ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: km5 on May 01, 2008, 04:20:34 pm

Title: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: km5 on May 01, 2008, 04:20:34 pm
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


Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 01, 2008, 05:25:54 pm
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ROCKYB on May 01, 2008, 06:18:55 pm
I would not use the guy in cabrini just read an article about him. Not very good there are better choices
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 01, 2008, 07:11:00 pm
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: calimama on May 01, 2008, 07:41:19 pm
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!
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 01, 2008, 07:44:42 pm
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: km5 on May 01, 2008, 09:27:34 pm
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. 
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 01, 2008, 10:34:03 pm
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  ;D

mark
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 02, 2008, 06:28:48 am
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 02, 2008, 07:01:09 am
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 02, 2008, 07:13:40 am
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 02, 2008, 07:19:31 am
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: km5 on May 02, 2008, 09:26:25 am
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 02, 2008, 11:20:17 am
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
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 02, 2008, 11:41:39 am
Phyl -

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

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 02, 2008, 12:47:05 pm
Hi,

I was amazed to read that Dr Lederman's name was being censored and glad to read that it was just a glitch.  I have not had any treatment, because my AN has had the good taste to remain static for 7 years.  But if and when I do need treatment Dr Lederman would be one of my first choices.  I have met him several times and met many of his former patients over the years.  All those I have seen are happy and well. 

I organized a meeting in Paris recently where he came to talk about his treatment protocol.  I put the video of the meeting and his powepoint presentation on the web so everyone can watch it and form their own opinion.  http://anworld.com/radiation/lederman-Paris-Jan-2008/video/ (http://anworld.com/radiation/lederman-Paris-Jan-2008/video/).

BTW there is an extensive comparison of the various radiation treatments on the same site http://anworld.com/radiation/ (http://anworld.com/radiation/).  There is also a site where some of his former patients tell their own story: http://lederman-patients.com/ (http://lederman-patients.com/).

Philip



Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 02, 2008, 12:59:25 pm
Hi Philip and welcome. Glad to see you joining in... would it be a fair assumption that you are the "Philip" noted on the AN world site home page, along with 3 others?  No biggie, just a reference point for me.....

In checking the radiation link you shared, there seems to be a bit of information that does need updating. I know KateB has been doing extensive research into some of the updates that need to be done and looking forward to the updates, esp. for radio-treatments for AN's. I look forward to reading and learning more as info becomes updated.

I have be informed that we confirm software glitch for the issue of Dr. Lederman's name and is now resolved.  Should anyone find any other issues as such, please PM/email the moderators directly so we can research the issue.

thanks.
Phyl
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 02, 2008, 02:36:10 pm
Yes Phyl, that's me.  :)

Kate did mention something about changes on the radiation page.  We are always happy to update.  What exactly do you believe needs changing?

Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 02, 2008, 02:42:36 pm
Hi Philip and thanks! Good to know! :)

the ANA has extended a hand to the site (and KateB) to help provide updated info regarding treatments and such of AN's.  I also know Kate has been doing some terrific research on other sites as well.   My suggestion would be to contact the ANA for the updated AN treatment info that they have available that they are happy to share with you all.......

Phyl
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 02, 2008, 04:50:47 pm
Phyl,

Kate had asked me to change a statement but that was on the surgery page of the site.  She'll be reading this and will let me know if there is anything else she thinks should be modified.  If you, or any other forum member for that matter, notice any specific point on the site that needs to be updated, by all means let me know.  A fresh look by new readers is very helpful.

Are you a patient yourself?

Kind regards
Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Kate B on May 02, 2008, 08:01:41 pm
Phillip, good to see you on this site.

Phyl, yes the modifications to the pages thus far have included adding the support group link to Stanford and the removal of a line about lack of peer review until it is further researched.  I have now joined this book club <grins> (our very own ANA book club) that is using up my free time :-)

Kate
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 02, 2008, 08:03:17 pm
Lederman, Lederman, Lederman. Just testing.  :D

Philip:

"When the AN is between 20mm and 30mm ...with radiation GK is suitable at the lower end of this size range, but FSR is usually more suitable for the upper size limit."

Where'd that come from? The suggestion that FSR is suitable in situations where GK and CK are not is news to me, and not the message I've heard from other sources.

Cyberknife should not be tacked on as an afterthought. It is listed in the links for radiation sites, following 4 links to the Cabrini center, as another FSR link. As you say elsewhere on that page, CK is closer to GK in many respects. I think it is a significant enough system to warrant more information, not just a few analogies to GK and FSR. After all, it is going to win the competition in the end. :)

The range of links for radiation sites is, shall we say, a little lop-sided.

Well, you did ask.  ;D

Steve

PS: the signature below many posts shows the AN history of the poster.
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 02, 2008, 08:58:48 pm


"When the AN is between 20mm and 30mm ...with radiation GK is suitable at the lower end of this size range, but FSR is usually more suitable for the upper size limit."

Where'd that come from? The suggestion that FSR is suitable in situations where GK and CK are not is news to me, and not the message I've heard from other sources.

The range of links for radiation sites is, shall we say, a little lop-sided.

Well, you did ask.  ;D

Steve



Steve,  I think the more accurate response to the FSR vs. GK size comment is that it is flat out wrong and while I understand from his previous post that Philip is very comfortable with Dr. Lederman / Cabrini I would agree that there are a multitude of more recent studies from many highly reputable drs in this area which would give the site a more accurate, contemporary and credible appeal to the visitor

Mark
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 03, 2008, 03:54:24 am
Hello Steve,

Thanks for your comments.  The sentence in question is extracted from the http://anworld.com/treat/ (http://anworld.com/treat/) page where treatment options are examined as a function of tumor size.

I think it is true that the purpose of fractionation is to allow non-tumor tissues to recover from radiation damage between sessions.  If not, why fractionate?  When the tumor is close to sensitive tissues such as the brainstem, the amount of swelling that occurs after radiation is a concern.  That is why the sentence suggests that fractionated treatments might be preferred as the tumor gets larger.

Is your objection specifically about comparing Gamma Knife to FSR without mentioning Cyberknife?  If so I would be perfectly happy to change the wording to "...with radiation single session treatment (GK) is suitable at the lower end of this size range, but fractionated treatments are usually more suitable for the upper size limit".  Would you agree? 

I'm not certain what Cyberknife centers claim specifically about size limits and swelling.  Can you point me to a published report, from Stanford for example, where the question is discussed?  I'll be glad to include it as a link on the http://anworld.com/radiation (http://anworld.com/radiation) page. 

To answer your comment that the range of links is lopsided, frankly we didn't count the number of links.  It just so happens that we needed an extra link for Lederman's presentation given in Paris in January this year, and one to a website where his former patients tell their stories.  If anyone has useful links to add for other treatment centers, the more the better.  Bring them on, as they say.

There is a lot of information on Cyberknife already on the http://anworld.com/radiation (http://anworld.com/radiation) page.  But if you feel there is more to say based on more recent information your contribution would be welcome.

Cheers
Philip

Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 03, 2008, 06:09:49 am
Hi Philip,

Yes, I am an AN patient, 2 yrs post Cyberknife treatment.  Pls see my sig line as most note their AN journey in sig lines.

Phyl
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 03, 2008, 09:54:04 am
Mark,

Your "flat wrong" comment seems a bit exaggerated.  The thinking behind the sentence you object to is explained in my response to Steve above.  If you think it's wrong pray tell why. 

ANworld.com's purpose is to inform patients, not take sides.  It was written in collaboration by a surgery patient (Kate) and a radiation patient (Chris) and exhaustively discussed with Kimberly (surgery) and myself (watch & wait).  We all agreed on the final version.  Obviously there is room for disagreement and updates when new information becomes available. If you wish to contribute in a constructive way you are most welcome.  Do let me have any studies you have in mind that you think should be included in the links.

You seem to have a personal vendetta against Dr Lederman. I would not dispute your right to hold those views and make them known. All doctors have their successes and failures.  Our purpose is to inform patients of the good and the bad.  Ex-Lederman patients I have met generally confirm his published results.  You'll find the latest very detailed information from this doctor on our site (see the link on the radiation page to his presentation in Paris in Jan. 2008). 

You can also find information on FSR failures in the excellent report written by Donna Robertson on http://www.anworld.com/radiation/failures/ (http://www.anworld.com/radiation/failures/).  Donna's intention was to do a similar report about Gamma Knife and Cyberknife failures but she never got around to it.  It takes months to contact each patient and record his or her comments.  Hopefully she will find the time to do it one day.

