Author Topic: confusion re fractionalized "stereotactic brain radiosurgery"  (Read 19050 times)

Philip

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #15 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/.

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

Philip



Right sided AN approximately 15mm.
Diagnosed in 2001, static since.
Wait & watch, hopefully forever.

ppearl214

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #16 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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Philip

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #17 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
Right sided AN approximately 15mm.
Diagnosed in 2001, static since.
Wait & watch, hopefully forever.

ppearl214

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #18 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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Philip

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #19 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
Right sided AN approximately 15mm.
Diagnosed in 2001, static since.
Wait & watch, hopefully forever.

Kate B

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #20 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
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

sgerrard

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #21 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.
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Mark

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #22 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
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Philip

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #23 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/ 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 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 page.  But if you feel there is more to say based on more recent information your contribution would be welcome.

Cheers
Philip

Right sided AN approximately 15mm.
Diagnosed in 2001, static since.
Wait & watch, hopefully forever.

ppearl214

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #24 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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Philip

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #25 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/.  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

Right sided AN approximately 15mm.
Diagnosed in 2001, static since.
Wait & watch, hopefully forever.

jb

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #26 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/.  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.
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

Philip

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #27 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.  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
Right sided AN approximately 15mm.
Diagnosed in 2001, static since.
Wait & watch, hopefully forever.

leapyrtwins

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #28 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
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Philip

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Re: confusion re fractionalized "stereotactic brain radiosurgery"
« Reply #29 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 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/.  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
Right sided AN approximately 15mm.
Diagnosed in 2001, static since.
Wait & watch, hopefully forever.

 


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