order to lessen confusion as to where to touch base with others we
are no longer offering a Guest Book as of February 1, 2004. Please
make all entries on our message board or by email. We continue to encourage
everyone to submit their personal experiences to Our Stories page via
value all of your comments, questions and sharing of your own experiences
with CyberKnife, thus the following entries are preserved from the
in CyberKnife Patient Support Group GuestBook 56
Name Marianne Fleischer
City San Francisco
Comments Don, You asked me to stop by this website (and Dr. Dumas’s Cyberknife
website. This seems like revolutionary surgery with some amazing results.
Marianne Fleischer (writer-producer) 1/30/04
Date January 27, 2004
Name Val & John
Comments We are looking to hopefully get cyberknife at Phoenix after John has
his most recent MRI done Thursday. He has RCC with mets to the lungs (5-6)
and we believe those are stable due to IL-2 treatment. He had 2 small spots
in his brain so he had bursts and WBR in the summer and never had any symptoms
until November. MRI revealed a tumor and swelling-not sur eof it’s the same
one or new but he was hospitalized a week and now is on Decadron. The onc
here doesn’t know anything about this treatment-thought we might be able
to do gamma knife but Radiation onc in El Paso said tumor is too big. This
is the only other option we can find…my question is IF this 4 cm tumor
is the same exact one they radiated in August does it matter for cyberknife????
Date January 21, 2004
Name Cindy Seay
Comments My husband had the cyberknife procedure done last month in Phoenix
and is having a few problems. I would love to hear what side effects anyone
had and what he should expect long term.
Date January 21, 2004
Name JAMES ANTHONY
City VERO BEACH
Comments NEED COMMENTS FROM ANYONE HOW HAS BONE CANCER ON HAS SPINE. HAS CYBERKNIFE
HELP THEM AND HOW MUCH?
Date January 8, 2004
Name Chris Purlee
Comments Looks like I will be visiting Boulder Colorado the week of January
19 to be treated a week for oligodendromglioma, a brain tumor. I would love
to hear from anybody else who has experienced the same situation.
Date January 8, 2004
Comments Hi , I have a Schwannoma on my L-1 spine. I am about to have Cyberknife
next week, I just had the fiducials placed two days ago. Im sore but in good
spirits. Cant wait to have the Cyberknife next week and move on with my life.
Date January 5, 2004
Comments Just need to talk to someone
Date December 23, 2003
Name Chris Purlee
Comments Lots of info to keep my head spinning. I have a tumor on my brain
called oligodendroglioma. I had surgery a year ago to remove as much as they
could and now the doggone thing is coming back. I’m trying to look into lots
of options including cyberknife. What would you say to convince me? Seems
like lots of options. I guess I’m most leary of the effects from the radiation
in my future. How would you encourage me? Thanks so much.
Date December 20, 2003
Name Evan Evans
Comments I myself have had gamma-knife treatment, in sheffield. I now patiently
await the full out-come of the treatments success. After the treatment I
felt full of life . I am so greatful to all who helped in the treatment of,
magnificent! from the cleaners to the doctors I will remember you all .Especialy
Kieth the radiographer in sheffield who always had a joke to lighten the
Date December 18, 2003
Name Becky Kirkpatrick
Comments Greetings from the Upper Midwest. My CyberKnife journey began in Oct.
2003 while searching for the cause of hearing loss in my right ear. An MRI
discovered an AVM in the perital lobe of my brain, totally unconnected to
my hearing loss. Off to the neuroradiologist for a confirming Angiogram.
My AVM is small [1.7] and is not active. I am and have been sympton free
to this point, but made the decision to treat it as according to my scans,
it is fed by a major artery. I was extremely fortunate to fall in to the
hands of a great team of neuroradiologists and neurosurgeons who are leading
the brand new CyberKnife program in St. Paul, Minnesota. I had my first CK
treatment yesterday, and one more to go today. I am very optimistic about
that my AVM will be gone in a relatively short period of time and that my
AVM will remain inactive during that time. I am so grateful for 21st century
technology and the options I’ve been afforded for treatment.
Date December 17, 2003
Name Tim Doerr
Comments I HAD THE CYBER KNIEF PROCEDURE IN 2000 FOR A RECURRENT ACOUSTIC NERUOMA
THAT HAD BEEN SURGICALLY REMOVED IN 1998, BUT GREW BACK. MY MRI EVERY SIX
MONTHS HAVE INDICATED THAT THE TUMOR HAS NOT INCREASED IN SIZE AT THIS TIME.
Date December 12, 2003
Name Bryan E. Negrey
Comments First, Thanks to all in this support group and the conception of it.
