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Anyone dealing with UTUC (Upper Tract Urothelial Carcinoma)?

Posted by slm189 @slm189, Oct 30, 2024

Diagnosed with non muscle invasive lowgrade UTUC. Have had three tumors ablated over the course of 1 1/2 years. Time to try Jelmyto?

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utuchelp | @utuchelp | Aug 21 4:03pm
In reply to @slm189 "I have no direct experience, but have read about the Enlighted trial. Seems to show promising..." + (show)
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I have no direct experience, but have read about the Enlighted trial. Seems to show promising results. I had considered it, however, the trial locations were too far from my home. Hoping that when the procedure gets approval and if I am still dealing with my low grade, non-invasive UTUC it will be available at my teaching hospital. Currently am dealing with recurrent ureter tumors with ablation.

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My relative is also geographically distant from a recruiting site. However, it seems they may offer reimbursement for travel costs? Where approximately are you located?

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wifey9 | @wifey9 | Aug 23 12:50pm

Have you have BCG infusions into your bladder? Any treatments besides tumor removal?

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slm189 | @slm189 | Aug 23 3:05pm
In reply to @utuchelp "My relative is also geographically distant from a recruiting site. However, it seems they may offer..." + (show)
Profile picture for utuchelp @utuchelp

My relative is also geographically distant from a recruiting site. However, it seems they may offer reimbursement for travel costs? Where approximately are you located?

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I would be 8 hours from Atlanta Emory trial location. Not sure how my insurance would work being in an out of state trial.

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slm189 | @slm189 | Aug 23 3:11pm
In reply to @wifey9 "Have you have BCG infusions into your bladder? Any treatments besides tumor removal?" + (show)
Profile picture for wifey9 @wifey9

Have you have BCG infusions into your bladder? Any treatments besides tumor removal?

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I have had two mitomycin c bladder infusions directly after two tumor ablation procedures. Have had five tumor ablation procedures total. My low grade non invasive UTUC has not spread to my bladder.

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slm189 | @slm189 | Nov 26 11:01am
In reply to @slm189 "I have had two mitomycin c bladder infusions directly after two tumor ablation procedures. Have had..." + (show)
Profile picture for slm189 @slm189

I have had two mitomycin c bladder infusions directly after two tumor ablation procedures. Have had five tumor ablation procedures total. My low grade non invasive UTUC has not spread to my bladder.

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@slm189 Just had an URS on 11/25/2025 (my sixth since my diagnosis in 7/2023.) Good news was there was no tumor found in my ureter. Three small tumors were found in my bladder near the right ureter opening. Dr ablated them and thinks they migrated from ureter. Pathology reports low grade non invasive. Plan is cystocopy in 3 months.

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