Cheers
Philip

Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: jb on May 03, 2008, 10:39:50 am
I'm curious, is there any published data available that supports the assertion that AN's, especially larger ones, are less likely to swell with a fractionated treatment?  I've seen data from Univ. of Pittsburg that show a pretty low incidence of swelling complications with their single-session GK series of patients.  Just wondering if there were any comparative studies vs. FSR?  At last report from my radiation oncologist, my own AN has nearly doubled in size with swelling following 5 fractions of CK last summer.  According to his assessment, it's just one of those luck-of-the-draw sort of things that happens sometimes with any radiation treatment.

Regarding Dr. Lederman, there is an ongoing discussion in the "AN Issues" section of this forum that may be of interest, titled "Dr. G L Article".  I recently came across a website of one of his former patients who was treated via FSR for a 4 cm AN.  She had previously been refused radiation treatment at Mayo Clinic, because they felt the tumor was too large and needed to be debulked first. Unfortunately, she died several months after receiving the FSR.  Her husband notes on their website that her death was was caused by swelling-induced complications as well as possible radiation damage to healthy tissue.  It's a very sad and disturbing story on their website: http://www.raccoonhouse.com/an/ (http://www.raccoonhouse.com/an/).  I understand that Dr. Lederman has successfully treated many AN's, but seems to be pushing the limit, in my opinion, in treating the large ones with radiation.
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 03, 2008, 11:21:54 am
Hello JB,

That's a good question.  The clearest study I know of swelling after radiation (GK in this case) is given in a Japanese report at http://www.ajnr.org/cgi/reprint/21/8/1540.pdf (http://www.ajnr.org/cgi/reprint/21/8/1540.pdf).  Look at the graphs on page 3; they tell the story at a glance.  I don't know of any similarly detailed studies for CK or FSR but others may point some out.

I would think swelling depends on many factors such as individual variations, targeting expertise, dosage, etc.  So a general statement that GK is better or worse in this respect compared to any other radiation protocol is probably meaningless. 

Doctors who do fractionation certainly claim that it helps to reduce nerve damage and swelling, which seems logical.  One GK specialist told me that GK is inherently more precise than Linac.  He said his colleagues who use Linac are forced to resort to fractionation because of this shortcoming.  Stanford claim their CK is very precise, but they still fractionate. And your own experience proves that they do experience swelling.

Even if we had studies as precise as the Japanese article for both CK and FSR it would not prove much because the next guy using similar equipment might get very different outcomes.

Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 03, 2008, 11:28:32 am
ANworld.com's purpose is to inform patients, not take sides. 

Interesting you would say this.  It may be just my perception, but when I first visited ANworld.com - about the time KateB joined us here - I got the impression that it was more biased than informative - at least as far as letting patients know all the qualified doctors who treat ANs.   I found it to be more like an "Ode to a Few Specific Doctors and Facilities".   Sorry.

I did visit again just the other day and I found that you are now linking to the ANA medical resources, which made me - as a patient - much more comfortable.  I have to say that I'm very glad you chose to add the link, it makes your site more informative.

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 03, 2008, 12:34:29 pm
Jan,

That may have been your perception but I honestly don't think it is justified.  Everyone is biased so to insure impartiality we got together 4 separate patients with different backgrounds. 

Links to ANA have been there forever.  If you don't believe me you can check on the Wayback Machine http://web.archive.org/web/*/http://anworld.com (http://web.archive.org/web/*/http://anworld.com) where you can find versions of the site dating back to 2001.

As for letting patients know of all qualified doctors, we have a world map of AN specialists http://www.anworld.com/map/ (http://www.anworld.com/map/).  We are always happy to add more doctors when we receive reliable information from patients. We also link to other sources such as the SANG site (presently down).

I hope I don't sound biased, but I think we are one of the most unbiased sites around.  :)

Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 03, 2008, 04:44:31 pm
Philip -

you are right, we all have opinions  :)  I guess I'm just partial to the ANA and their website - if people want to call me biased, it doesn't bother me a bit.

I believe you about the links, not accusing you of anything here.  I guess I just didn't notice them.  As I said in my previous post, I've only visited ANworld twice and both times for a very short period of time.

I visited for the third time - just a minute ago - and think the world map is a great resource, but unless I used it incorrectly I didn't see a lot of treatment centers I've read about on this forum during the past year.  I couldn't find Michigan Ear Institute - which is rumored to be 2nd only to HEI - nor could I find the docs in NY or OH - their specific names escape me.  Did I just miss them?  Could other AN patients request they be added?

Thanks,

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 03, 2008, 05:14:41 pm
Philip,

In response to some of your posted comments:

You seem to have a personal vendetta against Dr Lederman. I would not dispute your right to hold those views and make them known. All doctors have their successes and failures.  Our purpose is to inform patients of the good and the bad.  Ex-Lederman patients I have met generally confirm his published results.  You'll find the latest very detailed information from this doctor on our site (see the link on the radiation page to his presentation in Paris in Jan. 2008).

And you seem to hold him up as the source of "radiosurgery gospel" which probably would not be a position supported by a large number of his peers today. In terms of a personal vendetta, I think that is a somewhat presumptuous conclusion from someone who has been on this board less than a week. I posted an article in response to a post from Katherine explaining why he was seen as controversial. Other than that I responded to Kate's point about the difference between reckless and pioneer and why some of his recorded behavior and treatment approaches could be construed as the former. A "personal vendetta" suggests I make it a point to actively bad mouth the guy which I take offense to, but I have 500 plus posts on this board over 7 years and your welcome to read them to see where I have even raised his name prior to this week. Do I really care about the guy one way or the other? nope. Do I think there are other clinicians that are of greater scientific credibility? Yep. Would I recommend him to others given the level of controversy and others who are proven to be at the top of the field without the baggage? Nope. Fair enough?


Everyone is biased so to insure impartiality we got together 4 separate patients with different backgrounds.


More viewpoints is better and a good approach, but I'm not sure 4 "insures" no bias especially when there can be a wide gap in the overall and treatment knowledge base. Some of the feedback you've already received from here would seem to confirm a different impression , but I'm glad you are open to the comments with an intent to improve the content and value to patients who visit it, which I truly believe is your goal.

That's a good question.  The clearest study I know of swelling after radiation (GK in this case) is given in a Japanese report at http://www.ajnr.org/cgi/reprint/21/8/1540.pdf.  Look at the graphs on page 3; they tell the story at a glance.  I don't know of any similarly detailed studies for CK or FSR but others may point some out.

I would think swelling depends on many factors such as individual variations, targeting expertise, dosage, etc.  So a general statement that GK is better or worse in this respect compared to any other radiation protocol is probably meaningless.


I would tend to agree with your last sentence to JB, but in terms of referencing the japanese study I think you also to keep in context that they were also comparing a wide range of dosage protocols ranging from essentially 10-20 GY. The standard 1 dose protocol today for either GK or Ck is typically 12 GY so to do a comparison, only  the 10-12 GY patients should be looked at on those graphs which I suspect will across the board have lower enlargement results. Clearly GY doses on the high end would have a much higher incidence of swelling, so to draw a generalized conclusion of swelling from a sample inclusive of the whole range is flawed logic in my view.

Your "flat wrong" comment seems a bit exaggerated.  The thinking behind the sentence you object to is explained in my response to Steve above.  If you think it's wrong pray tell why.

