Jelmyto in my future: What's treatment like? What should I know?

@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

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.

@vickipm I’m sorry your husband is suffering. The physical discomfort, treatments and anxiety are hard to deal with. He might want to try some Vagisil on that uncomfortable rash in his crotch area (Be sure to check with his doctor). It has a pretty strong anti-itch medication in it and might give him some relief. I saw a nephrologist today and he explained how different parts of the urinary tract have different kinds of cells and chemo for one area (like the bladder) will respond to certain drugs but the kidney completely “ignores” the same drug. The ureter is the absolute worst for trying any chemo on. As you know, Jelmyto is “hit or miss” in the success department and I was told I can’t have it because even through a nephrostomy tube, it will not reach the spot it needs to get to. So I’m going to lose my kidney. This nephrologist was very encouraging to me and reassured me that I will be fine with just the one kidney. My kidney labs are excellent. He gave me the names of 2 top kidney surgeons in my city. I will see about getting appointments. You hang in there ma’am. I know caregiving is hard too. (Been there). Be sure to take care of YOU too.