Author Topic: CK or LINAC  (Read 7126 times)

debgit

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CK or LINAC
« on: June 25, 2007, 02:01:02 pm »
I've pretty much decided that I am going to ZAP my little friend - now the choice is with what? I have visited a CK center in West Palm Beach, and I'm going up to Shands in Gainesville, Fl. to meet with doctors about LINAC. Has anyone out there done LINAC? Heard anything? Have a thought? Let me know, I thought the radiation decisions was going to be difficult - but it seems like this is more confusing!!!! Thanks, Debbie

Craig

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Re: CK or LINAC
« Reply #1 on: June 26, 2007, 09:21:56 am »
Debbie,

I think that you are making the right decision in getting your little friend zapped. Making your decision is the hardest part whether it is CK, GK or Linac based systems but once you make your decision, it is a huge relief. I chose to use the Varian Trilogy machine.  I am two months from my treatments and doing fine.

One thing that you have to remember is that these doctors will push their machine on you because it is what they have to offer. Of course, they will say that there machine is the best. I recommend meeting with two or three docs who offer different treatments. Once you have all the data, it is time to hit the internet and search what makes you feel comfortable. Good luck in your decision.


Craig
1.78 CM AN / Vanderbilt Medical Center Trilogy System / 4 Radiation Treatments / 24gy total

Derek

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Re: CK or LINAC
« Reply #2 on: June 26, 2007, 11:55:07 am »
I've pretty much decided that I am going to ZAP my little friend - now the choice is with what? I have visited a CK center in West Palm Beach, and I'm going up to Shands in Gainesville, Fl. to meet with doctors about LINAC. Has anyone out there done LINAC? Heard anything? Have a thought? Let me know, I thought the radiation decisions was going to be difficult - but it seems like this is more confusing!!!! Thanks, Debbie


Hi Debbie...

If you access the new 'Watch and Wait' forum and click onto the thread headed 'Re: When is it the right time to continue to watch / wait'..... there is an excellent post by 'Nikynu' who graphically outlines the multiple complications that she has experienced as a result of opting for the Linac system and which you may find useful  in furtherance of deciding upon your ultimate treatment option.

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

linnilue

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Re: CK or LINAC
« Reply #3 on: June 27, 2007, 08:10:11 pm »
I've pretty much decided that I am going to ZAP my little friend - now the choice is with what? I have visited a CK center in West Palm Beach, and I'm going up to Shands in Gainesville, Fl. to meet with doctors about LINAC. Has anyone out there done LINAC? Heard anything? Have a thought? Let me know, I thought the radiation decisions was going to be difficult - but it seems like this is more confusing!!!! Thanks, Debbie


Hi Debbie...

If you access the new 'Watch and Wait' forum and click onto the thread headed 'Re: When is it the right time to continue to watch / wait'..... there is an excellent post by 'Nikynu' who graphically outlines the multiple complications that she has experienced as a result of opting for the Linac system and which you may find useful  in furtherance of deciding upon your ultimate treatment option.

Regards

Derek
  Thanks Derek for remembering my post.  It is essential to all of us to realize that not all results are the same.  Thank you for recognizing that.  Anyway to Debbie, If it were my choice, it would be GK, no question.  It definitely has the best results along with CK.  GK and cK render much more accurate results than linac machines and this is a fact.  That being said, not all linac patients end up like me either.  This is just a precautionary note so that you can make the decsion that is best for you.  I want to also reiterate that I love my radiooncilogist but very much dislike the neurosurgeon that I had because he never took responsibility for his actions.  But my radiooncolgist tried to help me every step along the way but he had never encounterd any patient with the por outcome that I had.  we'll see how things are soon.  I am 2 1/2 years post linac and my next MRI appt. is in a couple of weeks, then I see the radiooncologist and then I see my new surgeon in Boston whom I love.  What happened to me, however rare is very real.  My case was actually presented at Harvard during a grand rounds.  I wish you well and feel free to ask me any question through email if you'd like.  My Best, Holly   
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