No more so than ""When the AN is between 20mm and 30mm ...with radiation GK is suitable at the lower end of this size range, but FSR is usually more suitable for the upper size limit.", although, in fairness I can't see where Steve found that quote on the AN world web site. That sounds like a web site opinion as opposed to a scientific study conclusion to me. Yes , it is true that preliminary studies show fractionating treatment increases hearing preservation about 10-15% from one dose in CK vs. GK. The studies on the 25-30 dose protocols show no better results than the 3-5 and marginally more complications. However, in facial nerve preservation and tumor control there does not seem to be a significant difference regardless of one dose or fractionation. I also think the web site comments regarding machine accuracy essentially being unimportant and not very different is errant. I think I'll post that over on the CPSG Doctors board for some thoughts  ;)


You asked for studies relative to one dose outcomes and FSR , especially in the 2-3 cm range

First, here is a link that you should put on your web site and I think ANA should as well. It is from the NIH and US library of Medicine data base. This board has already had a discussion about "scholarly and peer reviewed studies" and I think you would have a hard time finding ones in here that wouldn't qualify. I stopped looking at about 80 articles and the first two on this link should be from Stanford on CK. I'm sure you can find a number of worthwhile ones to add to your web site. Have a party  :D

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&DbFrom=pubmed&Cmd=Link&LinkName=pubmed_pubmed&LinkReadableName=Related%20Articles&IdsFromResult=15918941&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&log$=relatedarticles&dbfrom=pubmed


I'll also cut and paste several for you that I think would challenge that there is a significant difference in the one dose with a highly accurate radiosurgery machine ( GK / CK) vs. extended FSR outside of hearing based on tumor size. It is hard to find anything that is so segmented to defend the point either way, but that would be my point that the statement is too general and not substantiated

Best

Mark

Single-fraction vs. fractionated linac-based stereotactic radiosurgery for vestibular schwannoma: a single-institution study.
Meijer OW, Vandertop WP, Baayen JC, Slotman BJ.
Department of Radiation Oncology, VU University Medical Center, Amsterdam, The Netherlands. owm.meijer@vumc.nl
PURPOSE: In this single-institution trial, we investigated whether fractionated stereotactic radiation therapy is superior to single-fraction linac-based radiosurgery with respect to treatment-related toxicity and local control in patients with vestibular schwannoma. METHODS AND MATERIALS: All 129 vestibular schwannoma patients treated between 1992 and June 2000 at our linac-based radiosurgery facility were analyzed with respect to treatment schedule. Dentate patients were prospectively selected for a fractionated schedule of 5 x 4 Gy and later on 5 x 5 Gy at the 80% isodose in 1 week with a relocatable stereotactic frame. Edentate patients were prospectively selected for a nonfractionated treatment of 1 x 10 Gy and later on 1 x 12.5 Gy at 80% isodose with an invasive stereotactic frame. Both MRI and CT scans were made in all 129 patients within 1 week before treatment. All patients were followed yearly with MRI and physical examination. RESULTS: A fractionated schedule was given to 80 patients and a single fraction to 49 patients. Mean follow-up time was 33 months (range: 12-107 months). There was no statistically significant difference between the single-fraction group and the fractionated group with respect to mean tumor diameter (2.6 vs. 2.5 cm) or mean follow-up time (both 33 months). Only mean age (63 years vs. 49 years) was statistically significantly different (p = 0.001). Outcome differences between the single-fraction treatment group and the fractionated treatment group with respect to 5-year local control probability (100% vs. 94%), 5-year facial nerve preservation probability (93% vs. 97%), and 5-year hearing preservation probability (75% vs. 61%) were not statistically significant. The difference in 5-year trigeminal nerve preservation (92% vs. 98%) reached statistical significance (p = 0.048). CONCLUSION: Linac-based single-fraction radiosurgery seems to be as good as linac-based fractionated stereotactic radiation therapy in vestibular schwannoma patients, except for a small difference in trigeminal nerve preservation rate in favor of a fractionated schedule.


[Neuropathy in nearby cranial nerves after acoustic schwannoma gamma knife radiosurgery, a follow-up study]
[Article in Chinese]
Qi S, Yu X, Li S, Zhou D, Liu Z.
Department of Neurosurgery, General Navy Hospital, Beijing 100037, China.
OBJECTIVE: To investigate the risks of facial, trigeminal and acoustic neuropathies after acoustic schwannoma gamma knife radiosurgery. METHODS: The clinical data of forty-three patients with 46 masses of acoustic schwannoma who underwent gamma knife radiosurgery with the dose of 12 approximately 15 Gy to the tumor margin between January 1997 and October 2000 and were followed up for 6 approximately 24 months (on average 16.9 months) were studied. The tumor diameter was 10 approximately 20 mm in 12 cases, 21 approximately 30 mm in 23 cases, >/= 31 mm in 11 cases, with the average value of 28 mm. RESULTS: The general tumor control rate was 91.3%. The useful hearing preservation rate was 100% immediately after radiosurgery, 87% 6 months later and 78% 2 years later. The hearing preservation rate was high for small tumors. The facial and trigeminal neuropathies began to appear after 6 months. The incidence rates of facial neuropathy was 15.3%, 7.6%, and 3.8% 6 months, 1 year and 2 years after radiosurgery respectively. The incidence rates of trigeminal neuropathy was 11.4%, 3.8%, and 3.8% respectively 6 months, 1 year, and 2 years after radiosurgery. The incidence of neuropathy was 3.8% for tumors with a diameter < 30 mm for both facial and trigeminal nerves. The hearing in 2 out of 15 cases with dysaudia began to improve 6 months after radiosurgery. The incidence of neuropathy for tumors with the diameter > 30 mm was 3.8% for both nerves 2 years after raadiosurgery. The preservation rate of useful hearing for tumors with the diameter < 20 mm was 100% after radiosurgery. CONCLUSION: Stereotactic radiosurgery using gamma knife with a dose of 12 approximately 15 Gy to the tumor margin succeeds in controlling acoustic schwannoma and preserving useful hearing. The incidence of facial and trigeminal neuropathies are low. The neuropathy caused by gamma knife radiosurgery is sub-lethal and can be recovered gradually.



CK with 3 fractions

CyberKnife radiosurgery for vestibular schwannoma.
Ishihara H, Saito K, Nishizaki T, Kajiwara K, Nomura S, Yoshikawa K, Harada K, Suzuki M.
Department of Neurosurgery, Clinical Neuroscience, Yamaguchi University School of Medicine, 1-1-1 Minamikogushi, Ube, Yamaguchi 755-8505, Japan. hishi@po.cc.yamaguchi-u.ac.jp
OBJECTIVE: The CyberKnife is newly developed equipment for radiosurgery and fractionated radiosurgery. The authors report on their experience using the CyberKnife in 38 patients with vestibular schwannoma who were treated between 1998 to 2002. METHODS: During this period, 38 patients with vestibular schwannoma were treated using CyberKnife fractionated radiosurgery. Before undergoing fractionated radiosurgery, 14 patients had Gardner Robertson classes I or II hearing (the serviceable hearing group), and 24 patients had classes III to V hearing (the non-serviceable hearing group). The treatment volumes of these two groups were 0.5 to 24.0 cm (3) (mean 4.7 cm (3)), and 0.5 to 41.6 cm (3) (mean 8.2 cm (3)). Target irradiation was administered in 1 - 3 fractions (mean 2.5 fractions). The total marginal radiation doses were 15.0 to 20.5 Gy (mean 17.0 Gy), and 11.9 to 20.1 Gy (mean 16.9 Gy), respectively. RESULTS: After a mean follow-up period of 31.9 months (range 12 to 59 months, median 27 months), 94 % of the tumors were controlled. Only one patient in the group with non-serviceable hearing underwent additional surgical resection for a presumed increase in tumor size. The hearing preservation rate was 93 %. Facial weakness did not develop in any of the patients in the serviceable hearing group. New trigeminal symptoms did not develop in any patients in either group. CONCLUSION: Although a longer and more extensive follow-up is needed, CyberKnife fractionated radiosurgery is considered to be safe and effective, even in patients with large tumors.


Netherlands study comparing radiosurgery and radiotherapy with no discernible difference

Fractionated stereotactic radiation therapy and single high-dose radiosurgery for acoustic neuroma: early results of a prospective clinical study.
Meijer OW, Wolbers JG, Baayen JC, Slotman BJ.
Department of Radiation Oncology, University Hospital VU-Ziekenhuis, Amsterdam, The Netherlands. owm.meijer@azvu.nl
PURPOSE: To prospectively assess the local control and toxicity rate in acoustic neuroma patients treated with linear accelerator-based radiosurgery and fractionated stereotactic radiation therapy. METHODS AND MATERIALS: We evaluated 37 consecutive patients treated with stereotactic radiation therapy for acoustic neuroma. All patients had progressive tumors, progressive symptoms, or both. Mean tumor diameter was 2.3 cm (range 0.8-3.3) on magnetic resonance (MR) scan. Dentate patients were given a dose of 5x4 Gy or 5x5 Gy and edentate patients were given a dose of 1x10 Gy or 1x12.50 Gy prescribed to the 80% isodose. All patients were treated with a single isocenter. RESULTS: With a mean follow-up period of 25 months (range 12-61), the actuarial local control rate at 5 years was 91% (only 1 patient failed). The actuarial rate of hearing preservation at 5 years was 66% in previously-hearing patients. The actuarial rate of freedom from trigeminal nerve toxicity was 97% at 5 years. No patient developed facial nerve toxicity or other complications. CONCLUSION: In this unselected series, fractionated stereotactic radiation therapy and linear accelerator-based radiosurgery give excellent local control in acoustic neuroma. It combines a high rate of preservation of hearing with a very low rate of other toxicity, although follow-up is relatively short.


