1. < Bladder Cancer
Profile picture for so1frustrated

Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?

Posted by so1frustrated @so1frustrated, May 17, 2021

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.

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

Profile picture for jaxfl
jaxfl | @jaxfl | Dec 8 11:09am

@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.

FYI: UTUC is fairly rare. You will find more patients on BCAN/Inspire.

REPLY
Profile picture for jaxfl
jaxfl | @jaxfl | Dec 8 1:57pm

Forgot 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

REPLY
Profile picture for jsa236
jsa236 | @jsa236 | Dec 10 12:22am
In reply to @sil839 "@jaxfl and @jsa236 I was diagnosed with urothelial carcinoma high grade in July 2024. I had..." + (show)
Profile picture for sil839 @sil839

@jaxfl and @jsa236
I was diagnosed with urothelial carcinoma high grade in July 2024. I had spread to the lungs. I was treated with keytruda and padcev successfully until it started to affect my creatine levels. I had a hiatus period until the creatinine levels were normalized. The keytruda and padcev were resumed, but did not work. I was then put on carboplatin and gemzar which worked and then I had five pinpoint radiation treatments for two remaining nodules in my lung. I went to the oncologist last week and he says I’m in remission after having a pet scan and CT scans.
I tried Signatera but the company Natera says there is not enough material on the block from my lung biopsy to do the test. My doctor said something about doing this with another company such as global 360

Although I feel very well, I have been left with a severe case of peripheral neuropathy affecting my balance and walking.
I too have had difficulty finding people on the site with similar experiences and this type of cancer.

Jump to this post

@sil839 it is unfortunate about the neuropathy, did your doctor say this is temporary? Glad you are in remission, great news.

REPLY
Profile picture for jaxfl
jaxfl | @jaxfl | Dec 10 8:16am

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

REPLY
Profile picture for jaxfl
jaxfl | @jaxfl | Dec 10 1:34pm

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

REPLY
View MoreView Less
Please sign in or register to post a reply.