braintrust home Guest Book for The Brain Trust

Please leave your comments, in this public guest book, so you can share your thoughts with other visitors.

If you would like to communicate with others, regarding brain tumors, we highly recommend joining the BRAINTMR Mail List.
Questions and comments can also be shared with others using our message board system.


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Name: Maria
Email: MerGIZMO@aol.com
City: Poughkeepsie
State: NY
Country:USA
Date: 12/8/98
Time: 9:07:46 PM
Comments
Great Site! Good Idea! Have Aunt who had a 3rd surgery to debulk another meningioma tumor in 10 years. She's 57 years old now.
 
Name:Joyce
Email:Orbustaz@aol.com
City:Forest Grove
State:OR
Country
Date:12/28/98
Time:3:33:43 AM
Comments:
What a wonderful site, kind of eases my mind to know there is a site like this out here. As I have taken care of my Dad who died of PSP almost 2 yrs ago. Bless all of you that help ones in need.

 
Name:    Robert Beardsley
Email:   thebubba@worldnet.att.net
City:    Norwood
State:   MA
Country: U.S.A.
Date:    1/6/99
Time:    9:57:25 PM
Comments:
 
Name:    Juanita Bright
Email:   Snowbyrd66@aol.com
City:    Kettering
State:   Ohio
Country: USA
Date:    1/18/99
Time:    5:09:56 PM
Comments:

Just visited the site after Skip sent me an email about it!  I love it!!  Way to go everybody!!!For some of you that emailed me when I gave birth to my son, Caleb, I just now put all your congrats in his baby album. It was so sweet to read all those, and remember some of  those people who are no longer with us. (EJ Cotten) Take care! Juanita Bright ganglioglio neuroma 1992

Name:    Charles Street
Email:   spazquatsk@aol.com
City:    Las Vegas
State:   NV
Country: USA
Date:    1/22/99
Time:    2:47:10 AM
Comments:

Have 14 year old son with hydrocephalus. Interested in anything on the subject.

Name:    Christy Waters, RN, BSN
Email:   Watersc@cshs.org
City:    Los Angeles
State:   CA
Country: USA
Date:    1/26/99
Time:    5:52:23 PM
Comments:

I had the pleasure of meetin Samantha and many members of the Brain Trust at the South Florida Brain Tumor Association in Ft. Lauderdale over the 1-22-1/24 weekend. As a representative of Dr. Black and the Neurosurgical Institute here in Los Angeles, I was happy to meet and greet everyone and find out the current events in South Florida.

Name:    Michele
Email:   diamondl00@aol.com
City:   
State:   CT
Country: USA
Date:    1/28/99
Time:    2:30:31 PM
Comments:

I am so glad to have found this site. My sister has been diagnosed with Devic's disease. I do not know very much about it and have not been able to find very much info on it. Can anyone help or point me in the right direction??
 

Name:    lynne
Email:   aubie@frontiernet.net
City:   
State:   alabama
Country:
Date:    2/5/99
Time:    8:37:17 PM
Comments:

I am looking for as much information as possible on brain cancer, blood cancer, and lung cancer.

Name:    Robin DiBacco
Email:   robindibacco@hotmail.com
City:    Fort Leonard Wood
State:   MO
Country: USA
Date:    2/11/99
Time:    10:12:13 AM

Comments:

I am a 40 year old female, 8 months postoperative for a meningioma.  I would like to hear from other regarding recovery time and remaining symptoms.  I currently have double vision, corrected by prisms on my glasses.  I also have jaw, neck, and shoulder pain with limited mouth opening.  Contact me at robindibaccl@hotmail.com

Name:    David R.
Email:   ElToro518@aol.com
City:    Lynn,
State:   MA.
Country: USA 
Date:    2/28/99
Time:    6:32:05 PM

Comments:

Hello Everyone I'm surviving brain injury. I have some inspired true stories on my home page. Would love for people to come visit. http://www.geocities.com/HotSprings/Spa/7713   Please people sign my/our guest book. Thanks Bless All...David R. "Still Surviving"  :)   :)

