ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Katrider on March 01, 2007, 04:15:43 pm
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Hello all. Im new here and have been reading & learning. I was recently diagnosed with an "AN". I have consulted with a neurosurgeon group that includes oncologists, radiationoncologists and neurosurgeons all working in concert with one another and I have been impressed so far. The neurosurgeon I have consulted with is recommending along with his colleagues that I be treated with the "Novalis". Does anybody have any experience/comments with this procedure? Thank you......
NOTE: My passion is motorcycles and I ride a Katana, thus the name "Katrider". ;)
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Hi Katrider,
"welcome" to the AN club. If you are considering radiosurgery for the treatment of your AN, the choice of machine and protocol ( FSR vs. one dose) are important considerations. The doctors you have consulted with are probably promoting the Novallis machine because it is what they have in the hospital. Reality is that Novalis is significantly less accurate than GK or CK and is considered a radiotherapy platform instead of a radiosurgery machine for that reason. Accuracy is +/- 2.5 mm whereas GK is a little over 1mm and CK is .89 based on studies.
I'll attach some exchanges between patients and the doctors who volunteer on the Cyberknife support group site
Mark
Posted 1/11/2007 7:49 PM (GMT -8)
Could I get some information regarding the benefits of Novalis vs. Cyberknife for a AN of approx. 1.9 cm. The last doctor I saw touted the benfits of Novalis over Cyberknife, and now I feel a bit confused!
Posted 1/13/2007 7:47 AM (GMT -8)
Novalis is an accelerator based system that achieve accuracy of about 2.5 mm. We don't feel that is accurate enough for critical brain work, although it is often used that way. You have to decide for yourself whether to accept the lower accuracy (compared with 0.89 mm for CyberKnife). In other words, they could either miss 2.5 mm of tumor (13% the diameter of your tumor) or treat 2.5 mm of brainstem, cochlea, or other critical structures.
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Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net
and another
Posted 11/29/2006 9:52 PM (GMT -8)
CK and GK have similar accuracy for intracranial tumors. Ck avoids the use of a frame that must be screwed to the skull for several hours and also allows for fractionated treatment which may be important in some cases. Novalis is less accurate and is not a dedicated radiosurgery machine.
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Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
and finally
Posted 11/29/2006 9:07 AM (GMT -8)
Dr(s) Spunberg and Medberry,
On the CK Society site there is a comparison of various machines and comments are made regarding the pros and cons. Specific to Novallis it is indicated that on a one dose protocol with the head frame that Novallis "approaches but does not meet the accuracy of either GK / CK". I am aware of the Stanford study which shows that CK is equal to slightly more accurate than GK and I know from previous posts that both of you gentlemen feel that the difference is not significant between those two machines. If anything the advantage of CK is the ability to fractionate treatments and avoid the headframe. Can you point me to some studies which support that Novallis is less accurate than the other two for cranial tumors , specifically AN's. beyond that based on your knowledge and experience with these machines can you offer some compelling reasons why you would steer patients away from one machine to the other. While I would assume the Novallis machine is certainly adequate for this treatment, I have always been under the imprssion that either GK or CK would be preferable due to increased accuracy.
Thanks
Mark
Posted 11/29/2006 3:26 PM (GMT -8)
Look no further than the Novalis website. Their own data shows a BEST accuracy of about 2 mm. Depending on the size of the AN, that could be a substantial fraction of the tumor size. In other words, with a 6 mm tumor, you could miss one-third of it with Novalis. Actual accuracy in general use may be worse than 2 mm, since that is the best. Compare that to CK (0.89 mm very repeatable) and GK (probably 1-2 mm total accuracy).
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Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net
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Thank you Mark! I have another consult tomorrow and will take this info with me. I was/am really curious as to why my neurosurgean was/is (in my opinion) strongly steering me towards the "Novalis". Again thank you..........
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Hi Kat and welcome! Mark, as always, shares wonderful info with us (hey Mark! :-* ) and is most certainly on the money when it comes to info re: radiosurgery.
