1. < Bladder Cancer

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.

onemaster | @onemaster | Sep 22, 2023
In reply to @markymarkfl "My 83 year old father in law just had a cancerous kidney removed in June. Although..." + (show)
@markymarkfl

My 83 year old father in law just had a cancerous kidney removed in June. Although my understanding is that Urothelial Carcinoma is more common in the bladder, his was a high-grade UC in that one kidney, with no mets found.

For adjuvant therapy, his oncologist concluded Gemcitabine + Cisplatin/Carboplatin would be too hard on him, so he'll soon start monthly Opdivo for a year.

My own father, who lost his battle with pleural mesothelioma in June at age 85, really struggled on a combination of Opdivo + Yervoy after 4 months, so I'm hoping my FIL does better. If it's only one drug instead of two, and at 4-week intervals instead of 3-week, he has a good chance, but a few other comorbidities to deal with. 🙁

I'll be re-reading the history and following this thread closely. Thanks everyone for sharing!

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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.

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onemaster | @onemaster | Oct 2, 2023
In reply to @onemaster "I would like some help deciding how I should discuss future treatments for my high grade..." + (show)
@onemaster

I would like some help deciding how I should discuss future treatments for my high grade urothelial metastatic carcinoma which was diagnosed in June 2022. I am 80 yrs old with no prior cancer and this has been quite a journey. The Oncologist started me on Cisplaten/Gemcitabine but after 7 infusions with a CAT scan showing positive results he discontinued that therapy due to a side effect of severe low white blood cell counts. He then started me on Keytruda but after 4 infusions my next CAT scan showed negative results and some regrowth of the liver lesions and bone cancer. He has had me on a targeted chemotherapy called PadSev since January and successive CAT scans show Kidney issues and liver lesions are gone and bone cancer reducing and healing. Needless to say that severe chemotherapy for the past nine months has resulted in neuropathy in my feet and hands such that I am needing walking assistance and other nerve and skin issues.

The Oncologist wants to continue my chemo regimen of two infusions every three weeks for the indefinite future--as long as I can tolerate it--since that is the only approach that will keep my cancer from returning and becoming more aggressive. I'm not sure I can continue to have my neuropathy worsen, and wonder what other options the Oncologist has that I could perhaps discuss with him.

Does anyone have any thoughts? Thanks!!.

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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?

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1 reply
shejac08 | @shejac08 | Oct 2, 2023

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.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 15, 2023
In reply to @onemaster "An update and request: unfortunately a further CT and MRI still show pretty active cancer lesions..." + (show)
@onemaster

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?

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@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?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 15, 2023
In reply to @shejac08 "Hello, I am new here. My husband was diagnosed in April with Sarcomatoid Renal cell of..." + (show)
@shejac08

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.

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@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?

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1 reply
shejac08 | @shejac08 | Oct 15, 2023
In reply to @colleenyoung "@shejac08, I'm sorry to hear that new lesions were found. That must've been difficult news to..." + (show)
@colleenyoung

@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?

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

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