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Viewing 9 posts - 1 through 9 (of 9 total)
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  • #37346
    rob1234
    Participant

    My doctor prescribed a set of three bcg “installations” as an inoculation. no return of anything yet. i was always told to have it in me for no more than 2 hours. today i did a baddie. i nodded off at my desk until 2 hours and 20 minutes had passed. i of course got up and rid of it right away. there is some urgency and burning , especially along the urethra, but nothing more than has happened before. there is bleeding but again nothing more than has happened before.

    did i burn the crap out of myself or what?

     

    r stull

    #37350
    lefmike
    Participant

    Hi Rob 1234.   I’m sure only your doctor or maybe a nurse where you had the BCG instilled can accurately answer that for you.  However, I remember reading on this site that there was someone who was routinely going over the 2 hour window with no ill effects. But I would check with someone in the “know” to be assured.  After you woke, did you drink a lot of water to clear your system?

    p.s. Rob,  in one of your post  #33395 you mentioned 2 hours and 32 minutes, you may already have the answer..

    Best Wishes

    Mike

    #37359
    Joe
    Participant

    Hi Robb

    Actually, you did a good job.  I often hear people get concerned when they could not hold even 1 hour.   20 minutes +/- won’t make much difference. Just try not to doze off the next time or setting an alarm will help:)

    Joe

     

     

     

     

     

    #37385
    gil
    Participant

    Hi Rob! You didn’t mention some aspects of receiving BCG that are very important. You probably followed  the demands of treatment but I will run through the lines established by my docs.

    Told my doc  during annual visit about potential blood spots. Had bladder cancer surgery  November 2016. High Grade.

    As a precaution doc started BCG. In October 2019 I had my 21 st. BCG with 6th   cystoscopy December 3, 2019. No evidence of any cancer nor  did I have any problems with treatments.

    I live 80 km from my treatment. ( just enough for my mileage to be income tax deductible. LOL!)

    As soon as installation  completed I jump in my car and head for home.In        1 3/4  hrs exactly I start drinking water when  I am not quite home during Fri afternoon traffic.  I can usually get 5+ btls down in next 15 mins before I arrive home. Start peeing in 2 hrs after instillation. I can  stop  on the road  if I have to but I don’t want to poison the environment and kill the trees.  So I carry bleach, a pail, wet face cloths and towels in my trunk in case I hit 2 hr  mark. only happened once I went over 10 mins.

    I drink btls and btls of water for next 6 hrs.. reserving 1 bathroom for the rest of day just for me. The stuff you are peeing is POISON! so you want to be very careful.I don’t even pee in urinal on way home. Don’t want to potentially impact others.

    After peeing I carefully  pour bleach into toilet, close cover, open window, get out of bathroom. Scrub my genitals with hot soap and water.  Let toilet stand 15 mins, flush toilet. Get out of  BR for few mins til air settles, clean toilet seat, etc.I do this  after each pee session FOR 6 HOURS AFTER THE FIRST PEE SESSION. Completed 8 HOURS AFTER INSTILLATION.

    Nurses are very clear about this process after each instillation.

    I use nitrile gloves during all cleanups.

    As a side note the best thing about getting bladder cancer for  me was when they did CT or MRI after the surgery the camera went up too far and showed possible chest issues. The discovered lung  cancer. Surgery March 2017  and no further evidence  of cancer since.The 2 cancers are not related.

    By the way University Health Network or UHN, in Toronto has fantastic pamphlets, on line, describing, in lay language, numerous processes in cancer treatment.  Extremely simple and helpful.

    Gil

     

     

    • This reply was modified 4 years, 5 months ago by gil.
    #37387
    gil
    Participant

    I give up ! figured the info I had might have been helpful to Rob.. but can’t take anymore time.

     

    #37428
    DDep
    Participant

    Hello rob1234

    I would ask your medical team if, in your case, it is OK that you held the BCG for that time.

    THAT BEING SAID: I have held my BCG early in my maintenance installations for times of over 2 1/2 hours with no ill effects.   Later, during my 36 month treatments I could barely hold it for 2 hours (once only 1 1/2) hours.

    Personally, I do not think you have anything to worry about.

    God Bless

    DDep

    #37547
    rob1234
    Participant

    sorry for taking so long to reply. thx to gil for the information.      it wasnt too long for the bcg, all is well. go for the cysto, which i have every reason to believe will come out clean.

     

    r stull

    #37616
    marysue
    Participant

    Hi rob1234:

    You must have one tough bladder that didn’t get too inflamed from the BCG.  I too, had to watch that I didn’t nod off while doing the treatment.

    I did my first set of 6 at home because I was close enough to the cancer centre where I had to go.  When I got home – hubby driving and me laying down in the back seat dealing with bladder spasms; I would do a hop, skip and jump into the house and make a beeline for my bed.  I had to lay down for my treatments.  My bladder really rebelled at the catheter intrusion and it was a real fight to keep the drug in me but I managed.  I would get dozy while lying on my bed.  Most times I did stay awake enough to turn over every 15 minutes or so.  My hubby would check on me at the 1 hour and 2 hour mark to make sure all was well and once I did my initial post treatment urination cursing all the while he would head back to the office.  I did partially lose a couple of treatments on the way home.

    For my second round I had to go to the hospital in the south end of the city. I got permission to stay there for the 2 hours because of personal circumstances of spastic bladder issues, distance to hospital and the fact that we were in the middle of a brutal winter and all routes home were under some form of construction.  Good city planning I tell you! A trip that would normally take about 30 minutes was taking anywhere from 60-90 minutes or more on very slippery roads.  I managed to convince the clinic manager that I felt my personal safety was at risk.  I did take a bucket with lid, small bottle of bleach, wipes and medical gloves in case I had to urinate before getting home. What they did at the clinic was leave the catheter in and clamp it shut for the 2 hours.   I would be on a gurney with the curtain drawn for privacy. The nurses left it up to me to decide how long I could tolerate it. They would check on me periodically to make sure that I was okay and then wake me at the 2 hour mark if I had dozed off.  I made it to the 2 hour mark all but 2 times.  When I ran the call bell they would come in with a floor bag, attach it to the catheter.  I would stand up and let the urine drain out which took around 5 minutes.  Then the nurse would remove the catheter and take it and the bag full of urine and dispose of it in the toxic waste collection. My hubby would be there to pick me up.  I would drive myself there and he would take transit from work to the hospital.  I was too woozy from the treatment to drive home safely.

    I did follow the bleach in the toilet protocol to the letter and since we do have 2 bathrooms I commandeered one for 6 hours and would give it a final clean down before retiring for the night.

    I always drank a ton of water post treatment for the next couple of days to make sure that I’d flushed out the excess BCG.  It meant waking up at night for extra bathroom trips but I think it helped prevent too much bladder irritation.  Anyhow, that was my adventure.  Good luck with your next cysto.  (((HUGS)))

     

    #37691
    rob1234
    Participant

    sorry to gil for the long time to reply. trouble is that in the last year, in addition to the nmibc, i also had a brain stem stroke. with the stroke i was unimaginably lucky ad came out pretty much whole, t was a rough go.

    for the bladder cancer the news is equally good. just had a cysto the other day and according to the very best urologist around, it  “looks good” and he is very pleased. another look in 3 months and yet another round of bcg. i dont mind as the alternative is death.

    year before last i also had an incarcerated hernia, (get it fixed or die, soon). i haven’t been coming here due to recovery from the stroke.

    i have been luckier than any human has a right to expect and am grateful that this bard is here as it is a very good support and helps reduce stress.

    thanks to all and i will keep updating.

    r stull

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