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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer 1st BCG Treatment………….

Viewing 12 posts - 1 through 12 (of 12 total)
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  • #33393
    rob1234
    Participant

    just got back from my first BCG treatment and it was different from all accounts i have read online. here i sit in front of my computer typing and the BCG is still in my bladder. my doctor, who is very skilled, “instilled” it into the bladder and said i could go. he said not to worry about turning sp it gets the entire inside of the bladder, just go about my day. he said there might be some leakage and not to worry.

    he said to hold it in as long as you can. i mentioned the 2 hours and he said the longer the better. he warned me about possible side effects  and said to contact him at once if i get a temp of over 38.5 degC.  will sign in again later to put down how long i could hold it in.

     

    r stull

     

    #33394
    marysue
    Participant

    Hi Rob1234:

    That is way different from anything I’ve heard.  Mind you, health professionals do change their protocols sometimes so things could have changed radically since I completed my last treatments in January 2012.  Protocols do vary from city to city and province to province and even between professionals which unfortunately creates confusion for some. Why this is I have no idea.

    The reason I was told to lay down and do what I’ve called the “chicken rotisserie” act by turning over every fifteen minutes was to ensure that all sides of my bladder came into contact with the BCG.  I was under the assumption that if you remained upright only the lower portion of your bladder would get treated. Another reason for me being glad to lay down during the instill was that my bladder was very spastic after the BCG was in and the only way to hold it in was to lay down with a heating pad to calm the spasms.  A lot of health care professionals think the same as yours that regular body movements will suffice. So, I think the long and short of it is – do what you feel is best to ensure that the drug comes in contact with all surfaces of the bladder wall.

    As for the time period, I was told 2 hours was optimum if you could do it, minimum an hour.  I made it to the 2 hour mark with about 95% of my treatments.  I had a total of 21 over a 3 year period. What I found from experience to attain that goal was to increase the length of cut off time of liquids.  I was originally told don’t drink 4 hours before treatment and to start drinking straight away after treatment was complete.  For me the 4 hours wasn’t enough time – I did 5 hours cut off and could hold the BCG for the required 2 hours.  I was told was that the BCG is only effective for about 2 hours so holding any longer is not to any benefit and holding too long may increase the risk of bladder inflammation.

    As for leakage – I personally disagree.  We have a live bacteria inside us and you certainly don’t want to contaminate anything.  That is why we are told to put bleach in the toilet after voiding and before flushing. The BCG needs to be killed before it goes into the sewer system. I always wore a TENA or Poise Pad during treatment and for a day or so afterwards so if I leaked a bit I didn’t have to worry about it getting on my clothes.  (I have no idea of what kind or if there is any risk to doing laundry with clothes with BCG on them. That is something I don’t think has been discussed before.) I would dispose of the pad in a Ziploc bag into the trash.  Personally I think we should be given Biohazard containers to put BCG supplies and pads in and be able to bring them to the hospital for proper disposal.  The risk of contamination is extremely low but it makes me want to laugh when the nurses in our clinic in Calgary are dressed practically in HAZMAT gear when doing the instill and we are totally unprotected and are just sent out in the community willy-nilly without much knowledge of how to protect ourselves, our home and loved ones. To me, this is not only a personal safety issue but an environmental one as well. That is why most clinics will tell you not to use a public restroom for at least 6 hours after receiving treatment as you won’t be able to disinfect the toilet.

    However, as we always say on this forum – we are not doctors and cannot diagnose, treat or refute what someone has been told by their health care professionals.  We share patient experience and opinions only.  My above commentary is just that – my experience and what I know and feel. If you have any concerns based upon my comments or what other info you’ve read on this site that is different in comparison to what your doctor has instructed as I’ve always said to people – have another heart to heart with your uro and see what he/she says.

    As for side effects – you may or may not have any.  I know of people that had few effects.  I was one of those that had nearly everything in the book.  The main thing will be to monitor yourself carefully for bladder infection.  If you have a high fever, lots of chills, and foul smelling urine and lots of burning post treatment get checked for infection before having the next treatment.  I made it through without any infections despite all the other side effects.

