Metastastic urothelial carcinoma: Will further treatment help?

Posted by cann1 @cann1, Feb 28 5:47pm

In March of 2023, I was diagnosed with urothelial carcinoma, MICU, with metastasis to both lungs. Since then I have been treated with cis/gem; (chemo) avelumab ( immunotherapy) ; padcev ( targeted therapy) and trodelvy. My last scan showed significant increase in metastasis. The next plan is to begin a protocol of carboplatin/gem (chemo) for 7 weeks, followed by a scan. My question would be …if four different therapies have not stabilized my disease….what value is there in repeating the course of treatment?

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Colleen Young, Connect Director | @colleenyoung | Mar 1 2:00pm

@cann1, fellow members @onemaster and @sepdvm have experience with metastatic urothelial carcinoma and some of the same treatments you've had.

You ask a very good question - "if four different therapies have not stabilized my disease, what value is there in repeating the course of treatment?" so I pulled it into its own discussion.

Naturally, part of the response or decision depends on your personal choices and overall health status. I would want to weigh the side effects and quality of life against the likelihood of stabilizing or slowing progression. Here's some of the questions I would ask the cancer team:
- How might carboplatin/gem succeed where previous protocols have not?
- What are the potential side effects?
- How can they be managed and quality of life maintained?

@cann1, are you also in the care of a palliative care team to help manage side effects and your comfort?

cann1 | @cann1 | Mar 1 6:35pm

In reply to @colleenyoung "@cann1, fellow members @onemaster and @sepdvm have experience with metastatic urothelial carcinoma and some of the..." + (show)

Yes, I am.

Sue, Volunteer Mentor | @sepdvm | Mar 2 9:27am

Hello @cann1. I'm sorry to hear about your resistant cancer. My husband's urothelial cancer was aggressive but not metastatic. I have no experience with UTC beyond that. It sounds like your medical team is trying all they have to offer. Have you looked into any clinical trials since you have not responded to all these drugs? Have you considered a referral to a large cancer center? Have you considered adding in any immune system stimulants in the form of complementary therapies? I can recommend a couple of books that have helped me as I have metastatic head and neck cancer and have lived with this for 13 years, doing complementary therapy also since the beginning. How Not to be my Patient by Dr. Ed Creagan, a Mayo palliative care doctor. Radical Remissions by Kelly Turner. The Rebel's Apothecary by Jennifer Sansouci. I take Beta Glucan, Curcumin, a mushroom mixture, and Manuka honey daily. Some things I started early on, others I have added. Is there a naturopathic physician in your area to help with complementary treatments? When traditional medicine has offered all they can, it is possible to do more that doesn't have the medical science to back it up, but won't hurt and may help. Don't give up hope.

cann1 | @cann1 | Mar 2 1:01pm

I am being treated at Dana Farber.

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