First BCG Maintenance Started: Half Dose 40Mg

4 weeks 1 day ago - 4 weeks 1 day ago #60921 by Bills
Thanks Alan, Sara and Joe

I am most fortunate that I found this forum and people like you who has in depth knowledge and experience in dealing and beating this disease. I am confident that what I listen and hear from you are the most important pieces of information I can use to cure my dad.

I will be constantly updating our progress and God Willing good news about our treatment journey. 

We have next cystoscope in Oct-Nov and then Dec2021-Jan 2022 Uro would suggest next BCG cycle.

Till that time my dad will have time to recover as last BCG made him very weak and skinny and lost some pounds as well. I will try my best for him to gain some pounds again.

Thanks and Thanks Again to Alan , Sara and Joe
Respect and Regards.
God Bless

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4 weeks 2 days ago #60920 by Alan
For Bills,

Also, a big thanks to Joea73, Jack and Sara Anne for your research and talent in communicating in a way non-scientists can understand. Had I discovered this site before my BCG I probably would
have done the SWOG protocol that Sara Anne finished. I do believe it is
probably the best course offered even when so many are not able to
complete it. From what I have read very few make it to the 5 and final
year. Others, with their medical team (mostly Europe from what I remember) did
once a month for 12 months if my memory serves me back in older threads.
I do believe an initial 6 is very important.

My URO who did study under Dr. Lamm 40+ years ago when they were in San Antonio gave me
the 6 on, 6 off, and 6 more to completion, gave me his reasoning on my
case. First, the tumor was small and probably hadn't been there very
long. His TURB and second TURB, being high grade revealed only a
papillary growth which is better than with CIS. Basically, he got it
all. Second, every invasive procedure involves some risk from the
cystoscopy, TURB, and BCG. His theory is that my 12 should end any
issues. In retrospect, Sara Anne's regimen I might have asked to do
more. However, the second 6 had more intense side effects from urgency,
burning and fatigue. By numbers 10, 11, and 12 I could not retain the
BCG for more than 25-30 minutes which also might have told me more
treatments would be a waste. So, who knows?

I am also fortunate at almost 13.5 years free of this. Bills, all I am saying is I believe
in BCG as a very good treatment and it is better than not doing it.

Do what you do and tolerate with your Dad. Then, go on with your life. No one is guaranteed tomorrow.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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4 weeks 2 days ago - 4 weeks 2 days ago #60918 by sara.anne
Replied by sara.anne on topic First BCG Maintenance Started: Half Dose 40Mg
Hi there Joe and Bills!!  I will try to answer your questions....some of my answers may be a bit vague since I completed my BCG treatments over 10 years ago!  

First, to Bills' question....there is no set protocol (or dose) for BCG administration.  The SWOG protocol is just one.  Urologists use whatever schedule seems to work for their patients.  My experience was to have 6 induction doses, one week apart.  This was followed by one a week every three weeks, three months apart, until two years had passed.  I understand that this is one of the common protocols in this country but there are others.

Now to Joe's questions:

1.  When did you experience the first side effect (after the first dose?)
      As you know, the side effects are cummulative.  The one I noticed even after the first treatment was fatigue.  The day or so after instillation I was TIRED.  (I am not going to talk about the issues on the day of treatment.)
 
2.  Did your side effects get worse as the number of the treatment increased?
       Yes.  As I noted above, the side effects are cummunlative.  They included the fatigue, which got worse, and urinary urgency and burning.  These lasted longer as the treatments progressed.

2.5  Did the type of the side effects change?
       
Not really.  Just really started to get "worse."

3.  At what point, did you decide to reduce the dosage?   How was 1/3 chosen instead of 1/2 or 1/10?

      I don't remember how far along we were.  I went in for my treatment and not only was I uncomfortable (!) but cyscoscopy showed a LOT of irritation in the bladder which was diagnosed as "BCG-induced cystitis," which simply meant that the BCG had really irritated the bladder.  We held off treatment for about two weeks and then continued with a reduced dose.
       I believe that the 1/3 dose was selected since it was relatively easy to prepare due to the amount of BCG in the vial.  It is important to remember that there is NO scientific reason for the dose of BCG used.  When this was first tried in bladder cancer patients and found to work, what was used was what was available.  (BCG was also tried in other cancers, most notably malignant melanoma, and found to be ineffective.)

4.  How much did the side effect reduce by reducing the dosage to 1/3?
       This dose avoided severe BCG-cystitis and made it possible to continue the treatments.  Other side effects seemed to remain the same.  
       
5.  Did the side effect get worse again as 1/3 dosage BCG repeated?
     
Not really.  They were already pretty uncomfortable, but I also really wanted to be rid of bladder cancer so I was pretty motivated to continue.  My urologist did tell me that even the initial dose offered protection and that each maintenance dose was "money in the bank."  He said that I could quit any time the side effects became intolerable.
      
6.  How did you manage the side effects?  Any medication?  Increased water intake?
       Occasionally took pyridium.  Mostly just felt sorry for myself!!!  Now that it is over I am VERY glad that I did it.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 weeks 2 days ago #60917 by Bills
Hi Joe and Sara,

I would love to hear the answers of the questions which Joe has asked. 

@Sara, U had mentioned that you had BCG every three months , doesn't it every 6 months as per SWOG protocol ? Please advice.

Thanks

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1 month 9 hours ago #60915 by joea73
Hi Sara,
Thank you for the correction.   First of all. congratulation for your successful BCG treatment and being cancer free for that many years.

I have a few questions.

1.  When did you experience the first side effect (after the first dose?)
2.  Did your side effects get worse as the number of the treatment increased?
2.5  Did the type of the side effects change?
3.  At what point, did you decide to reduce the dosage?   How was 1/3 chosen instead of 1/2 or 1/10?
4.  How much did the side effect reduce by reducing the dosage to 1/3?
5.  Did the side effect get worse again as 1/3 dosage BCG repeated?
6.  How did you manage the side effects?  Any medication?  Increased water intake?

Joe


 
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1 month 12 hours ago #60914 by sara.anne
Replied by sara.anne on topic First BCG Maintenance Started: Half Dose 40Mg
Thank you, Joe, for the very complete explanation that you provided.  I know that many patients will find it quite useful.

Just one point to clarify (and a minor one at that!)  I had the BCG induction series (six weeks) and then three-week maintenance doses  every three months for two years.  I certainly didn't enjoy this and had lots of irritation and BCG-cystitis with urinary urgency which caused the dose to be reduced to 1/3.  BUT I have now been bladder-cancer free for over 13 years so it was really worth it.

Sara Anne

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