BCG Treatment Journey

1 year 2 months ago #61613 by Alkamodaddy
Replied by Alkamodaddy on topic BCG Treatment Journey
Hi Eddie. Thanks very much for the reply.  You’ve checked every box of my questions and concerns!  I appreciate you taking your time for such a thorough answer.  Hank 

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1 year 2 months ago #61612 by sara.anne
Replied by sara.anne on topic BCG Treatment Journey
EddieS has given you an excellent idea of what comes after BCG instillation.  There is NO WAY that you would be able to drive home the few hours after.  You could do at at a relative's home but you would be much more comfortable in a hotel.  Eddie's estimate of the times between feeling the need and getting to the toilet are right on!  I spent some of the time just sort of sitting on the bathroom floor.

The next day you should feel "almost" normal for the drive home.

Good Luck!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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1 year 2 months ago #61611 by EddieS
Replied by EddieS on topic BCG Treatment Journey
Lets start out by saying that everyone is different, but I will share my experience with you and you can take it for what it's worth.  So let's start with the first 2 hours.  I personally had no trouble with that time frame.  I just had my 4th treatment yesterday and the first 2 hours have been a breeze.  Just be smart about the amount of liquid you take in and what type of liquid.  No coffee or caffeine related stuff like Cola's.  Acidic foods can add to burning during urination.  I cut off my liquid intake the evening before about 8pm and then in the morning I had 16 ounces of water 2 hours before my treatment.  When you go in for your treatment they will probably want a urine specimen to check for infection.  That could cancel your treatment.  The whole BCG process took about 3 minutes or so each time for me.  They will clean you off, insert the catheter (a lot smaller one that the Scope or the one you probably had after tumor removal), drain any remaining urine thru that catheter and then using a large syringe, push the BCG up thru the catheter into your bladder.  Putting the catheter in was a little uncomfortable but in 4 treatments I have not felt the BCD going in.  After, the catheter is immediately removed, slick as a whistle.  The big difference for you here is the 4 hour drive home.  After 2 hours they want you to empty your bladder, so if you headed that way you would need to stop on the way home somewhere and that could be an issue.  Then there is the urgency to pee.  Everyone is different and there is no way to tell how your bladder will react.  After the 1st treatment, after the initial 2hr pee, when I had to go, I had about 30 seconds to 60 seconds from the time I had the urge to pee until I had to go.  Then the next 4 or 5 times the time was a little less and I had a slight burning sensation while peeing.  Then about the time the 6hr window closed the burning and urgency quit just as fast as it started and I was back to normal.  That may be about the time all the BCG is cleaned out of your bladder/system. (I'm not sure about that last statement, it's just something I thought of).  As treatments have gone on for me, the burning has gotten a little worse each time, but it only lasts about 20 to 30 seconds after urination.  The urgency has gotten worse also.  With yesterdays treatment, after the 3rd time peeing, the urgency gave me between 15 and 20 seconds, it was quick.  I understand about going to a family members house with little kids.  If it were me, I would get a hotel room for 1 night.  Bring a bottle of bleach and just spend the day relaxing in the room.  Sewer treatment plants are designed to kill most everything that goes thru them.  If you have any other questions, just ask and I'll at least tell you what my experience was.  Good Luck 
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1 year 2 months ago - 1 year 2 months ago #61608 by Alkamodaddy
Replied by Alkamodaddy on topic BCG Treatment Journey
I am about to start BCG treatments next Monday.  I have never had one before and would like to hear how people handled it.  I am going to be about 4 hours from home.  I do have family nearby the hospital, but am worried about "contaminating" their bathrooms, especially since i have grandchildren there.  Any thoughts on your experiences or strategies would be appreciated.  Also, since I have not done this before, what does it feel like for the first two hours while you are "holding it".  Staying at the clinic is not an option as they don't have arrangements for that. Thanks!

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1 year 3 months ago #61600 by EddieS
Replied by EddieS on topic BCG Treatment Journey
Hopefully you can get started soon.  My Urologist told me the same thing about BCG availability but so far she seems to be able to get it.  She also told me that studies show that 1/2 or 1/3 of a dose is just as effective as a full dose.  She says that sometimes if they have more patients than doses they give you a little less so there is enough to go around each week.  I'm not sure if that is true but she seems very smart and does a lot or research so I trust her.  Good luck getting scheduled.  Let me know how it goes.  Eddie

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1 year 3 months ago #61599 by EddieS
Replied by EddieS on topic BCG Treatment Journey
Hey Mike,  I guess I am the lucky one.  My diagnosis is HGT1, so even though it is aggressing it was caught early and was only in the lining.  No deep tissue or muscle involvement.  I will include you and your family in my prayers each day.  I am pulling for you and praying for a good outcome from your CT Scan.  Hang in there, you'll get thru it.  Eddie

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