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How many..........?

9 years 8 months ago #27483 by Patricia
Well if your son is a family practicioneer and your wife a nurse...i would think actually that they would be more pro-active in your case.....thats a puzzlement. Give them all the facts on BCG that are all posted here and then ask their opinion. There's a lot of research here and the fact is most uro's outside a university setting do not recognise a systemic reaction to BCG. I just want to make sure you're not having one. I've seen it happen one too many times. But seriously you cannot continue the BCG if you still have an infection.
My heart is in the right place........but my brain does rattle on!

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9 years 8 months ago #27482 by Moonerj
Hi Bill
Sorry you are having problems after the 6th BCG treatment.
During my time with BCG 30 treatments, and cancer free for 20 months now, I saw it all. I had 5 UTI's during my last 18 treatments. One was very bad and lasted 3 weeks.
This group convinced me to get a 2nd opinion because I was having many problems with BCG side effects and UTI's. I did get that 2nd. My dx was correct. my treatments were correct. It really put my mind to ease, knowing my Uro was doing everything correct.
I recommend you get your current problems behind you before you begin maintenance treatments. I had more side effects with maintenance and they lasted longer.
I wish you all the best, I was 45 minutes from the top bladder cancer hospital, with the top Uros, I made drive.
Good Luck,

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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9 years 8 months ago #27481 by alsimons

I have watched you through this entire process. Please listen to Pat and Webs what they are saying is for your own well being. In the end you have to make the call. Which ever you choose we will still be here with you. Doesn't hurt to get all the facts.


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9 years 8 months ago #27480 by Webs
Bill eventually you may have to bite the bullet because it is your life and not the doctors feelings that are at stake here. I do not know much about BCG because I skipped that portion and went straight to RC. I do know that BCG can cause some nasty side effects that your doctor should be aware of. If he is not giving you all the attention you deserve then he may be the one committing political suicide. Only you can decide if you are getting every thing you need from him. I just thought I would give you some food for thought.


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9 years 8 months ago #27479 by DoninRichmond
Patricia wrote:

Bill...ok...i know i'm like a broken record......
You're not that far from Johns Hopkins..go to the best.
Anyone else want to support me on this? Or should i just go away

Pat, I have not ignored you. You see it would be political suicide for me to go out of town for a 2nd opinion. We have 2-hospitals in town. My wife is an OR-RN and Manager of OR’s & Recovery Rooms at one of these hospitals. Our oldest son is a Family Practice Dr in town. The medical community is tight-net and extremely political, so they would suffer retribution if I were to go out of town!

For the prostate infection (if that is really what it is) that does not seem to want to go away (3-wks now), I do not think my insurance would pay for a 2nd for that. I went on a 10-mile hike yesterday on the “AT” in the Blue Ridge Mtn’s and today my symptoms are kicking my BUTT!

Start BCG maintenance Sept 10.

Bill Jr
Tumor removed 5/4/09
\"T1 high-grade\"
Started \"BCG\" 5/21/09
Have a 2-yr treatment schedule

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9 years 8 months ago #27475 by wsilberstein
Since you asked, it's been 8¾ years since my diagnosis of TaG3 + CIS. I haven't had a recurrence and I still have my bladder... but I've been burdened with a problematic urethral stricture, so I never get to forget.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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