The good news nearly went over my head

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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
 

  • Hi  . That's great positive news. Really pleased for you. The treatment sounds really interesting. It does take a while for good news to sink in. Enjoy the celebrations over there. Best wishes going forward. 

    Best wishes to All,   rily.

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  • Hi Mark,It’s good to hear you have had such a great response to the treatment.Best wishes Jane xx

  • Hi Mark that really sounds like very positive news so pleased for you, I just the all clear this week myself lower grade then tours mind after my second chemo this time epirubicin as the previous mitonycin disnt stop recurrences for me. 

    It is really great to hear such good stories as it gives others hope reading these things. 

    But again as you say the fight is never always over, I need to have 5 year free now and then it's considered that I'm cured but even then probably a cystoscopy yearly to make sure for the rest of my life as I understand it. 

    ________________

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Hello Mark, Thank you for letting us know how you are doing. It is even better when it is good news. You have a resilient  attitude which is serving you well while also providing valuable data on newer treatment regimes. I hope you can now enjoy your normal life without the medical intensity of the trial which sounds to have been a tough one. Well done!  Ray

  • That's great, long may the clear status last. I think it is hard to suddenly switch mood, from fearing the worst to hearing good news. That sliver of doubt lingers. Hope you can celebrate at least in a small way!

  • Hi Mark, your fabulous news is so wonderful to hear! As you say the high grade is no joke but the longer you can keep it at bay the better. You have coped so well with all the different treatment and resections you've had, you deserve to enjoy this success and celebrate. Well done to you Clap

    Sending love across the pond, Ade xx