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denial..BCG therapy

7 years 9 months ago #42944 by Nix
By all means, please go thru the BCG. Saying you life isn't as important as your grandchildren is how all grandparents think (I know I do:), but this is just a bladder wash as Sara said. I had 24 BCG washes, and I am five years cancer free.
Just look at those darling babies and think how much you mean to them! You have a lot of years ahead to have many happy memories with them.
I just kept a gallon bottle of clorox in the bathroom the day of the wash and added two cups after urinating - let it sit for 5 minutes - then flush. As Sara said, drink plenty of liquids after the two hours and the BCG passes much quicker.

Nancy

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

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7 years 9 months ago #42943 by sara.anne
I was so eager to answer some of your questions that I see that I didn't pay attention to the last part of your inquiry.

You were concerned about having only one bathroom. The procedure will most likely be that after the treatment, you will be told to try to hold it for two hours, or as long as you can up to that time. For the next four hours or so, every time you urinate, they ask that you add a cup of bleach to the toilet and wait a few minutes for it to kill any residual BCG before flushing. After that time, you can clean the toilet as usual and everything should be clear.

You will not want your grandchildren around during this time, and you definitely won't feel like having friends over! For several hours after the treatment you will have urgency and probably feel like you have to go every five minutes!! You should drink a lot of fluids to help wash this through. There may be a bit of bleeding (the lining of the bladder is sloughing off a bit...this is what you want to happen.) And you may feel crampy.

For a day or so after you may feel extra fatigued. All these symptoms mean that the stuff is WORKING. And these minor side effects get a bit more noticeable with each additional treatment. The purpose of this treatment is to REALLY kick up your body's immune response in the bladder, so it becomes a bit more sensitive each time it is challenged. If the symptoms become too uncomfortable, your urologist can reduce the dose. By the time I finished I was on 1/3 the original dose; even down to 1/10 has been used successfully.

Here is a very good source to read up on BCG therapy:

http://www.bcgoncology.com/treatment/bcg.html

Remember, that ALL the possible side effects are noted. Very few people have these. As you know, every drug has side effects and, if we read them all, we probably would be afraid of taking anything!

Again, ask all the questions you can think of....there are MANY of us here who have done this very successfully.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 years 9 months ago #42942 by sara.anne
Oh if you only knew how lucky you are, and here you are almost throwing it away!!

You had a bladder cancer that, apparently, was found early. The problem with this type of bladder cancer is that it can, and does, come back. Which is why BCG treatment is such a good idea. It can reduce the chance of a recurrence dramatically. I was diagnosed with high grade cancer, had BCG treatments, including maintenance treatments, and am now 4 years cancer free.

BCG is NO BIG DEAL. A small amount of a modified tuberculosis bacteria (not viruses) are rinsed into the bladder. You hold it for about two hours, and then pee it out. Your doctor will give you instructions about cleanliness. By the next day you are practically normal. The bacteria (which were used in the 1920's to vaccinate children) are only in your bladder or in your toilet. There is nothing to get into the air.

I probably wouldn't want little kids around the day of my treatments; you might be a bit uncomfortable and will be spending quite a bit of time in the bathroom. BUT, assuming that the treatment is effective...and it is, more often than not, you will be insuring that you are around to see those grandchildren graduate from high school!

When I think of what friends who have had systemic chemotherapy for other types of cancers have gone through, I am so grateful that BCG is available for bladder cancer that is still limited to the bladder. This treatment is NOTHING compared to chemotherapy.

There is a lot of information on this forum and on the web site about BCG. You need to familiarize yourself with it. You will then discover that your fears do not have a basis in fact. You can then face these life-saving treatments with a smile.

Sorry if I have come down hard on you, but I want you to realize how do-able these treatments are and what they can mean to your future and that of your grandchildren. There is nothing to fear from them.

Please ask us all the questions you can think of...and MAKE THAT APPOINTMENT.

Sara Anne

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

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7 years 9 months ago #42941 by blondpj
Hi I am new to this site. I had been blessed earlier by receiving this site and getting a chance to talk to Cynthia. Awesome lady. I had bladder cancer surgery in March. My doctor removed a tumor from the inside of my bladder and quite frankly told me that he "got it all". It was non-evasive cancer. My doctor told me at the time that to prevent or to help prevent the cancer from coming back I needed to have BGC therapy. I put this off, thinking that I didn't really need this therapy and that I was cancer free, so to speak. I get a letter today that basically said," I had a life threatening illness and that I needed to have this therapy done" It brought back all of those memories of hearing the word "cancer". So here I am in denial that I need to have this done. I have questions that I don't know the answers to. I have 2 grand babies, that are 2 and 3 years old and are the loves of my life. I can not and will not put them at risk of getting ill from this therapy. My life is not as important as their lives are. Can this therapy harm them? Is this actually putting the TB virus into the air? Can my husband get sick? We only have one bathroom. How clean must we make it? Can people visiting my home get ill? I am still in denial that I even need this therapy at all. I need help in making this decision.

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