The Harvard Cyclotron Laboratory
GUEST BOOK and GUEST BOOK LOG
Thank you for visiting
our pages. We would appreciate it if you would
add to our GuestBook.
NOTE: Please
do not ask medical treatment questions here !
These GuestBooks are intended for Patients, Family and Friends
as a way to:
- post information
- post questions
and concerns
- get in touch
with others that have had similar concerns
- or get support
in knowing that there are others with similar problems
But again, Please
do not ask medical treatment questions here if you want a direct
response from us !
If you are
interested in a referral
for a medical opinion you should check out the
MGH Neurosurgical Service referral page or consult
one of the many speciality
pages listed on our site.
We do not
(yet) offer a Web Forum for direct responses to medical
related questions.
THANK YOU!
GuestBook Log
I was treated at the Cyclotron for an AVM in July and again in
September of 1998. I just want to thank everyone there for being
so nice, and doing such a great job. A special thank you to Dr.
Chapman and his team of people who are too many to list !! If anyone
has any concerns or anxieties about being treated at the cyclotron,
please feel free to e-mail me...and I'll help in any way I can.
I had someone help me through some things before I went ( thanks
Laurie) and it helped allot!!
Katherine Graham-Schmidt <kateman_AT_renc.igs_DOT_net>
Ontario, Canada - Tue Nov 10 20:48:34 1998
One of my twin
4 week old daughters had a shunt operation yesterday and I was gald
to find your page on Hydrocephalus.
David Kierans <dkierans_AT_iol.ie>
Wicklow, Ireland - Sat Nov 7 15:19:55 1998
Diagnosed with
melanoma of the eye 1/98 . Proton beam treatment 2/98 I would like
to Thank Dr.Gragoudas and everyone at retina services and HCL. for
helping me. God bless. P.S EYE FEEL FINE . mark o'connor
Mark O'Connor <moconnor03_AT_snet
_DOT_net>
East Windsor, CT USA - Tue Oct 27 19:03:04 1998
i thank you very
much for having so much information available. i am learning all i
can about brain tumor tx karen
karen fritz <kfritz1045_AT_aol_DOT_com>
akron, oh USA - Fri Oct 23 0:35:38 1998
Recently diagnosed
with GBM Grade 4 tumor (9/98); Had resection on 9-16-98, but as yet
have had no treatments; Would proton beam therapy be a good way to
go for me?
John Sullivan <JSullNFCL_AT_aol_DOT_com>
Houston, TX USA - Thu Oct 22 8:25:35 1998
I am visiting
these pages to learm something about proton beam treatment for acoustic
neuroma.
Audra Bradshaw <rosarosa_AT_swbell_DOT_net>
San Antonio, TX USA - Thu Oct 22 1:29:47 1998
Am looking for
information for my mom as she continues her battle with a schwannoma
tumor on the spine. Surgery was a year and 1/2 ago. Any new treatments
out there? Research? Thank you
Amy Heinl <aheinl_AT_bu_DOT_edu>
Boston, MA USA - Sun Oct 18 16:52:21 1998
Am looking for
information for my mom as she continues her battle with a schwannoma
tumor on the spine. Surgery was a year and 1/2 ago. Any new treatments
out there? Research? Thank you
Amy Heinl <aheinl_AT_bu_DOT_edu>
Boston, MA USA - Sun Oct 18 16:51:49 1998
glad to find your
web page. need to get info on proton therapy for prostate cancer diagnosed
as gleason 4. thanks for any and all info.
jack plimpton <jplimpton_AT_juno_DOT_com>
flagler beach, fla USA - Tue Oct 13 22:23:50 1998
Had a macro adenoma
in pituitary gland operation 9 21 98. They want to irradiate.
claudette dupont ginsberg <schveety_AT_aol_DOT_com>
matawan, nj USA - Tue Oct 13 17:13:34 1998
Had a macro adenoma
in pituitary gland operation 9 21 98. They want to irradiate.
claudette dupont ginsberg <schveety_AT_aol_DOT_com>
matawan, nj USA - Tue Oct 13 17:13:30 1998
looking for info
on ocular melanoma that has metastisized to both lungs. thank you.
veronica e. crook <crook_AT_javanet_DOT_com>
litchfield , ct USA - Tue Oct 6 12:39:54 1998
My father has suffered
from an enhancing intramedullary mass lesion extending from the cervical
medullary junction to C3-4, extending into a syrix down to the level
of C7. Pathologic diagnosis for the tumor is "Low grade Astrocytoma."
Previous attempts to remove the tumor were unsuccessful and our hope
is fading. Would love to hear from anyone with information on successful
treatment of similar ailment.
Jimmy Ray <jimmy.ray_AT_mci_DOT_com>
McKinney, TX USA - Mon Oct 5 12:03:13 1998
Is there any treatment
for PARALISIA BULBAR ( it's called like that in portuguease) ?
Déborah Callou <deborah_AT_netcariri_DOT_com.br>
Juazeiro do Norte, CE Brazil - Sun Oct 4 13:49:57 1998
My husband received
excellent care while receiving treatments.Also Hope Lodge was wonderful
to us during our stay.
Mrs. Donald Spaid
Orangeville, PA USA - Thu Sep 24 12:53:40 1998
Yo he tenido 2
operaciones del cerebro debido a un meningioma (marzo-1995 y febrero-1998)
y al parecer todavia quedan residuos de menigioma. solo estoy revisando
informacion en internet sobre este problema que padezco. Mis condiciones
fisicas y mentales son buenas, solo de vez en cuando padezco alguna
convulsion.` gracias chuy
Jesus Martinez Coronado <chuy_AT_math.cinvestav.mx>
Mexico, DF Mexico - Sun Sep 20 22:51:19 1998
I hope to become
a neuro surgeon.
Mike Goodman <mybranhurt_AT_aol_DOT_com>
Clearwater, FL USA - Wed Sep 16 22:31:52 1998
Recently Dx PCa
and am looking for the best therapy available, not only for the cancer
(Gleason 3+3, PSA 9.5) but to minimize potential complications to
bowel as a result of Crohn's Disease with rectal complications (fistulae,
absesses, etc.) Hopkins trained Urologist suggested I look into seeding
as he felt EBRT would be too harsh in light of my surgical history
(several surgeries on lower abdomen including anal and rectal fistulotomies.
Stanley R. Eisele <teely49_AT_aol_DOT_com>
Santa Barbara, CA USA - Thu Sep 3 1:03:04 1998
My brother has
Adonia Carcinoma' which in this case is a cancer semi-localized and
pushing on his spinal cord , which left him a paraplegic, his cancer
is by T4 vertebra, If can anyone give me info on this subject in relation
to proton beam radiosurgery or related treatment this would be greatly
appreciated.
Marsha Hughes <spb1_AT_erols_DOT_com>
Baltimore, MD USA - Wed Sep 2 9:14:11 1998
26 year old female
with chordoma located in C4 vertebrae. I had surgery to remove it.
Now, after a year it has come back. Would like to hear if anyone else
has had a similar situation. Also information on proton therapy.
Melissa Kendall <Raivenwood_AT_aol_DOT_com>
So. Woodstock, VT USA - Tue Sep 1 21:04:57 1998
26 year old female
with chordoma located in C4 vertebrae. I had surgery to remove it.
Now, after a year it has come back. Would like to hear if anyone else
has had a similar situation. Also information on proton therapy.
Melissa Kendall <Raivenwood_AT_aol_DOT_com>
So. Woodstock, VT USA - Tue Sep 1 21:03:28 1998
Chordoma patient
Melissa Kendall <Raivenwood_AT_aol_DOT_com>
So. Woodstock, VT USA - Tue Sep 1 20:50:52 1998
I have a brain
stem epidermoid tumor. It originates in the pre-pontine cistern, partially
encases the basilar artery, and touches the 8th nerve. I was wondering
if anyone with an epidermoid has been treated with a Cyberknife. Thanks.
