CyberKnife Patient Support Group Cyberknife.com All posts found on this patient forum are archived and are no longer live. They are available to read only.
New Topic Locked Topic Printable Version
32 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> | Show Oldest Post First ]

pbp214
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Feb 2006
Total Posts : 624
 
   Posted 7/24/2008 11:27 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
francesco,

Phyl here :-) Not sure how I missed this thread... but as you know, I saw the site and it's truly fabulous! Great job! Am also keeping it in mind for those that inquire to me about CK, as your site gives another perspective besides mine.....

Congrats to you! See you also on the ANA boards.

Phyl


Acoustic Neuroma, 1cm x 9mm x 4mm. CK at Beth Israel Hospital/Boston MA April 3-7, 2006

Back to Top
 

Jerome J. Spunberg, M.D.
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Feb 2006
Total Posts : 4214
 
   Posted 7/17/2008 6:51 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
No problem at all. Go ahead.


Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 7/17/2008 3:38 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Since this buried pretty deeply in an obscure post, would you guys mind if I started a new topic about the website?
Back to Top
 

Jerome J. Spunberg, M.D.
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Feb 2006
Total Posts : 4214
 
   Posted 7/17/2008 2:41 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Good work!


Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717

Back to Top
 

radsrus
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 7510
 
   Posted 7/16/2008 9:17 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
I saw the site and urged fb to list it here. I found it very interesting.


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 7/16/2008 2:02 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Thanks very much, Doctor. I do hope the website helps.

Best regards,

Francesco
Back to Top
 

Jerome J. Spunberg, M.D.
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Feb 2006
Total Posts : 4214
 
   Posted 7/16/2008 1:04 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Francesco,
I checked out your site and was quite impressed with your thoroughness and attention to detail. I am sure that your account will be of great help to others in the decision-making process or afterwards. Congratulations and thanks so much for your effort.


Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 7/16/2008 10:31 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Well, I am now almost a year after Cyberknife and as promised, I have published a website recounting in some detail whole experience of being diagnosed, choosing a treatment in the face of conflicting medical opinions. and my progress since treatment at Cyberknife. I tried to recount the story in detail, hoping that my experience might provide some help and guidance for new patients diagnosed with this condition. I've also listed on the site a few key tips and resources for new patients. I hope it is helpful.

The site is at www.myacoustic.org

Thanks again to all for your assistance on my journey.

Francesco
Back to Top
 

candtlaw
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Mar 2007
Total Posts : 203
 
   Posted 9/19/2007 5:13 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
So glad to read a positive post Francesco :) Take care and check in when you can........


Cyndi
post CK 04/30/07

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 9/19/2007 4:39 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Hello All:

I wanted to provide a post-treatment update, as promised. I was treated at Stanford by Drs. Chang and Soltys on August 23-26 and I'm pleased to say all went according to plan. As others have written, the treatment itself is a breeze. The mask is somewhat uncomfortable but so long as you are able to relax and release and pretend that you are napping, it is not that bad. My family accompanied me to Stanford and they were thrilled when I walked out of my first treatment smiling and full of optimism. In fact, my family and I had a lovely week in Palo Alto, considering the circumstances. We visited Monterrey and Big Sur, spent a day in San Francisco, and spent mornings by the pool and evenings out to dinner and at the movies. I was at the gym and swimming laps every day.

We drove to LA from Stanford after my final treatment on Friday and on Monday I was thrilled to be back to work and back to resuming my life. I had to take it easy for two weeks or so after treatment. Pretty much went from work to the couch to bed. But by week three, I began visiting the gym again and resuming my social life, including salsa dancing, which was one of the things I feared losing the most.

The main symptoms I had prior to treatment were facial numbness, balance issues and some fullness and general weirdness in the head. The numbness is still around and I I still have intermittent balance episodes. The folks at Stanford recommended I take 2400 mg of ibuprofen a day (4 tabs, three times a day) for a week to reduce inflammation on the balance nerve. That is a helluva lot of ibuprofen, and fortunately, it worked. The balance issues cleared up after a day or two. I have been off the ibuprofen for a week now and am waiting to see whether the balance issues will recur. Stanford tells me that a regimen of steroids also is available to address balance issues if the ibuprofen proves ineffective.

I am thinking of writing up my experience, in particular my experience researching, consulting with specialists and arriving at a treatment decision, for the benefit of other newly-diagnosed patients and will keep you informed when and if I publish that work, most likely on a website.

To all patients, please feel free to email me at frbarbera@yahoo.com if you would like to discuss.

Thank you again, Dr. Medbury and Dr. Spunberg, for your dedication and counsel.

Best regards,

Francesco
Back to Top
 

Jerome J. Spunberg, M.D.
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Feb 2006
Total Posts : 4214
 
   Posted 8/19/2007 3:29 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Me too.


Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717

Back to Top
 

radsrus
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 7510
 
   Posted 8/18/2007 7:16 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Does Dr. Chang get to the wine toasting? If so, I'm moving to join the Stanford team


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102

Back to Top
 

marystro
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2006
Total Posts : 114
 
   Posted 8/17/2007 3:00 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Francesco,

Good luck on your CK treatment at Stanford. You have picked a worldclass team to treat your AN. My decision also went from surgery to GK to CK all within one month of diagnosis. My 1-year MRI follow up seems to be very positive (still waiting for official review from Dr Chang). You will be fine! Don't forget the post-treatment wine toasting at the California Cafe near Stanford - it's a tradition for us CK ANers there!!!

Keep us posted of your progress.

Mary


Mary
July 2006 - 22 x 18 x 20 mm AN
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2007 - 22 x 19 x 19 mm AN

Back to Top
 

candtlaw
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Mar 2007
Total Posts : 203
 
   Posted 8/17/2007 2:15 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
GL to you. Can't wait to read your updates. I just know that all will work out........Quite the club to belong to huh??? I will be thinking of and praying for you next week :)


Cyndi
post CK 04/30/07

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 8/17/2007 1:35 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Hello All:

This is just a quick update on my decision-making process. I have decided to be treated with CyberKnife by Dr. Cheng at Stanford. My treatment is scheduled for next week (8/22-24), a little over a month after my initial diagnosis. With the help of all of you who responded to my messages, all of my concerns and questions about CN have been addressed. I'm 100% certain it is the best option in my situation. I've had to deal with some hiccups on the insurance front but fortunately, with the help of some kindly benefits administrators in my office, those have been ironed out. So it looks like I'll be ending the summer with a bang -- or, more accurately, a zap.

Thanks again to Dr. Medbury and Dr. Spunberg and to the former patients who took the time to respond these posts. I will always be grateful. And I will continue to post on my progress for the benefit of future members of our highly exclusive club.

Kind regards,

Francesco
AN diagnosed 7/18
2.2 x 2.3 x 2.9 mm
Back to Top
 

candtlaw
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Mar 2007
Total Posts : 203
 
   Posted 8/15/2007 8:18 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Francesco, Also 34 post CK of a AN 1cm. I will share my story with you if your interested as well. I am happy thus far with my decision of CK over surgery

Cyndi
5th and last treatment 04/30/07
Back to Top
 

Jerome J. Spunberg, M.D.
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Feb 2006
Total Posts : 4214
 
   Posted 7/31/2007 3:57 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
As time marches on, orders around the country for Cyberknife, and also for other competing less accurate stereotactic radiosurgery systems, will greatly outpace the sale of new GammaKnife units. As a result, there will be much greater familiarity with CK and the proportion of patients treated with CK vs. GK will shift in favor of CK. There are so many advantages of CK over GK that it is hard for me to imagine that many facilities will opt to purchase a new, expensive, GK system, except perhaps for a neurosurgical bias at certain select institutions.


Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717

Back to Top
 

radsrus
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 7510
 
   Posted 7/31/2007 2:42 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
THere is no reason to think CK will be less effective than GK, and the data to date shows the same 95-98% control rates. He is wrong about the accuracy. GammaKnife has a mechanical accuracy of 0.3 mm. But that does not take into account the inaccuracies of MRI versus CT, the inaccuracy induced by the head positioning system, and the inaccuracy induced by frame torsion. The problem gets even worse with mechanically set head positioning. THe OVERALL accuracy of the CK is variously reported as 0.5-0.89 mm, with most showing closer to the 0.5 mm for intracranial targets. OVERALL accuracy of the GK is 1-2 mm, depending on a number of factors.

Our radiosurgery group has experience with hundreds of AN's treated for 10 years on GK and for 4 years on CK. WE exclusively use the CK now.

Your choice, but I personally would go with CK. Either one is highly likely to control your tumor


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102

Back to Top
 

marystro
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2006
Total Posts : 114
 
   Posted 7/30/2007 1:50 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Chiming in as well.

My AN is about the same size as yours, give and take. I went through similar symptoms worsening and due dilligence process as you are going through. My conclusion was CK as you can see in my signature. I am coming up to my 1 year MRI (next week) and remain optimistic. My and other stories of AN treated by CK is in the following link:

http://anausa.org/forum/index.php?PHPSESSID=c4a03f64f16a8b32aa5df7f7b667716a&topic=3929.0

Feel free email me or others in the above link. We are all here to help and to give back. The doctors here are awesome. I could have never asked for more. * waving hi to Dr. M and S!!!*

Mary


Mary
July 2006 - 22 x 18 x 20 mm AN
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2007 - 22 x 19 x 19 mm AN

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 7/30/2007 8:12 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Hello Dr. Medbery,

Here's an update on the latest. I had a consult with Dr. Christopher Duma, an experience neurosurgeon in Orange County. Dr. Duma is a microsurgeon and a radiosurgeon and has extensive experience with the Gamma Knife. He has treated hundreds of ANs, including approximately 300 or so AN’s with Gamma. He’s been using the Cyberknife since 2002 or so but does not treat AN’s with them (for the reasons listed below).

