I just completed the six week of Jelmyto treatments for low grade urethane papillary urothelial carcinoma. I did not have any major side effects, after the 5 and 6 treatments I developed a very itchy rash mostly on my hands and feet, it was uncomfortable for 48 hrs and cleared completely after 5 days. Waiting to see the urologist in two weeks to find what is next. Not sure if the nephroureteral tube will be removed.
They are still working on it. First yes, then no.
We leave for a Rhine cruise with husband having a drainage tube, nephostomy, in his back, no bag.
Anyway, more procedure and then chemo in May. It's been a long 18 months. But no info about effects of Jelmyto.
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.
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?
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.
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?
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.
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.
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 just completed the six week of Jelmyto treatments for low grade urethane papillary urothelial carcinoma. I did not have any major side effects, after the 5 and 6 treatments I developed a very itchy rash mostly on my hands and feet, it was uncomfortable for 48 hrs and cleared completely after 5 days. Waiting to see the urologist in two weeks to find what is next. Not sure if the nephroureteral tube will be removed.
They are still working on it. First yes, then no.
We leave for a Rhine cruise with husband having a drainage tube, nephostomy, in his back, no bag.
Anyway, more procedure and then chemo in May. It's been a long 18 months. But no info about effects of Jelmyto.
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2 Reactions@slm189, might have experience with Jelmyto to share with you, Vicki.
@vickipm, was your husband able to start Jelmyto closer to home?
Hi pcondon. Have you had any luck getting information about experience with Jelmyto?
My husband is supposed to start it in April. Thanks.
That is exactly what we are attempting. Thank you and healing mercies to you.
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.
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?
Also yes I am a nurse at Mayo Clinic in Rochester.
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.
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?