Please keep in mind that many treating facilities have an affiliation (ie: monetary investment, sponsors, etc), so, of course, the dr's are going to recommend protocols based on that or possibly stick to protocols that they are more familar, etc.
The key is doing your own research. As you have been doing, ask any and all questions... get feedback from those that have been in the shoes.... you will hear positive, some not-not-positive outcomes. One thing I stress around here is to be your own best patient advocate. One thing I have learned over the years with my numerous medical issues.... doctors are not Gods. It is up to educate ourselves as best as we can.
Since many of the doctors on the Cyberknife Patient support board volunteer their time and energy to answer our questions (hence, the bias tries to be minimal) and where many of the docs are versed and/or experienced in many of the radio protocols, please do not hesitate to ask them questions either.
Here is the link to the website if you are interested:
http://www.cyberknifesupport.org/forum/
Boy, did they help me (and Mark and so many of the gang!) in helping me make the best decision I could for me and my situation.
Again, welcome!
Phyl
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Thanks Phyl, your right! Today I had a consult with my primary care physician who is the one that caught the AN. He was very helpful in pointing out all options and Im lucky to have found him. I have another consult about the "Novalis" coming up soon, with more questions. I personally like to handle things swiftly and move on, but now Im thinking that maybe I should slow down and regroup. The one question I need to pose that slipped my mind today is approx how long do I have to wait (wait & see) before being put into a position of having to choose an option, i.e, a year, two years, maybe even less???? My tumor is right on the border betwen small and medium. Im young (43) healthy and active but my daily headaches are becoming bothersome. So anyway lot's of questions still. This site has been extremely helpful. ;D
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Have you made a decision? My doctor also recommended the Novalis treatment. I have a 1.87cm tumor. I have not decided between cyberknife and novalis. It seems everyone on this site supports the Cyberknife. Let me know what you decide.
Craig.
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Another question that should be asked is,"Who owns the equipment"? If it is a private group of MD's they are obviously going to "push" it with a vested interest in paying for it. Or, as one doc mentioned when I asked how come Novalis - it's the only one I am familiar with!!
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Hi everybody. To answer your question Sigmund I have decided to move forward with the Novalis. I feel very comfortable with and more importantly trust my doctors. This is what I feel is right for me! I can't honestly say whether the choice is the perect one but it's the one I have made and when it's all said and done thats what matters!
Sheryl, you have a very good point, thanks for the input.
I will continue to post the progress which thus far has consisted of a second MRI. One interesting thing, my insurance company wasnt too happy to approve this again, but the doctors/center I am dealing with take care of all the minute details so that the patient/me can concentrate on the positive. I suppose all medical facilities do this as well. After paying the premiums I have been paying for so long I feel kinda good that Im getting my monies worth out of the insurance company, LOL....
Thanks again for all the support and comment, keep em coming ;D
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I just read this today or would have written earlier. I had treatment using the Novalis. I am not sure that radiation from cyberknife would have had a different outcome.
The Doctors not only zapped the tumor but my balance nerve along with it. I have balance issues and will for the rest of my life, it has gotten better but it has been a long and hard fight. Vertigo hits out of the blue, I have been driving and can't pull over fast enough so I no longer drive on trips or more than about 20 minutes on an interstate, I have been hit with it at work or out in public, it is so bad I can't even crawl. Those bouts have been about 3 to 5 a year and last hours to a full day,after that I feel really crappy for a week or days. When the vertigo hits hard I used to end up in the hospital because of vomiting constantly. Now I take valium, meclizine and scopolomine patch and hopefully sleep it off. Most of the time it is a problem with inbalance not severe vertigo, I can usually work etc but am tired from my brain constantly having to balance my body. The other side of the brain will take over but it will not be the same. Not everyone who has radiation goes through this, I am just unfortunate. I just saw my Doctors at the Mayo August 31 and just as I thought I will and have learned to live with this. It is worth it to fight, and I am proud to be strong enough to say I have and still am. Funny thing-I am still a chicken at times and this will overwhelm me.
