Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?

I am an 80 yr old and was diagnosed with high grade urothelial carcinoma in June 2022 with mets in liver and surrounding glands and some bone mets as well, and my Oncologist prescribed Gemcitabine + Cisplatin--two weeks on and one week off each series. While my 1st CT after 4 series (8 doses) showed cancer regression, my side effects of extremely low white blood counts and severe skin irritation and other pretty rough health things caused the Oncologist to discontinue that regimen since in his words "it was doing more harm and risk than good". So, he started my on Keytruda, an immunology drug with nhopes that would take over from there. Unfortunately, after 4 doses of that my CT showed some of the cancer was growing again. As kind of a last resort he started me on PadCev which he says target only white blood cells with cancer and not all white cells. I've been on that regimen since Jan 2023 (24 infusions so far and continuing) and although that seems to having positive results he wants to keep me on it for some time yet since the aggressive nature of my cancer cells seem to want to hide and sometime will come. back. Needless to say the side effects of this regimen have been brutal and i now have a bad case of neuropathy such that i need walking aids and very weak and losing weight, etc.

An update and request: unfortunately a further CT and MRI still show pretty active cancer lesions in the liver are still there. So, the Dr. recommends we start Trodelvy chemo. Has anyone had experience with this chemo med?

Hello, I am new here. My husband was diagnosed in April with Sarcomatoid Renal cell of the ureter. He had his Right kidney and ureter removed. He had been on chemotherapy of Gem/Carboplatin. 4 rounds. He just finished his 3rd round. Last Thursday he had a cystoscopy and it showed 2 new lesions. 1 and 2 cm. He will need surgery but they are holding off until chemotherapy is over because of infection risks they said. His type of cancer is extremely rare. They wanted to do Cisplatin but because his remaining kidney is stage 3 kidney disease they won’t because of the risks of further damage to it. We are relying on prayers and support from our church. Praying for a miracle.

@onemaster, I'm tagging fellow members @spooz2 and @jessi684422 who I think may have experience with Trodelvy (sacituzumab govitecan-hziy) treatment.
Did you decide to start on Trodelvy? How are you doing?

@shejac08, I'm sorry to hear that new lesions were found. That must've been difficult news to take in. I'm glad surgery is an option.

Will your husband first complete all rounds of chemotherapy before surgery?

Thank you. Yes. He has his last round this Tuesday.

Hello, I know this is an old post. However, I'm finding it so hard to find information on my cancer. In October, I was diagnosed with urothelial cancer in the renal pelvis, at that time they thought it was non-invasive. A month later, I had a nephroureterectomy. The pathology came back as a high grade cancer which unfortunately invaded the muscle/fat. Fortunately, margins were clear, LVI was not identified and the 5 lymphnodes tested were negative. The tumor was 6cm. Has anyone went through this? I know the news could have been worse, but it is so hard to stay positive, especially, when I can barely find information about this. Im waiting for my oncology consult.

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!

@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.

If you receive ICI, these can boost it:

Antihistamines. https://www.mdanderson.org/newsroom/antihistamines-may-improve-immunotherapy-responses-study-finds.h00-159465579.html

COVID vaccines. https://www.nature.com/articles/s41586-025-09655-y

CBM588. https://pubmed.ncbi.nlm.nih.gov/40765260/

Akkermansia. https://www.prevailovercancer.com/blog/Akkermansia-and-Cancer

Chronotherapy. https://pubmed.ncbi.nlm.nih.gov/40075580/

Intermittent fasting. https://valterlongo.com/fasting-cancer/

If you do adjuvant chemo first, make sure to support the gut health throughout and after. Physicians Choice 60B is a good choice. https://seed.com/cultured/how-to-replenish-good-gut-bacteria-after-antibiotics-guide https://www.sciencedirect.com/science/article/pii/S0959804925000024