Author Topic: Novalis or CK  (Read 4388 times)

Linda T.

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Novalis or CK
« on: October 21, 2007, 08:56:23 am »
I was recently diagnosed with a 1.9cm. I have seen 2 ENT's that of course recommend surgery. Nothing about surgery sounds good. I have an appt. to consult about the Novalis and CK in Indy, IN. next month. I think this is a better option for me but with all I have read I think the CK sounds more accurate. I am very confused and wonder if anyone has any advise.

Patch

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Re: Novalis or CK
« Reply #1 on: October 21, 2007, 03:09:27 pm »
    HI AND WELCOME TO THE GROUP, YOUR AN IS NOT TO LARGE AND YOU STILL HAVE TIME TO CHECK OUT YOUR OPTIONS. I WAS REFERED BY MY SURGEON TO LOOK AT RADIATION. MY AN WAS 1.2 CM AT TIME OF TREATMENTS. I HAD THEM IN JULY AND IN DECEMBER WILL HAVE A FOLLOW UP MRI AND HOPE ALL IS WELL. YOU WILL FIND ALOT OF INFORMATION HERE AND STORIES. I HOPE ALL COMES OUIT WELL FOR YOU.

MARK
Radiation 7/07 for 17mm AN, Had my 2 year MRI 07/09, An now 13mm.

Linda T.

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Re: Novalis or CK
« Reply #2 on: October 21, 2007, 03:33:49 pm »
Hi Mark, what kind of radiation did you have? Did you have more than one treatment and did you have any effects after?
Thanks for any info you want to share.

ceeceek

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Re: Novalis or CK
« Reply #3 on: October 21, 2007, 07:55:35 pm »
Hey There and unfortunately welcome to our group..you will find a wealth of info under this link on the two types of radiosurgery and cyberknifesupport.org is a great source...it is sponsered technically by CK..however the Drs all volunteer and are well versed in variuosu types of radiation and surgery both...I found it most helpful. Each has its advantages vs disadvanages..I just completed CK three days ago..so far so good..I chose CK vs novalis due to convenience and accuracy.
Ceecee
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

sgerrard

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Re: Novalis or CK
« Reply #4 on: October 21, 2007, 10:58:51 pm »
In a word? CK. I'm biased, because that is what I chose. But I think you stated it quite well: nothing about surgery sounds good (my feelings exactly); the CK sounds more accurate than Novalis (the technical information supports that).

I agree with Ceecee, look into the cyberknife support group, they have several doctors who answer questions directly on the forum, and two that can be contacted by email as well. The forum is at  http://www.cyberknifesupport.org/forum/, and information on the doctors there is at http://www.cyberknifesupport.org/about_the_doctors.html. Dr. Chang answered several of my email questions, usually on weekends, in fact.

It is certainly worth getting some good opinions on radiation, as well as on surgery, before you make your decision.

Steve
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: Novalis or CK
« Reply #5 on: October 22, 2007, 11:52:26 pm »
 I wanted to modify one point in Ceecee's post

cyberknifesupport.org is a great source...it is sponsored technically by CK..however the Drs all volunteer and are well versed in variuosu types of radiation and surgery both

The Cyberknife support web site was developed and supported by the patient support group with some assistance from Accuray. However, there are discussions under way to transfer it over to Accuray officially as it has become too big (close to 400,000 "hits' per month) and is beyond the financial and technical ability of the support group to maintain it going forward. It should be transparent other than some changes in functionality and members of the support group including yours truly will be added as directors to insure the patient focus. So, her description is accurate in terms of Accuray's future relationship to that site, but it is still totally managed by the support group today . FWIW

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

crystallady

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Re: Novalis or CK
« Reply #6 on: October 23, 2007, 07:38:46 pm »
Linda,

I had Novalis and it was very accurate and only had one treatment. The ONE treatment is call radio surgery versus radation therapy which cancer patients get.   After 3.5 months there was some shrinkage and the tumor was dying.  I have had no symptoms other than the normal fatigue right after the treatment.  I saw the picture of where the radiation was going and it wasnt anywhere near any other part of the brain.  I am partail to the Novalis because of the great results with one treatment.  The Novalis is a shaped beam radation which means they can get better coverage of the tumor with less hotspots that you get with the CK and GK.  Both the CK and GK have round beams that have to over lap so you get more radiation in those overlapping hot spots.  My neurosurgeon has worked with both the CK and GK and said that he prefers the Novalis because you can get a more precise treatment with less radiation.   I wish you luck on your research.  I just wanted to add my opinion and experience to have give you more information.  I also did alot of research and was more comfortable with the Novalis. 

Linda T.

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Re: Novalis or CK
« Reply #7 on: October 24, 2007, 07:32:09 pm »
Crystallady

I am going for a consult tomorrow on the Novalis. I do like the idea of only one treatment but everything I have read says the accuracy rate is only 2 to 3 mm, compared to the CK at .5mm. I will keep you posted on what the Dr. says. Also glad to hear your only post-op trouble was fatigue. Sounds good.

