confusion re fractionalized "stereotactic brain radiosurgery"

[km5]

Hello,
I am the mom of the 23-yr-old son with 4 mm AN that has been posting recently.  I last wrote that our son had consultation with Dr. Brackman at House, who recommended middle fossa surgery, and Dr. Chang, who recommended cyberknife.
On the internet today I saw for the first time mention of "fractionalized stereotactic brain radiosurgery" performed by Dr. Lederman at Cabrini Hospital in New York.  Dr. Lederman was kind enough to respond to my questions re radiation and the age of my son immediately, but two sentences by Dr. Lederman confused me.  Here they are:
"I am not fond of the cyperknife approach or dose- based upon treated people I have seen

I believe our system is better for many reasons- including dosing, experience and years of follow-up"

I didn't want to bug Dr. Lederman again by asking how his approached differed from cyber-knife or gamma knife, so I thought I'd ask all of my new-found friends:  is there a third type of radiation approach that I am missing?
Thanks so much,
Katherine

[Mark]

Katherine,

I am going to assume that the Doctor you are talking about at Cabrini is same one whose name starts with an L and used to be at Staten Island , who also was involved with the incident involving George harrison several years ago. I think the simple fact that this board still has a block against posting his name ( which I find very interesting) should speak volumes about his credibility. He was  "big Name" in radiosurgery studies in the nineties but also seemed to have more bad outcomes because he "pushed the envelope" in the size AN's he treated from what I've heard and read.

I'm not sure what machine he uses today but it is not GK or CK ( radiosurgery)  so it is one of the LINAC radiotherapy units. there is not a "third" type of radiation , but most likely because he is using the radiotherapy type machine he is most likely doing fractions over 25-30 days as opposed to the 3-5 with CK. To some extent this can be a clinician preference , but it also reflects the lower accuracy of these machines which requires a lower dose spread over more days. It can be effective and their are a number of posters in this forum that have used Trilogy or Novalis with excellent success  this way. In general, studies I read and posted here before suggest that approach can have slightly more complications and a higher failure rate than either CK or GK.

If I'm correct about which Dr you've corresponded with then I would suggest he is offering nothing new to you and is not in class as either Brackman for surgery or Chang for both as a resource.

Mark

[ROCKYB]

I would not use the guy in cabrini just read an article about him. Not very good there are better choices

[ppearl214]

Hi Katherine,

In follow up to Mark and Rocky, I would also like to share (if you haven't seen it as of yet) the CK Patient Support Board. I note this as the dr's that participate there volunteer their time and energy to answer questions about radio-treatments, including CK and GK (Dr. Medbury has been performing both for a number of years, thus, I respect what he shares about all radio-protocols in the treatment of AN's, as well as other ailments).

We know of many AN radio-treatment protocols, such as CK, GK, Proton, Trilogy, FSR.  The dr's on that board can share research and insight/experiences about any radio-questions re: AN treatments that you may have.  I would deem them as a very reliable source for answering questions. 

the link to the site is:

http://www.cyberknifesupport.org/forum/

I hope this helps.
Phyl

[calimama]

km5...

my best advice is to not afraid of bugging doctors and getting the information you need.

if there is one thing i have learned through this is, it is to stand up for myself (i was already pretty good at this!), ask questions, ask more questions (even the dumb ones), see more doctors, ask more questions, read more, ask for earlier appointments, ask for results, ask for what you need, get all the information and advice and support you can.

This is far too important to not be in control of.

good luck!

[sgerrard]

Just did a little Googling, and found the main web site for Cabrini (aka RSNY): http://www.rsny.org/

It is headed by a doctor G. L., and they are using standard FSR, as Mark described.

I don't know anything about doctor G. L., although I agree it is odd that you can't state his last name here. FSR is an older form of radiation treatment, and they do say they are using the low dose / many visits protocol. It works reasonably well, but I think the data shows that GK and CK are better choices for treating ANs. Visit the link that Phyl posted.

Steve

[km5]

Yes, this is the doctor whose last name begins with L who was last at Staten Island.  Why on earth would his name be blocked?  I just re-read my post and realize that his name was taken out of it.  This confuses me even more.  I guess I should ask a basic question:  who exactly runs this site?  If this doctor is being "blocked", is there any other information on the site that is also being blocked?  I rely upon this site as my lifeline to objective, accurate, and complete information about ANs and am very thankful that it exists.  Can't I be trusted to evaluate any and all information that exists on a subject?  I would guess that if someone is a "shyster" and not academically credible, all of us on the site/web would communicate this to each other. 