Stanford CK 2005

Staged stereotactic irradiation for acoustic neuroma.
Chang SD, Gibbs IC, Sakamoto GT, Lee E, Oyelese A, Adler JR Jr.

Department of Neurosurgery, Stanford University School of Medicine, Stanford, California 94305, USA. sdchang@stanford.edu

OBJECTIVE: Stereotactic radiosurgery has proven effective in the treatment of acoustic neuromas. Prior reports using single-stage radiosurgery consistently have shown excellent tumor control, but only up to a 50 to 73% likelihood of maintaining hearing at pretreatment levels. Staged, frame-based radiosurgery using 12-hour interfraction intervals previously has been shown by our group to achieve excellent tumor control while increasing the rate of hearing preservation at 2 years to 77%. The arrival of CyberKnife (Accuray, Inc., Sunnyvale, CA) image-guided radiosurgery now makes it more practical to treat acoustic neuroma with a staged approach. We hypothesize that such factors may further minimize injury of adjacent cranial nerves. In this retrospective study, we report our experience with staged radiosurgery for managing acoustic neuromas. METHODS: Since 1999, the CyberKnife has been used to treat more than 270 patients with acoustic neuroma at Stanford University. Sixty-one of these patients have now been followed up for a minimum of 36 months and form the basis for the present clinical investigation. Among the treated patients, the mean transverse tumor diameter was 18.5 mm, whereas the total marginal dose was either 18 or 21 Gy using three 6- or 7-Gy fractions. Audiograms and magnetic resonance imaging were obtained at 6-months intervals after treatment for the first 2 years and then annually thereafter. RESULTS: Of the 61 patients with a minimum of 36 months of follow-up (mean, 48 mo), 74% of patients with serviceable hearing (Gardner-Robinson Class 1-2) maintained serviceable hearing at the last follow-up, and no patient with at least some hearing before treatment lost all hearing on the treated side. Only one treated tumor (2%) progressed after radiosurgery; 29 (48%) of 61 decreased in size and 31 (50%) of the 61 tumors were stable. In no patients did new trigeminal dysfunction develop, nor did any patient experience permanent injury to their facial nerve; two patients experienced transient facial twitching that resolved in 3 to 5 months. CONCLUSION: Although still preliminary, these results indicate that improved tumor dose homogeneity and a staged treatment regimen may improve hearing preservation in acoustic neuroma patients undergoing stereotactic radiosurgery.

Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 03, 2008, 07:41:25 pm
Phyl -

time to start popping the popcorn I think  ;)

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 03, 2008, 08:02:07 pm
*takes sip of martini*
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 03, 2008, 08:47:30 pm
I will just reply to a few bits. I'm with Phyl and Jan on this one - popcorn and martinis, please.

The quote in question regarding FSR vs GK in the 20-30 mm range is on the anworld treatment page: http://anworld.com/treat/

Based on Mark's quotes, as of today I no longer suffer from hearing loss; it is now called dysaudia, a far more impressive sounding term. Does that make me dysaudic?

While on the subject of personal modifiers, what about dentate and edentate? I was not aware that this was a consideration in choosing a radiation treatment protocol, nor that being edentate made you a better pick for a single dose. Am I dentate or edentate? Does a bridge count?

Your semi-dentate dysaudic friend,

Steve

Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 03, 2008, 08:56:55 pm


Based on Mark's quotes, as of today I no longer suffer from hearing loss; it is now called dysaudia, a far more impressive sounding term. Does that make me dysaudic?

While on the subject of personal modifiers, what about dentate and edentate? I was not aware that this was a consideration in choosing a radiation treatment protocol, nor that being edentate made you a better pick for a single dose. Am I dentate or edentate? Does a bridge count?

Steve,

As I skimmed thought the various studies I caught those phrases in the one study as well and have no idea what it means either. Obviously, mysterious Dr. "speak"

You crack me up  ;D

Mark
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 03, 2008, 09:05:23 pm
For Steve's benefit

edentate  Definition

eden·tate (ē den′tāt′, i-)

adjective

   1. without teeth
   2. of the edentates

Etymology: ModL edentatus < L, pp. of edentare, to render toothless < e-, out + dens (gen. dentis), tooth + -ate

noun

any of an order (Edentata) of mammals having only molars or no teeth at all, as the sloths, armadillos, and anteaters


I guess I'll have to go back and look at that study, I thought it said Acoustic Neuroma, but perhaps it was dental radiosurgery.  ;D :o

I really still have no idea what the researcher meant by classifying the participants that way  ???

Mark
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 03, 2008, 10:34:11 pm
Mark -

thank goodness you gave us definitions so we could decipher Steve's post!  I had no idea what he was saying - but I did find it amusing.

I've never had a martini - with or without popcorn - but since I've spend the majority of my day cleaning closets, anything with alcohol sounds fantastic to me  ;D

Cheers!

Dysaudic Jan

Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 03, 2008, 10:57:29 pm

any of an order (Edentata) of mammals having only molars or no teeth at all, as the sloths, armadillos, and anteaters


At least I am in good company.  ;D

Steve
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Kate B on May 04, 2008, 12:27:22 pm
I guess I'm just partial to the ANA and their website - if people want to call me biased, it doesn't bother me a bit.

  I couldn't find Michigan Ear Institute - which is rumored to be 2nd only to HEI - nor could I find the docs in NY or OH - their specific names escape me.  Did I just miss them?  Could other AN patients request they be added?
Jan

I believe there is room for both websites.  That being said, when you raise questions about doctors posted, I find it interesting that the doctors on the ANA website pay to be there. 

"The physicians or organizations listed have self-reported data to meet criteria established by the ANA for having substantial experience in treating acoustic neuromas. The physicians have paid an administrative fee to be listed, and the listings should NOT in any way be construed as an endorsement or recommendation by the ANA. It is every individual's responsibility to verify the qualifications, education and experience of any healthcare professional."


On the ANworld website, it is patient driven-no administrative fees or any other kind. Adding the Michigan Ear Institute is not a problem. Others can PM me if there are doctors they consider a recommendation for others.

Kate
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 04, 2008, 05:51:28 pm
Kate -

glad you will add Michigan Ear to your site; I have no firsthand knowledge of it, but hear it's a very good place to have treatment.  I'm sure you realize if my docs weren't listed on ANworld, I'd be barking about that - but I was pleasantly surprised to find them there  :)  I've no doubt that other members of this forum can recommend other great doctors.  I know recently we've had members treated in both Ohio and New York so maybe they'll chime in here.

As for the docs paying to be on the ANA website, I think we've been over that before.  The ANA is a non-profit association - very small in the world of associations - and even if every patient who had an AN paid dues, I can't imagine they could exist without non-dues revenue.  I know this because I work for a huge (by comparison) non-profit association ironically called the AANA.

AANA stands for American Association for Nurse Anesthetists - a mouthful I know  ;D.  We have over 25,000 members nationwide.  I am the controller of said organization - have been forever it seems - and I can tell you from experience that non-profit organizations need all the non-dues revenue they can get in order to stay afloat.  By the way, our members are specialty nurses called CRNAs - which stands for Certified Registered Nurses Anesthetists.  In a nutshell, CRNAs are basically RNs who have been trained to administer anesthesia. They have the same qualifications as anesthesiologists, but they are RNs not MDs and they also typically make less money.  Our annual dues are much greater than the ANA's annual dues and we still do everything we can to generate non-dues revenue.

I can't say for sure that this is why the ANA asked for an administration fee from docs listed on their website, but it makes total sense to me.  As we all know, ANs are uncommon and IMO since these days both doctors and lawyers are allowed to advertise, a doctor who treats ANs would be remiss not to pay to be on the ANA website.  It's an outstanding resource for AN patients and their families.

Also, if you read the ANA's mission statement it is more than clear why they list doctors who treat ANs - payment or no payment.

Pass the popcorn, please  ;D

Jan

Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Kate B on May 04, 2008, 06:11:30 pm
Jan,

No problem and no need for popcorn as there is nothing to debate relative to the worthiness of the two sites.  The note was that  even the ANA site doesn't endorse the doctors and that they pay a small fee to be there. The ANA existing because of fees is not the issue so let's not distract.

It was clarifying that the anword site originates from patients not from doctors and if Michigan Ear was not there, it was because it hadn't been requested by patients.  It is now there; it would be helpful for someone to give me the name of a doctor that is worthy of a patient rec.

BTW,your doctors are there because Wiet (my local doctor) and your doctor are a part of the same practice:-)  Many people have been helped by both sites.