Linda

Mark

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Re: Novalis or CK
« Reply #8 on: October 24, 2007, 11:08:36 pm »
Linda,

I think any of the machines currently on the market can be reasonably effective on treating AN's. That being said, it is also a natural tendency for everyone to feel they either used the "best" machine or had surgery with the "best" doctor. In the world of radiation treatments there are only two machines that are designed for a radiosurgical application which are CK and GK. This means they are capable of high accuracy, high dose treatments in single (GK) or multiple fractions (CK). The positioning is done either with an invasive headframe (GK) or without through active targeting (CK). GK is limited to intercranial tumors while CK is capable of delivering radiosurgical precision to tumors elsewhere in the body. Triology and Novalis are radiotherapy machines which are very effective in a variety of applications throughout the body and can approach, but not equal the accuracy of radiosurgical machines.

Accuracy of these machines needs to be understood and measured in the same ways. There is machine error, frame error, Scan error, etc that roll up into "total error" which is the only meaningful number in my mind. CK has been shown in peer reviewed clinical studies to have a total error of around .89 mm. GK is shown in studies in the range of 1.2-1.5 MM and Novalis and Trilogy are in the 2 mm range. When statistics are quoted less than that they are generally only showing  one component, usually machine error.

The other issue crystallady's neurosurgeon raised was the ability to dose the tumor in a uniform manner, but the claim that Novalis does it better just because of the shape of the collinator is just plain wrong. it errantly dismisses the accuracy factor and in the case of CK does not address the technology that allows the beams to be shot from more angles than the other three machines which are fixed beam.

In terms of her neurosurgeon's preference of Novalis to GK or CK, that would be meaningful to me if he/she had access to all three and still opted for the Novalis. My guess is that is not the case, and unfortunately most docs in today's world won't tell a patient "I really prefer brand X, and we only have brand Y here so I think you should go down the street to be treated. I'm not picking on Novalis as the statement applies to any doc making such a statement about any of the machines.

I think you can have an effective treatment with any of the machines in the hands of an experienced team, but it does bother me when folks post "absolute" statements about a machine without providing something other than their particular Docs opinion. However, since that tends to be the norm  ::), I posted Crystallady's post over on the CK board and here are Dr. Medbery's comments, take them for what they're worth   ;)

Good Luck in your decision making

Mark

First, single treatment very likely increases the risk of hearing loss. That is exactly why we always treat AN patients who still ahve hearing on the CK, although we also have GK available.

Second, I would bet the neurosurgeon either does not have access to CK or GK at this time, or has an econnomic interest in the Novalis. I have never met a neurosurgeon who would prefer Novalis to either CK or GK.

Third, although the CK used round collimators, it does not simply overlap round spots. It uses non-isocentric treatment that "paints" the dose throughout the tumor. I am quite confident that Novalis cannot get better homogeneity. Either the neurosurgeon does not really understand the technology or was being disingenuous.

FOurth, it is not certain whether hot spots in the tumor are bad or good. An extended discussion of this concept is beyond the purview of this board, but please accept that there is debate that is unresolved.

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

JLang

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Re: Novalis or CK
« Reply #9 on: November 13, 2007, 09:55:03 pm »
I had the Novalis Machine for my treatment in September, pretty space age stuff actually, worse part was the halo they have you wear, Eyes swollen and head ache for a few days after the treatment, I have a little hearing left in my AN ear and the ringing noise tinnitus can be loud at times or less loud. My balance was a little off after the treatment but improving now, recommend good shoes that supports ankles seemed to help me, Ill do a follow up MRI in a few months,

JL
1cm-AN diagnosed June-07

Novalis Nov- 07

rjbarker

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Re: Novalis or CK
« Reply #10 on: November 18, 2007, 11:29:43 am »
Hi,
   I had Gamma Knife back in 1991 and you should understand I am still a fan of single-session treatment by this dedicated machine. GK has the longest record of experience and success. I think the newer Novalis and CyberKnife are acceptable treatments. The reports we have had are all good. What still bothers me is the fractionation (multiple sessions) of the treatment, which seems unnecessary and more prone to errors with the frequent facemask removals and repositionings. I'm not convinced that hearing preservation is that much improved by fractionation. I think it's important to be treated by a center having a team with a lot of experience. Good luck to you.

d***


Linda T.

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Re: Novalis or CK
« Reply #11 on: November 18, 2007, 09:49:29 pm »
Thank you all  for your input. I have decided to have the CK. After consulting with a Novalis and a CK dr. and listening to both I have to go with the CK. Much more accurate, and the facemask sounds better instead of having bolts screwed into my head. The Novalis would have been 1 treatment and the CK will be 3. I had a neurosurgeon friend tell me if it were him he would have the CK, so that's a pretty good opinion for me.

I would be interested to hear what post-op symptoms anyone has had. Only thing Dr. told me might happen would be headaches, fatigue about 2 wks. later that could last up to 2 wks.

sgerrard

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Re: Novalis or CK
« Reply #12 on: November 21, 2007, 07:56:24 pm »
Hi Linda,

I didn't have any specific period of fatigue, or any thing particular at 2 weeks or 4 weeks. I do have a bit of up and down with the pressure 'n' fullness feeling, sometimes with a vague ache at the end of the day. The frequent effect of radiation is swelling of the AN, which can be spread out over several months or more. I think it usually stops by the six month point.

Thanks for the comment from the neurosurgeon, by the way, it seems like doctors often have inside info that they will apply to themselves, even if they aren't telling it to their patients officially, so it is good to hear.

Steve
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.