AS
A.S.<>
USA - Thu Aug 27 15:09:39 1998
I had proton therapy
back in Dec 1973. I want to thank Drs Kjellberg and Kliman for their
excellent work.
Joe Robson
Live Oak, FLI had USA - Thu Aug 27 11:23:28 1998
Diagnosed 5/98
of beign meningioma on brain stem, approx. 3 x 3 x 5 cm. Only symptom
now is mild numbness on left face. Surgery seems too risky. Exploring
radiosurgery. Modified linear accelerator a possibility. Ptoton Beam
better choice?
Pearl Babcock <babfam_AT_whro_DOT_net>
Williamsburg, VA USA - Sun Aug 23 14:44:34 1998
I am looking for
information about Cordoma's of the brain. My husband tumor is back
and can't be remove it is wrapped around the main artery. Looking
for help please.
Ruby Willis <jvance>
Carrollton, ky. USA - Thu Aug 20 14:08:44 1998
I was a patient
of Dr. R.Kjellberg way back in december of 1981. I had been hospitialized
twice with an A.V.M at the age of 17/18. And with the assistances
of a Dr. Richard Pearl in Smithtown, Ny he had me sent to MGH for
the proton therapy. If we (my mother and I) had listen to him the
first time there never would of been a second time. It's been 17 years
now and as Dr. Pearl has told me I am normal. I have MGH, Dr. Kjellberg
and Dr. Pearl to thank for it. I also want to add, that it has to
be one of the easiest ways to correct such a life threatening problem.
I was in the hospital overnight, no pain. Getting a tooth pulled has
more pain. Anyway THANKS for everything!!!!
Donna Potter-Salituri <dsalituri_AT_webtv_DOT_net>
Hauppauge , NY USA - Wed Aug 12 19:55:12 1998
please add to mailing
list: Amer J. Dodge 315 W. Third St. Marysville, Ohio 43040
Amer J. Dodge
Marysville, oh USA - Thu Jul 30 19:39:13 1998
diagnosed with
myofasial pain syndrome 2 yrs ago. Am looking for someone with more
experience with this. Want to stay in shape physically, but am not
sure how.
Carole <jbl_AT_cconnect_DOT_net>
USA - Tue Jul 28 18:16:41 1998
I am researching
the possibility of Proton Therapy for my three year old son Nicholas.
He has two Pylocytic Astrocytomas in dificult areas to treat. Thanks
for the information.
Robert Banner <bannerbob_AT_aol_DOT_com>
West Palm Beach, FL USA - Thu Jul 16 21:56:17 1998
I just want to
do a update. They think my husband's cordoma is back It has been almost
2 years since his first surgery. I would still like to keep in touch
with someone that has the clival cordoma of the brain.
Ruby Willis <jvance_AT_kih_DOT_net>
Carrollton, Ky. USA - Thu Jul 2 14:30:56 1998
Thank you for nice
homepage for particle theraphy. I would like to have valuable information
from the Newsletter.
koichi nakayama <koichi.nakayama_AT_toshiba.co.jp>
yokohama, kanagawa JAPAN - Wed Jul 1 21:00:35 1998
Thank you for nice
homepage for particle theraphy. I would like to have valuable information
from the Newsletter.
koichi nakayama <koichi.nakayama_AT_toshiba.co.jp>
yokohama, kanagawa JAPAN - Wed Jul 1 21:00:16 1998
Could you please
explaim me what's a brain angiom?
Antonio Pepe Varela <pepe_AT_embratel_DOT_com.br>
Rio de Janeiro, RJ Brazil - Mon Jun 29 14:21:03 1998
asdfasdf
asdfsadf <dfasdf>
asdf, df USA - Sun Jun 28 23:53:54 1998
On behalf of Hitachi
Ltd, Japan, I am researching the possibility of establishing a proton
beam therapy facility in Australia. I work for Hitachi Australia.
The plan is in its embryonic stages only. I am seeking information
from Loma Linda and Boston as to how their facilities began - such
as funding etc etc. Look forward to some information.
Sue Bleasel - Hitachi Australia <sueb_AT_hitachi_DOT_com.au>
Sydney, NSW Australia - Thu Jun 25 21:19:47 1998
Last week, my mother
found out she has a chordoma at the base of skull. I was visiting
for information. Appreciate the comments and information available.
Plan to visit some more.
Sidney Torres <Sid Torres_AT_aol_DOT_com>
Loma Linda, CA USA - Mon Jun 22 3:16:43 1998
My husband has
an AVM and he has had 2 proton beam treatments If anyone wants to
talk about AVMS or ask any questions about proton beam treatments.
Please feel free to contact me at: Rebslady1_AT_skybest_DOT_com or
at Rebslady1_AT_aol_DOT_com thank you and god bless. Linda Widener
at Rebslady1_AT_skybest. com or at Rebslady1_AT_aol_DOT_com.
LInda Widener <Rebslady1_AT_aol_DOT_com>
Sparta, NC USA - Fri Jun 19 15:32:24 1998
To HCL, Your guest
book is wonderful very informative.My husband had 2 proton beam treatments
in dec,94 and jan95.He's doing real well. The avm is almost gone now.
Thank you everyone atHCL. especialy Dr.Chapman and Dr.Ogilvy. If anyone
wants to talk about AVMs please contact me. Linda Widener at Rebslady1_AT_skybest_DOT_com
Linda Widener <Rebslady1_AT_skybest_DOT_com>
Sparta, NC USA - Fri Jun 19 15:14:25 1998
My wife, Monica,
has an benign adenoma in the hypotalamus. Causing acquired growth
hormone defficiency. I wander if it could be treated by proton Radiosurgery
and how much does it cost. I also want to know how to get the hormone
replacements. We live in Piura Peru. email: egallo_AT_udep_DOT_edu.pe
Best Regards
Ernesto Gallo <egallo_AT_udep_DOT_edu.pe>
Piura, PE Peru - Wed Jun 17 9:51:39 1998
My father has an
AVM first found in 1973 that has caused seizures since 1954 controlled
with phenobarbital and dilantin until recently. He now has new type
of seizure causing loss of sensation in left side of face and down
left arm. Recent MRI revealed "small leak" in AVM. One treatment
suggested was GAMMA KNIFE. Would like to hear from anyone who has
had similar experience, especially if you have undergone GAMMA KNIFE
treatment. Please describe treatment, side effects, success or failure
of treatment, and any other information you feel might be valuable
to us. He meets with the neurosurgeon next week. Today is 6/12/98.
Would appreciate anyone's help.
Debra McDaniel <ddmcdaniel_AT_aol_DOT_com>
Kansas City, KS USA - Sat Jun 13 0:43:44 1998
Hi there
Ewan <SLDENTAL_AT_AOL_DOT_com>
Wakfield, UK - Thu Jun 11 12:47:35 1998
My husband went
to Thomas Jefferson Univ. in Phila. and had surgery to remove a grade
2-A chondrosarcoma from his spinal cord. The oncologist said he would
usually do radiation treatments but because of the location of the
tumor it was too risky (would do severe damage and cause paralysis.
I was cruising the web searching for info on this condition and found
this site. Has anyone had proton beam treatment for a similar condition?
We want to do everything we can to treat this condition while it still
appears to be manageable. Please respond if you have info.
Jane Richards <jandj_AT_dplus_DOT_net>
Lansdale, PA USA - Sun Jun 7 20:24:48 1998
Just starting the
journey.... too many qustions at this point rather overwhelming right
now
Maureen Shea <rn4u_AT_surfxpress_DOT_com>
Clifton, N.J USA - Tue Jun 2 2:14:36 1998
My husband diagnosed
w/glioblastoma multi in Nov.97 had surgery, near total resection followed
by 35 trtmts. radiation and now receiving chemo/BCNU. First MRI showed
it shrinking. They will repeat MRI in 8/98, if its not gone they are
talking about doing gamma knife. I have read about this proton beam
therapy and want to know advantages over the gamma knife. PLEASE HELP!!
