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Jelmyto in my future: What's treatment like? What should I know?
Bladder Cancer | Last Active: 6 days ago | Replies (14)Comment receiving replies
@vickipm
Hi Vickipm
Well, I saw the other urologist/oncologist that my current urologist referred me to and he said I am NOT a candidate for Jelmyto due to my left kidney being “weak” from the UTUC and so many ablations. He said I need a radical nephrectomy and wanted me to schedule it within 4 weeks!! We were in shock after that appointment because my current urologist had said I was fine for now (after my last ablation on 3/10) and there was no rush to even see the new dr. But I went ahead and made the appointment to see him. I saw my regular urologist again yesterday and told him what the new guy said and he was kind of shocked too. He saw that I was upset and said we could just keep doing the ablations for now. BUT if the UTUC keeps coming back the kidney has to go. So, I have an appointment today with a very highly recommended Nephrologist to discuss my inevitable radical nephrectomy. I want his referral to a kidney surgeon who has DECADES of experience removing kidneys. I also have an appointment with another very highly respected urologist/oncologist who is associated with a cancer center here in my city to get a THIRD opinion. I hope you and your husband are doing great and enjoying springtime activities! Thanks for listening! 😁 Sally
Replies to "@vickipm Hi Vickipm Well, I saw the other urologist/oncologist that my current urologist referred me to..."
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Wow, you have been busy.
After his nephrectomy, we sought an appointment oncologist closer to us as
well as an urologist. The first pet scan showed no cancer. Then a week
later at the urologist with a cystoscopy, we saw a tumor in the crown of
his bladder. That was removed and he is now on a 6 week, 1x week, very
uncomfortable insertion of another mytomycin, Zusduri. Last week was
miserable for him with a very irritating rash all over and most awful in
his crotch area while at church on Sunday.
He has 3 more to go and then check it after 3 months. He continues on an
infusion of Keytruda every 21 days and that is going well. A pet scan will
be done pretty soon.
So we go and come, have fun with family and friends in between all this.
Praying you get good results and good treatments. Thanks for sharing.