Low grade ureter and renal pelvis kidney cancer diagnosis.

Posted by pcondon @pcondon, Sep 5, 2022

Has anyone had personal experience as a patient or as a doctor with new drug Jelmyto. Success, side effects?

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Hi pcondon. Have you had any luck getting information about experience with Jelmyto?
My husband is supposed to start it in April. Thanks.

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@slm189

Have not had Jelmyto treatment myself. Could be in my future. I do know that not all doctors can administer. I would need to travel 1 1/2 hours if I need it. You might go to Jelmyto website for locations that administer this treatment.

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That is exactly what we are attempting. Thank you and healing mercies to you.

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@vickipm

My husband has low grade upper utherial kidney cancer also now spread to the bladder. Tumors removed through research study laser therapy, but cancer returned to papillary and bladder. Dr. now wants to start the Jelmytin therapy through the neph tube still intact. Do we get a second opinion to see if this can be done closer to home rather than 600 miles away for the 6 wks course?

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Have not had Jelmyto treatment myself. Could be in my future. I do know that not all doctors can administer. I would need to travel 1 1/2 hours if I need it. You might go to Jelmyto website for locations that administer this treatment.

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My husband has low grade upper utherial kidney cancer also now spread to the bladder. Tumors removed through research study laser therapy, but cancer returned to papillary and bladder. Dr. now wants to start the Jelmytin therapy through the neph tube still intact. Do we get a second opinion to see if this can be done closer to home rather than 600 miles away for the 6 wks course?

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Also yes I am a nurse at Mayo Clinic in Rochester.

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Most people don't have severe side effects. Only one patient has had "severe" side effects that I know of. We haven't treated a lot of patients yet. Jelmyto has been only approved for a little over a year. I don't have the success rate maybe Dr. Potretzke does. It would be best to consult with him.

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@bevers89

I am one of the nurses who instill Jelmyto and we have had a mix of side effects. Some individuals have no side effects and others have nausea, diarrhea, etc. Dr. Potretzke is the doctor who performs this treatment.

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Bevers89. Are you a nurse at Mayo? Sorry to learn about the potential side effects you are seeing with the use of Jelmyto. Question: Are the side effects frequent and severe? How many cases have you folks treated with Jelmyto? What has been the complete response success rate for the patients you folks have treated with Jelmyto?

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I am one of the nurses who instill Jelmyto and we have had a mix of side effects. Some individuals have no side effects and others have nausea, diarrhea, etc. Dr. Potretzke is the doctor who performs this treatment.

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@kausarzaman48

I was recently diagnosed with an aggressive squamous cell tumor of my lower third of ureter. They did the diagnosis by biopsy. Now Uretrectomynis scheduled for Monday. Kidney will be left in as I have stage three kidney disease.
Praying for the best outcome.

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So sorry to learn of your diagnosis. Have you sought a second opinion? Any type of chemo treatment discussed such as JELMYTO or GemDoce infusion drip into kidney that drains thru ureter?

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I was recently diagnosed with an aggressive squamous cell tumor of my lower third of ureter. They did the diagnosis by biopsy. Now Uretrectomynis scheduled for Monday. Kidney will be left in as I have stage three kidney disease.
Praying for the best outcome.

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