CancerCompass message board discussion started by Skowe on 7/17/2006 http://www.cancercompass.com/message-board/message/all,6071,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ is there anyone that has had this same exact diagnosis and been able to keep the cancer from coming back? i have had 2 tur's and one round of bcg. the bcg took out most but not all the tumors as i now have to go back for another tur and then follow with bcg and interfuron, as one tumor regrew near the top of my bladder. i do not want to have the bladder out unless i'm sure there is no alternative. has anyone had imr[intensity modulated radiation] or fractional dose chemo in the bladder. or gemzarwhen bcg fails. if so how long has it been in remission? has anyone done the molecular analysis to find out if their p53 protien level is normal as this would help keep the more agressive cells at bay. or how about the web site for an on line 2and opinion from johns hopkins just for sending your pathology and slides to them? Skowe Mon, 17 Jul 2006 00:00:00 GMT our surgeon is very aggressive in taking out bladders that are not respnding to bcg itself. my father had his out and while its a difficult sugery we feel blessed that he is alive with a 90% ten year survival. Many who wait are too late. There is a fish urine test to determine if the chromosomes are messed up. my dads p53 was negative while the fish was positive. also if you send you path slide to hopkins send it to dr., epstein who is the bladder expert. hes outstanding in looking at slides. Good luck! Heart Thu, 20 Jul 2006 00:00:00 GMT Grade 3 cancer as i assume you know is very aggressive and acts very quickly at times. You must not take this lightly. You can read time after time how many wished they had their bladder out earlier. if it gets out the bladder wall you survial is reduced signifiganly. Heart Thu, 20 Jul 2006 00:00:00 GMT I believe it was Skowe that asked about numerous TURBs and treatments.. I was diagnosed in Dec. 2003..I had 1 tumor at the time. I had the tumor removed..TURB..and then we waited & watched as it was low grade. At the next cysto exam, I had another tumor in a different area. This one was high grade..grade 3. The doc did another TUR..an d then I did 6 wks of BCG..( I did have to have half strength after the 2nd treatm't because my effects were so strong. Then I did one 3 mon. maintenance. My next cysto..I had 3 more tumors. Doc removed the tumors..and then we tried mitomycin C in the bladder..after 3rd treatm't..I had bad allergic reaction so we had to stop them. 3 mo. later at my next cysto..I was all clear.. Then 3 mons after that..I had 7 new tumors!! Now the last ones have all been low grade..so the high grade one hasn't recurred. We are now trying BCG/Interfuron treatments. I had the 6 weeks of them..which I had to have every other week because of such bad side effects.. I am now on 3 month maintenance and had a good cysto before the maintenance this time.. My 3rd BCG/Interfuron will be Aug.9th. Then the next cysto November 9th. What I have been told from the get go is that bladder cancer is the most pesky of cancers in wanting to recur..but as long as you keep going for 3 month cystos and keep the tumors at bay..and there is no invasion..Then you are winning the fight. The thing is that I know quite a few that had their bladders out and STILL had it come back in their ureters or kidneys.. so bladder removal is not a sure cure either.. Just keep hanging in there! Lynn Lynndw4771 Sat, 29 Jul 2006 00:00:00 GMT thanks for the message lynn. i was'nt sure there was any one out there that would respond to me with simmilar grade and stage. i had my 3ird tur july 27 06 and i asked for a mitomycin wash at the end of it . since pathology sent the results to another hospital i don't have any results yet. seems funny to me that ellis h. could'nt at least given me their view and then get a 2and opion from another pathologist. i hope to try bcg with interfuron this time but tell me more about your exact treaments wity mitomycin c. maybe i should do that 1st. have you heard of gemcitabine ( GEMZAR) WHEN BCG FAILS. tell me more if you have. also have you had a molecular test done for your p53 protien count? if it is high you can fight the aggressive cells better.seems odd we can't get all of the bladder saving treatments from our urologists. when other treatments are out there why do we have to jump thru hoops to find them? thanks skowe Skowe Tue, 01 Aug 2006 00:00:00 GMT Well, we did mitomycin C first because I had a pretty rough time w/ the BCG.. I also had the mitomycin C wash as soon as my surgery was over with the grade 3 tumor..but then followed that with mitomycin. I have heard it helps a lot of people when BCG didn't work.. OR BCG with Interfuron.. about the same odds I think. The BCG interfuron is a completely different set of side effects for me. Its not unbearable but I feel pretty yucky. I would do what you could with treatments.. as long as the cancer isn't muscle invasive. I wish you the best.. Lynn W. Lynndw4771 Tue, 01 Aug 2006 00:00:00 GMT I had Transitional Cell bladder cancer that was in the kidney and ureter 2003. Had both removed. Did 6 months chemo of gemsar and cistoplatin... One reoccurence last year actually in the bladder superficial cancer not in the muscle... Mitomycin injection. So far so good - no reoccuring and still have bladder, Thank God Do have nodules in left Lower lung but 3.3mm that I am being told could be benign just need to watch however at third CT scan one is now 3.6mm. Still doing CT Scans every 6 months..Dr just said if no change in CT scan in Sept will go to once a year.... Franniefoofoo Sat, 12 Aug 2006 00:00:00 GMT