any further treatments but closely monitor with cystoscopy.  Side effects are not getting better. Dr has tried different treatments to ease the discomforts/pain, to no result.  I was wondering if anyone else is going through this kind of effects from the BCG treatments. My doctor appears to be dumfounded by this and says that this is not the norm.  I am grateful to be cancer free, but honestly, the current situation is truly bad; I never know when I will need to go....sometimes 5 minutes apart to as long as 1 hour between urinations. As you can imagine, I don't get much sleep, just lots  of naps during the night...not quality.  Is anyone else out there going through something similar?  Am I an oddball case?  your responses are appreciated. Thank you.

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