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More Information About BCG Side Effects - February 21, 2009

Posted May 07 2009 9:24pm 1 Comment
I try to watch pretty closely what people are searching for when they hit this blog. In the past few weeks the sources have been pretty evenly split betweenGoogle,Wellsphere, andBlogCatalog, with a few thrown in fromCancerCompass. One thing that most have in common is that you are searching for information on BCG symptoms, side-effects, and dosages.While I am done with BCG until September, I am still experiencing minor side effects from the last series, which "ended" ten days ago. Here is a summary of things that have happened to me:

During treatment: Burning sensation, urgency to urinate, abdominal cramping, backache in the lower right side (below the kidney), soreness and burning in the bladder and urethra, dribbling after urination, and the specific side effects described in mybackup page.

1- 2 Weeks after treatment: Mild abdominal cramping, soreness in bladder, burning in urethra, urgency to urinate with VERY little warning plus difficulty starting, minor dribbling after urination.

Up to 6 - 8 weeks after treatment: Soreness in bladder (increased dramatically after exercise or sitting for long periods), discomfort in urethra, physical exhaustion (especially after trying to carry on work and play as if everything is normal), mid-night insomnia, mid-day drowsiness, elevated blood pressure (may be stress related).

I'm forced to admit that the reason I have not mentioned the post-treatment side effects is that each one is relatively minor, all improve day by day, and I have an instinct to "man up" and ignore them or pretend they don't affect me. My symptoms are pretty consistent with the others I have contact with, and according to my doctor, are more severe than average.They are far from the worst that can happen, and for that mercy I am thankful. For those wondering what it feels like, the photo at right demonstrates Mike Tyson delivering a BCG-loaded punch to Irishman Kevin McBride in 2005. I'm pretty sure McBride can handle BCG now!

David F in Englandhad worse immediateside effects summarized here. And this week I was contacted by Ed B in Washington state. His experience has been different from mine, so he agreed to let me post it for the education of all. He also details some minor prostate and other issues. The story is straightforward, but a couple of the items might disturb more sensitive readers (2/10 on the squeamish scale), so you can read about it onEd's backup page here.

One thing that surprised me a bit was that Ed's urologist was not familiar with the extended BCG schedule or reduced dosage. He approved it after Ed contacted Dr. Lamm and showed him the supporting data. An article describing the efficacy of reduced-dosage BCG is here:
http://www.renalandurologynews.com/One-Third-of-Standard-BCG-Dose-May-Be-Suffici

In case the link changes in the future, I am reprinting the summary below:

One third of the standard dose of bacillus Calmette-Guérin (BCG) could be recommended as adjuvant treatment for intermediate-risk superficial bladder tumors, Spanish researchers say.

In 430 patients with these tumors, the investigators compared three regimens: a low dose of BCG 27 mg (one third of the standard dose), BCG 13.5 mg, and mitomycin C (MMC) 30 mg. Instillations were repeated once a week for six weeks followed by six instillations once every two weeks over a period of 12 weeks.

Patients in the BCG 27 mg group had a significantly longer disease-free survival interval compared with patients in the MMC group. Compared with the BCG 27 mg group, the MMC and BCG 13.5 mg groups were at 86% and 49% higher risk of death after adjusting for potential confounders.

Disease-free survival was not significantly different between the two BCG groups or between the BCG 13.5 mg and MMC groups. The researchers observed no significant differences among the three groups with respect to time to progression and cancer-specific survival time. Local and systemic toxicities were higher in both BCG groups.

The BCG 27 mg dose seems to be the minimum effective dose as adjuvant treatment for intermediate-risk superficial bladder cancer, the authors concluded. BCG 13.5 mg is similar in efficacy to MMC 30 mg but is more toxic.

From the November 2007 Issue of Renal And Urology News
Also I note that Ed and others have BCG instillations done by any available staff member. Inconsistency in their approaches has greatly increased his discomfort.I am even more grateful that Dr. Hopkins chooses to do instillations himself, which is VERY unusual.


Bladder Cancer Staging and Second TURBT

One thing that Dr. Hopkins and the pathology lab did NOT do was sub-stage my T1 diagnosis as either T1-a or T1-b (b is worse). Robert G from New York (another bladder cancer frat buddy) writes that he is hopeful his T1-a staging is more hopeful for recovery. He provides this article as evidence for doing the substaging: http://www.ncbi.nlm.nih.gov/pubmed/17645415. My take is that such procedures cost more, and all they can do is increase or decrease one's hope factor. Robert G also points out that the Memorial Sloan-Kettering practice is to do a second TURBT to verify staging and grading, which is also expensive and minimally increases risk of ancillary damage. I did have a second TURBT due to perforated bladder, but doing so without such cause is not the norm in the rest of the country. And MS-K will do radical surgery at the slightest provocation, yet another way to guarantee high income for the doctors and hospital. Perhaps I am being needlessly critical, but they seem to me to operate with an ongoing conflict of interest. The only other med center that routinely defaults to surgical approaches for bladder cancer is USC. While it may be true that radical surgery has the highest 10 year survival rates across all patients of all ages and conditions, it's a damn high price to pay, and it may not be necessary. I am banking on faith and education to fight the disease, with radical surgery only as a last resort.

Comments (1)
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After having 11 tumors removed from my bladder in 3 different surgeries over 18 months I decided to go for the Bacillus Calmette-Guerin (BCG) treatments.  I believe my cancer is from chemical exposure while I worked at IBM.  I worked with a petroleum byproduct which we used for a computer disk lubricant.  I never smoke cigarettes, which in known to be one of the main causes of bladder cancer.

 

 After a few hours after my 5th treatment  of BCG I got a fever.  My urologist stopped treatment.  Within a few weeks I noticed pain in my tailbone area especially when I was sitting and getting out of bed in the morning.  Over the next  few months and  complaints to my urologist , he did a digital examination of my prostate.  He was concerned because it did not feel right and we followed up with a biopsy along with a PSA test.  PSA was found to be elevated.   It turns out somehow the BCG got into my prostate, I am assuming a direct invasion from the urethra during treatment.  This contamination caused extremely severe Granulomatous prostatitis, (prostatic tuberculosis).   In addition the biopsy also discovered a very small amount of cancer, stage 6.   I did not feel I had much of a choice but to have my prostate removed, radical prostatectomy. 

 

 Since the operation 7 months ago I still have tailbone pain.   I had a bone scan and a MRI to see if anything abnormal could be found.  All test came back without any visible problem other than already known herniated disks.  It seems odd to me that the tailbone pain could be due to the pressure on the spinal cord and seemed initiated with the granulomatous prostatitis .  Has anyone had the spread of BCG or tuberculosis infection to other parts of their body, specifically the tailbone area or spinal cord?

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