Author Topic: Cyberknife Forum Controversy  (Read 11902 times)

sunfish

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Cyberknife Forum Controversy
« on: October 31, 2011, 11:20:42 am »
I got an email today from "radsrus" or Dr. Clinton Medbery from the Cyberknife forum.  I 'm sure many of you received this message as well.  He's parting ways with that forum, as a result of a conflict he has with Accuray regarding some information that sounds like the company would rather not have shared? He felt Accuray was putting their profits ahead of scientific progress in the area of radiosurgery?

No reason to believe this information has anything to do with AN CK treatment (on the other hand, no info to indicate it's not related).  But I'd sure like to know what information he's referring to in the email, and what the situation is.  If any of you all have heard more about this topic, let me/us know.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

leapyrtwins

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Re: Cyberknife Forum Controversy
« Reply #1 on: October 31, 2011, 02:01:23 pm »
Interesting.  Both Dr. Medbery and Accuray have excellent reputations.

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

ppearl214

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Re: Cyberknife Forum Controversy
« Reply #2 on: November 01, 2011, 04:20:51 am »
Hi all

I spoke to Dr Medbery on the phone last night to try to get a feel for the new site he noted in his emails and noted on the cyberknife.com forum.  Dr Medbery is the Chairman of the Radiosurgery Society (formerly the Cyberknife Society) which includes radiation-treating physicians from all over that perform all forms of radiation, thus, providing a wide spectrum of radio treatments for AN's that have been discussed on the cyberknife.com forums (as well as on these forums)n and that will also continue be discussed on the RS forums, which can be found at:

http://patientforum.cksociety.org/

They are working out the issues on the forums (ah, just like we have had here and on the CK forums when changes were made) so they appreciate while you bear with them during this process.

I also spoke to someone at Accuray (the manufacturer of CK) and they are extremely appreciative of all the time and energy and efforts that Dr. Medbery has provided over the many years to the CK forums. At this time, they are in the process of trying to fill the void that Dr. Medbery has left on the CK forums thus, questions posted on their forums may go unanswered for a while until they confirm someone (a dr) to volunteer.

Suggestion at this time is for those seeking info regarding radiation discussions to help those with the decision-making process, please find Dr. Medbery at the link I provided above.  He is still a staunch supporter of CK, GK and other forms of radiation in the treatment of AN's and as usual, will be providing his unbiased thoughts to your questions.

Yes, he excellent reputation is still available to us. :)

Phyl

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

producer

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Re: Cyberknife Forum Controversy
« Reply #3 on: November 01, 2011, 08:53:11 am »
Hi Phyl. 

What is this information that Accuray has restricted access to?  Dr Medberry states that this information would allow better treatment of Cyberknife users.

This is the an important question to be answered  I think?



cheers

chris
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

PaulW

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Re: Cyberknife Forum Controversy
« Reply #4 on: November 03, 2011, 01:25:35 pm »
Hi all,
Please remember that this is a public forum and that you are legally responsible for anything that you post.

The following information is publically available.

The Cyberknife Society held a meeting in Turkey recently.
See Agenda below, note the number of speakers and their topics.

Compare the number of presentations at the conference, versus the number of PUBLIC presentations.

The Cyberknife Society has become the Radiosurgery Society.
 
I allow you to draw your own conclusions.


http://www.cyberknife.com/Forum.aspx?g=posts&t=4534#jumptobottom
As we made clear yesterday, we at Accuray are
unequivocally committed to providing information to patients and
physicians.  To clear up any confusion about the papers presented at the
 recent meeting of CyberKnife clinicians in Istanbul, we wanted to share
 a link to all the public presentations from the meeting.
http://www.box.net/shared/16739an2o0zt8yo4ajfe   


 

European CyberKnife Clinical Symposium 2011
AGENDA
 

9:00 – 9:15           Welcome
Metin Çakmakçı, M.D., Kayıhan Engin, M.D., Anadolu Medical Center, Turkey
 

9:15 – 9:30           Welcome from Accuray
Omar Dawood, M.D., MPH, SVP Medical Affairs
9:30 – 9:45           CyberKnife Clinical Symposium Overview
Alexander Muacevic, M.D., European CyberKnife Center, Munich, Germany
 

GASTROINTESTINAL
 

09:45 – 09:55      Adrenal Gland Metastases
Kayıhan Engin, M.D., Anadolu Medical Center, Turkey               
09:55 – 10:05      Liver Metastases
Kayıhan Engin, M.D., Anadolu Medical Center, Turkey
10:05 – 10:35      General Discussion
 

10:35 – 10:50       Coffee Break
 

THORACIC & CENTRAL NERVOUS SYSTEM
 

10:50 – 11:00      Central Lung Tumors
Philippe A. Coucke, M.D., Ph.D., CHU Liege, Belgium
11:00 – 11:10     Acoustic Neuromas         
Berndt Wowra, M.D., European CyberKnife Center Munich, Germany
11:10 – 11:20     Trigeminal Neuralgia           
                                Giancarlo Beltramo, M.D., CDI, Italy
11:20 – 11:30      Radiosurgery for Gliomas:  is there evidence?
Maximilian Ruge, M.D., Ph.D., University of Cologne, Germany
11:30 – 11:40     MRI Based Treatment Planning for AVM SRS without Stereotactic Angiography
Alexander Muacevic, M.D., European CyberKnife Center Munich, Germany
11:40 – 11:50     Intramedullary Lesions
Markus Kufeld, M.D., Charite University of Berlin, Germany
11:50 – 12:20     General Discussion
 

