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Jelmyto in my future: What's treatment like? What should I know?
Hello everyone. I was diagnosed with UTUC (upper tract urothelial carcinoma) in 2022. It was staged at low grade non invasive. My first urologist wanted to take my kidney and ureter out but did refer me to another urologist that I could discuss JELMYTO with. That dr said he would try to laser out the tumors first. Long story short….i have had 6 ablations. The last one on 3/10 and my dr said it is getting more difficult for him to reach my cancer because it is (of course) in the worst possible spot to reach and he’s afraid my poor ureter will not be able to take these ablations much longer. Therefore, I have been referred to a urologist that has actually administered JELMYTO. My question to the people on this forum is: Has anyone actually gone through the JELMYTO treatment (all 6 instillations) and what was it like? And what were your results? I appreciate any feedback you can give me. Also, are there any important questions I should be asking my new urologist concerning the JELMYTO treatment? Thank you all in advance!!
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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.
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2 Reactions@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.
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2 Reactions@sally0526 thank you. #4 has brought on the rash again. The Dr. ordered a cortisone pack, but we got home to late to get it. First night is always the worst. We may take a break, which is common the pharma rep told us.
Best of luck with the nephrectomy. Healing mercies.
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2 ReactionsI am just starting on the Jelmyto treatment once it's confirmed everything is in place. I only have one kidney now. The other one was removed in July 2024. I was living well with only one kidney. Now, because the BC is back as low grade no invasive in my only kidney, the attempt is to rid the cancer in order to save the kidney and not go on dialysis. At first, it was suspicious for high grade invasive. I hope they are correct now that it is low grade and there is a chance to save my remaining kidney.
So @vickipn, yes you can live totally normal on one kidney. I had no noticeable affects going from two to one. Us BC patients are in a race to get rid of the cancer where ever it shows up. Then we hope and pray we get some time before it shows up again.
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2 ReactionsFemale Dx w/ UTUC in January of 2025 age 58. I had two ablations then completed 3 of the 6 recommended Jelmyto treatments. I’ve had poor luck with these treatments, hospitalized repeatedly for sepsis, once requiring ICU. I had repeated stents at least 6. Then after the third session of chemo essentially froze my ureter, had a nephrostomy tube and then kidney and bladder cuff removed, not because of cancer but my inability to get over an infection and continued enlargement of the L kidney. Kidney and ureter as well as 23 lump nodes were removed in July 2025. None showed cancer. I have tested positive for one of the Lynch syndrome genetic mutations. I have been to 5 different urologists and have not found even one that can communicate or be present. Had scans done 8 days ago that can’t be found.. I live in Oklahoma. Anybody out there wanna talk about all of this stuff?
@ronzee50 This is an update on mu Jelmyto. I finished my treatment on July 2nd. Three weeks later, I was scoped and sample tissue taken. To my relief, no cancer cells were found. My surgeon decided to forgo the additional 11monthly treatments. He did not want to damage my ureter with additional ureteroscopies. So, right now I’m on a three month checkup routine.
The infusions were pain free and only took about 5-10 minutes. Although I still felt tired a lot of the time. So I’m now back to the dreaded wait and see.