Author Topic: Cyber Knife or Gamma Knife Treatment - confused  (Read 13752 times)

recharge

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Cyber Knife or Gamma Knife Treatment - confused
« on: December 01, 2011, 07:29:16 pm »
Hi All,

Thanks for your responses for my previous posts in this forum. My 2'nd MRI shows some grown in my tumor and it measures at 1X0.5X0.5 cm and i am planning to go for the Radiation treatment.

My Hearing is 95% loss in my left ear where my tumor is on. I don't have dizziness or any other symptoms. The tumor is on IAC .

Which treatment will have best outcome in my case? GK or CK ? Based on your responses , i am planning to go to either UPMC for GK or stanford Dr Chang for CK. I am confused which one i need to go for.

Please help me out to decide on this.

Thanks in advance

Muru

CHD63

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #1 on: December 01, 2011, 07:40:47 pm »
Muru .....

I did not have radiation treatment, but if I were you, I would send my most recent MRI and audiogram to both places for a free evaluation.  That might help you make up your mind.

Best thoughts.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Tumbleweed

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #2 on: December 02, 2011, 12:18:52 pm »
Hi, Muru:

In answer to your question:
CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK, but this is not a factor in your case because you already have 95% hearing loss on your AN side.

GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)

Both UPMC and Stanford are very highly regarded. You can probably do no better than to go to one of these fine facilities, and you are wise to make the extra effort to do so, as the outcome of your treatment will impact your quality of life going forward and both UPMC and Stanford have outstanding track records. Drs. Chang and Gibbs treated me at Stanford, and I had phenomenally good results. I cannot say enough good things about Dr. Chang. He is 100% dedicated to his patients and had treated over 700 AN patients with CK at the time I was treated 41 months ago. I imagine by now he has probably treated over 1000 patients, as he treats over 100 per year; that's around 2 AN patients per week! When it comes to brain surgery (including radiotherapy), practice makes perfect, and Dr. Chang has had a ton of practice.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #3 on: December 03, 2011, 05:24:19 am »
Hi Muru and welcome

TW has given some terrific insight into both options so I will only say this.... since your hearing is already 95% gone, either option is very viable.  I guess the decision could come down to your comfort level of facility/treating teams (I have met members of both teams and VERY impressed with both), will your health coverage provide coverage for traveling/both locations and most importantly..... follow up care.  Many that pursue radiation as an option tend to forget about who will be doing the follow up care.  It is HIGHLY important to make sure your follow ups are done with the treating teams (ie: radio oncologist and neuro onc, both are part of the teams regardless if CK or GK).  They will need to be the ones to follow you should you run into post-radio issues (ie: enhanced issues such as enhanced tinnitus, enhanced hearing/balance issues, etc). 

For me, treatment was in my own back yard (living in metro Boston, wonderful medical facilities are right here) so for me, it was an easy choice but you have narrowed it down to wonderful choices.  Both, GK and CK, are extremely terrific choices and it's a difficult choice..... Question... what does your gut tell you?  Go with your gut.

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

ferguson75205

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #4 on: December 03, 2011, 05:25:22 pm »
Hi!

While you are at it ... suggest you investigate proton therapy. I received proton therapy at Loma Linda University Medical Center, Loma Linda, CA (see some of my prior Discussion Forum entries). With time, I think  this treatment modality is likely to become the national standard for AN care.

Good luck with your research!

Steve
Steve

72 years old; left side AN (.94 cm) diagnosed with MRI 4/10/10; moderate hearing loss and speech recognition issue; Watch & Wait; October 2010 MRI revealed tumor growth (now 1.2 cm); slight equilibrium issue (motion related). Started proton therapy at LLUMC on 1/28/2011; finished 3/9/2011

ferguson75205

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #5 on: December 03, 2011, 06:00:06 pm »
Search under "proton therapy".
Steve

72 years old; left side AN (.94 cm) diagnosed with MRI 4/10/10; moderate hearing loss and speech recognition issue; Watch & Wait; October 2010 MRI revealed tumor growth (now 1.2 cm); slight equilibrium issue (motion related). Started proton therapy at LLUMC on 1/28/2011; finished 3/9/2011

Tumbleweed

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #6 on: December 04, 2011, 11:47:39 pm »
I think Phyl and I have a mutual-admiration society goin' on, because I agree with her advice whole-heartedly. I think if hearing preservation isn't an issue, then CK and GK have equal potential for a great outcome. They are very similar.

Steve, I've heard of proton therapy but don't know much about it, except that it is a form of FSR (radiotherapy). Can you please tell us forumites how it differs from CyberKnife and GammaKnife and what led you to choose it over those types of radio? Your insight might be of help to Muru.

Thanks,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #7 on: December 05, 2011, 05:22:50 am »
I think Phyl and I have a mutual-admiration society goin' on, because I agree with her advice whole-heartedly. I think if hearing preservation isn't an issue, then CK and GK have equal potential for a great outcome. They are very similar.

Steve, I've heard of proton therapy but don't know much about it, except that it is a form of FSR (radiotherapy). Can you please tell us forumites how it differs from CyberKnife and GammaKnife and what led you to choose it over those types of radio? Your insight might be of help to Muru.