SHIRLEY <smccarth_AT_glccomputers_DOT_com>
gladwin, mi USA - Sun May 24 13:10:56 1998
Suffering from
anterior MEDIASTEINAL GERM CELL TUMOR, chemotherapy has failed. Proton
therapy seems Ideal. Seeking advice from survivors or physicians.
Lloyd <novasoftwp_AT_aol_DOT_com>
White Plains, NY USA - Sat May 23 16:55:33 1998
I have had 2 recent
embolization sessions at University of Alabama in Birmingham, AL.
I need to have more and after the last 7 hr session, I am scared to
sign my name for more of the same. Have you heard of such a whiner?
I am working on my attitude and trying to be thankful for getting
help. I need some encouragement right now, usually I am a very positive
person but this head pain is getting to me!
Gloria R. Smith <GSmith6139_AT_AOL_DOT_com>
Decatur, AL USA - Wed May 20 12:50:09 1998
My address is 1112
Webster Street, Carrollton, Ky. 41008 My husband had surgery in Sept.
96 and it was cordoma cancer of the brain so far it has not come back
but he has trouble with his eyes he sees double and they just keep
changing his glasses and some where down the road he will have to
have his eyes operated on to straight back out. I would really like
to stay in contact with someone that is having the same trouble. Thank
you!
Ruby Willis <jvance_AT_kih_DOT_net>
Carrollton, ky. USA - Mon May 18 11:41:07 1998
I would like to
keep in contact with some that has Cordoma cancer of the brain. My
husband had surgery in Sept. 96 and this cancer is so rare that I
can't find out much about it Please help?
Ruby Willis <jvance_AT_kih_DOT_net>
Carrollton, ky. `USA - Mon May 18 11:34:47 1998
In 1988 I received
treatments at your facility for chordoma in the fifth lumbar vertabrae.
So far the tumor has not returned. We were treated very good by the
personnel at the clinic and thankful there is treatment such as this
available for people.
Norvil W. & Joyce Salter <rainer_AT_net1inc_DOT_net>
Evergreen, Al USA - Fri May 15 15:14:44 1998
Was just surfing
the net and found your page. Thanks for all the good info.
Ed Lawton <ClarkAB_AT_aol_DOT_com>
Fairfax, VA USA - Sat Apr 25 11:33:15 1998
Thanks for a very
informative site. My 54 yr old sister has just been diagnosed with
a 2-3cm AVM near the motor neurone area of her brain. This diagnosis
followed a 'grand mal' seizure in December '97 and subsequent MRI
and Angiogram. The specialist has recommended surgery, as the her
only treatment, which will occur within the next two weeks. He mentioned
to my sister that following sugery, she may experience some temporary
behavioural problems. What does this mean? As I will be her carer,
what can we (her and I) expect after the operation. How long will
it take her to feel OK? Will the metal plate she has to have in her
head affect her in other ways? Can anyone help me please?
Creina Phillips <email:creinap_AT_cae1.cae_DOT_edu.au>
Melbourne, VVVIC AUSTRALIA - Wed Apr 15 4:07:06 1998
Great site thankyou.
My 54 yr old sister has just been diagnosed with a 2-3cm AVM on the
motor neurone area, this diagnosis, came about from an MRI which was
done following a 'grand mal' seizure in December. The specialist has
told her that only treatment for her AVM would be surgery, which will
occur within the next two weeks. The doctor has told her that there
might be some temporary behavioural problems after surgery, but did
not say what. As I will be her carer after the operation, could someone
tell me what I might expect, not just with behaviour but generally,
following such a procedure? Appreciate any feedback. Thankyou
Creina Phillips <creinap_AT_cae1.cae_DOT_edu.au>
Melbourne, Vic Australia - Wed Apr 15 3:32:31 1998
Thanks for such
an informative page. My 54yr old sister has just been diagnosed with
a 2-3cm AVM located near the motor neurone, after having 2-3 seizures
in the last 1-2yrs. Specialist has recommended immediate surgery as
the only treatment. Can anyone tell me what to expect after the operation,
as I will be her carer. The doctor has told her that there might be
some temporary behavioural problems, following surgery, but did not
say what. She will be admitted into hospital within the next one to
two weeks. Can anyone help me please so I know how to help my sister.
Thankyou
Creina Phillips <creinap_AT_cae1.cae_DOT_edu.au>
Melbourne, Vic Australia - Wed Apr 15 3:04:24 1998
My son has a Rhabdoid
brain tumor in the posterior fossa. He is currently undergoing chemotherapy
and has, also, completed 33 radiation treatments. I'm trying to find
out more info. regarding stereotactic radiosurgery. This is a new
option we are currently looking into. He has done very well with the
chemo but due to the nature of this tumor and the possibilty of growth
to begin..we are looking into other treatments.
Karen Stair <mstair_AT_early_DOT_com>
PA USA - Wed Apr 8 13:40:01 1998
I have been diagnosed
with an AVM in the left thalamus & proton-beam radiotherapy has
been recommended as my only choice of treatment for it. I would like
to hear from anyone who has had this treatment for a similar AVM and
am interested in how you felt though it, for how bad any possible
side effects were after the treatment. Has there been success in eliminating
or decreasing your AVM and were the side effects worth the results?
I'm scared. My treatment is scheduled for 05-98.
Laurie Jenkin-Burt <DalmatinLL_AT_Aol_DOT_com>
Marblehead, MA USA - Sat Apr 4 11:23:47 1998
Thank you, thank
you, thank you. This home page is great. Thank you also to the staff
at MGH/HCL (especially Dr. Liebsch, Elliott, Ena, Pat, and EVERYONE!)
and HOPE Lodge. YOU ARE FANTASTIC! My husband has chordoma and was
treated in the fall of 1997 in Boston. The support is fabulous and
we appreciate everyone's expertise, support, and warm hospitality.
Jeff & Cindy Green <Greenkazoo_AT_aol_DOT_com>
Kalamazoo, MI USA - Sat Apr 4 8:05:25 1998
I'am ENT doctor
but also a patient!!! I have an hyper nephro-carcinomas. I'm actually
treated With normal particles accelerator + Interferon with a certain
stabilisation. Do you think proton therapy could help anyway to kill
the mother tumor that is located OUTSIDE de nephro??? Any information
will be appreciated. Dr FELTGEN ENT MD Rue du Tabellion, 58 B 1050
BRUSSELS - BELGIUM E-mail feltgen.orl_AT_club.innet.be Thank you very
much for your answer.
Dr FELTGEN ENT <feltgen.orl_AT_club.innet.be>
Brussels , BELGIUM - Wed Apr 1 10:33:34 1998
Thank you so much
for your wonderful site. My daughter was diagnosed with "Cushings
Syndrome," and is scheduled for a Bilateral Inferior Petrosal
Sinus Sampling on March 31st at Shands Hospital in Gainesville, FL.
Had I not found your site and downloaded information on this condition,
I would be unable to ask the questions that need to be asked prior
to and after her procedure. Although the infomation is a bit "heady"
for a non-medical person, I feel I have a grasp of how this procedure
is done, the complications that could occur and what the next step
will be. I was diagnosed with NHL in August of '94, so I have learned
a great deal about cancer and because of the information on your pages
and others, I began a Cancer Support Group that has precipitated into
two patients being accepted at the NIH for their test vaccine program.
Those of you who contribute to the information given on this website
may never know the positive effect you have on patients and family
and I would like to thank you for your wonderful gift of knowledge.
May God truely bless you all! Dottie
Dottie Hardage <Mandarin_AT_mediaone_DOT_net>
USA - Mon Mar 23 14:08:09 1998
My 6 yr old daughter
has a low grade astrocytoma. Her Thalamus is about twice it's normal
size. The neurosurgeon tells us that surgical removal is not an option.
