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BCG Treatment and Family + clinical trials

3 years 2 months ago #49485 by LillianG
I just finished up my first 6 BCG treatments this past Wednesday. My understanding was that I needed to disinfect the toilet with 2 cups of bleach for 15 minutes after I voided the BCG, and for each subsequent void for 6 hours. In addition to the bleach in the toilet, I also used Clorox wipes to wipe off the seat etc., and I used warm wet & soapy washcloths to clean up my own 'bits and pieces'. (The warm wet soapy washcloths were very soothing, and I disinfected them before they went into the washer.) I also used antibacterial hand wash - and lots of it, followed by moisturizing hand cream.

Here is a link to the insert for the BCG. It may contain some useful information for you: http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM163039.pdf

My side effects were not too bad, and hopefully yours will be mild as well.

Good luck!

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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3 years 2 months ago #49484 by sara.anne
WOOPS! I was so wound up in BCG that I missed your question on clinical trials. I am not aware of any right now with BCG. Did you have any particular ones in mind?

Here is my PERSONAL take on clinical trials. I have worked with the FDA and the NIH and have seen many of them. There are several types....one type is where a drug company has a drug which is very similar to one that is already on the market, or one whose patent is about to expire. They want to be able to market this as something "new and exciting." These are the so-called "me too"
drugs. IMHO, not worth the effort, except when you need financial help and the drug is given to you free.

The second type is a trial of a new modality, or a drug that has been used in other types of cancers. This type of trial might be worth considering. I would want to know why they are considering this for bladder cancer. Also, how far along in testing is it?

HOWEVER, I wouldn't be looking at a clinical trial if there is a good treatment already available (ie, BCG.) If, however, I had failed BCG and had no other alternatives, I would definitely consider this type of clinical trial.

If you are offered a clinical trial, I would look very carefully at exactly what the purpose of the trial is. Just because something is a "clinical trial" this does not mean that it is necessarily a real benefit.

These are just my personal thoughts.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 2 months ago #49483 by sara.anne
Old Engineer summarized it pretty well. My printed instructions from the urologist said that I should use the bleach for 6 hours following the administration. (You do go through a lot of bleach....be sure you buy a
big container of the generic (ie, cheap) type...) and that it is liquid chlorine bleach.

The next day just clean the bathroom using some bleach and you should be fine.
You will not be contagious ....remember that BCG was developed in the 1920's for use in children.

You should ask someone to stay with you, or to take the little one for the day. If you feel like I did afterward, you won't be up to chasing a 2-yo around! I spent the four to six hours afterward mostly in the bathroom!

Handled with the appropriate caution, BCG is not dangerous and your family will be fine.

Sara Anne

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

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3 years 2 months ago #49481 by OldEngineer
Your schedule of events is almost identical to mine - what a coincidence! (First TURBT 8/21, second 9/25, similar diagnoses). I start BCG next week. I defer to others who have already gone through it, but my urologist said that as long as you take precautions, it should not pose a serious risk to your family. Specifically: (a) designate one bathroom for you to use and no one else; (b) put chlorine in the toilet after you urinate, let it sit 15 minutes, then flush (2 cups of chlorine bleach per flush); (c) wash hands thoroughly (I also plan to use iso alcohol on them in addition to wash). Only have to do that for the first 24 hours; after that all of the pathogens have been "peed out" (drink plenty of fluids to ensure that). As for immunizations, ask your doctor but I can tell you that my wife does not intend to get one - for what it is worth. Good luck to you - actually to both of us lol!!

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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3 years 2 months ago #49472 by McMayo4
I will start BCG end of Oct 2015 and want to insure not infecting family which includes 2 year old grandaughter who lives with me. What about family members immunization.. should they be? Also, anyone considering clinical trials? Your thoughts on trials?

Diagnosed 8/27/2015 Cystoscopy TURBT
T1 high grade Urothelial caceinoma, high grade, lamina propia
T1 high grade Urothelial caceinoma, high grade, bladder wall
Repeat TURBT performed 9/23/2015
T1 high grade Urothelial caceinoma, high grade, bladder wall
Pathology Report: no muscle invasion...

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