← Return to Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?

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Rare and difficult to treat. https://rarediseases.org/rare-diseases/urothelial-carcinoma-of-the-renal-pelvis-and-ureter.

Ask about signatera (MRD monitoring), altera (genomic profiling) and immunotherapy (adjuvant nivolumab or less frequent pembrolizumab). Adjuvant chemo (DDMVAC) is also sometimes used.

If already spread, PADVEC + pembro (EVP) is also very common. https://www.nejm.org/doi/full/10.1056/NEJMoa2312117 Ask for a PET scan to rule out spread or confirm it.

Ask about PDL1 presence. It can provide some insight into likely effectiveness of ICI (immunotherapy).

Do not give up! Modern advances are highly encouraging!

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Replies to "Rare and difficult to treat. https://rarediseases.org/rare-diseases/urothelial-carcinoma-of-the-renal-pelvis-and-ureter. Ask about signatera (MRD monitoring), altera (genomic profiling) and immunotherapy..."

@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.