Information about bladder removal

sara.anne

Thanks for the reply. I have the Cleveland site bookmarked. I read about the options there. It could be that the Indiana would be the smaller of the major life changes after removal. I would think a Band-Aid would be easier to conceal than a bag.

Badblad,
I posted some information about the first compound (anti-PD-L1) in the "Articles of interest" category. The PD-L1 and PD-1 antibodies are now the newest breakthrough in cancer research. I know a lot about antibodies in general as I am a biochemist and am also struggling with lymphoma for a long time. To explain it simply, cancer cells have a PD-L1 peptide on the surface. This peptide disables the cancer fighting T cells of the immune system. If you block this peptide the cancer cells are killed much more effectively. This new drug works on all cancers that have this PD-L1 peptide on the surface (almost all of them do).

fighterm,

Thanks so much. some of the info is over my head but I have a copy printed. I will have it with me if needed to pose questions. The HS-410 caught my eye as my tumors have been non-invasive and I have done 6 weeks of BSG.

Badblad,
You need also to check clinical trials, I posted them in another thread, so I copied it for you.

Ongoing Trials

MPDL3280A, an anti-PD-L1 antibody made by Roche/Genentech, is undergoing a phase I trial, which showed that it shrank tumors in 13 out of 30 patients who had been previously treated for metastatic bladder cancer, and the responses were rapid and ongoing. The trial is continuing (NCT01375842) and there is a phase II trial in bladder cancer patients which just started (NCT02108652).

Nivolumab is an anti-PD-1 antibody and ipilimumab (Yervoy®) is an anti-CTLA-4 antibody, being produced by Bristol-Myers Squibb. They have a phase I/II trial of nivolumab or nivolumab and ipilimumab in several cancers, including bladder cancer. (NCT01928394)

Oncolytic viruses specifically kill cancer cells. CG0070, a product of Cold Genesys, Inc., is an oncolytic adenovirus that also expresses the immune stimulating cytokine GM-CSF to further enhance the anti-tumor immune response. A phase II/III study is testing intravesical CG0070 in patients with CIS of the bladder or with non-muscle invasive bladder cancer plus CIS of the bladder and who have failed BCG therapy (NCT01438112).

HS-410 is a therapeutic vaccine made from a human bladder cancer cell line that has been irradiated and engineered to express soluble gp96, a chaperone protein that can present multiple tumor antigens to the immune system and act as an adjuvant to enhance the immune response. A phase I/II trial sponsored by Heat Biologics testing HS-410 is currently enrolling patients with high-risk, non-muscle invasive bladder cancer who have completed surgery and intravesical BCG therapy (NCT02010203).

A phase I study at Roswell Park Cancer Institute is testing the DEC-205-NY-ESO-1 fusion protein vaccine with or without the biological therapy sirolimus in patients with a variety of solid tumors, including recurrent and metastatic bladder cancer. This vaccine may help build an immune response against tumor cells that express the cancer-testis antigen NY-ESO-1. The addition of sirolimus may enhance this immune response. (NCT01522820)

ALT-801, a product of Altor Bioscience Corporation, is a fusion of the cytokine interleukin-2 (IL-2) and an antibody that recognizes peptides on the surface of tumor cells. Treatment with IL-2 can enhance the activity of the immune system against tumors but can also cause many side effects. By linking IL-2 to the antibody, ALT-801 can target IL-2 to cancer cells. Two phase I/II trials are testing ALT-801 in combination with gemcitabine in patients with non-muscle invasive bladder cancer who have failed BCG therapy (NCT01625260) and in combination with gemcitabine and cisplatin in patients with muscle invasive bladder cancer (NCT01326871).

I will be going in Dec. 17 for a scoping. I have had 3 tumors removed and the last was TA high grade. If I need the bladder removed I want to be armed with info on the 3 options.

With the neobladder, how do you stop urine from flowing out...and how do you know when you need to go...and how do you push urine out?? Can you go all night without emptying? How long is the recovery?

With the ileal conduit, does the bag stay on all the time? How do you empty it? If you remove it, does urine flow out? If the nerves are spared(I am a Man) can you still have sex?

The Indiana does not sound good to me. You have to cath it to empty. How do you know if it is full?

Has anyone heard of routing the ureters into the large intestine?

Lots of questions. Hopefully the BCG I did makes all this unneeded info. Thanks for reading.