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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?

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

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art5 | @art5 | Feb 26, 2023
In reply to @concerneddaughter "New to this forum but looking for feedback from others who have received Jelmyto for low..." + (show)
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New to this forum but looking for feedback from others who have received Jelmyto for low grade UTUC. My 85 year old mother received 6 treatments. Treatments 1-3, went relatively smoothly with minimal discomfort after the procedure but the last 3 have been quite difficult. She has had a UTI twice, and continues with intense abdominal and flank pain and a complete lack of energy. Last week she had an ultrasound and the doctor said her kidney was swollen. The dr prescribed Flomax originally but has now scheduled for her to have a stent inserted in the coming week. Her urologist is not from a cancer center or a teaching hospital so I am concerned the lack of administration familiarity may have been a factor in the intensity of the side effects or worse yet created a new trauma to her kidney from the frequent procedures. The urology practice seems unsure of next steps and their lack of urgency concerns me, especially for a patient that is 85.

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@concerneddaughter — How is your dear mother doing? This forum has been silent for a long time. I hope everyone is OK.

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kausarzaman48 | @kausarzaman48 | Mar 4, 2023

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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pcondon | @pcondon | Mar 6, 2023
In reply to @kausarzaman48 "I was recently diagnosed with an aggressive squamous cell tumor of my lower third of ureter...." + (show)
Profile picture for kausarzaman48 @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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bevers89 | @bevers89 | Mar 7, 2023

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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pcondon | @pcondon | Mar 8, 2023
In reply to @bevers89 "I am one of the nurses who instill Jelmyto and we have had a mix of..." + (show)
Profile picture for bevers89 @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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bevers89 | @bevers89 | Mar 9, 2023

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 | @bevers89 | Mar 9, 2023

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

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vickipm | @vickipm | Mar 6, 2025

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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slm189 | @slm189 | Mar 7, 2025
In reply to @vickipm "My husband has low grade upper utherial kidney cancer also now spread to the bladder. Tumors..." + (show)
Profile picture for vickipm @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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vickipm | @vickipm | Mar 7, 2025
In reply to @slm189 "Have not had Jelmyto treatment myself. Could be in my future. I do know that not..." + (show)
Profile picture for slm189 @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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