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no chemo for non invasive cis?

3 years 1 month ago #51841 by Jfoutz
Rocky,
So glad you got through the surgery and doing really well. Hope things continue as well going forward. I am just beginning this journey, so I check the board nearly everyday and it gives me so much hope to hear everyone's story.

God Bless,
Janice

4/17/16 Hematuria
5/20/16 Turbt TA HG
6 BCG completed 8/19/16
Waiting.......10/20 cysto

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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3 years 1 month ago #51840 by Alan
Rock,

Thanks for the update. It encouraging to all when we know there is living and life ahead!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 1 month ago #51839 by sara.anne
I am so glad to hear from you and that you are doing well. I know that the road ahead can be a bit "rocky" (that was a pun!) but you are already ahead of many at this stage.

Congratulations!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 1 month ago #51838 by rocksteady
Hello All, just a quick follow up- I had the RC 8/1/16, with the DaVinci, released from hospital 8/6/16. I have an ileal conduit. So I have a ostomy pouch over my stoma. I have stents in place as a bypass until the stoma heals. Seeing surgeon 9/7/16. I must say I am surprised at how well it has gone for me. No leakage yet. I have a home nurse come every 4 or 5 days to help/ teach how to change bag, a 2 part hollister. After stent are out I may look at different, simpler systems but this is working now and I'm not changing! Stoma is healing well. After reading some other posts I must stress the importance of using your adhesive remover to get the old rings off and using skin prep to attach new gummy and ring. I shower with bag on and don't use anything like soap in the immediate area of the bag and rings.
I feel pretty good, didn't expect digestion problems though I should have.
Not much time has passed but I think things are going to be ok, at least it doesn't hurt when I urinate.
Thanks for everyone's input
rocksteady

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3 years 3 months ago #51591 by SantaMonica
Thank you this a great article

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3 years 3 months ago #51585 by sara.anne
Here is the most recent summary from the National Cancer Institute on clinical trials for non-muscle invasive bladder cancer.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927845/
Yes, there are some very early ones using pd1 inhibitors, but these are very early. In addition, early clinical trials are not usually available to patients with other medical issues.

If anyone is interested in exploring such clinical trials, I suggest that you contact
Dr. P. Agarwal
at the Center for Cancer Research, National Cancer Institute, NIH
who can give you contacts for the most recent information.

Clinical trials are NOT for everyone, so you need to do extensive research to see if one is right for you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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