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  • pemquid's avatar

    pemquid

    Member
    March 22, 2010 at 9:20 pm

    FYI, I went on the Website and could not sure if I met eligibility criteria or not; they mentioned being done with chemotherapy and radiation treatment as being a criterion, but I’m on maintenance BCG and wasn’t sure how that fit in their scheme of things. You had to sign up and give personal information (which is to be maintained in strictest confidence) even to take the on-line screening survey. So, I instead e-mailed them to check about my eligibility — told them I’d had one recurrence of BLC, was on maintenance BCG, and still getting checked every 3 months but soon to go to 6 months. They replied and said I did NOT meet eligibility criteria because of the recurrence and the fact that I’m still getting check ups. They didn’t mention anything about the BCG, which in fact was what I thought might be a deciding factor. By their criteria, it would seem that virtually no one with BLC who stil has a bladder would qualify; after all, even people with no recurrences are still going to be getting checkups for the rest of their life (albeit some may be getting them annually).

    Ann


    Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
  • webs's avatar

    webs

    Member
    March 18, 2010 at 12:16 am

    Sounds like this might be an interesting workshop. If I did not already have so many irons in the fire I would do it. If anyone does participate please let me know if the experience was good.

    Webs

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