So, I've been fighting NMIBC (High Grade T1) for a couple years. I've had 5 TURBTS and the induction phase (6 installs) of BCG. The resections and the BCG got me down to HGTa, but the cancer was still present.
I got into a clinical trial here in the U.S. called CORE-008, and I'm in a cohort/arm that gets three intravesical installs per treatment visit ... one prep agent called DDM; the test drug, an immuno agent called cretostimogene grenadenorepvec; and then lastly the chemo drug gemcitabine.
I'd probably had about 15 installs, and the side effects were stacking and getting pretty rough in terms of short term. A longer-term side -- and the scary one, at least to me -- was significant thickening of a bladder wall (plus 10mm).
I thought I'd have to withdraw from the trial, but they gave me a month's rest and another month of treatments but without the gem, and then they did a flexible scope and a CT this past week.
Here's the actual news: Both were the best I've had since this fight started. The scope showed a completely normal bladder lining, and the CT showed the swelling -- probably from severe cystitis -- was gone.
The upshot: The worst side effect was temporary (cystitis) and not permanent (fibrosis), and the treatment is apparently working quite well. I saw the scope screen as we were in progress: uniform color and texture ... and I'd never seen that before on one of my scopes.
The results were so promising, I don't think I processed 'em for a bit. The depth of what I'd just seen & heard really didn't register it until I was sitting in the car getting ready to drive home.
Anyway, I do understand high-grade is no joke and it still may return, and this fight isn't over ... but I do finally feel like I won a round and we are getting somewhere.
No great wisdom to share other than maybe hang in there; sometimes good news does eventually come.
Thanks, everyone.
Mark
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