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  • MommyDiane
    replied
    I just located the BCG study through the ICnetwork and called OKC. I spoke to Lynda and she was quite cheerful. The exact function of the BCG is not known, but that's fairly common to those of us who've been around this block a time or two. I've had a flare and it's pretty discouraging so I was looking for some options that I hadn't tried and stumbled on the study. I am extremely anxious about being catheterized. What's anyone else's experience with that? (I had to take a valium and a pain pill just to walk into my old Urologist's office. After a catheterization I can never quite decide if I'm going to pass out or throw up!) I am searching for extensive scientific information about the BCG action. If I find it I'll let you all know about it! I'm only going to do this if it offers long term help. The nurse said "it didn't make anyone worse". It represents a time commitment I could use towards other things so I want as definitive information as possible before I make this committment. They seem to want me and I have an appt. scheduled for the next week or so.

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  • Teresa
    replied


    Thanks for posting this info.

    great news- :p

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  • Green15
    replied
    Thank you for posting this information. I too feel this is an important study and I applaud those who are participating. Good luck to everyone!

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  • cedoering
    replied
    I am in the BCG study at the University of Maryland IC Research Center. My first instillation was on Oct. 01, 2001. Dr. John Warren is heading the study at this center. It is a double blind study and involves 6 instillations which must be done over a 10 week period, although it is preffered that the be done one per week for 6 weeks.

    I had my second treatment on Thursday October 18, 2001 because I had bleeding from the catheterization on Oct. 8, 2001. This required a reschedule to the Oct. 18 date.

    The bleeding was not painful in fact the catheter inserted easier than any I have experienced.

    I feel that I am getting the BCG because I have had Hydrodistention and Cystoscopy with sterile saline solution and this is NOT like that, after the treatment I could only hold the instillation liquid (40 cc) for about one hour before the spasms forced me to empty my bladder.

    I experienced a change in my nocturnal frequency and urgency right after the first treatment and now I am getting at least one stretch of 2 to 3 hours of sleep each night. I also noticed that there is a very mild discomfort in my pelvic area that lasts about 2 days after the treatment. I also have experienced the same IC pain sysmptoms of spasms, urgency and frequency during the days that have been my lot for years.

    I feel this study is going to be one of the most important for IC yet. It will resolve the questions of efficacy for BCG treatments of IC and will also help to understand the the chance of using a second course of BCG for patients who do not respond to the first treatment series. Non responder patients will be offered a second Open Label BCG treatment series after the 6 month follow up period. Those choosing the second treatment series will be followed another 6 months. Thus they will have data to see if those who were treated with BCG the first time then respond to the second treatment (there is some data that indicates this may be true).

    I am scheduled to have my next treatment on Oct. 25, 2001 and will try to post an update as soon as I have more to report.

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  • New Jersey
    replied
    For the East Coasters in the US, I believe Dr. Hanno at University of Pennsylvania is also performing the trials.

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  • Derrick
    started a topic New BCG Study

    New BCG Study

    Greetings!

    I just got the latest Oklahoma University IC Health Matters Newsletter in the mail and they're announcing a new IC study for BCG.

    I sure hope something positive comes from this study!

    Derrick

    ===================================
    IC research has just received notice from the NIH that the BCG study will begin enrollment. BCG is a live, but weakened form of cow tuberculosis bacteria. BCG has been used worldwide as a vaccine intended to treat tuberculosis, and has also been successfully used to treat patients with bladder cancer.

    In a smaller study at William Beaumont Hospital in Royal Oak Michigan, BCG was given to 35 diagnosed IC patients following much the same methods as will be done in this study. The clinical response was a 60% positive response rate compared to those patients who received placebo (did not actually receive the active drug) and for whom the response rate was only 27%.

    Our study involves administering six weekly instillations via catheter into the bladder gollowed by six months of follow-up. If at the end of the follow-up period, the patient is not better, the patient will be offered the option of receiving active BCG (no placebo will be used). The second series of treatments will occur on the same schedule as the first series followed by an additional six-month period of follow-up.

    In order to participate in the study, the patient must have a diagnosis of IC as proven by a cysto/hydro. The patient cannot currently be taking Elmiron - must be off this medication for four weeks before beginning the eligibility process.

    We are truly excited about the study, and would enjoy sharing the details of patient participation with you. If you have questions or an interest in participating in the study, please call Lynda Kelsey or Karen Mataranglo at (405) 271-6900.
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