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Recent diagnosis of early stage T1 NIMBC: Any tips?
Greetings. I am 69, and diagnosed in January with early stage T1 NIMBC. Was being treated for what was thought to be hematuria related kidney stones. Only risk factors were being male and over 55. Had 1 TURBT in Kansas City in January. Wanted a second opinion before going further. Got connected to Mayo Clinic at my wife’s suggestion. Have had 2 TURBT surgeries there since. Pathology has remained the same. T1 NMIBC. Scheduled to begin my 6 week BCG treatments in early June at Mayo. Encouraging, yet somewhat apprehensive. Have been doing a lot of reading up on the process, but would really appreciate any suggestions to make it go easier.
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@tootall10
Google or ask your doctor.
It's not difficult.
By the way, what is regular old NIMBC?
Best wishes.
@dks2500 I had a course of six BCG treatments in Omaha during the spring of 2024. BCG then became unavailable locally (April 2024). The treatments were at my urologist's office, and went off without a hitch. I had nine months of Adstiladrin treatments in 2025-2026, when the cancer returned, and now am hearing into another course of 12 BCG treatments in May-June. My treating physician is now at Mayo - Rochester, and he has assured me Mayo has a steady supply of BCG that will not be interrupted. Actually, Mayo has recombinant BCG (rBCG), which is an engineered version of the traditional Bacillus Calmette-Guérin vaccine, modified to enhance immune response for treating non-muscle invasive bladder cancer. I will do my treatments here, at an infusion center or my local urologist's office, if the rBCG is available locally; otherwise, I'll drive to Mayo for the treatments. Best of luck to you.
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6 Reactions@gemdoc25
With all the work being done to treat disease, new acronyms are added every day. There are literally thousands of them out there. I wouldn't think an organization as big as the Mayo clinic couldn't put together a list of acronyms on a link to skip to as we read through the different articles. Maybe your doctor has time to answer phone calls to explain acronyms to readers but mine certainly doesn't. It's hard enough to reach the receptionist. Google helps.
@sbassmeister Did you have the VLAR Labs Vesta test? If not google and go to their web site. My test just came back and it revealed I am not likely to receive any benefit from BCG treatment. I have NIMC stage T1a high grade intermediate. I have had 2 TURBT’s within 90 days and will have a follow up cystoscopy on 4/29. Wishing you well.🙏
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4 Reactions@gemdoc25 I just got my Vesta results back and I am not a likely candidate for BCG. I have my 90 scope this Wednesday- anxiety is high. Thanks again for Vesta intel. I wish you well🙏
Ask for the VLAR Labs Vesta test?
@michzn before BCG starts.
@djr5 Correction: My Mayo doctor tells me that the BCG I will be receiving is TICE, not recombinant, although the FDA has now authorized the use of rBCG. He does assure me that Mayo - Rochester's BCG source is shortage-proof. I've read that rBCG may be a bit more effective, and may have fewer side effects than traditionally produced BCG, but I have neither the information or relevant knowledge necessary to determine if this is true. Apropos of nothing, I am also having Valar Labs perform a Vesta test on my last TURBT pathology sample, to see if my biomarkers indicate whether I am amenable to further BCG treatment. My reasoning is that the test can't hurt and might be useful.