Please let me know if you have had this done yet and how you are, I really do care. Deb
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Katrider,
Just read this thread. I actually sought out the novalis machine from an ad in the newspaper I seen. So it wasn't any facility promoting their machine. After I found about 5 facilities that used it,I had consultations with four. I chose MD Anderson. I had 25 treatments. I do have some side effects, lost hearing on my AN side. But I often think if I was that sensitive to lower doses, what could of happened if I went with GK or CK. After all is said and done I would do it over again, because none of the treatments are fool proof.
mema
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I just read this today or would have written earlier. I had treatment using the Novalis. I am not sure that radiation from cyberknife would have had a different outcome.
The Doctors not only zapped the tumor but my balance nerve along with it. I have balance issues and will for the rest of my life, it has gotten better but it has been a long and hard fight. Vertigo hits out of the blue, I have been driving and can't pull over fast enough so I no longer drive on trips or more than about 20 minutes on an interstate, I have been hit with it at work or out in public, it is so bad I can't even crawl. Those bouts have been about 3 to 5 a year and last hours to a full day,after that I feel really crappy for a week or days. When the vertigo hits hard I used to end up in the hospital because of vomiting constantly. Now I take valium, meclizine and scopolomine patch and hopefully sleep it off. Most of the time it is a problem with inbalance not severe vertigo, I can usually work etc but am tired from my brain constantly having to balance my body. The other side of the brain will take over but it will not be the same. Not everyone who has radiation goes through this, I am just unfortunate. I just saw my Doctors at the Mayo August 31 and just as I thought I will and have learned to live with this. It is worth it to fight, and I am proud to be strong enough to say I have and still am. Funny thing-I am still a chicken at times and this will overwhelm me.
Please let me know if you have had this done yet and how you are, I really do care. Deb
I too had linac and have had a very prolonged recovery, much like Deb. If I had known before I had the radiation I would have had GK or CK. Not Novalis. My life has been difficult and was pretty horrible for more than 2 years. I do not say this to scare you but my hearing was perfectly normal before the radiation and I lost almost all of it 4 months later. I too just started driving in April. I still have some rough days because my brain is very tired from all the balance and vertigo issues daily. I walk with a cane. I used to use a walker. But I am learning to make the best of it. I too sought out a second opinion afterwords and was told that I wouldn't get better, I just had to learn to live with all this, it was radiation damage and so I have. I would love to help to prevent everyone from having the same outcome as myself. So I say do the research and if you choose radiation and you have the choice go for gk or ck. Good luck.
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Nikynu,
I just wanted to acknowledge your post back to Deb and that I appreciate the points you made. While not common, it is unfortunate to have ongoing post radiation effects related to radiosurgery. I was going to challenge the assumption that GK and CK would have had similar or worse results, but your perspective , based on your experience is much more meaningful to the discussion.
There have been many posts over the years comparing different machines, but it has certainly been my unscientific observation that there are more occurrences with the radiotherapy machines such as Novalis that do the 25-30 day protocols to compensate for their lower accuracy compared to GK or CK. It is understandable to think that if damage to nearby structures occurred at low doses with one machine that it would be more likely with one that treated fewer times with a higher dose. However, the issue is not dose, it is accuracy, and CK and GK can use a higher dose because their margin of error is less. Damage happens when healthy structures receive too much radiation, not when high doses hit the AN.
The experience of the clinical team is equally important to the type of machine used, and both need to be evaluated carefully in order to minimize the risk, but the issue to me is the accuracy of the machine and treatment plan , not the dose used in the treatment protocol.
Mark
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I am in the process of evaluating radiation options. I had surgery 10 weeks ago at MGH by Dr Barker and he was only able to remove about a third of the tumor because the facial nerve is on the tumor. Dr Barker has recommended FSR at MGH. I am meeting with Dr Loeffler next week at MGH. I have already met with a radiologist at Maine medical Center and has also recommended FSR, 30 treatments. he says the 30 treatments are important so the facial nerve has time to recover between treatments. I do not know what type of machine or it's accuracy. I need to ask. So I know for sure that my facial nerve will receive radiation. I asked him about CH and he said he wishes his hospital had CK machine but he is comfortable that the machine they have is acceptable.