    Best of luck going forward.  ((((HUGS))))

    #33395
    rob1234
    Participant

    2 hours and 32 minutes

    marysue, my urologist actually said that all that turning was no necessary. he said it is not really necessary anymore. he was in his street clothes when he did the job and the nurse who helped him clean up after was in normal scrubs. i was given no special instructions regarding disposal.

    he did say something that was strange (to me). he knows on of my 2 tumors (both very small and T1’s) was high grade from the lab. he said he didnt think it was high grade still but the lab wins.

    rob stull

    #33396
    marysue
    Participant

    Hi Rob1234:

    Your picture definitely looks familiar. I know this is the exact type of BCG I had.

    As I mentioned my treatments ended in January 2012 and I have not kept up with the latest so if protocols have been relaxed because health professionals feel it was over blown earlier on, so much the better.  It was frigging scary when I was doing BCG to have the nurses all suited up and then we go out into the world with this stuff inside us.

    And yeah, I would agree the lab wins.

     

    #33398
    Jack Moon
    Keymaster
    #33409
    SJay
    Participant

    Your bladder isn’t like a bottle with air on top and urine on the bottom when standing upright. It is flexible and has no air in it. That means that your urine is contacting all of the walls of the bladder except where it might be folded over on itself. Doing the “chicken rotisserie” or simply walking should help move the contents of the bladder around so that “fresh” BCG infused urine meets the walls of the bladder replacing the spent liquid, thereby providing more effective treatment. Without any body movement diffusion should provide some change of the BCG solution against the bladder walls, but movement will provide more. At least, that’s my take on it.

    #33441
    Jack Moon
    Keymaster

    Every thing you need to know about BCG from the manufacturer. (Merck)
    This is key point:
    Information for Patients
    TICE BCG is retained in the bladder for 2 hours and then voided. Patients should void while
    seated in order to avoid splashing of urine. For the 6 hours after treatment, urine voided should
    be disinfected for 15 minutes with an equal volume of household bleach before flushing.
    Patients should be instructed to increase fluid intake in order to “flush” the bladder in the hours
    following BCG treatment. Patients may experience burning with the first void after treatment.

    The hospital actually gave me an instruction sheet for post BCG treatment.

    Jack

    #33442
    Jack Moon
    Keymaster

    Every thing you need to know about BCG from the manufacturer. (Merck)
    https://www.merck.com/product/usa/pi_circulars/t/tice_bcg/ticebcg_pi.pdf
    This is key point:
    Information for Patients
    TICE BCG is retained in the bladder for 2 hours and then voided. Patients should void while
    seated in order to avoid splashing of urine. For the 6 hours after treatment, urine voided should
    be disinfected for 15 minutes with an equal volume of household bleach before flushing.
    Patients should be instructed to increase fluid intake in order to “flush” the bladder in the hours
    following BCG treatment. Patients may experience burning with the first void after treatment.

    The hospital actually gave me an instruction sheet for post BCG treatment.

    Jack

    • This reply was modified 5 years, 6 months ago by Jack Moon.
    #34490
    Bladderboy
    Participant

    I have my 1st BCG today. I appreciate all the comments and I think I’m fairly prepared, although I don’t think I’ll ever get “used” to having a catheter. I’ll be back with my experiences. Fingers crossed.

     

    #34491
    Nightingale
    Keymaster

    …my toes are crossed too!…Sending you well wishes and positive thoughts!

    My best

    #34708
    Bladderboy
    Participant

    I had my 2nd BCG  today, and feel alot better than the first one.

    After the first one, I managed only 1 1/2 hours. The nurse told me to try keep it in for 2 hours. About 3 hours later, it was like a sudden flu. Took Tylenol and went to be. I was fine the following morning.

    This week, I managed to keep the BCG in for the full 2 hours. Very proud of myself I am. I took Tylenol when I got home (something that someone on this site recommended) and I think it helps. I feel tired, but not like flu. Also, I drank alot of water.

    Bladderboy

     

    #34711
    Jack Moon
    Keymaster

    Good to hear that the 2nd treatment was much better. Best of luck with #3.

    All the best

    Jack

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