ceeceek

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Re: CK or LINAC
« Reply #4 on: June 29, 2007, 02:16:56 pm »
Hey there..was wondering how you were doing....
I see Dr Spunberg this coming week. to schedule my CK treatment follow up after surgery...
I chose the CK system verses Gk primarily due to the lack of head frame with the CK, and it has the advantage of fractionated treatments in the hopes of preserving the surrounding nerves...which are already aggrevated from surgery. My surgeon, Dr Fields uses GK but was perfectly happy with the CK system as well,,,,his center just already has a GK system....so I was actually suprised that he was perfectly happy with me going to Dr Spunberg,,,but he also agreed that either system would be just as effective and then I would not have to have more holes placed in my head....I am suprised my brains arent falling out already........
It may seem like a small thing, but I had a lot of problems with where and how they placed just the head frames for surgery and really dont want to have a system that pokes into my head even further than those did...and why not have fractionated if available to boot....
Plus, one could absolutely not find a nicer more caring and concerned Dr than Spunberg..that man has litterally held my hand from day one...even though I sought out different opinions, had surgery, live on the other coast etc....he even gave me his cell phone number if I felt I needed help in any way..so that has something to do with it also.
As far as Lineac,,,,it is not as effective...period. So if you were to make a choice between GK and CK...it should depend upon the size of your growth.....where it is located,,,,if you have hearing etc now or not.....
You take a chance on losing it either way, but with CK you have a better chance of preservation.
With GK, it is one day and done with verses several treatments, less chance of preservation.
Good luck.
Ceeceek
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.

NF-2er

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Re: CK or LINAC
« Reply #5 on: June 29, 2007, 06:35:35 pm »
Hi;

   It's just personal preference.
   I prefer CK over Linac because of the lenghty protocol of Linac.
   Also; I've read intial 'hit' is important, so CK would have a larger # of gy, initial hit.
   Best wishes in a choice which feels right for you.

   NF-2er

debgit

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Re: CK or LINAC
« Reply #6 on: July 03, 2007, 01:36:45 pm »
Hi all! See - this is where things get confusing. My research has told me that fractionated radiation is NOT better than a one time Gamma or Linac, caused there is more opportunity to involve other cells. I have read that it is important to have the radiosurgery at a "center of excellence" where they publish, and follow up on the treatments - up at Shands, where they do Linac, Dr. Friedman has had very positive results in the 20 years that he has been doing treatments. He told me that the machines are not very different, but the doctors doing the surgery are! See why I am so confused?????????? Has anyone heard of the Miami Neuroscience Center at Doctor's Hospital in Coral Gables, Fl. They do gamma, and I think I will pay them a visit as well. Then I will have covered all the ZAPPER possibilities! I will say that I am leaning towards Shands at this moment (moments change regularly!) although I am interested in learning more about Gamma since it has been around longer...... Always interested in your opinions  - I learn so much!!!! Hope you are all doing well - are there any post surgery difficulties I should know about?????? Thank alll, Debbie

Mark

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Re: CK or LINAC
« Reply #7 on: July 03, 2007, 04:21:14 pm »
Debbie,

Yes, it can be very confusing when one starts looking at the different treatment and machine options involved in radiosurgery. I'm not familiar with the Miami Neuroscience Center and no one in this forum has ever referenced it before so I can't help you there, but I'll offer a couple of thoughts on your other questions which may or may not help with your confusion  ;D

1) Fractionated vs. One dose - The theory with doing the treatment in fractions is that it is less toxic on the healthy tissue by giving it time to recover between treatments as opposed to the abnormal DNA of the tumor which is unable to do so.There is not long term studies on FSR results as opposed to the one dose, but the preliminary studies that are typically in the 5-7 year range do show improved hearing and facial nerve preservation results compared to one dose with comparable tumor control. So either protocol choice is reasonable with perhaps slightly better preservation odds with FSR.

2) I would agree with Dr. Friedman that experience of the team counts, but less so than in surgery when one considers that treatment plans are generated by highly sophisticated computer software and reviewed separately by the neurosurgeon, radiation oncologist and physcists. On the other hand surgery involves two docs in real time and you hope they have a good day  ;). Published articles are nice and generally reflect a lot of experience, but also are associated with teaching medical centers, so someone like Friedman ( Shands - U of FL) or Chang or Jackler, who I'm familiar with at Stanford, will generate a lot of articles because of the culture of their institution. One can find equivalent treatment experience without articles.