Kate
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 04, 2008, 06:36:52 pm
The note was that  even the ANA site doesn't endorse the doctors and that they pay a small fee to be there.

Kate -

Sorry I guess I misread your comment to me.  I thought your objection was that the ANA lists doctors but doesn't endorse them, so I felt compelled to tell you why I thought that was.

It was not at all my intention to distract you.

It is not part of the ANA's mission to endorse doctors; therefore, they don't.

You and Philip both stated that it is ANworld's intention to inform patients, and adding doctors to the site will help facilitate that; thanks.

And, you are correct, there is room for both.

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 04, 2008, 07:51:58 pm
*pops very large bowl of popcorn*
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 04, 2008, 08:28:28 pm
Mark,

I wasn't ignoring you but there is so much in your answer I don't know where to begin.  So I'll just respond to


Your "flat wrong" comment seems a bit exaggerated.  The thinking behind the sentence you object to is explained in my response to Steve above.  If you think it's wrong pray tell why.

No more so than ""When the AN is between 20mm and 30mm ...with radiation GK is suitable at the lower end of this size range, but FSR is usually more suitable for the upper size limit.", although, in fairness I can't see where Steve found that quote on the AN world web site. That sounds like a web site opinion as opposed to a scientific study conclusion to me.


I now realize that, since you had not seen the page that started the whole discussion, your "flat wrong" comment was out of context.  The page in question, which as someone already pointed out is http://anworld.com/treat/ (http://anworld.com/treat/), is there to provide a quick guide to newbies as to what treatment options they face depending on the size of their tumor.  It is definitely not supposed to be a scientific treatise. (The radiation page goes in to much more detail.) It does not even mention CK, just GK and FSR which are to be understood as meaning single-session and fractionated.  Since that seems to be causing confusion, I'll change the wording to make it plain that we are saying that fractionation might be preferable to single-session for larger tumors.

Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 04, 2008, 08:29:35 pm
Hold the popcorn, Phyl.

Kate says there is nothing to debate.

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 04, 2008, 08:34:09 pm
Philip,

In follow up to your response to Mark, can you all please elaborate on the protocols offering "fractionated" treatments. Ie: Trilogy, Cyberknife and yes, there are sites doing fractionated GK (one in TX and since Dr. Gorj Noren is noted on your site, pls check with him as, from my understanding, he has also been pursuing it. He's a terrific reference, as we know....)

thanks for the consideration.
Phyl


Jan, the popcorn is done popping and I've got the bowl... thanks! :)
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 04, 2008, 08:36:38 pm
Jan, the popcorn is done popping and I've got the bowl... thanks! :)

Wait, I didn't mean literally hold the popcorn - I meant hold it (as in stop making it)  :D

Apparently we aren't debating.

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 04, 2008, 08:39:03 pm
Haven't stopped popping the popcorn... just the bowl in my lap... got butter on it too, if anyone cares to have any.
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 04, 2008, 08:43:12 pm
Any martinis tonight  ???
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 04, 2008, 08:44:28 pm
Had a bloody mary at the brunch today... 1's my limit for the day :) 
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 04, 2008, 09:10:45 pm
Phyl,

... can you all please elaborate on the protocols offering "fractionated" treatments. Ie: Trilogy, Cyberknife and yes, there are sites doing fractionated GK (one in TX and since Dr. Gorj Noren is noted on your site, pls check with him as, from my understanding, he has also been pursuing it. He's a terrific reference, as we know....)

There are exceptions everywhere. GK is usually single-session and modern Linac protocols are usually fractionated. But as you note Dr Noren does fractionated GK (I hadn't heard about the Texas one), and conversely there are probably many cases of single-session Linac. In fact the Dutch center quoted by Mark does both single-session and multi-session Linac, depending on whether or not the patient has teeth to secure the face mask! 

I think CK at Stanford is always fractionated, but I'm not sure.  There are probably others who do single-session CK.  There is also proton beam.  Again I'm not sure but I think that is single-session.

Do we get popcorn only when we disagree?

Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 04, 2008, 11:57:08 pm
In fact the Dutch center quoted by Mark does both single-session and multi-session Linac, depending on whether or not the patient has teeth to secure the face mask! 

Aha! Now the separation of patients into the dentate and edentate groups makes sense; if you have no teeth, you can't hold the mouth-guard mask, so you get it all in one shot. No connection to armadillos after all...
- - - -

Perhaps some of the issue is about terminology. I consider FSR to mean 20 or more sessions, on a machine other than a GK or CK machine. If you use that acronym  to refer to GK or CK, you are just confusing people. The technical definition of fractionation is not the main thing (unless you are making margaritas).

The choices most people face are GK with 1 shot; CK with 3-5 shots; or Trilogy-style machines, with 20 + shots (aka FSR). Using GK or Trilogy to do 3-5 shots is possible, but you might as well use CK for that.

Hm, margaritas, chips, salsa...

Steve
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 05, 2008, 04:38:29 am
Hello Steve,

some of the issue is about terminology.

How right you are.  On the ANworld mailing list, FSR is always understood to mean what Johns Hopkins and Lederman do: 4-5 sessions, low dose.  The 20-30 session protocols are hardly ever mentioned and nor is Trilogy.  Other machines/systems exist such as the Novalis or Tomotherapy. It might be a good idea to update the equipment information on the ANworld site or even provide a list. 

I wonder if it isn't unnecessarily confusing though.  There are so many factors which count at least as much as the machine: the experience of the medical team, the targeting software... Patients can't hope to understand all the variables. It's best to look at the published outcome statistics, hope you can trust them, and choose the treatment center with the best results.

Just one example to illustrate.  Last year a hospital in Toulouse (France) made a mistake when they set up their new Novalis machine.  As a result over 100 patients, including AN patients, received considerably higher doses than were intended.  Many are suffering as a result, a few have died though not necessarily from the over-dose.  One lady on the ANworld Francophone mailing list was a victim and now has facial paralysis which is almost unheard of with radiation. 

Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 05, 2008, 05:33:50 am
Terminology is key and has been discussed on this site before.  We have noted to folks to clearly elaborate on which machine when referencing "FSR" as "FSR" is the fact of fractionating a treatment, not necessarily due to one machine. On this discussion forum, many have referenced "FSR" in discussions when referencing a machine, such as Novalis, and usually note it as 25-30 day protocol, not approx 4-5. 

A clear elaboration of which machine is necessary when noting "FSR" to help AN patients understand the "fractionation" of a radio-treatment, where GK is usally a single-dose (non-fractionated) but as noted, fractionation of GK is also coming into play.

Popcorn is for those sitting on the sofa watching a spirited discussion.  Better than watching a movie on cable tv..... as we never know what direction a conversation will go.  Trail mix and virtual drinks that many cannot have in life are also offered to enhance the viewing pleasure. :)

Phyl
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: jb on May 05, 2008, 04:38:17 pm
Thanks for saving drinks and snacks!  Thought I might have missed out over the weekend. :)

Philip, thanks for the link to the Japanese paper with the follow-up MRI's following GK.  I hadn't seen that one before.  I actually see some of the same (new) hyperintensity on my own follow-up MRI as one of the GK patients had.  My doc said it should be temporary, so it's reassuring to see that it was temporary for the GK patient.

....It does not even mention CK, just GK and FSR which are to be understood as meaning single-session and fractionated.  Since that seems to be causing confusion, I'll change the wording to make it plain that we are saying that fractionation might be preferable to single-session for larger tumors.

Philip
I have to say I'm still stuck on the claim that a fractionated treatment may be preferable for large tumors.  Does this assume fractionation results in less swelling and is therefore safer?  Most of the information I've read suggests that tumor necrosis, if it occurs, is a pretty unpredictable process and can produce a lot of swelling no matter what kind of radiation scheme was used.  Seems like only about 5-10% of patients experience significant swelling, but it can be life-threatening to those with a large tumor to begin with.  However, I did notice that one of the patients in the Japanese paper had a very large tumor and apparently had no problem with GK.

I also took a look at Dr. Lederman's slides from the January '08 presentation.  I noticed that he quoted a total of 4 failures from 372 treated tumors; 465 were actually treated, but apparently about 100 were lost to follow-up (http://anworld.com/radiation/lederman-Paris-Jan-2008/img52.html (http://anworld.com/radiation/lederman-Paris-Jan-2008/img52.html)).  In comparison, the "Radiation Failures Study" on the ANWorld website (http://www.anworld.com/radiation/failures/ (http://www.anworld.com/radiation/failures/)) reports 11 failures among just 40 Lederman/SIUH-Cabrini patients back in 2005.  The definition of failure for the study was a "tumor re-growth or life-threatening tumor swelling", so maybe Dr. Lederman is counting only tumor regrowth as a failure.  Still, he also states that no further treatment is required for 99% of patients, but I would have to think that further treatment would be needed for "life-threatening tumor swelling."  Any thoughts on the discrepancy?

