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IMPORTANT: The Bladder Cancer Canada discussion forum is not a substitute for professional medical advice or treatment. The opinions & contents in this forum is for information only and is not reviewed by medical professionals. They are experiences & opinions of patient members like you, and is NOT intended to represent the best or only approach to a situation. Always consult your physician and do not rely solely on the information in this site when making decisions about your health.

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #8272
    mikemmc@bell.net
    Participant

    Mike M here in Ottawa, On.
    I am beginning BCG in 2 weeks & am hoping to speak with someone in person if at all possible in Ottawa.
    I have read the pamphlet but want to know more about the clean up part once you come home. My wife & I are concerned about the TB live virus?
    I am on various counseling list but they are not happening quite timely enough.
    Of course I am happy to discuss it on the forum here.
    I did a search for the topic but did not come up with anything as yet, so if there are some old discussions of it I am happy to go there.
    thanks
    Mike M

    #19461
    Jack Moon
    Keymaster

    Hi Mike

    I sent you a private message. I would be happy to speak to you regarding your diagnosis and BCG treatments. I have had 30 treatments over a 4 year period after being diagnosed with bladder cancer in 2005. Been cancer free since 2007.
    Several members on this board have had BCG treatments and I am sure they are happy to answer any questions or concerns you might have regarding the treatments.
    All the best, BCG = Bladder Cancer Gone
    Jack

    #19462
    bluebill
    Participant

    Hi Mike,

    I’m will receive my 10th BCG treatment this week so here is what I do after each BCG treatment will regard to cleanup. My wife and I live in a 2 bedroom condo which has two bathrooms. So on treatment day one belongs to me for six hours so no problem there. When I void after treatment I sit down (not my normal procudure) and do so each time for the next 48 hours this helps a lot. After voiding I add 1 cup of Javex washing down the sides of the bowel and wait for at least 15 minutes before flushing. I do the same procedure each time I void until the six hour mark at which time I do a cleaning of the entire toilet. This being said I have been told of patients going back to work and using the public washrooms since they can’t get time off work. Whether they use Javex I don’t know. Since I’m retired I don’t have any of these problems.

    This procedure is here:

    http://www.uroinfo.ca/brochures_bladder/BCGforBladderCancer.html

    Hope that helps if you would like to talk more just send me a private message and I will contact you.

    Here is more information on my first six BCG treatments and what worked for me.

    I take 2 Tylenol 1 hour before the BCG treament. My treatments are usually at 9:30. 20 minutes before the 2 hours are up I drink 250 mls of water at the 2 hour mark I drink another 250 mls. From 11:30 AM I try and drink a minimum of 2500 mls and take Tylenol again only if needed.

    Reactions I had.

    1st one I didn’t have any reactions.
    2nd I definitely new something was happening.
    3rd, 4th and 5th more of a reaction joint pain, flu like symptoms and fatigue.
    6th joint pain, flu like symptoms and fatigue.
    .

    All in all the side effects were bearable but we all react differently. Hope yours will be as good as mine.

    The maintenance dose which is 1/3 the dose I had the same symptoms joint pain, flu like symptoms and fatigue. I now drink 3 litres of water the first day and 2 to 3 litres the second day.

    Wishing you well.

    #19465
    cheryl9
    Participant

    Hello Mike

    Just finished my 18th BCG in 13 months.

    Cleanup: live in the country so bleach is not the best for our septic system. Instead flush three times after each void. Also wear sani gloves through the process. I have eczema on my hands thus am prone to lots of very small cracks on my hands. Wash after each void with paper towel and throw it out immediately in a separate plastic bag. All this for the first six hours. I also claim one bathroom all to myself for the six hours. Then sterilize toilet with Lysol toilet cleaner and all is good to go.

    The TB virus is live but quite muted.

    I am a nut nut for drinking water. I do 12-16 glasses a day. Freaks my doctor out and he insists on regular blood tests to check my mineral levels because too much fluid can flush essential minerals, etc. from your blood. Everything is always fine. Where I am going with this: from my personal experience and discussion with others, the amount of water consumed after treatment makes a huge difference on discomfort levels afterwards. I hit the fluids for an hour before the 4 hours before the BCG (best to stop fluids for 4 hours before treatment so that the BCG doesn’t get diluted during the two hours after treatment). Be sure to do the 2 hour rotating after BCG. Then start drinking fluids – lots. I do 24 ounces an hour for the first three hours then back off to 16 ounces an hour for remaining three hours. Makes the 6 hours after a breeze. If I don’t do that much fluid, I will have pain, burning on voiding and some blood. I don’t take any pain killers because as long as I keep the fluid levels up, there is no pain. Fluids should be clear water.

    One other thing I have learnt: be cognizant of the procedure to be sure the nurse does it right. Key things that I have caught nurses doing wrong: not draining the bladder before the BCG goes in; mixing the BCG too soon (BCG only lives for 2 hours after it is mixed). This means the BCG should be mixed while your bladder is draining. One time the nurse mixed the BCG first thing in the morning. By the time of my appointment, the BCG was dead. Best is to ask for an experienced nurse to do your procedure. Discuss the process with the nurse so that you can learn and are assured the nurse is experienced. Don’t buy into “those are just guidelines and you don’t really have to follow them”. Yes, I had a nurse tell me that. Guidelines are there to ensure the best results and considering this involves your life, you bet guidelines should be followed!

    The biggest, best thing you can do for yourself after your BCG treatment and 2 hour rotation: relax; put your feet up; visit with your wife; and laugh. It will make a huge difference as you get used to the process.

    As you go through the treatments you will find what works best for you. Now that I have the fluids nailed down, I putter around doing various things afterwards. My second last treatment I was in the garden picking raspberries afterwards.

    Almost forgot: make sure you stay close to a bathroom for those 6 hours after treatment.

    After treatment and for the next couple days you will probably feel tired. If you are a morning person, you will want to do your treatment earlier in the day. Otherwise the tail end of those six hours afterwards can be very tiring. Flu like symptoms are also common. I also had a lot of joint pain. Nothing to be alarmed about as these side effects are not life threatening.

    BCG treatments are not as scary as the literature can make them seem. Just take a deep breath, follow the guidelines and spend the rest of your treatment day being lazy. It’s allowed!

    Take care

    #19477
    KIOWA
    Participant

    Well BCG is not actually a live virus. It is an attenuated virus, deadened. I think the others who responded pretty much said everything I would say. I had BCG, 8 rounds, and I had a tough time with it. Made me sick as a dog, and felt horrible and it was worse than the chemo I had for colon cancer. No infections though. Most people don;t have side effects that bad. BCG is highly variable. I don;t think you need to be put in a bubble or anything but cleanliness and sterility are important but it should not change your lifestyle and it’s not all that much of a problem. Good luck with your treatmemnts.

    Kiowa

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