BCG and Bladder Cancer

First, you should know that there are two basic types of BCA - the most common is papillary which can be resected and is lower grade. The other is carcinoma in site (CIS) which is on the surface of the bladder and looks more benign but is actually more aggressive.
I had my first bout 5 years ago and went through the 6 BCG treatments which were not fun. By the 6th one I was down to 10% of full dose. The cancer was gone and I went 5 years without a recurrence but recently had a recurrence diagnosed only by urine cytology and could not be seen on cystoscopy. I had the routine cystogram (to rull out upper tract cancer such as ureters and kidney and bladder biopsy. I started another set of 6 treatments and am ready for number 4. I have the same symptoms most people describe include the unexpected urgency, urethral burning, fatigue, etc. I have take the pyridium, prosed and phenazopyrid for the symptoms and they help somewhat. I also tried Toviaz as a system antispasmodic. It seems to work well but makes me feel really weird so stopped using it. I also tried Vicodin (as someone had suggested) and must say it really helped me sleep most of the night and be able to function better during the day. Not sure why it works other than as an analgesic. I try to keep the dose low and not use it unless necessary as I don't want to become chemically dependent on it as it is a mild opioid. I read with interest people using Cipro. Have not tried it but will. I guess once the BCG is out of the bladder for a day or two, this antibiotic should not affect efficacy. An immunologist friend suggested low dose NSAIDs to decrease the inflammation. He did not think it would interfere with efficacy as the primary effect of BCG works by a different mechanism but might help with the symptoms. I might try this as well as having to go urgency and without warning is putting a crimp in my life (work, social, travel, etc.). My recurrence is still superficial so hope it will respond well and give me another 5 years tumor free. There is a new drug under review by FDA now (Urocidin) which is BCG cell wall and not live cells and was tested in patients who failed or who could not tolerate BCG. This may be the first alternative for BCG failures other than cystectomy once approved. I will also try the baths someone mentioned. Keep the suggestions coming!

By LadyJane123
Posted October 28, 2009 at 7:50 am
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There are other types of treatment for your type of tumours. BCG with Interferon and MitomycinC and a new one that I can't remember off the top of my head.

You did well having one round of BCG and then being tumour free for 5 years. Most of us have muliple BCG treatments so in my books you are doing great with the exception of the pain and urgency. I never experioenced any of that with my rounds of BCG. I hope you can find some solution to this. Best of luck and keep us posted.

By Moonerj
Posted October 28, 2009 at 7:54 am
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Great Post Pharma

I had to use Cipro while on maintenance BCG treatments due to the number of bladder infections I was having caused by the BCG.
I began the meds the day of the treatment, and for the following 3 days.
I inquired to my Uro, 2nd opinion Uro, and Dr. Lamm if the Cipro would affect the BCG. Each one said no cipro would not affect the performance of BCG, if anything would help according to Dr. Lamm.
I finished my monthly maintenance BCG treatments in Feb and will be soon 2 years cancer free.
I hope they do find an alternative to BCG at some point, as the side effects in my case anyways during maintenance were Hell.
I wish you all the best and thanks for the valuable information.
BCG = Bladder Cancer Gone
Jack

By Memi
Posted October 28, 2009 at 8:49 am
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I loved that part about 5 years without a recurrance. Did you have CIS? My diagnosis was CIS. Just got the results of the biopsy after the initial six treatments. No cancer was found, but will start maintenance bcg treatments in Dec. Wish I knew for sure they weren't necessary, but will follow my uro's advice. After all he with the help of God , gave me a clear bladder.

Memi

By SilverGrizzly
Posted October 28, 2009 at 8:57 am
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Your post is very encouraging to us newbies. You had such a good reaction to the BCG. Thank you for sharing what has helped you with the side effects.

I have some questions.

Question 1: So you didn't do the maintenance, if I understand your post correctly? Did your doctors want you to do it, or feel it wasn't necessary, or that you wouldn't tolerate it?

Question 2: When did they start reducing your dosage? How bad did your symptoms have to get before they would consider that?

I just finished my second BCG treatment of Round One and have been very miserable with side effects already. I appreciate any and all posts that tell me that one does get through this intact. I can't imagine four more of these, if they continue to get worse each time, as they say is often the case.

Thanks for any information you can share. I'm looking for some hope that I will tolerate this! -Jan

By lsh
Posted October 28, 2009 at 9:06 am
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I also had terrible side effects from the BCG. My doc at MDA wrote for Darclama 81.6mg. It is a generic for ultra c...a bladder analgesic and an antispasmodic together. It helped me get through the two quarterly maintenance treatments I have done(along with lowering the dose to one third). So far I have been all clear for a little over a year.

Lynda

By jj803
Posted October 28, 2009 at 4:40 pm
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I cannot remember if I read this in medical literature or am making it up now, but I seem to remember that NSAIDS do decrease the efficacy of BCG. Probably something best addressed with your urologist. Best wishes,

JJ

By Memi
Posted November 7, 2009 at 9:47 am
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nsk,
Did you get any answer to your question about depression? You will get more help than I can give you, if you enter you question as a discussion.
I have handled my depression by wading through it with the help of God, but get professional help, if you feel you need need it. Don't be ashamed to ask for help. This is my second bout with cancer and the diagnoses is very, very hard to handle.
God's blessings,

Memi

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