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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer Treatment options for BCG intolerant NMIBC patients

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  • #32179
    Lou
    Participant

    A few of us are considered “refractory BCG” not because it didn’t clear up the cancer, but we couldn’t survive the BCG treatments. For us, our choice is to be killed by the cancer, or to be killed by BCG.

    I wound up in the hospital after BCG#4 with a 105.2 fever–that’s right, not 102.5, but 105.2! Of course the last two treatments were cancelled. When my cancer recurred several years later, my doctor proposed cystectomy. I begged him to let me try BCG again and he reluctantly (and courageously) agreed.

    This time I only peaked at 102.7, profuse bleeding from my bladder, extreme nausea, intense body and joint pain, chills, painful urination, and a swollen, disfigured penis. In addition, I was barred from having unprotected sex–the only kind of sex that works for me–during the first 6 weeks of treatments and for 6 weeks afterwards, a total of nearly 3 months of sexual abstinence. (But I did manage to stay out of the hospital.)

    Many other treatments currently under investigation combine BCG with an additional agent–e.g., interferon. They won’t work for me. Photodynamic Therapy (PDT), another option, has already been approved for some other cancers. It already has a proven track record of efficacy against cancer. I know of no other treatment that has as few side effects as PDT. I would only need one instead of 6 treatments. I would have no risk of sepsis, and none of the drastic BCG side effects, and I could resume natural sex the next day.

    If anyone knows of a clinical trial not involving BCG, only requiring one treatment, not interfering with sex, posing no risk of sepsis, would you please post it here?

    Lou

    #32180
    Jack Moon
    Keymaster

    Hi Lou

    Sorry you have been unable to tolerate the BCG treatments.
    Below is a link to a video I recommend you listen to from a world renowned bladder cancer specialist.
    The important information starts at about the 5:00 minute mark to the end, but I do recommend you listen to the complete interview.
    This is a 1 instillation trial that is given in 3 month intervals.
    Phase 111 of this trial lists only USA locations.
    All the best Jack,
    https://www.urotoday.com/video-lectures/bladder-cancer/video/mediaitem/955-embedded-media2018-05-19-18-30-37.html?utm_source=newsletter_5744&utm_medium=email&utm_campaign=uroalerts-oncology-daily
    Trial detail:
    https://www.urotoday.com/clinical-trials/bladder-cancer/94419-a-phase-iii-open-label-study-to-evaluate-the-safety-and-efficacy-of-instiladrin-rad-interferon-ifn-syn3-administered-intravesically-to-patients-with-high-grade-bcg-unresponsive-non-muscle-invasive-bladder-cancer-nmibc

    • This reply was modified 6 years, 5 months ago by Jack Moon.
    • This reply was modified 6 years, 5 months ago by Jack Moon.
    #32189
    Lou
    Participant

    Thanks Jack. Very helpful. Am in the process of studying it all.

    • This reply was modified 6 years, 5 months ago by Lou.
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