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Anyone have recurrence after the initial 6 BCG induction treatments?
I was diagnosed in Feb 2025 with High Grade Papillary Urothelial Carcinoma, stage Ta. It was a large tumor that was found. It took 3 turbts to entirely remove the original tumor. That was done by May 22nd. I then did 6 weeks of BCG treatments after healing from surgery. My first cystoscopy was last week and the cancer is back already. Not just 1 tumor either, multiple. Its been rather discouraging. I have another turbt surgery scheduled for Oct 22nd and the plan is to try BCG again. Has anyone else experienced this? Was it successful? If not, what happens next? Im trying to preserve my bladder as long as possible.
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I had two rounds of BCG that were unsuccessful. I was referred to
Rodchester’s Mayo for evaluation. I was able to get into a 3rd phase Trial .It HAS BEEN SUCCESSFUL I now go every three months to have cytology and cystoscope. Every 6 months for a CT and treatment. The trial is 5 yr but has been well worth it. Mayo is amazing and so are ALL the staff.
Trial Study Title: A Phase 3 study of Cretosimogene Grenadenorepvec, CG3002S. For unresponsive to BCG. Rodchester,MN.
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4 ReactionsSome of us on here are receiving a different treatment with chemotherapy, nicknamed gemdoce for gemcytabine and docetaxel.
I'm not an exper or a doctort, but from the reports I've seen, the numbers look slightly better than those for BCG.
I am currently on the gemdoc and it seems to be working. The BCG did not help.
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1 ReactionOur hospital tried BCG once and it was unsuccessful. They then scheduled the dos gem chemo with in a week.
I was BCG refractory after six weekly treatments. I underwent another TURBT and commenced four quarterly Adstiladrin treatments, which have been effective in preventing NMIBC recurrence thus far, praise God.
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4 ReactionsHello @kirsten210. My husband had a highly aggressive muscle invasive urothelial cell carcinoma. At Mayo Clinic after BCG failure he was offered Keytruda or cystectomy. At the time Adstiladrin was not yet approved and perhaps Gem/doce was not offered yet either. He had had a gemcytobine bladder infusion immediately postop after the diverticulum off the bladder was removed and had Cisplatin chemo for 6 months. Keytruda was not successful in controlling recurrence so 2 years after initial diagnosis he chose radical cystectomy with neobladder to eliminate the tumor. So far so good 3.5 years later. There have been big advances in bladder cancer in the past few years and they are more successful in saving the bladder. Is your medical team with a large cancer center of teaching hospital? Second opinions are very valuable for finding all the alternatives. Good luck and keep pushing for the best options.
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2 Reactions@bethcamp
I thought it might help if we share what different hospitals are doing since they seem to offer different treatments. I am currently going to Cleveland Clinic.
Good luck again
@jerry1234 After the NMIBC diagnosis, I received a TURBT by Timothy Lyon, MD at Mayo Clinic in Jacksonville, along with referral to receive BCG treatments in Chattanooga. I followed up with Vanderbilt University Medical Center, where Amy Luckenbaugh, MD performed blue-light cystoscopy and prescribed Adstiladrin treatments. I highly recommend Vanderbilt Urology and Dr. Luckenbaugh, as well as Mayo Clinic and Dr. Lyon. They are best-in-class urologists and surgeons.
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2 Reactions@jerry1234
UNC Hospital, Chapel Hill, North Carolina.