12:20 – 14:00      Lunch
 

BREAST, GENITOURINARY, HEAD & NECK
 

14:00 – 14:10      Recurrent Prostate Cancer after External Beam Radiotherapy
Giancarlo Beltramo, M.D., CDI, Italy               
14:10 – 14:20      Single session SRS for selected prostate cancer – protocol suggestion
Volker Budach, M.D., Ph.D., Charite University of Berlin, Germany
                14:20 – 14:30      Topic and Speaker to be Announced
14:30 – 14:40      ENT SRS Protocols
                                Eric Lartigau, M.D., Ph.D., Centre Oscar Lambret, France
14:40 – 15:10      General Discussion             
15:10 – 15:50      A proposal for a European registry on CyberKnife treatment for lung cancer:  aiming at defining OS, DFS, LC, QoL and cost - Philippe Coucke, M.D., Ph.D.
15:50 – 16:00      Final Comments - Alexander Muacevic, M.D., Kayıhan Engin, M.D.
   


10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Sheryl

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Re: Cyberknife Forum Controversy
« Reply #5 on: November 04, 2011, 08:11:51 am »
 :o  Wonder what will happen with my Accuray stock!!!!
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

JLR

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Re: Cyberknife Forum Controversy
« Reply #6 on: November 04, 2011, 03:06:55 pm »
 ??? Draw what conclusions. My main concern is my (& the rest of this forums) Acoustic Neuroma.  Are they saying that CK is not a reliable source of radiation to stop that growth.  I read over the agenda and contents and there was no mention of AN's. I wish Dr.M had been more forthcoming before throwing in the towel - with no disrespect to him.

ppearl214

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Re: Cyberknife Forum Controversy
« Reply #7 on: November 05, 2011, 04:55:17 am »
Hi all

No, Accuray is still doing fine and Sheryl, your stock should be fine :)  Dr Medbery and the other doctors affiliated with the Radiosurgery Society are still staunch supporters of CK as well as GK and other forms of radio for the treatments of AN's.  They are not blowing off the use of CK for the treatments of AN's (per my verbal discussion with Dr Medbery the other night) and still offer/use it for treatments of AN's (as well as other ailments ie: prostate cancer, etc).  The Radiosurgery Society (yes, formerly the Cyberknife Society) is so renamed to encompass the full array (sorry for the pun) for all types of radio treatments for all types of ailments.

The issue pertains to work that was done by the RS and the handling of it being published.... whether by RS or Accuray.  This is an internal issue between the 2 organizations and has NO impact regarding the use of CK on AN's or if any of the RS doctors have stopped using or lost faith in CK... they have NOT!  This has to do with publishing papers only, not the use of CK.

Hope that helps and puts and end to this.

Anyone that has further questions regarding this can PM/email me here.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

PaulW

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Re: Cyberknife Forum Controversy
« Reply #8 on: November 05, 2011, 01:46:11 pm »
Very well said Phyl
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

ppearl214

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Re: Cyberknife Forum Controversy
« Reply #9 on: November 05, 2011, 02:07:57 pm »
Very well said Phyl

Merci beaucoup! :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

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Re: Cyberknife Forum Controversy
« Reply #10 on: November 05, 2011, 02:15:06 pm »
I read over the agenda and contents and there was no mention of AN's.

Pls reread the agenda.  see below:
THORACIC & CENTRAL NERVOUS SYSTEM
 

10:50 – 11:00      Central Lung Tumors
Philippe A. Coucke, M.D., Ph.D., CHU Liege, Belgium
11:00 – 11:10     Acoustic Neuromas         
Berndt Wowra, M.D., European CyberKnife Center Munich, Germany


Again, this is not a direct issue with Dr Medbery not being forthright.... this is regarding who (RS or Accuray) doing the publications of works performed by the RS.  This is solely a "business" issue and I can confirm, through my verbal discussions with Dr. Medbery and with someone at Accuray, that this does not impact personal relationship between them... again, a business decision that was made.

I have not lost faith in CK as an extremely viable option in the treatments of AN's as I am walking testament to it.... I am 5-1/2 yrs post treat and doing fine. Many AN'ers treated with CK for their AN's can also attest to the same.  Again, this has nothing to do with CK as a choice for treatment on AN's.

Ok, had my left over halloween candy, in a sugar rush and spoke.  :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

JLR

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Re: Cyberknife Forum Controversy
« Reply #11 on: November 05, 2011, 08:33:17 pm »
Thanks Phyl for clearing this all up.  CK is doing amazing things these days..its going to be a real breakthrough for breast cancer. Thanks again.

ppearl214

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Re: Cyberknife Forum Controversy
« Reply #12 on: November 06, 2011, 06:20:19 am »
Thanks Phyl for clearing this all up.  CK is doing amazing things these days..its going to be a real breakthrough for breast cancer. Thanks again.

Agreed.  As well as for skull issues (AVM's, ANs, Trigem Neuralgia, etc) as well as Prostate and lung.  Agreed.  I'm not going to sit here and tout and sound all marketing as I also know some that didn't have the results that they hoped by having CK done on their AN's, but for the majority... the overall success rates, can't be denied either.

Ok, I'm done. Need more coffee. Time change killed me.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

carter

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Re: Cyberknife Forum Controversy
« Reply #13 on: December 15, 2011, 04:05:07 pm »
Approx 1 week ago, I posted on the Radiosurgery Society Website and no one has responded.  The forum appears to have no new posts?????  Does anyone know the status of the information source that Dr M once provided?
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

mindyandy

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Re: Cyberknife Forum Controversy
« Reply #14 on: December 15, 2011, 06:10:22 pm »
http://patientforum.cksociety.org/
Dr. M is at this forum.  He's answered my questions. Try emailing him.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012