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Diagnosed, removed, waiting on biopsy report

6 years 8 months ago #44334 by shihtzudaddy
Toby's 3 month check up was good. She did not see anything odd with the scope in the office. The following week on Feb 6 he had the first of 3 maintenance treatments at 1/2 strength. There had been no blood for 3 months, none in the sample on the 6th.

After the treatment is's been very hard. Bleeding every single day with strings/particles that come at the end of urination not bloody urine. Blood/pain has been every time and every day since March 6. We called the urologist and they cancelled this Wed treatment (March 13). He is still bleeding, urination is frequent, pain and throbbing in the urinary track after urination. No fever. He can only go about 30 mintues between the urge to go again comes on.

They seem to think it was worse this time b/c all treatments are just different. This one is by far worse than any of the inital 6.

Should he still be bleeding 10 days out from 1/2 strength? And if the bladder showed no new growth just want is this BCG doing and eating away at? We just don't understand why half strength is so much harder and with no blood in 3 months now it's every time, every day it worries us.

Kathy & Toby

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6 years 9 months ago - 6 years 9 months ago #44039 by Alan
Could be just irritation BUT, this sounds like a urinary tract infection. Do NOT wait until 2/28 because if so it can be bad for your kidneys. A simple urine test/culture can answer that. Do it tomorrow. I have to have strong antibiotics after EVERY cystoscope (which is now annual) because some nasties are always stirred up. Burning and more frequent voiding were my symptoms!

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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6 years 9 months ago #44032 by shihtzudaddy
It's been a very good 2 months since my last BCG treatment. Toby's 9 week follow up is Feb 28. I knew he wasn't 'up to par' and finally today he told me he had some burning when urinating, not blood or particles. I asked about his urgency and he said he tries to wait as long as he can between going but he's not over waiting.

What could the burning be? He has been very tired the entire time, even after the treatments stopped. Even now, 2 months after the 6th treatment. He had blood work done by his PCP and all is good, little high on Gluclose but otherwise fine.

As you know I do all of the typing and questioning for US so I knew right where to come when he JUST told me about the burning.

Thank you all for all of your information and guidance during the experience. I see this thread has over 3000 views - I hope it has and will continue to help others.
Kathy & Toby

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6 years 11 months ago #43610 by mmc
You are on the right track!

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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6 years 11 months ago #43609 by shihtzudaddy
I asked the nurse today about maintenance plans. She said our doctor schedules the follow up about 9 weeks after the 6th BCG. We already have that appointment. At that time she will do a scope and see what we have. Then if all is clear and nothing needs removed she will start with 3 week treatments. Then assuming all is good he will go another 3 months, see the doctor for a scope, then another 3 week treatment.

I will look at the link Nancy- thank you all.
Kathy

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6 years 11 months ago #43608 by Nix
Here is a link that explains everything with BCG and Maintenance

http://blcwebcafe.org/drlammsprotocol.asp

Hope this helps

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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