Does anyone have info on this type of condition? I have yet to see
the pediatric oncologist, but I just can't sit and wait. The only
symptoms we have seen so far are tremors in her hands,weakness in
her legs and arms, fine motor skills are slightly affected mostly
on the left side,and she has emotional outbursts on occasion. I am
scrambling for info to understand this illness and how to cope with
it especialy in trying to help her two brothers Robert(10) & Christopher(9)
&sister Hannah(16MO). Thank you for listening.My prayers are with
all of those who have been aflicted, and your families . Matt McGinnis
Matt McGinnis <MMcgin_AT_aol_DOT_com>
Las Vegas, NV USA - Sat Mar 21 1:36:18 1998
I have a Grade
2 going 3 astrocytoma. I have had three surgeries. Please advise if
you have experience in successful teatment using radio or alternative
therapies.
Norm Klaus <beer_AT_sprint.ca>
Edmonton, AB Canada - Wed Mar 18 17:56:42 1998
Thanks to the entire
staff for their wonderful treatment we received in Feb while Erik
underwent his Proton Beam therapy. You all did very well at comforting
the nervous parents (us) & keeping Erik busy while we talked.
The trip home was long, but safe. Erik is suffering more frequent
(almost daily) and more severe headaches, but other than that he's
doing quite well. The first week back he only went to school part-time,
but he handled that fairly well & we expect that he will be going
full-time next week. Thanks again for giving us hope! We're very anxious
for August and his first MRI. Scott & Deanna Hough
Deanna Hough <houghdeann_AT_aol_DOT_com>
Perrysburg, OH USA - Wed Mar 11 19:28:45 1998
Please send information
to me re: PTCOG memebership. I have presented at PTCOg in the past.
Alan E. Morrison <amorrison_AT_zaconsulting_DOT_com>
USA - Sun Mar 8 20:12:57 1998
I'm an acromegalic
currently involved in a drug study in Chicago with a new drug called
lanreotide. I've been in the study for 6 weeks now and my GH and IGF-1
are unchanged. ( currently 2.6 GH / 710 IGF-1). I'm writing to you
to see if I can participate in any possible studies involving proton
beam therapy. I have residual tumor (had transphenoidal surgery Nov.
1., 1996) located in the cavernous sinus area approx. 1 cm in size.
I was told by my neurosurgen that he cannot operate again due to location
of tumor mass. Due to the fact that I have no response to the Lanreotide
study, I have no recourse but to look at irradiation of the tumor.
I look forward to your reply. Thanks
Michael Ryan <focuspromo_AT_aol_DOT_com>
Evanston, IL USA - Sun Mar 8 13:17:56 1998
Wish there was
more articles of Vein of Galen Malformations.
Trina Murry <almoret_AT_eagnet_DOT_com>
USA - Sat Feb 7 16:03:29 1998
TO DR. N. LIEBSCH!
Finally, I have found a way to contact you on the internet! I just
wanted to say that I am doing very well here in Omaha, doing fine
in college. I can't believe it's been 8 years! Thank you!
Lori Jones <ljones_AT_mail.graceu_DOT_edu>
Omaha, Ne USA - Thu Feb 5 20:53:38 1998
I would like to
find out if my neurologist was sending my progress to Dr. Ogilvy to
keep him informed of what is know with my right arm _AT_ hand. So
he can tell me if there is anything I can do for it ,like (therapy)
. With out jeopardizing me so my Neurologist would stop seeing me,an
thing I was checking up on him . Because I didn't think he was doing
a good job by not keeping Dr. Ogilvy informed of what's happening.
If I 'am wrong what do I do?
George
Southbury , Ct USA - Thu Jan 29 9:08:52 1998
I would like to
find out if my neurologist was sending my progress to Dr. Ogilvy to
keep him informed of what is know with my right arm _AT_ hand. So
he can tell me if there is anything I can do for it ,like (therapy)
. With out jeopardizing me so my Neurologist would stop seeing me,an
thing I was checking up on him . Because I didn't think he was doing
a good job by not keeping Dr. Ogilvy informed of what's happening.
If I 'am wrong what do I do?
George
Southbury , Ct USA - Thu Jan 29 9:07:15 1998
In (94) i had a
AVM _AT_ a ANEURYSM .The AVM wasdon HCL an today my Neurologist said
it was gone. I would like to know if they can use the proton beam
on it or when they closed the AVM will it slow down the flow of bloodto
the ANEURYSMso it will take the pressure off it so it will not pop.
GEORGE <YAHTZEE2 _AT_WEBTV.
NET>
Souther , Ct. USA - Thu Jan 29 8:09:22 1998
Very informative
site. Thanks very much. The advancement in medicine never ceases to
amaze me.
Mary L. Davis, RN <mld717_AT_aol_DOT_com>
Phelan, CA USA - Wed Jan 28 19:39:48 1998
I am researching
information and treatment modalities for my sister who has just been
diagnosed with ANGIOLIPOMA, INFILTRATING TYPE. Please help!
Oystein Vagsholm <ov196_AT_soton.ac.uk>
Southampton, England - Tue Jan 27 13:36:40 1998
I am currently
a graduate student who is going to acquire a Master of Science degree
in summer of 1998 in the Nuclear Engineering Department of Massachusettes
Institute of Technology. I am now seeking job opptunities in the research
area related to proton therapy. It would be wonderful if I could have
any chance to talk to Japanese, if any, stuff who is working at your
project. I am rather interested in the biomedical effect of radiation
than the hardware build-up. I would appreciate it if you give me any
post information. Sincerely, Aiko Ishikawa aiko_AT_mit_DOT_edu Graduate
Student of Nuclear Engineering Department Massachusetts Institute
of Technology tel(home): 617-354-3504 tel(office): 617-258-0752
Aiko Ishikawa <aiko_AT_mit_DOT_edu>
Cambidge, MA USA - Sat Jan 10 10:58:41 1998
Your guest log
is very nice. Good job.
Michael Moyers <MMoyers206_AT_AOL_DOT_com>
Loma Linda, CA USA - Thu Jan 8 22:19:09 1998
my step daughter
has a grade 3 anaplastic astrocytoma see is thirty years old and we
are lookin for information thank you
george piljay <gpiljay_AT_
aol_DOT_com>
oakland, ca USA - Wed Jan 7 2:57:02 1998
I was diagnosed
with hydrocephalus at 6 months and had a VP shunt placed. Now I'm
15 and doing good, hardly had any problems.
Ashlee <Ashaweanie_AT_aol_DOT_com>
IA USA - Mon Jan 5 18:58:46 1998
I am 15 and was
diagnosed with hidrosypholis when I was 6 months old. I had a shunt
put in and have had no other problems since.
Ashlee <Ashaweanie_AT_aol_DOT_com>
IA USA - Mon Jan 5 18:51:21 1998
I am a former Cyclotron
patient and it's been almost a year and a half since I underwent proton
beam therapy. I have since had a little girl and she is almost 10
months old.
Donna A. Fisher <Donrayhan_AT_aol_DOT_com>
Pasadena, MD USA - Thu Jan 1 16:42:29 1998
I have a almost
4 year old daughter who has a hypothalamic hamartoma. I am interested
in any information on how any new treatment method may be a option
for resection. Currently she has seizures about every 30 minutes due
to this tumor, and we have found no antieptileptic drug for treatment.
I have helped organized a support group with about 14 other families,
with the similar scenarios. Daryl.Rue_AT_Entex_DOT_com or Daryl.Rue_AT_Juno_DOT_com.
Just wanted to throw this out there. Thanks for listening.
Daryl Rue <Daryl.Rue_AT_Entex_DOT_com>
Omaha, Nebraska USA - Tue Dec 30 17:38:47 1997
Updated email address
from previous posts. Thanks.