Name:    David R.
Email:   ElToro518@aol.com
City:    Lynn,
State:   Massachusetts
Country: USA
Date:    3/3/99
Time:    6:32:26 PM

Comments:

HI I would like to invite everyone in Massachusetts to a brain injury support group in Salem Mass. I also want to invite you to my home page. Surviving Brain Injury.  http://www.geocities.com/HotSprings/Spa/7713   Go ahead visit and sign my/our guest book.  Thanks  David R..   "Still Surviving "  :)   :)

Name:    Terry
Email:   laughwthme@netscape.net
City:   
State:   California
Country:
Date:    3/5/99
Time:    1:17:01 PM

Comments:

My brother had a very large meningioma brain tumor removed on Feb. 8, 1999 thank goodness it was not cancer.I would like to hear or find information about the quality of life. He has blurred vision in the right eye, loss of taste and smell. And all so some pain and numbness on the left side of his body. The doctor said he removed all of the tumor and 97% chance it will never come back. Please post reply here or email me it would be very much appreciated. Thank you

Name:    lauralie salt
Email:   LSALT8206
City:    bend
State:   oregon
Country: usa
Date:    5/8/99
Time:    3:00:59 PM

Comments:

my mom had aneurysms surgery & is now in a coma i was told theres a support group & a prayer group for this i can not find it could you help with some info. i would greatly appreciate it

Name:    April
Email:   alpeterson@eee.org
City:    Ontario
State:   CA
Country: USA
Date:    5/14/99
Time:    7:28:55 PM

Comments:

I am looking for information on recovery from removal of a meningioma tumor.My Dad had surgery 3 weeks ago his recovery seems to be going well, but he can't sleep and talks non-stop. Sleeping pills have had no effect and they cause him to hallucinate. Has anyone else experienced this and when does it stop?

Name:    Mavis Elizabeth Lukens
Email:   airjerr@texas.net
City:    Pearland
State:   TX
Country: USA
Date:    5/14/99
Time:    11:10:35 PM

Comments:

Please sent information on how  I can become involved with online support groups.

Name:    Barbara Timm
Email:   btbrace@flash.net
City:    Haughton
State:   LA
Country: USA
Date:    5/17/99
Time:    4:57:55 PM

Comments:

I was just recently diagnosed with a brain tumor, had it removed, and now have to have radiation for it. This has been devastating for myself and my husband. I have been searching for support for ourselves and not having much luck. Your site has some comfort, but not local, when you need to reach out and touch someone. Keep trying in all areas of   the continent. Thanks, Barbara

Name:    Linda Roshak
Email:   ljroshak@netscape.net
City:    Beaverton
State:   OR
Country: USA
Date:    5/20/99
Time:    5:28:51 PM

Comments:

Hello, I am a lady that had an astrocytoma 2/3 thirteen years ago. I had surgery and radiation therapy, and although the prognosis was grim. I  now live a full life.   I would like just to communicate to other people facing similar tramas, the hope and strength that I learned through the experience as when I was there noone could be found to say " I made it!" This seems like a good mediam for such exchange... so let me know if people are interested.   Thank You Linda

Name:    Richard Miller
Email:   cowcreek@airmail.net
City:    Waxahachie
State:   TX
Country: USA
Date:    5/23/99
Time:    4:06:01 PM

Comments:

First time visitor. Scanning the web for information about brain tumors and recovery. I had a tennis ball sized meningioma removed on Feb. 10, 1999.