Being able to compare to a "T" my dilemma and experiencencs with
my meningioma and my treatments of Cyber-Knife at Goergetown University Hospital,
Washington DC. My symptoms started with severe and demanding headaches. Not
the hangover kind, but some that woke me out of sleep and made the days miserable
to cope with. Things got progressively worse. I started to forget what my
daily missions were and at times forget where I was going or where I had
been. The straw that broke the camels back was, one day while standing in
front of a platoon of my soldiers, I started to back peddle and lost my balance
falling flat on my back. Embarassing yes, but a wake up call none-the-less.
I was taken to our Med center and then forwarded to a civilian hospital.
An MRI was performed and showed evidence of a huge mass in the frontal lobe
of my skull. I am a simple soldier, born and raised on a farm in southern
Pennsylvania. This was all new to me and I am very stubborn when it com
Date December 10, 2003
Name Allen Goddard
City Castro Valley
Comments Looking forward to joining you
Date December 10, 2003
Name Mark Tari
Comments I have a good friend with Adenocystic Carcenoma. Rare form of cancer
with almost no research done on it. He has about 8 tumors in his lung. This
looks promising on him. please let me know what you think.
Date December 6, 2003
Name Joslin Twouyo
Comments I am 55 and have AN. It is very small and I had almost complete hearing
loss in that right ear. The left year is better but I stil have to use a
hearing aid. I don’t have any medical insurance and wouls like to know if
I can have cyberknife treatment at Jackson Memorial Hospital in Miami.
Date December 4, 2003
Comments I have scoliosis and CP and i like how everyone
shares their stories on here if there was a way i coud do so myself then
i would. good job though.
Date November 30, 2003
Name Jim Stewart
Comments Rec’d My 3rd tx 11/21, one of the first pts. to use Cyberknife in
St Paul MN at St Joseph’s Hosp. I had an AN (L) ear. Hope to write more about
this after a few weeks.
Date November 28, 2003
Name gary w. nutt
Comments i was diagnosed with carsonoma of unknown primary in oct.03.I have
a tumer in my menubriam & four lesions in my spine.I would like to know
if the cyberknife could help me.my phone # is (916)989-4082.my docktors seem
to know very little about the cyberknife.
Date November 23, 2003
Name Judith Almond
Comments I just completed 3 cyberknife treatments at the Barrows Institute
in Phoenix. I was diagnosed with NSC Lung Cancer in Oct 2001. I had radiation,
chemo, and surgery (lobectomy) to remove a squamous tumor high in my left
lung. I then had two more large chemos as insurance. Unfortunately, the original
tumor left enough cells to start up again, eating thru two vertebral bodies
and forming a tumor in my spine. I had neuro surgery to remove as much of
the tumor as possible, then the three cyberknife treatments. My question
is: I am having considerable pain in my chest and wonder is this pain normal?
It’s only been three days since ending treatment. I am hoping this pain will
be short term.
Date November 21, 2003
Name Mike Dolan
Comments I was diagnosed 5 days ago with a1.9 x 1.2 cm acoustic neuroma on
my right auditory canal. As I sit here reading the various stories I am amazed
at the similiarities between my own experience and that of those listed.
Especially Tonys’…point by point my early observations and diagnosis is
almost identical to his. This website has been encouraging and is much appreciated.
I will see another specialist this Monday November 24, 2003. Can anyone offer
suggestions on how to get an interview or referral with one of the Stanford
Date November 21, 2003
Name Mike Dolan
Date November 16, 2003
Name Carmen Ellison
Comments I am undergoing the CyberKnife treatment next week and was hoping
that someone could provide me with some information on the possible dangers
and side-effects with this type of treatment. Any feedback would be greatly
appreciated. Thank you.
Date November 14, 2003
Name Robert Zello
Comments I was found to have a A.N. about 1 centimeter 8 mounths ago. still
reseaching what procedure to have. Go for another MRI in Feb. my docs. want
me to have surgery, and want me to go to a hospital that I have had only
bad experiences at. And Insurance won’t pay for me to go out of state. So
I feel traped in a bad situation.
Date October 30, 2003
City san francisco
Comments Well it’s been about 2 years since I had my Cyberknife at Stanford.
I returned to work 2 days after my surgery(3 consecutive sessions)…I am
thanking God everyday I had access to Stanford and the whole staff at Stanford.