Ron R <rsqr_AT_gte_DOT_net>
Derby, KS USA - Sat Dec 27 8:35:36 1997
My wife Deborah
has been diagnosed with an AVM and will be treated by Proton Radiation
in March.
Bart Navarro <modman_AT_ziplink_DOT_net>
Andover, MA USA - Thu Dec 25 18:00:14 1997
Perhaps my remaining
meningioma can be treated with the "Cyberknife" method of
radiotherapy? This benign mass was partially resected surgically.
After one year, neurology complications remain due to the tumor's
location. It was located above and around the brainstem, a surgical
no-man's land. Twenty-five percent was left behind. Does anyone understand
the use of this procedure for this type of problem? My hopes and my
thanks. Charles Bradley Tolland, Connecticut
Charles F. Bradley <chas2000_AT_erols_DOT_com>
Tolland, CT USA - Thu Dec 25 15:53:33 1997
Beginning proton-beam
radiation for brain tumor. Need some support. Please e-mail with any
suggestions.
sharon murphy <china4988_AT_aol_DOT_com>
malden, MA USA - Wed Dec 17 12:21:16 1997
I read about proton
beam therapy for macular degeneration and would like to get more information.
Norma Lamberg <eslnl_AT_worldnet.att_DOT_net>
Kailua, HI USA - Mon Dec 8 14:03:47 1997
To Georgann- not
sure this is what you are referring to: Cyberknife surgery--the script
of the TV show including Drs names is at http://www.thesite_DOT_com/0897w4/life/life794jump5_082097.htmlhttp://www.thesite_DOT_com/0897w4/life/life794jump5_082097.html
The website of the cyberknife is http://www.thesite_DOT_com/0897w4/life/life794_082097.html
Hope this info is beneficial.
Ron R <rsqr_AT_fn_DOT_net>
Derby, KS USA - Fri Dec 5 20:32:05 1997
thanks for all
the information. My brother has a right frontal astrocytoma. He had
a boipsy with many complications. Now, they have told us it has grown
and is unoperative. I want more info. Did any of you see the TV show
about 6 months ago it was like medicine 2000. It talked about a brian
tumor removal where they go under Cat scan and remore but with a machine
that is like the virtual reality game. I want to know what kind of
brain tumor the lady that was operated on had, and the name of the
physcian that performed the procedure. Did any of you see this show?
please write me if any of you have information on this subject I would
really appreciate it. Thank You Georgann
georgann <ara_AT_kcnet_DOT_com>
kansas city, mo USA - Fri Dec 5 10:15:24 1997
I am a pancreatic
cancer victim. Hopefully Proton beam therapy will find an application
against this killer.
Tony C. McFaddin <tmcfaddi_AT_mail.bcpl.lib.md.us>
Marriottsville, Md USA - Wed Dec 3 19:56:11 1997
I received proton
beam treatment from April 95-June 95 for a chondrasarcoma. My mom
and I stayed at Hope Lodge in Worcester. Hello to all that we met
during our stay. All tests have been positive, and I am doing well.
Kristen Groves-Piva <kpiva_AT_mail.hillsboro.k12.mo.us>
Arnold, MO USA - Thu Nov 27 0:18:30 1997
Hello,, I was treated
here at HCL in 91 for 6 cm. AVM and had successful surgery to completely
remove it in 96. Thanks Dr.'s Chapman and Ogelvy!!!! P.S... Was I
dreaming or do you guys use water balloons?????
Georgeana Wing <Georgeana2_AT_aol_DOT_com>
Cape Cod , MA USA - Mon Nov 24 22:15:09 1997
My 26 year old
son has been diagnosed with a low-grade ANAPLASTIC ASTROCYTOMA, a
mixed glioma. It doesn't seem to fall into the regular categories
because it is very diffuse, but very slow growing. It is in about
2/3 of the left side of his brain so it's not considered operable..
Anyone out there with a tumor similar to this?
Karen West <kwest_AT_mastnet_DOT_net>
Brazoria, tx USA - Thu Nov 20 8:44:56 1997
I had Partial removal
of Angiolipoma Thoracic Spine..Still having terrible pain higher than
and including surgical site. MRI's show I am now "decompressed"but
residual tumor involving anterior epidural space, the lateral epidural
and the thoracic nerve roots. Epidural angiolipomas are rare,:Any
suggestions frm the Cyclotron Lab? I'm on disability and would prefer
Not to be...Also, take 5/500 hydrocodone for pain...Thks for any input..J.G.
Judy Goodwin <Satie1037>
Fl USA - Wed Nov 19 12:22:01 1997
Fight the good
fight. No one else can do it for you, and remember, never, never give
up. God Bless all of you
Maria Di Meglio <maria1034_AT_aol_DOT_com>
Alameda, CA USA - Wed Nov 5 21:36:36 1997
Just adding my
address
Karen West <kwest_AT_mastnet_DOT_net>
Brazoria, TX USA - Sun Nov 2 13:20:44 1997
My 26-year-old
son has a possible astrocytoma. I'm looking for any information I
can get about this condition.
Karen West
USA - Sun Nov 2 13:18:25 1997
My wife was treated
by Dr. Kjellberg in 93 for a large cerebral AVM. Followup scans show
that it has not significantly reduced in size. We are considering
embolization at Stanford. Seizures are in control with Tegretol. No
other adverse symptoms so it's tough deciding to do embolization.
Appreciate your site and opportunity to email others with similar
experiences.
Ron R <rsqr_AT_fn_DOT_net>
Derby, KS USA - Sat Nov 1 0:23:50 1997
Very informative
site!
Bill Barnes, Acceletronics,Inc.
<zz2c_AT_aol_DOT_com>
Germantown, MD USA - Sun Oct 26 13:45:48 1997
Underwent proton-beam
therapy for clival chordoma in Feb/March '95. This is to update e-mail
address. New address is spark_AT_dwx_DOT_com
Ed Lowe <spark_AT_dwx_DOT_com>
Ankeny, IA USA - Sat Oct 25 20:38:36 1997
Greetings from
another proton therapy cyclotron!
Kent English <English_AT_Crocker.UCDavis_DOT_edu>
Davis, CA USA - Tue Oct 21 18:09:37 1997
Greetings from
another proton therapy cyclotron!
Kent English <English_AT_Crocker.UCDavis_DOT_edu>
Davis, CA USA - Tue Oct 21 18:09:34 1997
Cancer Support
Chat Moderator - interested in any info you have on cancer, chemo
drugs & radiation with cancer.
Peggy Hendricksen <EQKF33D_AT_prodigy_DOT_com>
Valrico, FL USA - Sat Oct 11 0:26:56 1997
My wife who is
34,just had a mass removed from her her right frontal lobe.The path
report came back saying it is a well defined Oligodendroglioma(No
other mixed cells whatever that means) .The surgeon is extremely confident
that he got all of the tumor and we are unsure what our next step
should be.We would really like to hear from anyone who has been through
this or who has any information or support.
Paul Lindenfeld <RITE12_AT_aol_DOT_com>
Trenton, NJ USA - Wed Oct 8 9:35:19 1997
7yo son diagnosed
with AVM after severe bleed in 8/97. No previous symptoms. Looking
for any & all info on pediatric AVMs. Son will have proton treatment
in 12/97. Web site is very informative, however I must agree with
others that this portion is very difficult to read with the maroon
background. Also, do you have a profile on Dr. Loeffler?
Deanna (Erik's mom) <houghdeann_AT_aol_DOT_com>
Perrysburg, OH USA - Sun Oct 5 23:35:06 1997
1 year survivor
of a nevus melonoma, just wanted to say thanks. God bless
John Humphrey <jh60242_AT_navix_DOT_net>
Auburn , NNE USA - Sat Sep 27 21:45:48 1997
My 69 yo father
in Miami was recently diagnosed with a sacral chordoma and is seeking
the closest area to either Miami or Houston for Proton Beam Therapy.