Thanks,
JB
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 05, 2008, 05:52:03 pm
Hello JB,

Does this assume fractionation results in less swelling and is therefore safer? 

Yes.  I have always understood that the purpose of fractionation is to allow non-tumor surrounding tissue to recover between sessions.  Otherwise what would be the rationale for fractionation? It does seem logical that swelling would be minimized as a result.

Can it be proved?  I doubt it.  Individual response to radiation varies as you point out.  There is a good discussion of the pro's and con's of fractionation by Dr Mitchell K Schwaber in an excellent eMedecine article: http://www.emedicine.com/ent/topic668.htm (http://www.emedicine.com/ent/topic668.htm). He says: "The main advantage of fractionation is that it allows higher doses to be delivered to the tumor because of increased tolerance of the surrounding healthy tissues to these smaller fractionated doses."  Dr Lederman claims that he gets good hearing preservation because he insists on a full day or two of rest between sessions.

As to your second question, I can't talk for Dr Lederman, but I do think he, and other radiosurgeons, define "failure" as inability to control growth in the long term.  Patients have a different viewpoint.  We might consider a procedure to have failed if the results don't match our expectations. 

Surgeons are just as bad.  If the patient has chronic headaches or facial paralysis or a regrowth, that, in surgeon speak, is a complication, not a failure.  :(  Even if the patient dies I think the doctor might consider the operation a success!

Donna's report on FSR failures was from the patients' viewpoint.  And her sample was necessarily skewed because patients who are happy with their results usually don't stick around on mailing lists to tell us about it as much as unhappy patients do.

Philip

Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 05, 2008, 08:03:48 pm

On the ANworld mailing list, FSR is always understood to mean what Johns Hopkins and Lederman do: 4-5 sessions, low dose.


That explains a lot. I don't think that is generally understood to be the meaning of FSR, however. I would suggest not using the acronym, and being more explicit about what sort of treatment protocol you mean. "Low dose" is really a function of how many doses; it isn't linear, but there is a formula, such that the total effective dose is roughly the same. So I would assume that a 3-5 session protocol would use a dose smaller than a single GK shot, and larger than a 25 day FSR protocol. Just saying "3-5 fractions" is enough, and would be a lot clearer.

- - - - - -

For jd as well, on the swelling subject:

It seems to me that there are two kinds of swelling that occur. The first is swelling of surrounding normal tissue, along with the tumor, in an immediate response to the radiation. This kind of swelling can be reduced by fractionation, and also by taking a steroid during and just after treatment.

The second kind occurs later, perhaps 2-3 months, when the tumor begins to die off, and is undergoing necrosis. This swelling is a result of having had radiation damage to the tumor, and the treatment protocol doesn't really make any difference. Once you have received your full allotment of radiation, and the tumor begins to die from the damage it has sustained, it is a dying tumor, regardless of how it got that way.

The purpose of fractionation is to reduce the first kind of swelling, where healthy neighboring tissue can suffer, including the hearing nerve and cochlea. None of the treatments can do anything about the second kind. Tumor death is the goal, and the edema and swelling that often accompany it must simply be accepted, and treated with steroids when necessary. That is the reason that tumors over 3 cm are not good candidates for any kind of radiation - they can swell up too much when they start dying 3 months later.

That's the way I see it, anyway.

Steve
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 05, 2008, 08:10:02 pm
Even though I have a glass of wine and not a martini, I'll add a couple thoughts here:

Does this assume fractionation results in less swelling and is therefore safer?

Yes.  I have always understood that the purpose of fractionation is to allow non-tumor surrounding tissue to recover between sessions.  Otherwise what would be the rationale for fractionation? It does seem logical that swelling would be minimized as a result.

Can it be proved?  I doubt it.  Individual response to radiation varies as you point out.  There is a good discussion of the pro's and con's of fractionation by Dr Mitchell K Schwaber in an excellent eMedecine article: http://www.emedicine.com/ent/topic668.htm. He says: "The main advantage of fractionation is that it allows higher doses to be delivered to the tumor because of increased tolerance of the surrounding healthy tissues to these smaller fractionated doses."


Based on my conversations with neurosurgeons and radiation docs, my understanding is a little different and I think one has to separate the issues of cranial nerve preservation and swelling. As pointed out in the quote by Dr. Schwaber , I would agree that the primary value in fractionating the treatment is to allow the Healthy tissue with normal DNA to recover between treatments which the abnormal DNA of the tumor is unable to do. This is primarily to the benefit of hearing nerve which is far more sensitive with it's thousands of hairlike elements used in the transmission of sound to the brain. Studies suggest this improves hearing by 10-15% over one dose protocols. There is some value also to the facial nerve results  but it is more tolerant than than hearing so studies don't show that much of an improvement. Swelling in the treated area on the other hand is a function of how the tumor reacts to the lethal cumulative dose of radiation as well as how much surrounding healthy tissue is impacted which is why I personally do believe machine accuracy is a factor to be considered. Biologically the tumor is killed because of either immediate cell death or the DNA damage to the surviving cells makes further replication impossible. Blood and other fluids will also expand within the tumor in reaction to being zapped. Swelling can also be impacted by the machines ability to provide isocentric treatment to irregular shaped tumors thus avoiding hot and cold spots in the treatment. Not all machines have equal ability in this area. So even in a fractionated treatment the level of swelling  can be influenced by these factors as well. Also keep in mind that while a one dose GK is about 12 GY and a 3 dose with CK is about 18GY, a 25-30 day protocol is closer to 45-50 GY and all are calculated to those numbers based on what will provide a biological lethal dose to the AN. I can very quickly get beyond my knowledge base in this area but that is what the physicists and radiation folks are paid to know and figure out  ;)

Dr Lederman claims that he gets good hearing preservation because he insists on a full day or two of rest between sessions.

I'll probably get the popcorn popping on this one , but I posted Dr. lederman's 48 hour protocol over on the CPSG site and got this response from Dr. Medbery who I have a lot of respect for:

There are considerable reasons for thinking that using the sort of fractionation scheme he is proposing is going to result in significantly higher failure rates. Those may not become evident for a few years, but are going to cause a lot of grief for the patients whose tumors grow.

His words, not mine. I'm not sure how much better Lederman's hearing preservation rates are than other fractionated protocols, but it would be quite meaningless to the patient if his failure rates increase substanially. I guess time will tell on that one.

As to your second question, I can't talk for Dr Lederman, but I do think he, and other radiosurgeons, define "failure" as inability to control growth in the long term.  Patients have a different viewpoint.  We might consider a procedure to have failed if the results don't match our expectations.

Surgeons are just as bad.  If the patient has chronic headaches or facial paralysis or a regrowth, that, in surgeon speak, is a complication, not a failure.  Sad  Even if the patient dies I think the doctor might consider the operation a success!


I think Philip's comments here are very fair and accurate as a general statement. I do think there are pockets of physicians that do assess the outcome based on the patients outcome and not whether the surgery was technically correct or the tumor was killed. I was fortunate that was the philosophy expressed by the doctors I had at Stanford ( Chang, Schuer  and Gibbs). I did not ask that question , they each expressed it in separate conversations which impressed me tremendously.

Donna's report on FSR failures was from the patients' viewpoint.  And her sample was necessarily skewed because patients who are happy with their results usually don't stick around on mailing lists to tell us about it as much as unhappy patients do.

Agree 100%, it's really the human nature aspect and applies to both surgery and radiosurgery patients. It's very easy to look in the mirror and say you've survived a bump in life's road and simply move on. In hindsight , that was one of the drawbacks to the Cyberknife patient group and why we felt there was no point to continuing it. We simply couldn't keep people involved, they got treated , had no issues , and went back to their daily lives. That is the reason I personally applaud and appreciate everyone who's a "postie" and stays involved on this forum to give back and support either the newly diagnosed or those who are having issues. It takes a commitment to others and a gift each of you give  :)

Mark
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 05, 2008, 08:16:09 pm
That is the reason I personally applaud and appreciate everyone who's a "postie" and stays involved on this forum to give back and support either the newly diagnosed or those who are having issues. It takes a commitment to others and a gift each of you give  :)

... as do I, as I stated in the ANA March Newsletter.... kudo's to all that do.