I thank God for Dr. Adler for his responsibility in getting us this type
of treatment. I’m sure I made the right decision. My situation was complex:
I had facial spasms caused by the tumor. But until I met Adler noone else
seemed to agree that the tumor might be causing some of the spasms by pushing
up against a nerve. Before his expertise, I had other opinions of having
2 surgeries(one for the neuroma and one for the spasms).Just think, I possibly
could have had major facial damage. Thanks so much Dr. Adler and to all the
other staff who were just wonderful and supportive. If you have any questions
please feel free to ask… Forever grateful and spasm free: Sandra
Date October 17, 2003
Name susan lanham
Comments 10/14 next week i will have cyberknife surgery for a metatastic brain
tumor at the boulder colorado facility. i am extremely confident and hopeful.
next dream is too shrink my lung tumor, through more chemo, taxotere, to
cyberknife possiblities. thank you for organizing this support site. susan
Date October 15, 2003
Name diane steiner
Comments My MRIs are presently at Georgetown U. Hospital preliminary to cyber
knife treatment for a recurrent pituitary adenoma. I am frightened and confident
at the same time, as it is a personal decision and somewhat against the advice
of the doctors at the hospital where I was originally treated (which hospital
does not have a cyber knife). I already have one support person who had similar
treatment to mine with the cyber knife and has only glowing praise for the
treatment and the people at Georgetown. Any other input would be welcome.
Date October 14, 2003
Comments When all is said, life could be oh so much worse. As I cannot rewrite
history ( I guess I am quite limited ), we move forward and am anxiously
awaiting graduations, weddings, ……… j
Date October 11, 2003
Name Susan Fries
Comments I just had Gamma Knife done here in Phoenix at the Barrows Institute
for my acoustic neroma. It is so nice to see a support group like this..I
am thinking of starting one here too! Keep up the good work.
Date October 7, 2003
Date October 7, 2003
Name Brenda McDonald
City West Bloomfield
Comments Please send comments. I have NF2, had FSR at Johns Hopkins (10 fractions)
in Jan for a 3.4 cm acoustic neuroma. I have a 2.9 cm spinal tumor at C4-5,
had surgery in this area 6 years ago and am considering Cyberknife.
Date October 2, 2003
Name Betty Noll
Comments I have a small AN but my hearing and balance is getting worse. I am
considering cyberknife at St. Josephs as they have newley aquired the machine.
Any comments would greatly be appreciated. I am 66 and would like to continue
my life without the dizzyness and loss of hearing and being able to go back
to work. glad to hear from anyone with comments or advice thanks Betty
Date September 26, 2003
Name Sam Carr
Comments I would appreciate your input regarding my uncle who is suffering
from an apparently benign tumor at the sixth or seventh thoracic spine region.
He has received partial radiation and chemotherapy treatment. As I understand,
the tumor is in a position the doctors do not feel they can operate. They
did insert a morphine pump but he is still in a great deal of pain. As of
09/26/03 he is hospitalized in a small town in South Dakota with a perforated
bowel which may be due to constipation as an adverse effect of the morphine.
He is stable at this time(Temp=99, WBC’s elevated, extubated and breathing
with an oxygen mask). Any insight you can share is immensely appreciated.
He is the patriarch of our family, a cross between the Rifleman and the great
basketball player George Mikan. All the info is to paint a picture of how
special this man is to everyone who knows him. Thank you for your time and
Date September 15, 2003
Name Bud Ridenour
Comments Just had Cyber-knife done 7 weeks ago.. Going this Fri. the 19th for
full body CAT scan to see how well it did…. My Dr. at Georgetown Univeristy,
Wash,DC. did not tell me the whole truth about what was going to be done
and I am upset with him over that. But I am thankfull for what they have
done so far…
Date September 13, 2003
Name Tony Teele
Comments Considering using cyberknife at Georgetown Univ Hospital to reduce
a tumor, caused by cancer (Waldenstroms, a form of Non Hodgkins Lymphoma)
around the right kidney. Cyberknife attractive because of the higher doses
possible without collateral damage. Would love to hear from anyone who has
experienced anything like this application. Thanks.
Date September 9, 2003
Name Kari Ricke
Country United States
Comments Great site! I have an avm at T4 in my spinal cord and have not had
it treated. I have been told about the cyberknife as a possible treatment
option. It is helpful to have sites available like this one to further learn
about this procedure. Thank you and God Bless!
Date September 6, 2003
Name Deb Baxter
Comments So glad I found this site. My dad has a meningioma that was operated
on in June of this year that is very large on his brain. He still has a significant
amount remaining and they are talking about gamma knife surgery. So glad
I found this as an option for us to consider and that there is one in Dallas.
I am sendin this info to my uncle in Boston and my cousin is in residency
at Stanford. This info is great and hopefully we will be able to have this
done! Thanks so much.
Date September 4, 2003
Name Earl Moran
City San Jose
Date August 30, 2003
Name Robert Nerling
Country United States
Comments I would like to learn more about the possibility of applying this
concept to my cancer problem. I have pancreatic cancer whereby the tumor
is external to the head of the pancreas but has grown up against the major
blood vessels of the abdominal area. I have underwent a combination of chemo
and radiation therapy and then chemtherapy only. I have been told that the
C T scans show that the tumor has shrunk but not sufficiently to allow surgery
in the "conventional" manner. My tumor markers have decreased to
just under 600 to 126 (latest in August).