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katrider,
I am THRILLED to say that I had a one time treatment from the Novalis machine near where I live. The oncologists, radiationoncologists and neurosurgeons all working in concert with my treatment also. I also had physicists involved in designing my treatment. I can greatfully say, that after 3.5 months since the one time treatment from the novalis that my 2 cm AN is shrinking and showing necrosis. My "team" was very thrilled that results are so positive. My team has been wonderful to deal with and I cant recommend the Novalis enough. That machine uses a lower dose then the CK or GK and they able to get extremely tight area that just involved the tumor itself for the radiation. I saw the reports and diagrams where the radiation was sent. I have very minor side effects because of the AN but none from the radiation. Mark and i have had this disagreement before but I knew i was making the right decision and I did. Then best part about the treatment I had with the Novalis is that I only had ONE TREATMENT and results are great after a short period of time. ;D
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I'm glad to hear of your positive outcome with the Novalis unit. Way to go! Deb
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Crystallady,
I had FSR on the Novalis 25 treatments. I never heard someone to get just one treatment. How many rads did you get?
mema
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While Novallis as a radiotherapy machine is typically used in FSR applications of around 25-30 days, it has the capability of doing one shot. My understanding is that it would require a GK like head frame instead of the softer mask, but I don't know that for certain. GK and CK would typically have a one dose protocol of around 12 GY and that is based on what level studies show is required to have a biological effect. This is not a machine issue, but a protocol based on treatment effectiveness, so I strongly doubt Crystallady got a significantly different dose with Novalis.
I'm very happy that she had a positive experience with the machine , the team, and with her preliminary results. All of the machines are capable of effectively treating AN's but there are differences in accuracy which influence how the respective teams use them. The reason the vast majority of folks get a 25-30 day protocol is because it has lower accuracy than either CK or GK. The lower per treatment dose over a longer period allows for better outcomes and less risk of damage to healthy tissue. GK ( 1 dose only) and CK ( 1-5 dose for AN) deliver a much higher per treatment dose in less days simply because they are more accurate and can do so with less risk than Novalis. In short, there is a reason it is rare to see a one dose protocol with Novalis. Again, I'm thrilled that her treatment has worked so well for her, but in my opinion, if you treated a 100 patients on a one dose protocol with all three machines there would probably be some outcome differences with Novalis compared to the other two. It's a question of odds and probabilities. I can't remember where we "disagreed" as she referenced on her post, but I'm assuming it is on this issue of accuracy. If so, we will agree to disagree ;). Based on the studies I've read and probably more important, the opinions of radiation oncologists who have used all three, I think the differences in accuracy are documented and are what they are.
Mark
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With the novalis they consider your size and then calculate the amount of radiation they will use. There is a team that woks together using a ct scan and an MRI to exactly match the tumor and zap it without harming area around it. Sometimes that isn't always the case. I was fitted with a halo (4 screws in the head) and then they attach that to a table that you lay on, I had one treatment with 12gy. That is the maximum amount and with the maximum you can never have radiation again. I have learned that FSR has a higher chance of not harming other tissue surrounding the tumor. Mark you are very informed, wish I would have talked to you before having this procedure done :)
Deb
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With the novalis they consider your size and then calculate the amount of radiation they will use. There is a team that woks together using a ct scan and an MRI to exactly match the tumor and zap it without harming area around it. Sometimes that isn't always the case. I was fitted with a halo (4 screws in the head) and then they attach that to a table that you lay on, I had one treatment with 12gy. That is the maximum amount and with the maximum you can never have radiation again. I have learned that FSR has a higher chance of not harming other tissue surrounding the tumor. Mark you are very informed, wish I would have talked to you before having this procedure done :)
Deb
Yes, I agree with you Deb, Mark is very informed. He is a perfect example of the how and why this forum works so well and is a great instrument in requiring the knwoledge that we need to make informed decisions and to seek those who already know the path we are going. IAs I have said many times, I wish I had found this forum before I made my decision. Holly
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I can only speak from my experience. I had CK 1/06 and have had nothing but a good recovery. My treatment center also used MRI and ct in the same way.