*pours martini, shaken/not stirred, slightly dirty, straight up, extra olives.... and pulls bowl of popcorn back into lap*
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 05, 2008, 08:16:51 pm
That is the reason I personally applaud and appreciate everyone who's a "postie" and stays involved on this forum to give back and support either the newly diagnosed or those who are having issues. It takes a commitment to others and a gift each of you give  :)


Mark -

this statement applies to you also. 

Thank you for adding much valuable information and insight to the forum. 

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: jb on May 05, 2008, 09:29:25 pm
Quote
Even though I have a glass of wine and not a martini, I'll add a couple thoughts here:
Quote
*pours martini, shaken/not stirred, slightly dirty, straight up, extra olives.... and pulls bowl of popcorn back into lap*
I'm just  a beer drinker, maybe that's my problem  ???


For jd as well, on the swelling subject:

It seems to me that there are two kinds of swelling that occur. The first is swelling of surrounding normal tissue, along with the tumor, in an immediate response to the radiation. This kind of swelling can be reduced by fractionation, and also by taking a steroid during and just after treatment.

The second kind occurs later, perhaps 2-3 months, when the tumor begins to die off, and is undergoing necrosis. This swelling is a result of having had radiation damage to the tumor, and the treatment protocol doesn't really make any difference. Once you have received your full allotment of radiation, and the tumor begins to die from the damage it has sustained, it is a dying tumor, regardless of how it got that way.

The purpose of fractionation is to reduce the first kind of swelling, where healthy neighboring tissue can suffer, including the hearing nerve and cochlea. None of the treatments can do anything about the second kind. Tumor death is the goal, and the edema and swelling that often accompany it must simply be accepted, and treated with steroids when necessary. That is the reason that tumors over 3 cm are not good candidates for any kind of radiation - they can swell up too much when they start dying 3 months later.

That's the way I see it, anyway.

Steve

Thanks, Steve, that's my understanding as well.  I don't take issue with the immediate treatment or the sparing of healthy tissue surrounding the tumor with fractionation. My concern is with necrosis in the tumor itself and the swelling that may accompany it.  It's my understanding that this type of swelling is what causes serious, possibly life-threatening problems with the large tumors.



As to your second question, I can't talk for Dr Lederman, but I do think he, and other radiosurgeons, define "failure" as inability to control growth in the long term.  Patients have a different viewpoint.  We might consider a procedure to have failed if the results don't match our expectations. 

Surgeons are just as bad.  If the patient has chronic headaches or facial paralysis or a regrowth, that, in surgeon speak, is a complication, not a failure.  :(  Even if the patient dies I think the doctor might consider the operation a success!

Donna's report on FSR failures was from the patients' viewpoint.  And her sample was necessarily skewed because patients who are happy with their results usually don't stick around on mailing lists to tell us about it as much as unhappy patients do.

Philip


Actually, there is a separate category in the survey for "non-medical failures"/dissatisfied patients, so I assume the cases you're referring to would have ended up there.  Even with a skewed sample, it is difficult to reconcile a greater number of failures in the sample than was reported for the entire population.
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 05, 2008, 09:30:11 pm
Steve and Mark,

Just a quick response. 

I think it's just too difficult for most patients to worry about the differences in the machines and protocols and dosages.  Those of us who have an intellectual curiosity about these things find pleasure talking about it.  But the newly diagnosed patient can't try to dictate the doctor's protocol.  They need a basic understanding of the options and then should ask each doctor: how many patients have you treated using this protocol, what outcome statistics can you give me, what outcome do you predict for me specifically?

Steve, I think you are right about FSR being an ambiguous acronym, describing different things for different people.  When I changed the wording on the http://anworld.com/treat/ (http://anworld.com/treat/) page following our conversation I removed the term and just talked about fractionation.  On the radiation page http://anworld.com/radiation/ (http://anworld.com/radiation/), this terminology problem does not arise because each protocol is described ad nauseam.

Mark, was that comment from Dr Medbury specifically about Dr Lederman's protocol?  He seems to be talking about a hypothetical case.  Dr L has been treating ANs with the same protocol since the early 1990s.  Long term results are available. Time has told.  For instance Chris - who wrote the radiation section of the ANworld site - was treated by Dr L in 1998.  He reported at his latest MRI that his tumor had now shrunk to 25% of its original size (with no hearing loss).

Philip



Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 05, 2008, 09:57:00 pm
Philip,


Mark, was that comment from Dr Medbury specifically about Dr Lederman's protocol?  He seems to be talking about a hypothetical case.  Dr L has been treating ANs with the same protocol since the early 1990s.  Long term results are available. Time has told.  For instance Chris - who wrote the radiation section of the ANworld site - was treated by Dr L in 1998.  He reported at his latest MRI that his tumor had now shrunk to 25% of its original size (with no hearing loss).

yes, the response from Dr. Medbery was to Dr. Lederman's protocol as described on the AN world site. Are you sure he has used the "exact" same protocol over those years? If so, then I would agree he should have at least 10 plus year follow on it and tumor control results that are definitive. I guess the next question is where are those studies and why aren't other doctors familiar with them? I've followed Medbery's posts for several years now and he's always impressed me as being on the "top of his game" in terms of being aware of and referencing current studies. Can you get or point me to a copy of Lederman's study (s) on this protocol?

As far as the machines go, I don't disagree with you that most people get overwhelmed with some of the technology issues and at a certain level most would be satisfied following the process you describe. It is all about managing outcome probabilities and many people are comfortable with a machine that has a 7 out of 10 good result ratio vs. an 8 out of 10. I take a philosophy of giving myself the best odds I can get  ;). I know you feel machine accuracy and isocentric capability is a non factor and we can agree to disagree on that one. Again, while I think your comment reflects the norm for most radiosurgery patients, unfortunately , outside of probably the teaching medical centers where they are research oriented, I think getting good and honest information from many doctors on their "results" falls into the trap you so correctly pointed out in a previous post- that many docs define success differently and sometimes may be better at managing a patients outcome expectations that delivering on them. But as the old adage goes "it is what it is"

Mark
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Philip on May 06, 2008, 03:05:50 am
Hello Mark,

> Are you sure he has used the "exact" same protocol over those years?  <

The only thing I'm sure of is that he says he has, and makes a strong point of it. 

> where are those studies and why aren't other doctors familiar with them? <

The latest information available is summarized in the Powerpoint presentation he gave in January,  which we published on the ANworld site: http://anworld.com/radiation/lederman-Paris-Jan-2008/LedermanParis2008.html (http://anworld.com/radiation/lederman-Paris-Jan-2008/LedermanParis2008.html). Flip through the slides and watch some of the video. He seems to prefer to talk directly to patients rather than publishing in peer reviewed journals.  He is a colorful character, as you will see from the video.  I'm sure he must have rubbed some of his colleagues the wrong way over the years. 

> I take a philosophy of giving myself the best odds I can get <

Yes so do I.  I was given the luxury of researching this thing for 7 seven years while the tumor kindly stopped growing.  But I can understand those who have neither the time nor the inclination to question the medical experts.

> I know you feel machine accuracy and isocentric capability is a non factor <

Did I say that?  I've given you the wrong impression.  I don't think it is unimportant.  I do think it is complex and requires more medical knowledge to evaluate than I have at my disposal.

Cheers
Philip
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 06, 2008, 08:35:16 am

> where are those studies and why aren't other doctors familiar with them? <

The latest information available is summarized in the Powerpoint presentation he gave in January,  which we published on the ANworld site: http://anworld.com/radiation/lederman-Paris-Jan-2008/LedermanParis2008.html (http://anworld.com/radiation/lederman-Paris-Jan-2008/LedermanParis2008.html). Flip through the slides and watch some of the video. He seems to prefer to talk directly to patients rather than publishing in peer reviewed journals.  He is a colorful character, as you will see from the video.  I'm sure he must have rubbed some of his colleagues the wrong way over the years. 


You have paid a lot of attention to a doctor who does not publish in peer reviewed journals, and is not well regarded in the world of radiation oncology. That detracts from the credibility of the AN World site. It is your site, you can put up whatever you want; but if you want to know what makes others skeptical about it, look no further.

Steve
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 06, 2008, 10:01:03 am
*takes 100mg Imitrex.....*    :-\
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Mark on May 06, 2008, 10:33:56 am
Hi Philip,

> I know you feel machine accuracy and isocentric capability is a non factor <

Did I say that?  I've given you the wrong impression.  I don't think it is unimportant.  I do think it is complex and requires more medical knowledge to evaluate than I have at my disposal.