Name:    Betty Harnage
Email:   bharnage@inficad.com
City:    Tempe
State:   AZ
Country: USA
Date:    6/9/99
Time:    3:52:29 PM

Comments:

Having Gamma Knife radiosurgery for a "probable" meningioma in a week. Would appreciate any comments or residual effects/deficits anyone has had over the long term 2-5 years?  Any helpful advise or suggestions going into this?  Thanks so much

Name:    Sandra Marie Legualt
Email:   skk-sme@aol.com
City:    Detroit
State:   Michigan
Country: U.S.A.
Date:    6/17/99
Time:    7:43:39 PM

Comments:

Intrested in talking with anyone who has had any experience with a loved one and being diagnosed with a glioblastoma multiforme.I think that I need to talk more about it, so that maybe I can understand alittle more. Not a whole lot of people to relate to my experiences. Thanks Sandy

Name:    Michelle
Email:   hartle@home.com
City:    Saskatoon
State:   Saskatchewan
Country: Canada
Date:    7/5/99
Time:    2:15:45 AM

Comments:

I'm 38 yrs old and had an Anaplastic Oligodendroglioma Tumor removed on April 22/99.   Now doing radiation treatments (30) and then onto PVC chemo.  Would like to talk to people in similar situation.

Name:    Mary E. Wilkerson
Email:   wilk@netnitco.net
City:    Monon
State:   IN
Country: USA
Date:    7/24/99
Time:    11:26:19 PM

Comments:

My 81 yr. old mother just had a large meningioma removed.I am trying to learn all I can about this as she has had it for a long time and it has caused a lot of damage to her memory, stability in walking, and etc. We are hopeing she will loose the dizzyness and gain some of her memory but have no idea what to expect. Her surgery went well and she in these couple of days has progressed very well as far as the immediate recouperation after surgery goes.

Name:    Lyndsey VanAken
Email:   lyndseyv@hotmail.com
City:    Eaton Rapids
State:   Michigan
Country: USA
Date:    8/16/99
Time:    11:16:37 PM

Comments:

I have a question about brain tumors relating to jaw pain.I have headaches on my left side and just recently I've begun experiencing extreme jaw pain. If anyone has information on this issue please let me know.

Name:    Debbie
Email:   Deballa@aol.com
City:    Toms River
State:   NJ
Country: USA
Date:    8/23/99
Time:    8:25:31 PM

Comments:

Anyone with a Anaplastic Astrocytoma - Grade III please write to let me know what you are doing for treatment.  After my husbands surgery, neurosurgeon only recommends radiation. Not chemo.  We dont know why, and he is on VACATION til September 4th. We started radiation and do have a few weeks to research this matter.  Any suggestions will be helpful....thank you in advance.

Name:    PAUL R. LAMPRON
Email:   lampron@earthlink.net
City:    GOFFSTOWN
State:   NEW HAMPSHIRE
Country: UNITED STATES
Date:    8/25/99
Time:    6:57:59 PM

Comments:

I DO LIKE TO GET INFORMATION WERE I'M IN A SUPPORT GROUP IN NEW HAMPSHIRE. WE HAVE ALOT OF MEMEBERS. I ALSO SERVE ON THE BOARD OF DIRECTORS FOR THE BRAIN INJURY ASSOCIATION OF NEW HAMPSHIRE. THANK YOU FOR THIS SITE.

Name:    Rebecca Wright
Email:   rwright@tampabay.rr.com
City:    Treasure Island
State:   FL
Country: USA
Date:    8/28/99
Time:    12:16:30 AM

Comments:

Hello, I need some help.  My nine year old son was just diagnosed with an astrocytoma in his thalamus.  How do I go about finding the BEST specialist  in pediatric brain tumors?  Thank you.

Name:    Bruce
Email:   bruceshirleyb@snip.net
City:    New Egypt
State:   New Jersey
Country: USA
Date:    8/29/99
Time:    9:31:40 PM

Comments:

I was diagnosed with and operated on for an ependymoma in January of 1996. The neuro doctors said they removed 99%+, but that I would have radiation therapy next. So I did. And, well, I'm still alive. I satgger around a bit, I dont see so well anymore, I cant remember too much (I use alot of  Post-its), but I am still breathing air. I guess life isnt so bad, considering the alternative...

Name:    Angie DeWeese
Email:   buybrian@prodigy.net
City:    Avon
State:   IN
Country: USA
Date:    9/2/99
Time:    10:38:16 AM

Comments:

31 year old female diagnosed with a glioblast level 4 brain tumor 8/4/99. Looking for others with the same diagosis.

