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.
I am newly diagnosed with High Grade UTUC. My doctor is going straight for the removal of my affected kidney and ureter. He is not in favor of the newer options in my case. What bothers me is that cytology of my urine shows cancer cells present, but he doesn't do the one time chemo for the bladder to kill any stray cells that might be lingering there. My husband had low grade UC and after removing the little cancer, they did that treatment to his bladder. I asked about it and his answers really didn't ease my concern. I see my nephrologist June 2nd. My surgery is scheduled for June 18th. Why would he not want to kill off stray cancer cells that are in my bladder?
I am newly diagnosed with High Grade UTUC. My doctor is going straight for the removal of my affected kidney and ureter. He is not in favor of the newer options in my case. What bothers me is that cytology of my urine shows cancer cells present, but he doesn't do the one time chemo for the bladder to kill any stray cells that might be lingering there. My husband had low grade UC and after removing the little cancer, they did that treatment to his bladder. I asked about it and his answers really didn't ease my concern. I see my nephrologist June 2nd. My surgery is scheduled for June 18th. Why would he not want to kill off stray cancer cells that are in my bladder?
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.
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.
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@u090312, have you had your appointment with the urologist? What is next? How are you doing?
If you have questions about your treatment, perhaps you need a second opinion.
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3 ReactionsI am newly diagnosed with High Grade UTUC. My doctor is going straight for the removal of my affected kidney and ureter. He is not in favor of the newer options in my case. What bothers me is that cytology of my urine shows cancer cells present, but he doesn't do the one time chemo for the bladder to kill any stray cells that might be lingering there. My husband had low grade UC and after removing the little cancer, they did that treatment to his bladder. I asked about it and his answers really didn't ease my concern. I see my nephrologist June 2nd. My surgery is scheduled for June 18th. Why would he not want to kill off stray cancer cells that are in my bladder?
Good to know. My husband is having his 3rd round tomorrow. Only side effect so far is feeling lethargic.
We pray for positive results for you!
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1 ReactionI 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.