Beginning BCG

7 years 9 months ago #51485 by 88keys
Replied by 88keys on topic Beginning BCG
What happens if a person cannot retain the bcg for 2 hours? The first 2 instillations I had no problem, but today after my 3rd I could only hold it for 1 hour

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7 years 9 months ago #51470 by LillianG
Replied by LillianG on topic Beginning BCG
Hi Janice. I hope your first BCG treatment went well for you. I just had my 12th BCG treatment today, and hopefully - it will be my last treatment until late Dec or early next year.

My doctor uses a hold time of 2 hours, and so far I have had no real issues with holding it that long. I haven't noticed any 'bladder shrinkage' or reduction in capacity. For 24-48 hours after a treatment, I do have some 'urgency' issues, but by 72 hours after, I'm completely back to normal with regards to urgency and capacity.

Hang in there, keep us posted on your progress, and take care of you,

LillianG

5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes - all NED. Now at scope 1x year.
The following user(s) said Thank You: Jfoutz

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7 years 9 months ago #51466 by Jfoutz
Replied by Jfoutz on topic Beginning BCG
Good luck to you, I see you are starting your second round. Hope all is clears after this series.

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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7 years 9 months ago #51465 by Jfoutz
Replied by Jfoutz on topic Beginning BCG
Jack,

Thank you so much for your insight. I will have some faith in him since he has be doing this for over 30 years. I know he is one of the best in neobladder replacements, which is one of the reasons I chose him. Hope it doesn't come to that, but doesn't help to prepare for the worse and hope for the best. Wish me luck that I will be one that has success with BCG.

THANKS AGAIN,
Janice

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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7 years 9 months ago #51463 by Jack R
Replied by Jack R on topic Beginning BCG
Janice,

"The nice thing about standards and protocols is that there are so many from which to choose." Andy Tanenbaum

As a retired fire department paramedic I was use to following rigid medical protocols unless field conditions demanded otherwise. Any deviation from protocol demanded massive amounts of paperwork.

Entering the world of BC as a patient, I spent a couple of months reading articles from reputable sources. I was amazed at the wide of range of "standard protocols" that exist in treating BC. I found that a BCG hold time of 2 hours (if possible) is the most frequent standard. However, other sources recommend a hold time of 1 to 2 hours, including the American Urological Association, below. (Yes, I documented different standards)

www.auanet.org/education/policy-statements/intravesical-administration-therapeutic-medication.cfm (July 2015)

My uro is now resigned to my asking "which protocol uses (or does not use) 'that' process or procedure - whatever 'that' may be at the moment.

Almost nothing about BCG seems to be written in stone. Reviewing posts here, it has become clear the individual practitioners (like my uro) have poicked and chosen their own 'standards' from the wide range of published suggestions. So far, I have found only one BCG metric that has a single suggested value.

My uro wants a 2 hour hold time, if possible. I sometimes find the last 15 or 20 minutes to not be possible. Doc is not concerned.

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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7 years 9 months ago #51462 by Jfoutz
Replied by Jfoutz on topic Beginning BCG
Just an update. Visited Dr. Sagalowsky at UTSW in Dallas last week. He said I did not need a second TURBT since no cancer found in second layer. Start my BCG next Friday and a little nervous since it is 5 hours home..I do have one question, he only leaves it in for 1 hour and I noticed protocol was 2 hours. Does anyone know why? All I have found is someone posted the longer it is left in the more your bladder shrinks.

Thanks for any comments in advance..

Janice

Hematuria 4/17/16
TURBT 5/26/16 2.5cm tumor removed non-invasive Ta high grade
BCG starting 7/15/16

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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