Name:    jen
Email:   jenniferlee43@hotmail.com
City:    marshfield
State:   ma
Country: usa
Date:    9/9/99
Time:    5:21:51 PM

Comments:

my dad was diagnosed with a brain tumor 8 years ago, and is completely amazing. he has beaten the odds, and is still going strong.  i am so proud of him, and thankful for Dr. Black for helping him.  I am interested in learning more about tumors, and his personal condition.  I think this is a fabulous site, and a wonderful idea.

Name:    Glen Schmidt
Email:   goglen@concentric.net
City:    Ada
State:   MI
Country: USA
Date:    9/18/99
Time:    9:05:33 AM

Comments:

My sister was just diagnosed with an Oligodendroglioma grade 2.  She is working with Barnes-Jewish in St Louis, Dr Rich.  She is getting 2nd opinions from Dr Cerullo at CINN and Dr Black in Boston.
Are you aware of specific treatment studies done for Oligos?  What % are treated with surgery / surgery & radiation / surgery & chemo / surgery & radiation & chemo?  Do any of these studies cross brain tumor centers?  What are the success factors and results for these cases?Time is of the essence because my sister wants to make her decision very soon. But, I want to make sure she has the best information possible. THANKS

Name:    Karen
Email:   Bobby@digisys.net
City:    Columbia Falls
State:   mt
Country: usa
Date:    9/18/99
Time:    3:28:14 PM

Comments:

Name:    Dave
Email:   dmadeley@tinyonline.co.uk
City:   
State:  
Country: England ( UK )
Date:    9/19/99
Time:    9:29:31 AM

Comments:

Hi
Our son was diagnosed with a medulloblastoma in Nov 97, is there anyone out there who would like to email us ?
Thanks Dave & Sally

Name:    KATHY
Email:   PLUMCRZY69@AOL.COM
City:    HAZLET
State:   NJ
Country: USA
Date:    9/28/99
Time:    1:54:41 PM

Comments:

I AM LOOKING FOR ANYONE WHO HAS HAD GLIADEL WAFERS IMPLANTED DURING SURGERY FOR A BRAIN TUMOR.  MY MOM GOES BACK INTO SURGERY ON 10/5 AND I HAVEN'T BEEN ABLE TO GET MUCH INFO ON SIDE EFFECTS AND HEALING, WOULD LOVE TO GET INFO FIRST HAND. I'M TIRED OF RATIOS AND STATISTICS.  PLEASE E-MAIL ME IF YOU HAVE A STORY OR INFO. THANK YOU SO MUCH.   

Name:    Debbie Dellinger
Email:   debbie_dellinger @hotmail.com
City:    Williamsport
State:   Maryland
Country: U.S.A.
Date:    10/3/99
Time:    7:34:48 PM

Comments:

I was diagnosed with brainstem glioma 5/97 (inoperable) hvae had 28 treatments radiation and gamma knife treatment. My symptoms have eased up except for double vision in my left eye.Would like to hear from other adult bsg patients.Any stats on survivors treatments etc.

Name:    pat yost
Email:   zappygirl
City:    parsippany
State:   nj, 
Country: usa
Date:    10/13/99
Time:    1:05:36 PM

Comments:

i would like to be a mailing list to talk and give my comments on my experiences.

Name:    lisa bukkhegyi
Email:   bukkhegyi@mediaone.net
City:    boston
State:   ma
Country: usa
Date:    10/23/99
Time:    2:48:44 PM

Comments:

i would like to e-mail with anyone with a malignant brain tumor, i have a gbm4  that was removed one year ago.) it hasnot recurred but i now have a slight seizure disorder an wondrer how people cope with the fact that this probably will come back.  i am only 31 with two small children.

Name:    Jessica Meisenbach
Email:   Mizetwo@aol.com
City:    Lutz
State:   FL
Country: USA
Date:    10/24/99
Time:    5:07:51 PM

Comments:

My father was diagnosed with a malignant tumor a year an half.  Im 23 and been throught alot this past year.  I just wanted to say to all the familes out there hang in there things do get better!!

