Tumor back after 2 months

Posted by amu45sin @amu45sin, May 22 10:28am

Amu45sin here.
Had TURBT 2 months ago with gemocide, and 6 weekly instillations of BCG.
Tumor is back. Anyone else with similar situation! Thanks for your response.

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Time to consider RC ASAP for best outcomes.

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@jaxfl

Time to consider RC ASAP for best outcomes.

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Thanks for your reply.
Can I ask your experience and treatments with BC. So I can use your information.Thanks for your response

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@amu45sin

Thanks for your reply.
Can I ask your experience and treatments with BC. So I can use your information.Thanks for your response

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Look into ADSTILADRIN or there is a clinical trial of Cretostimogene.

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I had papillary and CIS in a diverticulum. There is no muscle wall in a diverticulum. So automatically stage 3 and extremely high risk. So from first symptoms late 2024-08 to RC on 2024-11-13 with two TURBTs in between was fairly fast. No neoadjuvant chemo was offered. That may or may not have helped. I had adjuvant DDMVAC (4X) and now I am on one year of nivolumab. I also have two CTDNA trackers (Natera Signatera and Billion to One Northstar Response) and I had two genomic profiles done (Natera Altera and Billion to One Northstar Select).

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@fmfran

Look into ADSTILADRIN or there is a clinical trial of Cretostimogene.

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I am coming up on the date when I'll be checked to see whether the first Adstiladrin treatment I received was effective. I am looking ahead, in the event that it hass not worked, and l have learned a little about Cretostimogene. I'd like to know a lot more. Does anyone have more information that they are able to share?

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It is brand new so unlikely. Check BCAN (Inspire) also.

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I have had similar. After 6 BCG had small tumor. Turbt removed it and then gem/doc for 6 treatments. No tumors so far after chemo. Its been 3 months
Now start 1x a month for a yr of gem/doc chemo to keep it from coming back

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Hello @amu45sin. My husband had postoperative chemo and then BCG, During the BCG maintenance he had the first recurrence so also a BCG failure. His was a highly aggressive UCcarcinoma. He ended up with a radical cystectomy, but there have been new drugs approved for use since his surgery. I would look into their availability as suggested by others. The aggressive nature of your tumor may help to make your treatment decisions. If local medical team does not have access or experience with the newer treatments, it is time for a second opinion at a large cancer referral center. Sometimes it is worth traveling a distance to get your best medical care.

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@sepdvm

Hello @amu45sin. My husband had postoperative chemo and then BCG, During the BCG maintenance he had the first recurrence so also a BCG failure. His was a highly aggressive UCcarcinoma. He ended up with a radical cystectomy, but there have been new drugs approved for use since his surgery. I would look into their availability as suggested by others. The aggressive nature of your tumor may help to make your treatment decisions. If local medical team does not have access or experience with the newer treatments, it is time for a second opinion at a large cancer referral center. Sometimes it is worth traveling a distance to get your best medical care.

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Thanks so much.
I am on Medicare with no extra coverage. I have to work with Kaiser or pay on my own what medicare won't cover.
How can I get help payinf fir what is not covered? Thanks for your reply if I go to a cancer center.

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