Thankfully, Dr. Duma’s considered opinion is that I should go with radiotherapy. Barring something completely unexpected, I absolutely plan to take his advice.

The next question I face, and it is a tricky one, is Gamma v. Cyber. Most doctors I’ve spoken with, formally and informally, practically assume Gamma is the way to go and know very little about Cyber. Dr. Duma (who does both) treats ANs with Gamma not Cyber. He has a two principle reasons for this:

 Most importantly, he noted that CN being relatively new, there simply are no studies out there verifying its success at tumor control in the mid- to longer-term time frames. He said the jury is still out on fractionated treatment of AN’s and he pointed to the period in the 1970s (or maybe it was earlier), when apparently older generation LINACs were used to give fractionated doses to ANs. He said the results of those earlier treatments showed far lower tumor control rates (on the order of 70%) and until CN is demonstrated to be different, it is too risky. He noted CN’s primary benefit – that it is 15-20% more successful in terms of hearing preservation – but said that benefit is not worth the risk.
 His second point – and I’ve heard this from a couple of doctors – is that GK is simply more accurate because of the head frame.

I will need to mull over this decision over the next few days. As always, any insights you can offer, or resources to which you can direct me, to help will be greatly appreciated.

King regards,

Francesco
Back to Top
 

Calpedaler
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 64
 
   Posted 7/26/2007 7:11 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Franceso,

I'd be happy to share my CK experience and , actually, my story is no farther away that this web site. :-) Go back to the home page and click on stories, then Mark's Acoustic Neuroma. If you have any questions after that I'd be happy to talk by phone or e-mail separately. Only caveat is I'm heading over to the UK tomorrow for two weeks vacation, so will be out of pocket until mid August

Mark


CK for a 2 cm AN with Drs. Chang and Gibbs at Stanford, November 2001

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 7/26/2007 6:01 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Thanks, Mark. That has been the consensus judgment. I'm not sure what they were thinking when they quoted those figures but it has troubled me.

If you would be willing to share it, I would love to hear more about your treatment experience at Stanford and how things have gone since then in terms of tumor size and your symptoms.

Thanks again for your concern.

Regards,
Francesco
Back to Top
 

Calpedaler
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 64
 
   Posted 7/26/2007 4:04 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
Franceso,

I'll chime in on the Hearing and facial nerve preservation statistics you were given as I read them as amazingly optimistic. My AN was smaller than yours at about 2 cm and I was given about a 10-20% chance of saving usable hearing by Dr. Jackler , then at UCSF-now at Stanford as well as Dr. Chang and Dr. Schuer at Stanford. In surgery, the probability of hearing preservation decreases as the AN size increases and the odds of facial nerve impact increase as well, so I would think your results with a larger AN would be less than what mine were and I don't think even the doctors at House Ear could deliver results as good as the docs at Cedars are promising. I think radiosurgery provides much better results in the medium size tumor range than surgery. In fact, if you did opt for surgery I would suggest that you talk to someone about Translab where you sacrifice the hearing, but generally have less risk to the facial nerve as I think it would be a long shot to save the hearing through retro on something the size of 2.5 cm

my 2 cents,

Mark


CK for a 2 cm AN with Drs. Chang and Gibbs at Stanford, November 2001

Back to Top
 

radsrus
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 7510
 
   Posted 7/26/2007 7:24 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
The symptoms will not preclude it.


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102

Back to Top
 

fb
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2007
Total Posts : 20
 
   Posted 7/26/2007 6:39 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Hello Doctor,

I wanted to give you the latest. I have benefited greatly from our back and forth and hope that readers get something out of it as well.

I had a hearing test done yesterday. It showed mild right-side hearing loss in the high frequencies (0-20% is normal, my right ear showed around 30% give or take in the high frequencies.) Word recognition was perfect. On the other hand, I am increasing feeling like I have a tumor in my head -- i.e., a sense of compression and sluggishness -- which is quite distressing as it makes me worry that radiotherapy will be excluded as an option.

I have scheduled consultations with three additional neurosurgeons, including two that specialize is radiotherapy (Dr. Duma at Hoag in Newport and Dr. Chang at Stanford). The third is Dr. Slattery at House Ear Clinic.

My plan is to do the consults, absorb as much information as I can, and then make a final decision as to treatment, hopefully by mid next week. Based on my research so far, I am strongly inclined to a radiosurgery approach. My greatest fear is that my symptoms will preclude it.

Kind regards,

Francesco
Back to Top
 
New Topic Locked Topic Printable Version
32 posts in this thread.
Viewing Page :
 1  2 
 
Forum Information
Currently it is Wednesday, November 21, 2018 4:46 AM (GMT -8)
There are a total of 21,621 posts in 3,083 threads.
In the last 3 days there were 0 new threads and 0 reply posts. View Active Threads
Who's Online
This forum has 3059 registered members. Please welcome our newest member, Thom Howard.
25 Guest(s), 0 Registered Member(s) are currently online.  Details