Name:    Krystal Bonds
Email:   wvsefcu@newwave.net
City:    Charleston
State:   WV
Country: Unites States
Date:    10/25/99
Time:    12:59:06 PM

Comments:

My brother has a malignant brain tumor and I was hoping to become more familiar with some of the medical terminology!

Name:    cindee martinez
Email:   TOMCINDEE@AOL.COM
City:    PHX
State:   AZ
Country: USA
Date:    10/26/99
Time:    12:08:18 AM

Comments:

INTERESTING SITE.  MOM (53) LOW GRADE GLIOMA

Name:    Alison Reed
Email:   Livinlrn@aol.com
City:    Hardy
State:   Virginia
Country: USA
Date:    10/26/99
Time:    12:00:56 PM

Comments:

Name:    Theattle A. Ryan
Email:   TheattleR@aol.com
City:    Las Vegas
State:   NV
Country: USA
Date:    10/26/99
Time:    2:18:14 PM

Comments:

I had two pituitary tumors, both of which were surgically removed in 1994. I have dealt with the drastic emotional issues regarding the effects of these tumors and am very hopeful that I can pass my knowledge and experiences on to someone else who is suffering.
Also, my dear husband died with a brain tumor which was cancerous.  How difficult it was to watch him suffer.  Again, I pray my experiences caring for him will in some way benefit someone else.
If I can help you, please send email and include "Brain Tumor" in the subject line.

Name:    Donna Jancura
Email:   fjancura@aol.com
City:    Strongville
State:   Ohio
Country: U.S.A.
Date:    10/27/99
Time:    3:38:07 PM

Comments:

a support group for inoperable mailgnant oligodendroglioma brain tumor.

Name:    Erin Williams
Email:   Jxnb@aol.com
City:    Ventura
State:   Ca
Country: USA
Date:    10/28/99
Time:    12:08:19 AM

Comments:
Name:    Chris Fleisher
Email:   rebecca@hornedo.com
City:    Harrisburg
State:   PA
Country: USA
Date:    10/28/99
Time:    8:07:10 PM

Comments:

My 69 year old mother was diagnosed in July of 98 with Glioblastoma multiforme. She passed away in May of this year.  It was such an emotional roller-coaster filled with so much heart-ache.  I pray for all of you going thru this awful disease.  Believe in God and He will help you get thru it.

Name:    Robert Owens
Email:   owens@inebraska.com
City:    O'Neill
State:   Nb.
Country: USA
Date:    11/3/99
Time:    8:05:37 AM

Comments:

Wife, Vickie, diagnosed with glioblastoma multiformes grade 4 in July, 1999.  She has had surgery and radiaton with chemo next on the horizon.  Prognosis not good.

Name:    METIN IRFAN
Email:   PEKSOYLU@AOL.COM
City:    LONDON
State:  
Country: UK
Date:    11/3/99
Time:    7:15:45 PM

Comments:

HI EVERYBODY.I HAVE LOST MY 13 YEARS OLD SON.HE HAD BRAIN TUMOR.HIS NAME IS GERRY IRFAN.MY HART IS BROKEN.I WILL NEVER GET OVER THIS TRAGEDY.WHY DID HE HAVE TO DIE?HE DIED ON 28/10/99. PLEASE PREY FOR HIM.  GOD BLESS YOU ALL.
  METIN IRFAN
Name:    Philip B. Pressler
Email:   PhiPre@aol.com
City:    Harrisburg
State:   PA
Country: USA
Date:    11/6/99
Time:    11:04:26 AM

Comments:

I am a survivor of brain tumor surgery (12/94, dermoid) and believe this is an excellent means of exchanging relative information with individuals experiencing similar circumstances. I look forward to sharing thoughts and ideas regarding the coping mechanisms necessary for dealing with the effects of a brain tumor.

