Revisions to Consensus Statement on Immunotherapy for Bladder Cancer

5 years 6 months ago #55856 by arpegio2018
Thank you, Jack. It is still amazing to me how imprecise the responses from the medical community are after so many years of experience with BCG. Yes, every case is personal and different and one must be ready to adapt, but then why have a Consensus Statement if indeed there is no consensus. My question really was about a specific gap in the original consensus where for the High Risk CIS schedule there was no mention of another TURBT after the initial six instillations. The revised consensus now includes this. Dr. Kamat of MD Anderson, who argued convincingly that BCG treatment were seldom being applied correctly (See Myths and Mysteries link below), has sent me another article about BCG unresponsiveness and next steps ( I am attaching the reference). He has also made a very recent statement at the SIU about unresponsiveness and the availability of what appears to be a very effective treatment with Instiladrin (link below).
In my case, the most recent TURBT last week has shown non-invasive CIS and I will be resuming BCG maintenance as soon as my bladder heals. Thank you again for your comments.

www.dropbox.com/s/sbjiwb0vpgtlheu/BCG%20Unresponsive%20Review%20-%20IBCG%20-%20Kamat%20et%20al%20Nature%202017.pdf?dl=0

www.urotoday.com/video-lectures/bladder-cancer/video/mediaitem/832-embedded-media2017-09-19-16-16-40.html

www.urotoday.com/video-lectures/bladder-cancer/video/mediaitem/955-embedded-media2018-05-19-18-30-37.htm

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5 years 6 months ago #55855 by Jack R
Arpegio,

I will offer a couple of comments, but they won't answer your question.

First, some of the mystery about BCG is discussed in the FAQ by Mike O'Donnell at

thomaschallenger.com/wp-content/uploads/2011/10/Mike-ODonnell-Protocol-long.pdf

The FAQ starts on page 13. The article is getting old, circa 1999.

As O'Donnell says, we have the SWOG/Lamm schedule because it has shown to be better than other schedules that have been tried.

Dr. Lamm has agreed with that, and in his blog he notes (not quoting) "there has been such success with the SWOG schedule that it would take a huge number of patients on another schedule to provide evidence of a better treatment plan. Dr Lamm also agrees with hold off treatments when necessary, giving time for the bladder to recover from a prior treatment. Over all, Lamm gives the impression that staying as close as reasonable to the SWOG schedule is important, but some variation .is acceptable.

I have had that discussion with a number of doctors. I have yet to meet one who is absolutely rigid on time between BCG treatments.

I would like a nice simple, one treatment plan is the best for all cases of bladder cancer. No one seems to have the answer. There IS a wide variation in treatment plan between doctors, and none I have asked have been able to give me a good reason for not following SWOG.

On the other side, many in this forum have reported short courses of BCD, without follow up treatment, and are doing well.

So , Is it OK to delay a BCG treatment ? I **Think** Dr Lamm believes it is. Nobody knows because no doctor will test that change on a large series of patients.

Unsatisfying answer. Sorry.

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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5 years 6 months ago #55850 by arpegio2018
Thanks very much. I appreciate the experience you are relating.

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5 years 6 months ago #55849 by Alan
If I am understanding the specific question about interrupting BCG if an abnormal scope? If a tumor is seen another TURB is probably the decision. That way another biopsy can be done for evaluation. Interruptions for other reasons are numerous (infection/UTI, bleeding, severe irritation-which often mimics CIS). Missing a few sessions is common for healing. It also happened with me and the vast majority of times it is meaningless. I do believe getting through the first 6 are the most important.

Keep asking away. Someone will have extra insight also. The big thing is BC is treatable and beatable.

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.
The following user(s) said Thank You: arpegio2018

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5 years 6 months ago #55848 by arpegio2018
Thank you for your comments. Of course, as you say, all treatments are personal and in this case I am talking about my case specifically - and not some generic interest. For me understanding the protocol is crucial to the dialog with my doctor.
Perhaps you have not listened to the latest from Dr. Kamat on the importance of sticking with the BCG schedule. He explains that very few patients are benefitting from the correct application of BCG.
My question then is about what happens to the schedule of BCG maintenance if there is an abnormal cystoscopy after the first six instillations. The Consensus Statement now injects this but without guidance.

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5 years 6 months ago - 5 years 6 months ago #55847 by Alan
Just a quick observation. While there are protocols for attacking bladder cancer, everyone is an individual and many have been given different/specialized treatments. I wouldn't get to hung up on a flow chart. My own URO, who studied under Dr. Lamm (who is now in AZ as BCG SWOG) in San Antonio at UTSA some 35+ years ago had me do a weekly induction over 6 weeks, 6 off then repeated. That was it. I have read MANY different approaches. Mine possibly was different due to the early detection and small tumor. I never asked the doctor why but, I know his philosophy is to do the least invasive treatments as possible with the highest probability to work. For example, cystoscopy is an integral and vital test. It still carries a small risk of added infections, scarring among other possibilities and he moved me to 6 months after a year with my OK. The norm is 2 years of 3 month exams. I believe he liked the 6 and 6 of BCG because the longer one extends this induction the greater increase of BCG itis, exposure to infections and again issues with the urethra besides the bladder.

A few things are certain. BCG does work for the majority. Repeat TURBs are a good decision for most especially on high grade tumors. Continued follow up every 3 months extending to 6 and then yearly are important. Also, Dr. Kamat has an excellent reputation (MD Anderson practicing doctor)! With all the irons in the fire I hope he has the time to respond as we all learn and hopefully he will be able to answer your questions.

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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