Once again it is always something

14 years 2 months ago #30061 by DougG
Replied by DougG on topic Once again it is always something
Prayers are with you, Cynthia.

Anita & Doug

Anita
Forum Moderator
Caregiver
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14 years 2 months ago #30059 by sara.anne
Replied by sara.anne on topic Once again it is always something
My gosh, Cynthia. You must stay up nights thinking of stuff like this!!! I do hope that your docs can connect with the guys that Pat found and find a better way to fix this. What would we do without Pat's research in all areas?

Anger helps....let it out. And you KNOW that we are all with
you in this.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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14 years 2 months ago #30054 by mmc
Replied by mmc on topic Once again it is always something
Fingers and toes and eyes crossed. :silly:
Hoping for the best!!!!!!

Maybe they can put a "Y" valve in so the ureter goes to the kidney, but also has an emergency value that goes to the exterior that you could pull the plug on if you ever got another clog. I know, know I'm getting crazy but who knows what they will be doing in future years.

The engineer in me can't help but try to find alternate solutions. Who'd have thought to use a sock for an CO2 filter before they did it with Apollo 13?

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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14 years 2 months ago #30052 by Cynthia
Replied by Cynthia on topic Once again it is always something
Ok this is what is going on I sent the information you guys sent me to my guys at MGH and asked the question. They are now consulting with their laser guy.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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14 years 2 months ago - 14 years 2 months ago #30048 by mmc
Replied by mmc on topic Once again it is always something
Great find Pat!

Looks like Cleveland Clinic has been doing this.
Article (2007)

The same team you quoted above also did a follow up for long term efficacy of the procedure.
Long term efficacy (2006)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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14 years 2 months ago #30047 by Cynthia
Replied by Cynthia on topic Once again it is always something
Pat do you know of anyone doing this here? I will do more research once I catch up here at the office tonight I think. My plan is as of now to go forward with their plan. But and that is a big but I am going to try to find a hail Mary. I know Sailorman knew of a guy that does ureters. But right at the moment my give a dam is busted. I am still recouping and my energy well has run very low.

I am throwing this out to discussion. Ok this is the bottom line in this discussion keeping the kidney as healthy as I can for as long as I can.

Ok I get the point that I can't have an Indiana without enough ureter to run to it. Their fear is if I can find a way to keep the ureter open it will just want to close up again. When you only have one kidney it happens fast it seems and is a very dire emergency. Now you could probably keep it open if you ran regular CTs with contrast, with my kidney function that is not a doable. And who wants to live like that if they can get out of it at all. They feel that the best idea is to get rid of the part of the ureter that seem to be prone to scaring it is also the part that got the most radiation and where the connection was done to the Indiana. It is a given that what ureter that remains will have to be monitored for narrowing maybe with urogram? Your thoughts?

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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Moderators: Cynthiaeddieksara.anne