Date August 22, 2003
Name Sandra Davis
Comments My son Daniel has a JNA tumor, he has had 7 surgeries and the thing
is still there. Located between his carouted arteries, which makes it very
difficult for surgery anyway, If this last surgery (June 23 2003) still does
not remove it all the Dr. in Denver wants to do the gamma knife. Is this
the same thing as the cyber knife???? Or is the cyberknife more up to date
and better ?
Date August 21, 2003
Comments English interpretation for Antonia’s message: For six years I have
had a Meningioma of the breast that has been cavernous for five years, I
do not want surgery as the way to be cured. In Italy there is the possibility
that a secondary treatment could be with the CyberKnife, but the wait lists
are practically infinite…
Date August 19, 2003
Comments Salve! Da sei anni ho un meningioma del seno cavernoso e da cinque
cerco il modo di essere curata non chirurgicamente. Quì in italia
ci sarebbe la possibilità di essere sottoposta al trattamento con
il ciberknife, ma le liste di attesa sono praticamente infinite…auguri
Date August 17, 2003
Name bill buol
Comments A.N. treatment Stanford Oct-2002
Date August 11, 2003
Name Diane Milewski
Comments I had 5 cyberknife treatments for an agressive growing pituitary tumor
that I had surgery for less than 3 years ago.I was left with residual tumor
that was wrapped around my carotid artery and that was what continued to
grow. I had cyberknife and in 2 months the tumor has shrunk considerabley
already to the amazement of my doctors and myself. I am glad to have made
this choice and hope my tumor continues to shrink or at least stay the same
as it is.
Date August 6, 2003
Comments 4/03 cyberknife to L4,L5 for spread of melanoma. 6/03 NED. No side
effects. Does anybody know of long term side effects?
Date July 27, 2003
Name Marco Marin
Comments Great site! I have a 2.5cm Acoustic Neuroma on the left side, and
I am interested in the Cyber Knife. I would like to hear more about the results
of the procedure and the post-treatment side effects. Thank you.
Date July 13, 2003
Name James Graybeal
City Virginia Beach
Comments Keep me informed about the latest treatments available for Astrocytoma
stage 3. Thank you.
Date June 20, 2003
Name Thaye Young
City Grand Haven
Comments I have a Cervical AVM C3-C8. Have a lot in common with many of you.
Great to see support on this issue!!!
Date June 15, 2003
Name Jessica Zhang
City San Jose
Comments This is a great website. Thanks for sharing your information! I am
interested in stories on treating lung lesion using Cyber Knife.
Date May 30, 2003
Name John Shipley
City Crowley Lake
Comments It is wonderful to see this group — and this website — up and running.
I’ve had both traditional surgery and CyberKnife, and the latter was far,
Date May 28, 2003
City Marco Island
Comments I would like to hear anything re: successful, and non successful cyberknife
surgery, for meningioma. Thank you.
Date May 25, 2003
Name sandi s
Comments Dr. Adler work on my chordoam in may of 2003
Date April 15, 2003
City Cape Coral
Comments So glad to find this site. Would like to hear from anyone who has
undergone cyberknife of a tumor on the 9th or 10th cranial nerve (as opposed
to acoustic on the 8th). I have been a "wait and watch" patient
over the past year and a half, but want to weigh my options. Thanks
Date April 15, 2003
Name Flora McRae
Comments Meningioma or Acoustic Neuroma of Cerebellopontine Angle (More likely
Date February 23, 2003
Name Karen Grzelewski
City New York
State New York
Comments Great site and much needed. I had treatment at Stanford in September
for a 2.7cm AN on the left side. So far, everythings great. Hearing in both
ears still normal and life just continues to get better. Thank to you, Dr.
Adler and to your WONDERFUL colleagues. I couldn’t be happier.
Date February 18, 2003
Comments I’m a 58 yr old male that’s been diagnosed with AN 2cm in January.
I’m very confused on my treatment options. I need to hear from patients that
have had the Cypberknife treatment over 2 years ago or more. I would appreciate
to hear what your symptoms were prior to treatment and what kind of symptoms
you’ve experienced since treatment. Did you maintain hearing? Did the tumor
grow? Where did you receive treament and by what Doctor? I would love to
hear your story. Thanks, Ken
Date January 29, 2003
Name Belen Ale
Country Estados Unidos
Comments I"m Interested in cyber Knife procedure. I’m newly diagnose with
1.9 Acoustic neuroma in my left ear. Please contact me. Do you have a video
splained about cyber machine or/and FSR treatment? Thanks. Belen
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