[Mark]

Katherine,

I can not answer your question as to why Dr. G L's name is blocked on this site, but perhaps one of the moderators will offer a comment.

  To my knowledge, it is the only name that is blocked on this site. Suffice to say that the Doctor in question left Staten Island under a cloud of Scandal and if you want the details on that send me a PM. As I mentioned in the previous post, his "FSR" is nothing more than the 25-30 fraction approach taken when radiotherapy machines are used and is done in many medical centers when that is the tool they have available to them.

My own impression of him is that he is a better self promoter than a scientist or clinician. You will not find many credible studies generated by him and to call him a "pioneer" as one web site does is not based on any sound research.

I saw you posted this over the CK patient forum and I'm sure one of the Dr.s will respond to the issue of terminology between his FSR and a fractionated CK protocol but I'm sure you'll get no comment about the doctor one way or another. I think it would be called professional courtesy  . If you and your son decide that radiosurgery is the right option, then choosing between CK and a radiotherapy machine, Dr. Chang vs. Dr. L, Stanford vs. Cabrini is about the closest thing to the proverbial "no brainer" I would ever suggest to someone. Investing in Microsoft or Google when they first went public or Warren Buffet's Berkshire hathaway stock 20 years ago would be a close second 

mark

[leapyrtwins]

Yes, this is the doctor whose last name begins with L who was last at Staten Island.  Why on earth would his name be blocked?  I just re-read my post and realize that his name was taken out of it.  This confuses me even more.  I guess I should ask a basic question:  who exactly runs this site?  If this doctor is being "blocked", is there any other information on the site that is also being blocked? 

Katherine -

this site is run by the ANA and it does have moderators - Phyl and Joef come to mind.  There are certain guidelines or "rules" that need to be followed.  I know I've read them somewhere, but can't seem to locate them.  I'm sure Phyl or Joef can, and will, explain.

Jan

[ppearl214]

Official response from the ANA

Please know that the ANA has never done any intened block of the Dr's. name in question and is now on the phone with the site server folks researching this issue. There are system/software that blocks foul language, but based on the Dr's name, there should be no block. The ANA will be contacting me to confirm this system glitch and will advise when fixed. They had no knowledge of this occuring on the system until now, as brought up by site forumites.

Thanks.
Phyl

[leapyrtwins]

Thanks, Phyl.

Help me out here.  I know there are certain rules about posting personal information like member's phone numbers on the open forum - as opposed to giving them to people through PMs.  Can you give us that information? or tell us where we might read it? 

Jan

[ppearl214]

Hi Jan,

Site rules are now located under 2 discussion forums. 

Under, “General Category/From ANA�, entitled “Forum Netiquette Guidelines�
http://anausa.org/forum/index.php?topic=4.0


Under “AN Community�, thread named “IMPORTANT THREAD, PLEASE TAKE NOTICE! Thank you!�
http://anausa.org/forum/index.php?topic=6234.0

Both are “sticky� at the top of each discussion forum for ease of reference. The ANA has recently updated the Forum Netiquettes.

I hope this helps.
Phyl

[km5]

I want to thank all of the people that are taking notice of the deletion of Dr. L's name, and trying to rectify the situation.  After doing additional research we are convinced that Dr. Chang is the "go to" radiation doctor for us in California.  According to Dr. L's site he has treated over 500 ANs with radiation, and I wonder whether his patients are also on these message boards.  I am happy to hear that no one person has been intentionally "censored" by this board's administrators, as it would have prevented me from researching all options, no matter how unappealing one of them might ultimately be.
Thanks again,
Katherine

[ppearl214]

Hi Katherine and all,

seems system issue is resolved and waiting on official word/confirmation.

Katherine, if you look at your first post in this thread, you will now see his name appearing, with no "edits" comments on the bottom, thus, showing the original typing you did is in place without anyone tampering with your original post (if any moderator or yourself or such had "edited" your post, you would see comments noted that the post was edited by (insert person's name) on (insert date/time), just like this post I just self-edit, see comments below.  Also, testing behind the scenes to check on this issue.)

Will continue to monitor to make sure all is set.
Phyl

[leapyrtwins]

Phyl -

thanks for the info on the guidelines.  I knew it was here somewhere.

Jan