 

Name:    Kelli Shaw
Email:   qtip92@bright.net
City:    Tiffin
State:   OH
Country: United States
Date:    11/15/99
Time:    8:27:50 PM

Comments:

I was diagnosed with an Anaplastic Astrocytoma in June of 93. And then in July of 98 I was diagnosed with a grade 3 Anaplastic Oligodenroglioma. Currently going through chemo (PCV)results of chemo look promising-Interested in hearing from others who have been through treatments ect...
 

 
Name:    Susan M. Wright
Email:   WRIGHTKID@AOL.com
City:    South Orange
State:   NJ
Country: USA
Date:    11/16/99
Time:    7:41:52 AM

Comments:

My husband was diagnosed with a meningioma in 1989 and has had 2 surgeries (1989, 1990) at U of Penn and radiation following 2nd surgery.  He currently suffers from short term memory loss and expressive and receptive language problems as well as nerve loss in his left eye.  He is retired on disability from a large insurance form where he was a vice pres in charge of marketing until 1992.  We have 2 children (ages 6 and 12) and he is 50 years old...i am 43.  Would love to converse with anyone regarding any similar issues.
 

Name:
Brad Parrasch
Email:
BEP25@aol.com
City:
Hillsdale
State:
NJ
Country:
USA
Date:
11/22/99
Time:
3:43:13 PM

Comments

I have an Anaplastic Astrocytoma Grade 3. I was diagnosed 10/23/98

Name:
judy a. wilson
Email:
jwilson@jwilson-realtor.com
City:
Tallahassee
State:
FL
Country:
USA
Date:
11/22/99
Time:
3:52:11 PM

Comments

Last Wednesday, my 56 year old brother, living in Hollywood, FL, had surgery for a mengeanomia (spelling?) tumor 8 centimeters in size. The first day he was up and sitting in a chair then within 24 hours he started losing strength on his left side (the tumor was on the right side of the brain) he then went to sleep. Apparently, his brain has swollen and he is unable to move his limbs or open his eyes. They moved back to ICU. Would someone share with me if this is "normal". The doctor has told my sister-in-law that this may occur for 10-15 days. There are no drainage tubes. Are drainage tubes normally this needed for this surgery? Today, they are inserting a feeding tube so he can get his strength back. My sister-in-law is not an "assertive person" and my information from her is as you see above. Can anyone give me some advice as to what to ask or do?

thanks Judy

Name:
Sue
Email:
me@virtualtrials.org
City:
Eau Claire
State:
Wi
Country:
USA
Date:
12/8/99
Time:
8:41:33 AM

Comments

Name:
Eileen
Email:
EFS1951@aol.com
City:
Newburgh
State:
NY
Country:
USA
Date:
12/20/99
Time:
8:59:30 PM

Comments

My husband was diagnosed on Nov 22 with a Grade III Malignant Astrocytoma on the right side of his brain controlling his speech and his comprehension. He had a biopsy and it his tumor is now called a Glioblastoma. It is 4 cm in size and growing fast. All of his doctors are talking of extension of life and Quality of Life, no one is speaking of long term remission which I find frustrating. Is this hopeless? I keep hearing about survivors and would like to know where they went and what treatment they received. He is currently undergoing radiation, his surgeon discouraged him from having it removed since he would have a 40% chance of becoming worse regarding his comprehension and speaking ability. He is so positive and loving right now and that's how I'm getting through this. We are surrounded by caring family and friends and find ourselves very lucky in that regard. Thanks for this ability to find help through support channels, it definitely is appreciated.

Name:
Jim Hilburger
Email:
opnjim@acsu.buffalo.edu
City:
Buffalo
State:
New York
Country:
USA
Date:
12/29/99
Time:
10:08:22 AM

Comments

My 30 year old daughter Lisa has a brain tumor on her left occipital lobe. Lisa is scheduled for surgery on January 11. I would like to contact other patients that have had a similar type of surgery to gain some better insight as to what my daughte can expect beforeand after her surgery. I do not know anything about the type of tumor she has except that it isabout 8 cm in size. Any info would be greatly appreciated. Thank You Jim Hilburger

Name:
JAYSON RICHTER
Email:
JAYSN16@AOL.COM
City:
WAUPUN
State:
WI
Country:
U.S.A.
Date:
1/12/00
Time:
8:05:24 PM

Comments

I WAS DIAGNOSED WITH GLIOBLASTOMA MULTIFORME THIS PAST JULY AND GIVEN A YEAR TO LIVE BY THE DOCTORS. I WOULD LIKE TO TALK TO SOMEONE AROUND MY AGE WITH THE SIMILIAR OR SAME PROGNOSIS. I'M 23 YEARS OLD.