3) GK has been around longer , so by definition has longer term studies. However, all the machines have the same biological approach to killing the tumor. I've never understood the argument some folks make that GK is somehow more proven that the newer technology machines which employ the same approach. Kind of an extreme analogy, but its like saying I'd rather drive the 1990 Buick because I'm just not sure the 2006 BMW has been out long enough  ;)

4) While I agree with Dr. Friedman that any of the machines on the market today are adequate to treat an AN, I would not share his perspective that they are all the same. Only two ( GK and CK) are true radiosurgery machines and have the highest level of accuracy. Accuracy really has two elements which most folks don't think about. The common interpretation is that less accurate machines allow more adjacent healthy tissue to receive part of the dose which is true. Equally important is whether the beam is precise enough to conform to the AN shape which is almost always irregular. Machines that can't do that will over dose some areas ( hot spots) and potentially under dose others ( cold spots). The LINAC radiotherapy machines typically are in this category which is why they do such small doses over so many fractions ( 25-30). While I have never seen any studies one way or the other on these machines, I think one of my personal concerns is the ability to exactly replicate the head / mask position 25-30 times vs. , say 3.

So, my personal opinion, and it is only that, would be

1) Choose a team with a lot of AN experience
2) Choose a radiosurgery machine, either CK or GK
3) If you believe fractionating the treatment improves hearing preservation, then you pick CK ( typically 3) because GK isn't used that way usually
4) if you're more comfortable with a one dose approach, either GK or CK are essentially equal in accuracy and your choice is whether the head frame with GK bothers you or not. There are obviously a lot of folks here who have had GK and some thought it was no big deal while others had discomfort with it. From my perspective, if the GK headframe provided some enhanced performance over what CK does without it, then it might be worth it, but it doesn't , so why go through it. However, I think the issues in points 2, 3 and 4 are all secondary to number 1. Either CK or GK have been proven to work well and comfort and trust in your docs should be the tipping point.

Hope that helps

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

ceeceek

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Re: CK or LINAC
« Reply #8 on: July 03, 2007, 05:16:00 pm »
Deb,
If you want an unbiased opinion..go to cyberknifesupport.org...now granted, it is primarily a cyberknife support site,,,however, Dr. Medberry uses all forms of treatment and can really give you the breakdown of advantages vs disadvantages, and does not always recommend cyber.
For the size of your AN...there are tons of research for cyber..it has been studied and studied and studied....and as mentioned before it is the same form of radiation used as in the GK system...
Research with Lineac has not proven to be as effective as either GK or CK.
Now although you are comfy with your Dr at Shands and that of course has  alot to do with your treatment choice the Lineac system does not have as good of a medical record as either of the above treatments. Perhaps it is a great choice for ANs and that may be what your Dr is referring to in his success...
When you research, you have to check the date of the site of publish...may are tremedously outdated, as well as whom sponsered the site
Fractionated verses one time treatment.......yes it is as effective....at least so far and you have at least a chance of preserving the surrounding nerves, but if it makes you nervous, go with what your gut tells you.....realistically, any form of radiation will work, the idea being kill the tumor cells....not all that hard in comparison to some of the more aggresive forms of growths that can occur....schwanommas, are a nice slow growing benign growth...henceforth really easier to treat,,,it is not like the Drs are trying to play catch up, and no matter what system you choose, you will still more than likely have to do follow up the rest of your life....even if you had surgery, you still have to do follow up although, depending on your age......if the tumor dies, or was removed,,,it took what,,,,say 15yrs to get to this size,,,,so if you kill it,,and it comes back...you are looking at another 15 yrs...see my point?
The primary thing is to try and stop the growth for now so that it does not cause further damage.
Good luck and try not to get too confused...really check with that site, and ask for very specific data concerning your top three choices......I would imagine cyber will come out on top..but not always even though it is that site......the Drs are quite open to other treatments and are really unbiased..something I found to be really really interesting......Dr medberry really did not want me to have surgery...Dr spunberg wanted a biopsy..Dr Fields the surgeon suggested Gk...but then after surgery was perfectly fine with me having CK and is working with Dr Spunberg..if he felt it was not as thourough a treatment, I am sure he would have insisted that I have the GK at his center.
Good luck and I am sure no matter what you pick you will be fine...
PS
One advantage dispite popular rumor is that you can treat a second time with CK...unsure about GK,,but I believe you can with that form too......
And if none of the above work....you can indeed follow up with surgery..and once again that is dispite popular rumor....if you have a good qualified surgeon whom performs both surgery and radiation...they almost always recommend radiation first...then if it doesnt work..which is unlikely ..but does happen...then proceed to surgery so remember you still have options
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.