Any referals would be appreciated. Thank you
Jeffrey S. Williams <jswill_AT_smart1_DOT_net>
Houston, TX USA - Fri Sep 19 11:03:14 1997
My son recently
passed away from a Chordoma Brain Tumor. I am starting a research
group in connection with MGH. My immediate goal is to set up a support
group for patients and their families. Anyone interested can contact
me at 462 Clearbrook Road, Orange, CT 06477 or E-Mail at my friends
home.
Barbara Moscovics <BonChink_AT_aol_DOT_com>
Orange, CT USA - Tue Sep 2 21:19:26 1997
Had surgery for
a invasive pituitary adenoma in 1978 Prolactin level at that time
over 1000, have been taking 10mg Parlodel daily since 78. Had visited
ALta Bates Hosptial in Oakland Ca for testing and possible Cyclotron
Treatment at Lawrence Livermore Lab in 1981, but politically, I was
denied treatment. I continue to survive, even without the use of the
cyclotron, but wonder if my prolactin levels would have lessened.
Anyone having any recollection of a wonderful physician, John A. Linfoot,
PhD, please contact me. Carla
Carla <kencarla_AT_erols_DOT_com>
Alexandria, VA USA - Fri Aug 29 8:24:47 1997
Cordoma Benign
Tumor is what my mother had/has and had proton radiation after surgery
about 4 years ago and since has had many problems with her eye sight
and memory. I am looking for anyone with a similar experience. Thank
you for this great avenue to get in contact with others on the web.
Dianne Mosier <grasshk_AT_aloha_DOT_net>
Kealakekua, HI USA - Tue Aug 26 15:09:42 1997
I, too, am interested
in photon treatment centers in the Chicago, northern Illinois, southern
Wisconsin area for treatment of prostate cancer.
Steve Scheider <SScheider_AT_aol_DOT_com>
Rockford, IL. USA - Sun Aug 24 13:41:18 1997
GRANDSON 3YRS HYDROCEPHALUS
HAS HAD SECOND WITH SMALL CLOTS WHY HE HAD PNEUMONIA RECENTLY ANYINFORMATION
WOULD BE NICE THANKS
RILEY <JIM_AT_COM.SOURCE_DOT_net>
PRINCETON, IN USA - Wed Jul 30 23:32:55 1997
My dad is currently
undergoing treatment for mestatic brain tumors (thyroid cancer). I
am looking for additional information. He is under the care of Dr.
Gilber Daniels at MGH and has been seen by Dr. Chapman and Dr. Loeffler.
Orissa Baker <baker_AT_comdex_DOT_com>
Winchester, MA USA - Mon Jul 14 11:14:02 1997
I'm a 9 year suvivor
of GBM /oligo. Serve with the MD Anderson Network and am the Houston
area director for The Christian Medical and Dental Society.
Tim Herron <chaplain_AT_overcomers.org>
Sugar Land, TX USA - Wed Jun 25 13:07:50 1997
Interested in proton
beam therapy as it relates to prostate cancer.
Tracey McInerney <mac_AT_frontier_DOT_net>
Durango, CO USA - Sun Jun 15 11:39:27 1997
Need to know temporal
distribution of protons in beam as used in test of electronics for
particle induced upsets! Thanks, Virgil Strahan
Virgil Strahan <virgil.h.strahan_AT_boeing_DOT_com>
Anaheim, ca USA - Thu Jun 12 18:43:17 1997
To Dr N. LIEBSCH
Dear Doctor Liebsch did you receive last IRM results about Antoine.
As usually, we would like to know your idea and we thank you to send
it to us With our best greetings .... Familly Collet
Didier Collet <didier.collet_AT_wanadoo.fr>
Argenteui, France - Sat May 31 14:35:57 1997
Who would you recommend
for treatment in the Chicago area, my Mother, has been told 3-6 months,
Cancer orginated in lung-then lym-sytem, now located in brain, one
at base, 4 others near..any help would be greatly needed. Thany you,
Rich Franklin Frankl4_AT_ibm_DOT_net
Richard L. Franklin <Frankl4_AT_ibm_DOT_net>
Chicago, Il USA - Thu May 29 2:13:48 1997
My daughter had
traditional surgery for a tumor 4 years ago and is doing well. She
is almost 27 and is married. However, if cancer ever recurrs, I want
to learn more about this technology.
Laura Maceyka <La717_AT_aol_DOT_com>
Burlington, VT USA - Wed May 28 17:27:12 1997
Interests in :
Diffuse Infiltrating Gangliogioma and Astocytoma Cure for Pediatric
Brian Tumor
Michael P. Quinlan <Michael_Quinlan_AT_FileNet_DOT_com>
Irvine, CA USA - Tue May 27 13:36:26 1997
I would use your
map with planned and current protontherapy centres for my web site
on proton therapy. May I use it? Thank you for your good work.
Barbara Caccia <caccia_AT_vaxsan.iss.infn.it>
ROME, Italy - Fri May 23 9:28:50 1997
My 23-year-old
daughter had surgery in August of 96 to remove an oligodendroglioma
from her left frontal lobe. The tumor was quite large, and only a
subtotal resection was possible (a 9cmx5cm lesion was removed). She
currently is undergoing chemotherapy (BCNU, vincristine, procarbazine),
but the results after seven months have not been very encouraging.
Anybody know of anything else out there that might help? Any other
treatments that are encouraging/successful?
Robin McGee <mitchell_AT_texoma_DOT_com>
Sherman, TX USA - Sun May 18 0:21:01 1997
I had surgery for
and radiation{photon+proton} at MGH+at Cyclotron for a Chondrosarcoma
of the clivus. Good people there from what I remember.I would like
to correspond with someone else who was had this kind of tumor.My
address is 6525-B Four Winds Dr, Charlotte NC 28212. Many thanks!!
George Trail
Charlotte, NC USA - Sat May 17 22:05:10 1997
Four weeks ago
(4/18/97) my wife had surgery (at Johns Hopkins) to remove a sacrococcygeal
chordoma on the S2 section of the spine, but were unable get all of
the tumor due to the nerves involved. The doctors are now recommending
the Proton-Beam Radiotherapy as follow-up therapy on the tumor, and
we are hoping to find out any information on this process from anyone
who has been through the treatments or with this particular type of
chordoma..
Tom Kane <Tom.Kane_AT_mci_DOT_com>
Lutherville, MD USA - Fri May 16 14:29:28 1997
Have Prolactin
Secreting Marcoadenoma. Trans-Phen surgery 12/17/93, Radiation Therapy
(40gy) over six weeks Feb. through first of May 1994. Gamma Knife
(Steriotactic Radiolsurgery) 3/12/97. Bromocriptin intolerance. Tumor
discovered 1987. MRI prior to surgery showed tumor to be 6mm. On post-op
visit neurosurgeon stated that tumor was 12mm. MRI "Just didn't
pick up the size". I NEVER ran an extremely high prolactin rate
50's & 60's. DO NOT SIT ON A PITUTITARY TUMOR! HAVE THE TUMOE
REMOVED. BYPASS RADITION THERAPY AND USE GAMMA KNIFE FOR ANY TUMOR
THAT THE DOCTOR COULD NOT REMOVE.*****IF YOU ARE CURRENTLY TAKING
BROMOCRIPTIN, AND HAVING NAUSEA, BROMOCRIPTIN IS ONE OF THE FEW DRUGS
THAT CAN BE TAKEN VAGINALLY. tHUS NOT PASSING THROUGH THE STOMACH.
DO NOT TAKE COMPAZINE (FOR NAUSEA) WHILE TAKING BROMOCRIPTIN. COMPAZINE
RENDERES BROMOCRIPTIN (PAROLDEL) TOTALLY INEFFECTIVE.
Stephanie Piper Clark <SPIPERC_AT_aol_DOT_com>
Oklahoma City, OK USA - Wed May 14 0:56:24 1997
Is there a surgeon/practice
in St. Louis Missouri doing this procedure. I hear rumor Christian
Hospital Northwest.???
