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The perils of BCG

11 years 1 week ago #21649 by pemquid
SaraAnne--
I also recently had an experience with BCG running out,which my uro thinks may have been due to defective tubing. I knew the catheter was all the way in, and the instillation had just started when I felt it running out, so only about 1/4 or less of the BCG had been used. The nurse who was doing the instillation (my 5th in the 6-week series)felt terrible and went to got the Dr. right away, but first cleaned me up really well, and also inserted a betadine swab in my female "lower regions," which the Dr. had told her to in a case such as this. The Dr. said it was OK to do a full instillation after this, which he did, as not much had been used in the first batch, and it seems as though most ran out. The nurse called me later in the afternoon to check up on me, as she said she'd worry about me all weekend otherwise. I had no ill effects at all from this episode, though did wash up again when I got home to be on the safe side.

I have my next cysto at the end of Oct., then 3 weeks maintenance starting in early Dec. Hope I steer clear of the symptoms you had! :unsure:

Please let me know what you find out about flu shot timing.

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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11 years 2 weeks ago #21615 by Nix
Sara Anne,

I am so sorry you have to go thru this. It is hard enough to deal with Bladder Cancer and everything that goes with it! Over a year ago, when I was to start my BCG, my Uro's nurse was new. I really liked her, however, when I heard she had never done BCG before, I told my Uro, I didn't want to hurt her feelings, but since he had several partners, I wanted one of the other nurses that had BCG experience, to administer the BCG. His reply was "she has to learn sometime" - I agreed, but she wasn't going to learn on me:) I think her feelings were hurt at first, but I didn't care and she did get over it. Now for all my maintenance I have the same nurse. I do think experience makes a difference. My nurse always streams the BCG slowly to help with the spasms. I still get spasms, but maybe they aren't as bad as they would be. It is hard to stand our ground, but unless the professionals have had Bladder Cancer themselves they can't know exactly how vulnerable we feel.
Hopefully, this past one will be OK and you can ask for another nurse next time.

Nix

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

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11 years 2 weeks ago - 10 years 4 months ago #21614 by egtmcsq

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11 years 2 weeks ago #21609 by Patricia
Thats just inexcusable sara.anne....i can't believe that happened to you.
Once outside your body, the TICE® BCG fluid may be unsafe for you or others to touch...
I would email a letter to Dr. Lamm and tell him what happened and ask his opinion and what you should look out for. Lord i hope it doesn't become systemic.
Sorry..i'm still just shaking my head...Pat

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11 years 2 weeks ago #21607 by sara.anne
Just had my third maintenance BCG after having to cancel it last week because of severe, prolonged diarrhea after the second dose.

The installation did not go well. For the first series I had an older (beyond
retirement age) nurse who was the image of confidence and calm and control.
She has now been "put out to pasture" (if I read the signs correctly) and for this
series I have a very young (probably competent) gal who is the total opposite and
gives the impression that she is flighty and may not be on top of things. She stuck
the catheter in and I screamed...told her she hit something...she started to squeeze
the bulb anyway and the bacteria solution ran down my butt and all over. Just then
Dr. Janoff came in; nursesaid she couldn't understand why this was happening...he
showed her that she had not gone into the bladder but had hit the side of the urethra
instead. He finished the installation and cautioned me to go right home and take
a shower to get the stuff all off me.


Came home and showered. Having a very uncomfortable afternoon...to be expected..
with lots more bleeding than usual. Let us hope that this is from the bladder and NOT
from a scrape on the urethra. A cut/scrape on the urethra could lead to the BCG
getting into my blood stream, or causing a horrendous local reaction in the urethra.
I will keep good thoughts, but am not happy.

Still trying to find out how long I should wait to get a flu shot. Dr. Janoff isn't sure....said first that I should probably wait 6 weeks, then changed it to four. I tried to access the web page for sanofi pasteur, maker of TheraCys BCG and it won't come up.

Things will look better tomorrow.

Sara Anne....who just needed to vent

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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