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

Your story is so similar to my 75 yr old husbands. First he did the laser therapy, it worked, but cancer was back the next visit. Then Jelmyto for the 6 treatments in 6 weeks. It did not work. Then he had his kidney removed and is now doing Keytruda infusions every 21 days. He had Signaterra blood test which showed cancer markers, so this week will have a PET SCAN to see where it is. My husband looks great and feels good, except a little more tired... he's currently helping get ready for a St. Patrick's Day party! Now he's being referred to a bladder oncologist for review. It's been a roller coaster ride since 2023 and we just keep on praying and playing. Best of luck!

Btw, initially the cancer was low grade, non invasive. By the time he had the offending kidney removed, it was high grade, invasive.

@vickipm Thank you for your both of your replies! As you know, this kind of cancer is a roller coaster ride. And not the FUN type. You DID answer a question for me that my (several) urologists keep dodging. And that is: Can low grade non-invasive UTUC morph into high grade invasive UTUC. I've been lucky that mine has stayed low grade. My understanding is that Jelmyto is ONLY prescribed for low grade non-invasive UTUC. Maybe your husbands had turned high grade by the time he received the Jelmyto treatment and that's why it didn't work. I am seeing my current urologist on April 1 to consult about the referral to the new urologist who has experience with Jelmyto (he is also an oncologist). I will also ask about the Signaterra blood test. I'm glad your husband is feeling good. I feel fine but as you know, sometimes we UTUC patients have a little pity party because the burning question is always "HOW DID I GET THIS DISEASE??" I've never smoked or worked with chemicals. I took the genetic test for Lynch Syndrome and I don't have it. I'm trying to stay positive and I'm lucky to have a wonderful husband (of 42 years) who is beside me at every dr appt. Again, thank you for replying to my inquiry and I wish you and your husband all the best!

@sally0526
It was low grade noninvasive until kidney was removed.
Tissue report was it cleared margins. Thusly, the recommendation to an oncologist who got him started on Keytruda infusions.
Always something.

@vickipm I have a question if you don’t mind. How soon after the Jelmyto treatments did you find out it didn’t work, and how was it determined? Did tumors show up show up on a .CT scan? And was your husband presented with any other option besides kidney removal? I’ve been reading patients stories on SmartPatients and it seems that the cUTUC comes back with a vengeance (and more aggressive) after the Jelmyto sometimes and they lose their kidneys anyway. Sorry to bother you but I so appreciate your responses. You have certainly given me some useful information to help me write down questions for my upcoming appointment with the urology oncologist. Thank you.

After the Jelmyto regimen stopped in mid summer, UTSW took their time scheduling another uro scope until October 14. He was sent home with a stent, which I removed as it is 500 miles back to Dallas.
They removed some more tumors, but the cancer was spreading. The original urologist then said it looked like it was too aggressive and best move was to remove the kidney including partial ureter Dec. 14. More time for tumors to grow. 😏
He was sent home with a stent a local EMT removed and we had to find a local MD to remove the staples.
We are now with an oncologist and urologist closer to home.
Our oncologist said, "We know what to do with kidney cancer and bladder cancer, but the spaces in between are still being developed. "
If the PET scan shows where the cancer is now, we may be facing chemo, but don't know what kind.

UTUC is such a frustrating disease. And your doctor said it right, Kidney cancer—plenty of research and treatments—-bladder-same thing. But that ureter seems to get the short end in the research and treatment department. I know my current dr is frustrated and I’m glad he took a conservative approach over the last 4 years. But he’s being honest about how much longer my ureter can take these ablations. My cancer always turns up in the worst possible area, the calyx where the ureter joins the kidney, and there are many ‘nooks and crannies” that he can’t get to. My appt with him is 4/1 and I’ll be asking a lot of questions. I hope your husbands PET scan goes well and you get good news. I’m here if you want to talk”talk”.

Hello. Just want you to know that after 3 Keytruda infusions, my husband's PET scan showed NO cancer in his body... Currently. He will continue the Keytruda every 21 days for at least 6 months with periodic scans. He is blessed because he has had no side effects other than being more tired than usual. He'll be 76 in June and does yard and garden work on the side of rocky terrain where we live. I think he's doing well. Best wishes with your upcoming April 1 appt.

@vickipm I've been thinking about you and your husband and wondering how the PET scan went! This is such great news and I'm so happy for you and your husband. I know it was a great relief to hear that result. Thank you for the best wishes for my upcoming appointment!