Name:
laura herzovi
Email:
lauraherzovi@hotmail.com
City:
timisoara
State:
timis
Country:
romania
Date:
1/15/00
Time:
8:36:01 AM

Comments

i study medicine in romania so i am interested in everything you can possibly send me(new info). thank you.

Name:
stephen tarver III
Email:
SET03@AOL.COM
City:
Roselle
State:
New Jersey
Country:
US
Date:
1/26/00
Time:
5:42:49 PM

Comments

Name:
Carmella
Email:
carmellagambatese@yahoo.com
City:
Cleveland
State:
OH
Country:
USA
Date:
2/2/00
Time:
3:53:52 PM

Comments

My brother has a gliablastoma (gbm) in his spinal cord at the base of his neck. They were able to remove some of the tumor from his spine but they found a second tumor on his brain while performing the MRI after surgery. This is very rare and looking for anyone to share informaiton.

Name:
Val
Email:
valgatling@mailcity.com
City:
Philadelphia
State:
PA
Country:
USA
Date:
2/3/00
Time:
12:32:23 AM

Comments

I just read some of the comments from others. I came looking because my niece had a portion of an anplastic astrcytoma removed Aug. 99. She has had radiation, is currently taking Chemotherapy. The portion that remained after surgery did not respond to the radiation. She is 30 yrs. Married, with 5 children, 10 yrs, 8 yrs. 7 yrs. and 17 mon. twins. Her attitude is extremely upbeat. She lives in a smal place, York, PA and doesn't have a computer. If anyone wants to be in contact with her for mutual encouragement or to just share experience, please e-mail me and I will send you her snail mail address. Take care everyone, remember the promises God has made. Isaiah 25:8, Isaiah 33:24, 2 Peter 3:13.

Name:
Dennis Scolamiero
Email:
n1ds@address.com
City:
Swampscott
State:
Ma
Country:
USA
Date:
2/7/00
Time:
11:30:49 PM

Comments

Sam. Mail me at <n1ds@ address.com> or <n1ds@yahoo.com>. 7Feb2000 Sorry about the chair, and the stress resulting from consequences. Haven't browsed thru the site but you have lots of sub pages and links. Good health and bon apetite, the pasta was good and just enough! Take care and au revoir. Dad.

Name:
Sue Belluardo
Email:
suzanne_belluardo@datascope.com
City:
Mahwah
State:
NJ
Country:
USA
Date:
2/8/00
Time:
9:08:57 PM

Comments

Hi, My 52 year old mother diagnosed with a large, inoperable, astrocytoma, low grade glioma, Neuro Oncologist from Sloan Kettering in NY feel she is not a candidate for radiation at this time, seeking info ??

Thank You, Sue Belluardo

Name:
Chris Buonpastore
Email:
cmbccrn@aol.com
City:
wayne
State:
nj
Country:
usa
Date:
2/9/00
Time:
8:59:55 AM

Comments

56 y/o mom diagnosed w/ anaplastic oligodendrogliomagr2 on 12/27. Lesion was right temporal,1.5 cm, and was completely excised using stereotaxy @ Mt. Sinai NYC. We are being treated w/ Radiation, course for 6 weeks @ Columbia Pres. NYC. Anyone out there w/ info re: this tumor, and CURE/Long term survival please write. Also, need info re: latest treatment options, prominent DR.'s, etc. Mom is otherwise in excellent heath. HELP!!!

