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Newly Diagnosed, just after prostate cancer

2 years 2 months ago #51965 by Jay
LillianG and jroza1: Thank you the replies, I do appreciate it. I guess my Uro has this scheduling down, I'll have a break for the next 5 months:-) Sort of scary thinking it will be that long before BCG again, but we'll see, at least I know after my Cysto last week, I'm good to go for awhile. Hoping all goes well for you two and everyone else!!! Jay

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2 years 2 months ago #51955 by jroza1
Jay,
I am on the 18 month course now and about 5 weeks ago completed my second maintenance treatment with my next cyst at the end of the month.

Hope all goes well- the maintenance treatments for me have been slightly more difficult that the original 6 week course, but as every Uro nurse and doc will tell you, this is different every treatment and for every person. Being on the younger end of the spectrum (38), I would recommend that if you want to have kids, you need to bank before BCG begins. We aren't positive yet, but it looks like my wife's dream of a third is less likely than before treatments.
If ever you have questions, elderly free to DM as well
Josh.

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2 years 2 months ago #51954 by LillianG
Jay, yes you are reading that correctly. I am just now moving to maintenance treatments every 6 months. If all stays clear, I will have maintenance is Jan 2017, July 2017, and Jan 2018.
Take care
LillianG

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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2 years 2 months ago #51953 by Jay
Thanks for the link Sara Anne: (I may have posted late last night, but hit the sack directly after)

I'm not the brightest person here, but if I'm reading this correctly, this maintenance protocol is two, 3 week treatments for the first 6 months, then it jumps to three, 6 months treatments for the next 18 months, then it's yearly. So, if my mind is comprehending this, just considering the maintenance, for the first 3 years the total times of BCG maintenance adds up to 6, then it's yearly? I hope that sort of makes sense?

Thanks, Jay

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2 years 2 months ago #51951 by sara.anne
Hi Jay! Looks as if we are both up late tonight!

You are right about no "written" BCG protocol, or, to put it another way, there are multiple protocols around. Here is one of the most used, from Dr. Lamm, one of the BCG pioneers;

"Six weeks after completing the 6 weekly BCG instillations we would normally inspect the bladder (cystoscopy) to be sure it is working and the tumor is responding. Maintenance BCG is generally given using up to three instillations at 3, 6, 12, 18, 24 and 36 months, and in high risk disease, at years 4, 5, 6, 8, 10 and 12"

If you haven't read Dr. Lamm's BCG web page, you might find it interesting
http://www.bcgoncology.com/treatment/bcg.html

My urologist does the maintenance for up to 24 months. I was able to do this, although at a reduced dose (1/3) by the end. He told me that not all his patients make it for the 24 months, so I was pretty proud of myself...and have now been cancer-free for over 8 years.

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 months ago #51950 by Jay
George: Had my 4th Cystoscopy earlier this week and it was good. More irritation in the bladder than usually, figured due to the BCG.

Sara Anne: If you're reading this, I know there isn't any protocol written down, at least that's what I've been told, but it was mentioned I might go on a 6 month BCG schedule. It that a little early to start the 6 month maintenance, any thoughts?
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