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In situ carcinoma

2 years 2 weeks ago - 2 years 2 weeks ago #55281 by sara.anne
I will relate how the BCG went for me....remember that everyone is a bit different!

I would go into the office (usually my appointments were late morning because I HATE to get caught in rush hour
traffic). The entire thing would take abot 20 minutes. They would check a urine sample to be sure that I didn't have a UTI....if you do, they postpone the BCG until that clears up. BCG is administered via a catheter just like in a cystoscopy. Then you go home. My drive home (and I was always by myself) took about half an hour. I usually wore a maxi-pad just in case I leaked.

I would then lie down since it is easier NOT to pee if I am lying down. I would try my best to "hold" until 2 hours had passed. The nurse at the uro's office told me to do my best, but if I couldn't make it for 2 hours that was OK. At the end of 2 hours or as close as I could get I would pee and start drinking water. Before flushing I would pour a cup of liquid chlorine bleach in the toilet and let it sit 20 minutes per the instructions I received with the BCG before flushing. Sometimes I was back at the toilet before the 20 min had passed!!

During the next few hours I had lots of urgency, burning, cramps, and sometimes blood clots passing. By about 5 or 6 hours after administration I was starting to feel more "normal." Was really pretty normal by the next day. I did start to have fatigue a day or so after which also went away.

Did have a couple of occasions where the burning and urgency did NOT go away and my uro diagnosed this as "BCG-cystitis" or irritation of the bladder lining caused by the BCG. We then waited a couple of weeks before continuing with the series.

The side effects do increase as the number of treatments progresses. This is because the body is becoming sensitized to the BCG, which is what you want to happen. We reduced the dose and by the time I finished the two years' maintenance I was down to 1/3 the original dose.

The really important thing? IT WORKED

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 2 weeks ago #55280 by arpegio2018
Dear Sara Anne,
All my tests indicate that I have a high grade CIS non-invasive. I am due to begin treatment with BCG. Could you tell me a bit about what to expect about this procedure? How is the BCG administered (through cystoscopy?), how long does it take, is one able to walk and drive immediately after? Is anesthesia used? Any other factors I should consider ahead of time in terms of readiness?
Thanks again for your guidance.

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2 years 1 month ago #55039 by sara.anne
You do not want a reduced dosage unless the side effects become unbearable. You may not need one. Take advantage of the BCG.....it is only when problems arise that you should consider asking for a reduced dose.

Yes, there was a shortage of BCG due to problems in the manufacture....it is a live biological product and the "bugs" do not always read the program, as well as there being very few manufacturers of it. But the reduced dosage IN THE CASE OF INCREASED SIDE EFFECTS was in practice long before the shortage crisis of a couple of years ago.

You will probably have no problems at all.

Sara Anne

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

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2 years 1 month ago #55038 by arpegio2018
Your reply is very helpful to me as I am about to embark on this BCG voyage. Regarding the dosage, the Consensus Statement discusses this and indicates that reductions in dosage have been linked to limited availability of the BCG. But it also seems to suggest that a full dosage is called for. I am ready for less if this is what practice and results are beginning to show. Thank you again, Sara Anne.

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2 years 1 month ago #55037 by sara.anne
I feel so fortunate that there is something like BCG which often works great with CIS! Yes, it does have some side effects and these tend to increase as the course of treatments progresses. This seems to indicate that the BCG is working to kick up the immune system.

There are some things that happen during the hours immediately after treatment....I don't know if I would really call them "side effects" or just the result of the treatment. These are urinary burning, a bit of bleeding, and urinary urgency. These usually quit after a few hours. The first real side effect I had was fatigue. Just felt really tired for a day or so after the treatment. After numerous treatments I felt as if I had a UTI all the time. This was diagnosed as "BCG-cystitis" and the treatments were delayed a bit until it healed.

There is no real rationale for the dose used in BCG treatments. I think that it was the dose that was available commercially at the time it was discovered that this was effective. There have been studies that show that reduced doses are also effective, even down to 1/10th the original dose. By the time I finished (the 6 week induction phase and almost two years of maintenance...3X every three months) I was down to 1/3 the original dose.

That is about the extent of my side effects. Have to say I was glad when it was over!! This is just about what most people can expect. Some do have more severe side effects and some cannot tolerate BCG at all, but for most of us it is very do-able and a real life-saver.

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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2 years 1 month ago #55036 by arpegio2018
Dear Sara Anne, I am facing exactly the same situation and will be receiving BCG induction and maintenance (I found the latest Cancer Consensus statement immensely helpful). What I don't see much discussed are the side effects of this treatment. Can you tell me what you felt and how you coped? Thank you.

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