Margie <MMtimes3_AT_aol_DOT_comm>
Defiance, MO USA - Mon May 12 21:21:22 1997
Just updating my
e mail address - I'm 48 with an avm in my brain - I've had 2 embolizations
and radiation if you would like to alk please contact me .
JOANNA <JOANNA246_AT_AOL_DOT_com>
NJ USA - Tue Apr 22 15:33:40 1997
I am 44 and have
just been diagnosed with an acoustic neuroma. I would appreciate hearing
from anyone who has had this treated with the Gamma Knife.
linda <scubagal_AT_psn_DOT_net>
USA - Mon Apr 21 21:06:31 1997
Finally maybe someone
I can talk to---I have a large avm,I had a bleed out in 1994- Suffered
a stroke and heart attack- Went to Thomas Jefferson in Philadelphia.
I have since had 2 embolizations and radiation. They say it is getting
smaller with the last MRI in October I am 2 years out..They are hoping
for total obliviation and so am I There are just so many questions.
I never really had you typical symtoms - no headaches until the day
of the bleed- I've had numbness on my left side of my body now and
than since I was 18 years old- they gave me valium saying it was nerves
that seemed to work. Since the radiation I've done pretty good - some
seizures (if they are) sensory on my left side (face & hand) I
take Dilantin (what a drug) I can't stand the way it makes me feel
- all in all I'm doing well- I pray the avm will be a total oblivation
- if anyone hs gone through or is about to go through an embolization
or radiation please contact me I would really like to talk.
Jo-Anna Bumpus <Joanna246>
Pittsgrove, NJ USA - Sun Apr 20 9:37:34 1997
My wife, Doris
is presently a patient at Mass General undergoing radiation treatment
and is to begin treatments at the Cyclotron center shortly. In talking
with her the only side effects she is experiencing is a very sore
throat and can not swallow very well. If you happen to be treating
her tell her hi for me and I know she is at one of the best places
to be. Tom Clark
Tom Clark <tclark_AT_rfci_DOT_net>
Rutherfordton, NC USA - Fri Apr 11 20:58:23 1997
Thank you for the
information on Acromegaly. My brother was recently diagnosed. I received
somewhat sketchy third party information until I discovered your site.
Wendy Manson <wmanson_AT_passport.ca>
Toronto, Ont CANADA - Thu Apr 3 9:20:07 1997
PLEASE ADD MY NAME
TO YOUR E-MAILING LIST. THANK YOU.
MANUEL E. MARTINEZ-ANGEL <MEMASJPR_AT_aol_DOT_com>
SAN JUAN, PR USA - Wed Apr 2 20:18:38 1997
My husband has
a reoccurance of a presumably grade 3 astrocytoma. The first was a
grade 1 astrocytoma 7 years ago. I am looking for any information
available on reoccuring astrocytomas. Thank you. Pam Boyles
PAM BOYLES <pboyles_AT_ix_DOT_netcom_DOT_com>
Northglenn, CO USA - Tue Mar 11 12:04:33 1997
My husband has
a reoccurance of a presumably grade 3 astrocytoma. The first was a
grade 1 astrocytoma 7 years ago. I am looking for any information
available on reoccuring astrocytomas. Thank you. Pam Boyles
PAM BOYLES <pboyles_AT_ix_DOT_netcom_DOT_com>
USA - Tue Mar 11 11:53:33 1997
I am a 17 year-old
Brazilian girl. I was treated at HCL and MGH during Dec-Feb/1997,
after two surgeries of resection of a chordoma. I arrived from the
USA two weeks ago and I am doing very well. I did not feel strong
side-effects. I hope that it encourages people who need to receive
proton-beam therapy to go to the HCL. I would like to say hello and
send kind regards to everybody: Dr. Liebsch (my favourite doctor),
Ena, Pat, Gail, Elliot, Jane, Sue, Ann, Doug, Steven, Georgene, James
and Mike. Love, Juliana.
Juliana Vieira <julivieira_AT_hotmail_DOT_com>
Juiz de Fora, MG Brazil - Mon Mar 3 8:48:21 1997
Your sight is very
informative, but a bit overwhelming. I am looking for information
relative to the treatment of skull based meningiomas, but I am having
trouble pouring through the vast amount of information.
Maureen F. Smith <moesmith_AT_istar.ca>
Ottawa, Ont. Canada - Sun Feb 23 20:29:20 1997
I am looking for
information relative to the treatment of skull based meningiomas.
Maureen F. Smith <moesmith_AT_istar.ca>
Ottawa, Ont. Canada - Sun Feb 23 20:25:54 1997
Hi Visitiing your
home page because I just found out the my brother Inlaw has a Brain
Turmor called glioma stage 2. I wanting him to get a second opinion.Reading
your home page I hope will change his mind before he has surgery.
Thanks for this page Nita
Nelita A. Weaver <Mariah45_AT_gte_DOT_net>
Lafayette, IN USA - Tue Feb 18 20:45:39 1997
You have done a
remarable job which makes collecting information on proton treatment
much easier for us. I am doing the primary evaluation on the range
of effectiveness for a new tumore center project. Thanks.
Kayo C. tang <kayotang_AT_show.org.tw>
Changhwa, Taiwan - Tue Feb 18 1:44:42 1997
Thanks so much
for the helpful information. Seven months ago my brother-in-law was
diagnosed with an Oligodendroglioma tumor. He underwent brain surgery
on Jan, 28 after suffering a seizure. The hard slide pathology report
revieled that the tumor also had grade 4 astroblastoma. I would appreciate
any information yu could send me about treatments and other options,
such as the proton beam procedure. Thanks so much. God bless you.
Eric Aycock <e80wr_AT_aol_DOT_com>
Tuscloosa, AL USA - Wed Feb 5 3:40:11 1997
Testing!
CJO
USA - Tue Feb 4 9:31:20 1997
I am a patient
of Dr. Howard Morgan at Southwestern in Dallas and have been treated
by him for recurring benign spinal chord chordomas. I have had gamma
knife for a tumor in my cavernous sinus and am most interested in
Proton Beam to see if it may be an option for me to treat my cervical
area chordomas. Dr. Morgan is trying to contact someone at Harvard
MGH to discuss my case. Thank you.
Tom Potraza <tpotraza_AT_jcpenney_DOT_com>
Plano, TX USA - Tue Oct 15 14:34:56 1996
Hi to Dr. Liebsch,
Ena and all the staff at HCL. This home page should be very helpful
to future patients about to start treatment. Keep up the great work!
Joanne Cantrill <cantril_AT_dcsnet_DOT_com>
Toronto, Ont Canada - Tue Oct 8 20:42:08 1996
I don't have any.
robin l. hurdle <infocancercareinc.org>
new york, ny USA - Thu Oct 3 12:49:53 1996
I have meningioma
and scheduled to havve gammaknife radiosurgery in a few days. I like
to get information on proton beam radiosurgery in a day or so. Please
send me all the information on this. Your prompt reply is greatly
appreciated
Mi ja
Park <mpark_AT_hjones.jonesnet.org>
springdale, ar USA - Wed Oct 2 14:15:42 1996
I received proton-beam
therapy at HCL in Feb/March 1995 for clivus chordoma. Dr. Liebsch
and HCL staff were great! I am doing well. Nice homepage!
Ed Lowe <elowe_AT_ecity_DOT_net>
Ankeny, IA USA - Mon Sep 30 20:52:56 1996
I have a meningioma
which was treated by Gamma Knife on June 3, 1991 at Presbyterian Hospital
in Dallas, TX. Just read these pages to keep myself informed.
David Armstrong <david.armstrong_AT_oryx_DOT_com>
Euless, TX USA - Wed Sep 25 7:41:38 1996
an 11mm meningioma
was found on the auditory nerve in 1993. follow-up mri showed no growth.