Sheryl

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Re: CK or LINAC
« Reply #9 on: July 03, 2007, 07:09:33 pm »
Boy oh boy talk about confusing.  We have been running around since November 29th of last year checking out various radiosurgery options for my husband's meningioma regrowth.  He refuses another surgery (original done 5/04).  Spending the winter in Florida we were able to check out facilities in Naples and Fort Myers - then on to Boston as we spend the summer on Cape Cod.  One hospital is pushing Novalis (Brigham and Women's) as that is what they have there.  Interestingly, they are in the process of obtaining CyberKnife too.  Awaiting appointment at the Beth Israel (they have CyberKnife) as they have all the records and seem to be the most thorough in that they have even asked for the original pathology slides.  Luckily second meningioma is growing slowly (2 mm in seven months) as opposed to original which doubled in size in six months from 2 cm to almost 4 cm.  Ironically all this research will help me out as I have been a "wait and watcher" for 5-1/2 years on a 9th cranial nerve schwannoma - as opposed to acoustic on the 8th cranial nerve. We joke that maybe they will give us a buy one get one free radiosurgery!!

Keep us posted,
Sheryl
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

ppearl214

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Re: CK or LINAC
« Reply #10 on: July 04, 2007, 09:38:25 pm »
Sheryl, how did your CK consult go at BI this past Monday?

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

Sheryl

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Re: CK or LINAC
« Reply #11 on: July 05, 2007, 10:18:57 am »
Hey Phyl - This past Monday was their team meeting and we actually got a call right after.  Terry (the coordinator) said the doctors were requesting the original pathology slides which are now winging their way from Fort Myers to Boston. They seem very thorough and what we like is that we have not been allowed to "fall through the cracks".   Of all the opinions we have received, the BI was the only one to ask for the pathology slides - we were quite pleased with that since there was a discrepancy between the original reading and a second opinion that we had requested on our own.  First pathology at the time of the surgery was read as "meningioma, typical".  Considering it had doubled rather quickly in six months, a pathologist friend of the family suggested we send them off elsewhere (this was 2-1/2 years after surgery).  The second opinion came back "meningioma, atypical, grade II".  Fortunately this is still a benign process but if we knew then what we know now, more than likely post-surgery radiation would have been done and maybe we wouldn't have been in this situation with a regrowth now.   

Anyway - will keep you updated.  I'm sure there will be an appointment in the near future.
Sheryl
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

NF-2er

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Re: CK or LINAC
« Reply #12 on: July 07, 2007, 10:03:25 am »
Hi;

   Re, radiation types, Mayo Clinic's GK Center Director and I share a similar view.
   After GK, the other radiation types were developed mainly to capture a market share and to test theory.
   One can pour over the statistics and read theory all day, but in the end, will see that GK has a good track record and is by it's nature, tissue sparing as well.
   Best wishes!!

   NF-2er

ppearl214

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Re: CK or LINAC
« Reply #13 on: July 10, 2007, 12:18:16 pm »
Great news Sheryl. Please keep me updated and as you can see, Terry is a sweetheart (yes, you can tell her I said that!) and regardless of what and where you choose, you know CB and I are here for ya!

BTW, brunch on Aug 5? You are joining us (confirmed?) :)

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

yardtick

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Re: CK or LINAC
« Reply #14 on: July 13, 2007, 05:37:00 pm »
Please explain what fsr and linac are. 
I had a translab, facial nerve was debulked Sept 2007.  Mri done Dec 30/06 & Jan 9/07  Tumour measured 1mm x 5mm, having another Mri in a few weeks, crossing fingers and praying there is zero growth.
Thanks,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games