I was so lucky. Dr Medbery does GK and CK and so does my neurosurgeon and she is a surgeon. I had my choice because I didn't have hearing to save. GK, CK or if CK I dose or three. I chose three because the tumor was pressing on my facial nerve. I was just given the stats and told any treatment was an option for me.
Tinnitus better, balance better, no facial numbness. Hearing did not return and I didn't expect it would. I do everything I did before treatment and more. I am a type A personality that has to know everything before I can commit to anything. I was so sick of going to doctors that I didn't trust any of them. Forget the doctor hype and pep talk. If they took it out with the kitchen tongs they would say it is the best way to go. Talk to the people who have had treatment, see them in person. Things are not always as they seem. The eyes don't lie. I seldom think of the tumor and have gone on with my life. I only have one regret and that is that I wasted so much time thinking surgery was the way to go.
Blessings,
Sandy
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Mema,
I have an appointment with my oncologist and neurosurgeon next month and I will ask how much radiation I got and would I be able to have it again if needed. I somehow remember 8 gy but I will confirm. I have had no symptoms from the Novalis. They do use this machine with cancer patients and they get multiple treatments but they found radio surgery (1 treatment) to be very effective with non cancerous tumors. My neurosurgeon worked with all 3 machines and was at Brigham and Women's Hospital in Boston. He said he liked the Novalis the best because of more precise effective treatment with a single treatment and a lower dose of radiation. There is a head frame with 4 screws involved and it wasnt as bad as i expected it to be getting it put on. Walked around all day with it on.
Anyway, I wouldnt discourage anyone from the Novalis. As with everything, you want experienced doctors treating you.
Cindy
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I just wanted to add that I had my follow up with my oncologist who designed my treatment and i had received 12 gy and as for having not being able to have radiation again.. never heard of such a thing. I am still greatful for the one treatment I got with the Novalis. My doctor said that the studies that are out are old and found the single treatment to just as effective or better than multiple treatments.
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Crystallady,
I'm sorry I didn't clarify myself. As far as never having radiation again I meant that I will never be able to have it on my right sided AN again, according to the Doctors at the Mayo 12 gy is the maximum. As far as another area in my brain I am not sure of as well as any other part in my body I am not sure either.
I am very glad that you had such a positive outcome using the Novalis. Take care
Deb
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Crystallady - we also consulted at Brigham and Women's and were very impressed with Novalis and the team there for my husband's meningioma (another type of benign brain tumor) regrowth after surgery in 2004. Problem was that they outlined a program of four to five weeks, five days a week and coming from Cape Cod in the middle of the summer that trip would be impossible and living with relatives was not too enticing. We ended up at the Beth Israel CyberKnife and they decided one application would be sufficient which was done on 10/1/07 - keeping our fingers and toes crossing for at least no tumor growth at MRI followup end of January.
Sheryl
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CIndy, congrats that things went so well. I know Dr. Ramankrishna at B/W is top of the line and certainly knows he stuff there... great hands to be in... I'm glad to hear that all has worked out and send wishes for wellness to you.
Sheryl, well, my dear... please give that handsome spouse a huggle and smoochie from me.. and tell him we continue to send "Beanie toot's" southbound to help with the healing process! BTW, send up some warmth, will ya? I'm tired of shoveling snow and ice.
Be well, all!
Phyl
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Hey Phyl - shouldn't "Beanie Toots" help melt the ice and snow??? Just returned from two days of fun at Disney and Epcot and thought of your cheeky bloke while in the "England" pavillion.
Stay Warm,
"The Snowbirds"
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Hey Phyl - shouldn't "Beanie Toots" help melt the ice and snow??? Just returned from two days of fun at Disney and Epcot and thought of your cheeky bloke while in the "England" pavillion.
Stay Warm,
"The Snowbirds"
2 feet of white crap on the ground and trust me, Beanie toots are not melting it at all!!! Will relay the message to the bloke! Trying to teach him to speak with a propa' Bawsten accent! :) Happy holidays, you love birds! :) Phyl
Sorry for the hijack, return you to your regularly schedule Novalis post!
Phyl