Thanks,
TW

Back atcha TW :)

Proton Therapy is now offered (at last check) at 5 facilities in the USA... Mass Gen Hospital and Loma Linda are doing the majority of Proton Therapy AN's from my understanding (I believe Houston is a "newer" facility and unknown how many AN's they have now done).  I know of 4 that were treated at MGH with Proton........ 3 of them here on the forums/site (StoneAxe/Bob, tsl and elliemae).  Stoneaxe Bob ran into failure with his and had his AN surgically removed within the past 2 yrs.  tsl and elliemae have run into post-radio issues (as could any of us) but at last check, things were calming down. I saw tsl last month and she is looking great (as always) and said things were better for her right now.  Both of them are a couple of years post-Proton treatment and still being followed by the their Proton team at MGH (Dr. Loeffler and team)

Proton is a very expensive form of radio-treatment for the facilities running it, thus, the costs are forwarded (whether through your health insurance or if you have private insurance out of pocket/deductibles, please research carefully).  Typically done "fractionated" (over a number of days), beads are inserted into the head to be used as "markers" during the treatment process (the beads stay in perm).   There is no long term data on the efficacy of Proton Therapy on AN's at this time (alot of the data is difficult to find online.... yes, some can be found but still difficult).  For me, I am going on first hand experience of those that have had it done here locally as I have met them all face to face and have also kept in touch over time to see how they are doing.  Some good, some not so good... typical with any radio-treatment option.

Again, the gut (as well as homework) needs to lead the way.

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: Cyber Knife or Gamma Knife Treatment - confused
« Reply #8 on: December 05, 2011, 01:59:51 pm »
In theory Proton Therapy should provide the best radiation treatment of all, as the protons release their energy in the tumour, and reduce tissue damage on the way in and on the way out. This gives proton therapy an advantage in being able to deliver higher doses to the tumour with less damage to surrounding tissue, In practice, for AN's the results have not met expectations.
Maybe its because the nerves are part of the tumour. Results so far show more facial nerve complications and poorer hearing preservation rates than Gammaknife or Cyberknife. One day it may well overtake photons, (Gammaknife, Cyberknife, and other Linac treatments). Further studies and refinement are still needed for proton therapy.


http://www.ncbi.nlm.nih.gov/pubmed/21353158

http://www.ncbi.nlm.nih.gov/pubmed/19054586

http://www.ncbi.nlm.nih.gov/pubmed/12943574

http://www.ncbi.nlm.nih.gov/pubmed/11844261
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!

cindyj

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #9 on: December 05, 2011, 02:12:36 pm »
Just stopped in to say "hey" Muru!  Just realized this (recharge) was you...you've been given advice from some of the best participants we have here...so between this and meeting some folks at Saturday's meeting, hope it's helped!  Was great to see you again - let me/us know what you decide.

All the best to you,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

recharge

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #10 on: December 05, 2011, 08:56:54 pm »
Thanks everyone for the great info. I need some more time to decide on this.

Cindy, it was great seeing you on saturday.

Mark

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #11 on: December 09, 2011, 08:45:04 pm »
Old time poster, just dropping in on the conversation

Tumbleweed nailed the discussion points between CK and GK , which are basically

1) Comfort - CK does not require an immobilizing head frame to be screwed into the skull as GK does
2) Fractionation - CK allows for multiple stage treatments which there is an increasing body of evidence improves hearing nerve performance results over 1 treatment
3) Equal dosing of irregular shaped tumors is better with CK which limits hot and cold spots

Both are very accuarate and good choices for an AN treatment

Paul and Phyl's comments on Proton therapy are also spot on. In theory Proton should be an a viable option and it has had some good results in other types of treatments, but for AN's it has not shown improved efficacy compared to GK or CK, and in fact , studies have shown increased complication rates

Hey Phyl, hope you're doing well. Haven't seen the new newsletter, but I think my story is included in this one  :)

BTW, just had my check up with Dr. Chang last week, and I'm officially a successful 10 year CK patient , woohoo

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

Tumbleweed

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #12 on: December 12, 2011, 09:22:08 pm »
Congratulations on your successful CK treatments, Mark! And thanks for reporting back to us all; we don't have enough 10-year veterans around this place! It's great to hear your AN is a goner so many years out.

PaulW, I have to say I'm diggin' your research oriented posts. You rock!

Best wishes to all,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #13 on: December 13, 2011, 05:48:34 am »
Hey Phyl, hope you're doing well. Haven't seen the new newsletter, but I think my story is included in this one  :)

BTW, just had my check up with Dr. Chang last week, and I'm officially a successful 10 year CK patient , woohoo

Mark

My very dear friend!
Congrats on such terrific news! :)  Thrilled to hear this!  Will look for "Notes" as well! Happy Holidaze to you and that lovely wife of your's!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

recharge

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Re: Cyber Knife or Gamma Knife Treatment - confused
« Reply #14 on: December 13, 2011, 10:15:05 pm »
Thanks TW,phyl,Mark. Did you guys had any balance and facial issues before or after treatment? If you had these symtoms, did it improve after treatment?   Did you have new symtoms like balance issue after treatment? If it is how long you have had this?

I am leaning towards CK...

Waiting for your response.


Appreciate all your suggestion on this.

Thanks