I guess I made that assumption from this section of the AN world web site, but it may have been written by one of your colleagues


The Accuracy Debate
Sometimes, treatment centres will claim that their treatment machine (Gamma Knife, Linac, Cyber-Knife) is "more accurate" than the others. We have seen "evidence" that shows each of these three common machines to be the most accurate!

It is our opinion that such a debate is meaningless. Why is this? Well, we also see evidence of excellent results from experts using each of the machines (and less good results from the less expert) and at the end of the day, it is the results which count. Once again our advice is find the centre/treatment provider whose results look best for you and not to worry too much about how that is achieved.

After all, if you are buying a painting, you don't worry that the artist may have chosen the wrong sort of brush; you judge what is on the canvas! (And I can't produce a Leonardo, even if you give me the very brushes used to paint the Mona Lisa!)


I certainly agree with you that it can be complicated for many patients to understand and easily "muddied" by various doctor and manufacturer claims, but it is also not an insignificant factor in the final decision in my view. BTW, reflecting back on a previous post about AN world not being biased, I think any time you use the phrase "in our opinion" you are injecting a bias by definition. You might want to reconsider the wording of that section  ;)

In terms of Dr lederman's protocol success and claims without a supporting peer reviewed study, I guess I would also land in the same place as Steve's comments. I have a hard time reconciling a clinician having that much success on an "innovative" protocol and not presenting it to the healthcare community. Seems like you would want to document and demonstrate your outcomes. not doing that seems to raise concern on the validity of his results.

Mark
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: ppearl214 on May 06, 2008, 12:01:18 pm
Hi all,

Official warning.... this thread will be locked.  I feel bad for the original poster, who has yet to respond back to this. Although the original post was in reference to Dr. Lederman, this is getting out of hand.  I know everyone is trying to keep it a respectable "discussion" and I commend you all for respect shown back and forth .... but know that there is also fine lines being walked here (ie: leaning towards flaming, etc, as noted in our site rules).

Please know this is being watched VERY carefully and will be locked if respect of opinions (on all fronts) is not demonstrated.

thank you.
Phyl
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: km5 on May 07, 2008, 10:10:53 pm
Hello,

It's the original poster, and I have been actively following the discussion but did not feel I had anything essential to contribute.  All of your knowledge and generosity and passion are very much appreciated.  Actually, today I had a brainstorm that I am going to further investigate re our 23-yr-old son with the 4 mm neuroma.

Through an incredibly lucky coincidence, which proves once more to a native Los Angelean that our city is really quite small, a friend called and reported that his new neighbor just arrived from Europe to head the Neural Tumor Research Center at the House Institute and was a specialist in ANs.  The doctor invited us to call him directly, my husband spoke with him today, and says that the doctor was incredibly kind and generous with his time.

Apparently, in Europe, small ANs such as our son's are not treated with either radiation or surgery, but are watched and monitored with regular MRIs.  It is not expensive in Europe to use MRIs to monitor ANs over lengthy periods, and that is done frequently.  Interestingly, he says that he is going soon to an international conference where there will be a lot of discussion re possible malignancy many years following the radiation of benign tumors, a dispute which he says is very much alive.  So all of this has got me to thinking...

We are all relying on our son's subjective report that his hearing has gotten worse recently because he says he uses one ear more than the other to listen to his cell phone.  The MRI confirmed that he has a small AN with a loss of high frequency hearing in his right ear.  However, this is not the first time that our son has had a hearing loss confirmed.  When he was 10-12 years old he visited an ENT several times, and was diagnosed at that time as having some loss.  We can't remember now whether it was in one ear, but something about "high frequencies" seems familiar.  So...could it be that if we are able to find our son's audiograms from 10 plus years ago that the loss was already apparent?  Could it be that he had an AN that has been stable for all these years, and that his subjective report of loss today was instead something he just "noticed" for the first time, and now just keeps on noticing.  After all, he is becoming much more aware and mature in many respects over the last few years.  As a wild and crazy teenager, he just may not have noticed or paid attention to his uneven hearing deficit.

So today it seems like it would be a very good idea to watch and wait, which was actually a very realistic option suggested by Dr. Chang, at least for 6 months.  We will search for the original audiograms, and then will actually have something to compare.

It could be that I am reaching for an answer that is what I "want", rather than the medical realities, but I'm pretty comfortable that this is an avenue that is worth pursuing.

Thanks to all of you for everything you provide our community. 
Katherine
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: sgerrard on May 07, 2008, 11:33:56 pm
Hi Katherine,

Thanks for posting back. Your actual case did kind of get lost in the shuffle here. 4 mm is certainly small enough to watch and wait; I am not surprised to hear that Dr. Chang suggested it.

One sided hearing loss is a little more unusual, and seems to be a indicator that gets ENT's looking for something as a cause. It is possible to have a small AN that stays small for a long time. Besides getting another MRI or two, having regular hearing tests will help establish whether your son is losing more hearing over time.

I know for a fact that in my own case, I was losing hearing at least six months before the "plugged up ear" symptom got me in to see a doctor. After it was noted on a routine hearing test at work, I was vaguely aware my hearing was weaker, but not bothered enough by it to say anything. So it is also possible that your son has simply been ignoring the symptom for a while.

Let's hope you have a nice long watch and wait. :)

Steve
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: Joef on May 08, 2008, 04:39:04 am
I noticed a hearing loss in my AN ear in my early 20's ..but my mother had the same loss .. (today she wears normal hearing aids) so I said it was bad genes! and really  thought nothing of it .... untill other issues started to crop up at 40 ... I wonder how big my AN was back then ..  ??? I would bet it was there - just starting out...
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: leapyrtwins on May 08, 2008, 06:21:06 am
Katherine -

thanks for getting back to us.  I'm sorry your original post was kind of lost in the scheme of things.

With an AN of 4 mm, watch and wait is a very good option.  From what I've read on this forum, some patients are lucky enough to be able to watch and wait for years -  that might just be the case with your son.  The important thing is the watching because if the AN grows to a size where it does need to be treated, the doctor(s) will realize it.

Best of luck to your son,

Jan
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: FlyersFan68 on May 08, 2008, 08:55:00 am
I'm sure Dr. Brackman suggested mid-fossa because the possibilities of saving his hearing at this size is very good. He could have the tumor removed for good. Dr. Chang obviously suggested radiation because the hearing preservation rates are great with a tumor this size and the tumor itself could be controlled for many years. Two good options. Since the tumor is small and your son is only 23 it does seem wise to hold off for a while to really think things through. Unfortunately, he may still continue to lose hearing by waiting but he would remain a prime candidate for both mid-fossa and radiation. Some folks make the decision when the hearing keeps getting worse and when the tumors are small. They take action hoping for one final chance to save hearing. There is closure at the same time and people must accept the end result. There are no guarantees with any approach so in a way we all take our chances. There is always the very slight possibility of NF2 for anyone with an acoustic neuroma and even though the tumors usually present themselves together at once there is always that very slight possibility one may grow at a later time. The odds are a bit higher for people in their twenties versus people in their thirties. Each decade the chances drop. Again. it is very rare especially when they are not arising together but it's just another reason (worth mentioning) for waiting and watching at a young age and with a small tumor. Also, I would suggest easing up on the cell phone usage if possible. Good ear and bad. There may be a cell phone connection with acoustics and what's the harm of easing up some as a precaution? My 10 year old son asked for a cell phone the other day and I replied NO WAY! The brain doesn't fuly develop until 12 years of age and it's not even neccesary. I gave up my cell 4 years ago and don't even miss it. A few times a year I may need to carry one so I borrow my wife's.
Remember, these tumors usually grow slowly but will grow. If it was my son I would wait a while and keep a close eye on certain symptomes like ear pain, fullness, vertigo and hearing. Please keep up with the audiograms. April 28th was my 4 year anniversary since surgery. I only respond once in a while since my time and needs have passed. Things will be fine now and later.  8)
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: FlyersFan68 on May 08, 2008, 09:08:04 am
One More Thing....FLYERS  ;)   Penguins  :'(
Title: Re: confusion re fractionalized "stereotactic brain radiosurgery"
Post by: 28 Fracs on July 02, 2008, 05:52:13 pm
I learned something recently from my doctor. 5 treatments or less is considered radiosurgery by insurance companies and bill at a higher rate than >5 fractions, or radiotherapy. 5 or less fractions is also referred to as hypo-frationization, which has the smallest track record (not to say it is bad). My doctor convinced me to avoid '1-shot' radio-surgery (my hearing still servicable) and use conventional radiotherapy (28 fractions). I completed #20 today; so far so good.

I have a 1.5cm left AN.