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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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