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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jaxfl | @jaxfl | May 22 12:30pm

Time to consider RC ASAP for best outcomes.

amu45sin | @amu45sin | May 22 2:19pm

In reply to @jaxfl "Time to consider RC ASAP for best outcomes." + (show)

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

fmfran | @fmfran | May 22 3:58pm

In reply to @amu45sin "Thanks for your reply. Can I ask your experience and treatments with BC. So I can..." + (show)

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

jaxfl | @jaxfl | May 22 7:00pm

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).

djr5 | @djr5 | May 23 9:26am

In reply to @fmfran "Look into ADSTILADRIN or there is a clinical trial of Cretostimogene." + (show)

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?

jaxfl | @jaxfl | May 23 5:55pm

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

scott232 | @scott232 | May 24 8:14am

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

Sue, Volunteer Mentor | @sepdvm | May 24 8:54am

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.

jaxfl | @jaxfl | May 24 9:28am

Yes. Find a NCI hospital. https://www.cancer.gov/research/infrastructure/cancer-centers/find

amu45sin | @amu45sin | May 24 1:54pm

In reply to @sepdvm "Hello @amu45sin. My husband had postoperative chemo and then BCG, During the BCG maintenance he had..." + (show)

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.