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Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?
Looking for someone who is/has gone through HGUCC of the renal pelvis willing to share your experience, treatments, etc. Basically similar to high-grade bladder cancer from what I can discern.
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HugInterested in more discussions like this? Go to the Bladder Cancer Support Group.
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@sil839. My 2025-11 RC also yielded insufficient mass for Signatera. They used my 2025-10 TURBT mass for Signatera and Altera. A new development is UTdna which may be a good alternative. https://www.nature.com/articles/s41585-023-00725-2
Sorry about your neuropathy. I have (too) many IRAEs from nivo so far: 1) fatigue, 2) back aches, 3) trouble walking, 4) tired arms, 5) adrenal gland partial atrophy (now resolved), 6) eosinophilia, 7) rashes, 8) itching, 9) dry eyes, 10) low potassium, 11) declining protein, 12) < 4mm nodules on lungs, 13) ground glass on lungs, 14) mucus plugging in lungs,15) elevated liver enzymes, 16) sinusitis symptoms, 17) eosinophilia and probably some I missed. Hopefully, some or most will self-resolve after finishing nivo 2026-04.
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4 ReactionsForgot to mention camu camu as a supplement. Only for ICI, not for adjuvant chemo therapy (too much vitamin C). https://www.targetedonc.com/view/camu-camu-shows-safety-in-patients-with-melanoma-and-non-small-cell-lung-cancer
@sil839 it is unfortunate about the neuropathy, did your doctor say this is temporary? Glad you are in remission, great news.
Neuropathy is usually irreversible, but gabapentin can help. Very common with EV Dosage reduction helps in most cases. https://www.accessdata.fda.gov/drugsatfda_docs/label/2025/761137s029lbl.pdf
Interestingly there is now research that indicates neuropathy in EV confirms efficacy. Plus there are mitigating strategies that do not lessen efficacy.
https://www.onclive.com/view/management-of-peripheral-neuropathy-does-not-compromise-survival-benefit-with-frontline-enfortumab-vedotin-pembrolizumab-in-urothelial-cancer
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2 ReactionsHigh Grade Urothelial Carcinoma Stage 4. Just starting out. 83 years old with CKD
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5 ReactionsHi @slziel, I moved your post to the Bladder Cancer support group (https://connect.mayoclinic.org/group/bladder-cancer/) to help you connect with other members with high-grade urothelial-cell carcinoma like @so1frustrated @ljashton @onemaster @collegeprof @maydayaz @sil839 and others.
@slziel, what treatment plan has been suggested for you? How are you doing?
My journey is just beginning, HG NMI - 3 tumors removed 2/2 via TURBT. I will a cystoscopy 4/26 and go from there. If nothing another scope every 90 days, if something then treatment options. I still don;t fully understand why I am waiting another 90 days for treatment, given the HG status. Glad to update you as this unfolds. How are you doing now? I wish you well.
@jaxfl Thank you, that is such a good article. I am waiting for my Alteration results as I type - they said about 3 weeks. Sorry to hear of all the other issues - I do wish you well.
@michzn
Hello I was diagnosed with high grade bladder cancer almost a year ago. I had chemotherapy before I had a radical cystectomy. I had a rocky course and then ended up, unable to take immunotherapy due to side effects. I was in the hospital because of complications for one month after surgery those were not predictable. I am just now getting my feedback under me. I’m not able to take immunotherapy again so my treatment options for recurrence would be limited. Hope this helps.