I'm 44 and would like info on radio sur.. what are the pros and cons
and who has the best track record
t. sarubbi <AJS18.aol_DOT_com>
hamden, ct USA - Wed Sep 18 19:32:38 1996
an 11mm meningioma
was found on the auditory nerve in 1993. follow-up mri showed no growth.
I'm 44 and would like info on radio sur.. what are the pros and cons
and who has the best track record
t. sarubbi <AJS18.aol_DOT_com>
hamden, ct USA - Wed Sep 18 19:32:00 1996
An 11mm meningiomas
was found on the auditory nerve in 1993 follow up mri shows no growth
as of 1996 , however I am very interested in radio surgery. What are
the pros and cons Meningioma was found on the aud nerve in 1993 .
t. sarubbi <AJS18.aol_DOT_com>
hamden, ct USA - Wed Sep 18 19:27:22 1996
An 11mm meningiomas
was found on the auditory nerve in 1993 follow up mri shows no growth
as of 1996 , however I am very interested in radio surgery. What are
the pros and cons Meningioma was found on the aud nerve in 1993 .
I'm considering radio surgery what are the pros and cons and who has
the most exp. I'm 44
t. sarubbi <AJS18.aol_DOT_com>
hamden, ct USA - Wed Sep 18 19:24:16 1996
Thanks for the
wealth of information!
Sallie Abbott <skabbott_AT_uky.campus.mci_DOT_net>
Lexington, KY USA - Sun Sep 1 23:22:42 1996
Thanks to Dr. Kjellberg
and now Dr. Chapman, my life has been dramatically changed. Proton
Beam Therapy saved me in 1986 from a life of insufferable seizures,
headaches and a certain "bleeder". The AVM has been eradicated
and follow-up (annual MRI's) only showed a pituitary adenoma (believe
it or not). Dr. Kalmon Post (Mt. Sinai) removed that in 1992. Thanks
again to all. Glad to see we are supported by a fine web-site.
Jim Giordano <jgiordan_AT_NYH.Med.Cornell_DOT_edu>
oceanside , NY USA - Mon Aug 26 14:59:20 1996
Just visiting.
No comments (as a new patient ...)
Yoram Oron <74604.1757_AT_compuserve_DOT_com>
Boston, MA USA - Sun Aug 25 1:28:00 1996
I Have a reoccuring
pituitary adenoma,have had surgery 3 times and should be visiting
with you in October 96. I just wanted to check out your page for info.
Thomas Botelho <tombot1_AT_aol_DOT_com>
Dartmouth, Ma USA - Fri Aug 23 19:07:24 1996
new on internet.diag
w/acromegaly nov 95 surg jan 96 taking sandostatin 4x a day levels
still high looking to find pts. that reached low gh/igf level on drug
and info on new new drugs also #of pts known out there w/acromegaly
TRISH MCNAMARA <P
MCNAMARA _AT_ mhnet.mhmc.org>
cleveland, oh USA - Wed Aug 21 17:43:14 1996
This is not bad
for a first attempt. I enjoyed it visiting this colourful site
Nick Schreuder <Schreuder_AT_nac.ac.za>
USA - Wed Aug 21 15:44:11 1996
Hi! Nice to find
Particles on the web!
Eiichi Takada <takada_AT_nirs.go.jp>
Chiba, JAPAN - Mon Aug 19 7:27:43 1996
I take interest
in information on heavy ions/proton accelerator design for the hadron
therapy.
Alexander Molodozhentsev <molod_AT_sunse.jinr.dubna.su>
Dubna, Russia - Tue Aug 13 3:24:24 1996
HAVE RECURRENT
MENINGIOMA. TWO SURGERIES TO REMOVE IN THE LAST 12 DAYS. APPRECIATE
INFO RE RADITION THERAPY TO PREVENT RECUURENCE.
HELENE D. SIGNORILE <SIGGY71_AT_AOL_DOT_com>
MANHASSET, NY USA - Mon Aug 12 12:46:27 1996
I am researching
therapies for my sister who has just been diagnosed with anaplastic
astrocytoma.
Clare Levin <clarele_AT_aol_DOT_com>
Portland, OR USA -
I'm glad you're
on the Web. Please loose the red background.
Cathy Gruber <cgruber_AT_nas_DOT_edu>
Washington, DC USA -
Hi! I am a patient
of Anthony Zietman's and he tells me I will be having proton therapy
at the HCL. So I am checkin git out!
Frank Carpenter <fcarpenter_AT_mail.edgenet_DOT_net>
Newport, RI USA -
Nice to have PARTICLES
on the web! I'm a PH.D. student working on proton therapy planning
with Monte Carlo. Please contact me, if interested. Bye!
Hubert Kobus <h.kobus_AT_kfa-juelich.de>
Juelich, Germany -
Hey, my name is
Gerrit (Germany)- I have a AVM(Angiom) and I was at the Cyclotron
in 1987! In 1995 I have send a letter to Dr. Chapman (after the death
of Dr. Kjelberg) without any answer! yet Can someone help? Give him
that message? Thank you surfer! Gerrit Klein from Oberhausen - in
Germany (WWW-it works!)
Gerrit Klein
Oberhausen, Germany -
I am a middle school
gifted programming specialist. I have a student interested in learning
about particle accelerators.
Nancy Williams <http://NancyGPS_AT_aol_DOT_com>
Buffalo, NY USA -
NO COMMENTS AT
THIS TIME
CHIEN NGUYEN <NGUYEN.CHIEN_AT_WEST-LA.VA.GOV>
LA, CA USA -
I like the Particles
home page, but found the black on deep red very hard to read.
Philip F. Meads, Jr. <meads_AT_ccnet_DOT_com>
Oakland, CA USA -
I am particularly
interested in NPTC construction. Is there other information on the
net?
C. Bruce Bigham <bbigham_AT_intranet.ca>
Deep River, ON Canada -
z
Connie Bailey <m-bailey_AT_ix_DOT_netcom_DOT_com>
Apex, NC USA -
HELLO, JANET AND
HCL TEAM ! NICE TO FIND THIS VERSION OF PARTICLES I HOPE WE WILL ADD
OUR PAGE SOON AND HAVE A DIRECT LINK.BESTS. ALE
MAZAL, ALEJANDRO <MAZAL_AT_IPNCLS.IN2P3.FR>
ORSAY, FRANCE -
I have a microadenoma
it was diagnosed in Dec.1995 but the school of thought here in the
UK is different than that of the States. I also have been diagnosed
w/trigeminal neuralgia, myofasial pain syndrome, and several syndromes
associated with ruptured/fused discs at C5-6 and C6-7. I also have
silicone impants and would like to know if this is related to the
microadenoma. I had a hystroectomy at age 21 and an oophrectomy 6
years later. Both ovaries were enlagred covered with cysts. Are any
of these things related to each other?
Stephanie L. Church <101532.2466
or 0303>
London, England -
Seeking info on
Proton Therapy and advantages over other stereotactic radiosurgery
methods
Brian Cornell <bcornell_AT_sonnet_DOT_com>
Stockton, CA USA -
Is there any info
on the Proton accelerator at Loma Linda?I couldn't find it.
Dave wright <dwright_AT_fix_DOT_net>
Los Osos, Ca USA -
Aesthetically pleasing
and informative!
North Carolina State University: Mark Sisterson <mssister_AT_unity.ncsu_DOT_edu>
Raleigh, NC USA -
I had hoped to
take a look around with reguard to general information but not to
be.... oh well
Ross Chilvers <rossc_AT_mpx_DOT_com.au>
Sydney, NSW Australia -
1st entry in HCL
GuestBook!
Christopher Owen <>
USA -
Return to the HCL
Homepage
©
960311 For Program Information contact: Dr
Janet Sisterson, PageMaster
CJO with thanks to Matt
Wright for the GuestBook Perl |
![[Divider]](../../images/barrule.gif){kind=small}