Name:
Marilyn Golleher
Email:
mgee918@aol.com
City:
Bakersfield
State:
CA
Country:
USA
Date:
2/11/00
Time:
12:35:56 PM

Comments

I have already had a benign tumor removal last April but I am having headaches and losing my vision in my right eye. My dr. said the surgery and MRI after the surgery, turned out perfect. Could it be stress due to my upcoming MRI? Marilyn

Name:
SEYMOUR WAGNER
Email:
sywag@webspan.net
City:
BAYSIDE
State:
N.Y.
Country:
US
Date:
2/18/00
Time:
9:06:48 PM

Comments

My wife developed dementia 1.5 months after receiving brain radiation after surgury to remove a 1 inch malignant brain lesion on her right frontal lobe.

We were not aware that the radiation could cause atrophy of the brain. Does this happen to others & how frequently? Shouldn't patients be aware of this possiblity?

Her condition has deteriated over the lat 10 months & now she sleeps most of the day & opens her eyes on much prompting or after being moved by her nurses. She doesn't recognize me or our 30 year plus 3 sons.

CAN ANYTHING BE DONE TO STIMULATE HER MORE BY MEDICATION OR THERAPY? COGNITIVE & RANGE OF MOTION THERAPY THUS FAR GIVE HER HAVE BEEN UNSUCCESSFUL AS HAS PROZAK.

ALSO CAN ANYBODY ADVISE ME, HER SUPPORTER, INSOFAR AS BEING ABLE TO DEAL WITH THIS & HELP ME CONTINUE MY LIFE W/O SUCH GRIEF.

THANK YOU

Name:
Robert Stevens
Email:
RWSTEVENS@prodigy.net
City:
Media
State:
PA
Country:
USA
Date:
2/23/00
Time:
5:04:16 AM

Comments

I read with horror the story posted when you search for Glioblastoma Multiforme. {Houston Chronicle In strictist Confidence - The Untold story of the chemical industry) No one in my surviving family has ever talked about it, but I believe my father died from PVC exposure and Glioblastoma Multiforme. He died Feb. 10, 1964. I am his son, now 49 years old. The picture of man dying from the disease looked just like my dad's last days. He worked for Sperry Rand Corp, now UNISYS. He was an electronic technician, installing wiring in airplanes, most notably the B-58 Hustler. He also was a HAM radio operator. His first seizure occurred in September 1963. His second seizure occurred on the day JFK was shot & killed. He was admitted to the Long Island Jewish Center Hospital in early Dec. 1963, and they closed him back up, saying he was a dead man. He was allowed to go home for Christmas. Just after New Years he was back in a more local hospital, where he died. I genuinely believe he died from exposure to PVC. I feel is important to get this information out into the public, so people can make better choices about their lives. RWSTEVENS@prodigy.net

Name:
cully
Email:
cully@epix.net
City:
mehoopany
State:
pa
Country:
usa
Date:
2/26/00
Time:
9:49:13 AM

Comments

hx of meningioma......interested to discuss continued seizures and medications

Name:
Gabriella Boothe
Email:
Td7884Or@aol.com
City:
LasVegas
State:
NV
Country:
USA
Date:
7/14/00
Time:
11:13:11 PM

Comments

Several years ago I had radiosurgery for a meningioma brain tumor. So far so good. When diagnosed the docters all agreed it was bengian(mis-spelled?) Now when asked for a docter report they will not put this in writing..at the time, I was lead to believe that all meningioma were non malignant...now I see more on meningioma being both ways?

Name:
don price
Email:
sassy@ev1.net
City:
deer park
State:
tx
Country:
usa
Date:
7/17/00
Time:
12:57:22 PM

Comments

I found your website from a friend at NBTF. They said I might be able to find more information about people with oligodendroglioma(low grade, right pariatal) and siezures. And how they are coping. Mine is in operable, about half the size of a man's fist. They said I could logon and go to a part of your website "other lists", but I don't see it. Maybe you can help me, thanks.

Name:
don price
Email:
sassy@ev1.net
City:
deer park
State:
tx
Country:
usa
Date:
7/17/00
Time:
1:14:33 PM

Comments