160 - May 8, 2008 12:36 pm

Name:

Jeff Benater

Location:

Cape Town South Africa

Comments:

My wife Liz was diagnosed with GBM grade 4 on 11 May last year 2007,she had brain surgery, they removed as much of the tumor as they could, this was followed by chemo and radio therapy, on her MRI scan approx 5 months after the treatments -- there was no sign of the tumour.She was taking 2000mg of eppilum a day which had an extremely toxic effect, she stopped for 1 week with a dramatic improvement -the neurosurgeon put her back on 1000 mg P/D- he said just to prevent fits or seizures =any one with a similar story

159 - May 6, 2008 8:58 pm

Name:

Jerry H

Location:

Comments:

Just wanted to say that I lost my wife to a GBM May 16, 2007. I will say a prayer for Stan. Someday they will find
a cure for this cancer.

158 - May 4, 2008 5:26 pm

Name:

carol gould

Location:

hants england

Comments:

hello, ive just lost my mum to a gmb, finding it very difficult to understand how these tumours can go undetected for so long, within a couple of weeks of diagnosis my mum was gone we were not told by the medical staff that it would be so quick if we had then we would have taken her home & cared for her ourselves. we were restricted to seeing our mum for three hours a day for which i cannot forgive the north hants hospital for. no one seemed to explain fully what was goin on & its only through web sites like yours that ive come to understand exactly what my mum had so for that i thankyou from the bottom of my heart xx i dont think i will ever come to terms with what has happend but to share my thoughts is a great help my sister & i talk to each other every day & ask questions to which we need answers strange maybe but it might help to get our thoughts together. mum was moved to our local hospital at alton the staff there are second to num. well my thoughts are with you & thankyou for your website its comforting to know there are people out there who know how im feeling thankyou again carol xx

157 - April 17, 2008 5:03 pm

Name:

Corbert Chaisson

Location:

Thibodaux, Louisiana

Comments:

Just surfin to gather info, my father-in-law just had surgery for tumor.

156 - April 8, 2008 4:40 pm

Name:

jane gould

Location:

england uk

Comments:

hi ive just lost my mum 2nd april 2008 she was only diagnoised 2 weeks ago sadly she died but didnt suffer god im going to miss her dnt really believe she has gone how can some one go so quickly 2 weeks

155 - April 8, 2008 2:51 pm

Name:

Alex

Location:

Saginaw, tx

Comments:

This looks like a good web page for those suffering with a GBM. http://www.yasg.com/indexframes.html
Alex.

154 - April 2, 2008 7:44 pm

Name:

Linda VonOhlen

Location:

Comments:

To Live and have lived and keep on living through fond memory is the greatest blessing of Life. Thank you for sharing your story as it is an echo and message that sounds to others who will walk a similar path.

153 - March 13, 2008 11:22 am

Name:

Alex McCraw

Location:

Saginaw, TX

Comments:

My wife started a clincal trial(CP-11 and Avistan) in Aug. 07. In the first 8 weeks there was a marked reduction in the size of the tumor. We have now gone a total of 24 weeks with no growth.

152 - March 12, 2008 10:59 pm

Name:

Lulu Pahuriray

Location:

las vegas, nv

Comments:

I feel your pain. My condolences to you and your family. My brother is dying from this deadly disease. He was a brilliant doctor, internal medicine when he was diagnosed in July, 2006.
In Jan of this year, his doctors told him that all medical options have been exhausted and has 3 months to live. We are still hoping for a miracle.

151 - March 10, 2008 4:14 pm

Name:

John C.

Location:

Revere, MA

Comments:

My wife passed peacefully on Sunday March 2, 2008. after three months of hospice care at home. Five monthds after the diagnosis of GBM IV.

My prayers and best thoughts to the families, caregivers and patients that have been diagnosed with this condition.

150 - February 21, 2008 9:10 pm

Name:

Sharon Buffington

Location:

ellijay, georgia

Comments:

I just found your web site while researching this terrible disease. My husband was just diagnosed 3 weeks ago--he is only 52. I weep for your loss---and mine too.
Sincerely,
Mrs. Vance Buffington

149 - February 12, 2008 11:19 pm

Name:

evangeline lawrence

Location:

omaha, ne.

Comments:

I have come across your web page while researching glioblastoma. My thoughts and prayers are with you and family. I have recently lost a friend to this disease, it was very fast and it has left a hole in my heart. May Gods blessing be with you.

148 - February 11, 2008 9:50 pm

Name:

Kenney Johnson

Location:

Northford, CT

Comments:

I lost my father in 1995 to this cancer before which I had never even heard of. His first symptoms was his complaint that his hand had fallen asleep, however, my mom believed he had a siezure about one month before when he "fell out of bed". The original diagnosis by his GP was a pinched nerve but his health deterioration quicky led to that horrible day when we were told he had a glioblastoma.

It has been at least seven years since I did any recent research on this disease and it appears there has been little progress in understanding the causes nor any appreciable remedy.

I guess that we are very fortunate that disease is so rare with only 3 cases per 100,000. That said, try explaining that to one of those unfortunate to have been diagnoses with this terrible disease. I do remember my dad's last days where he bravely said, "you can only play the hand you are dealt".

God bless you dad and we will always remember you in our hearts and prayers.

147 - February 4, 2008 3:29 pm

Name:

Kay McDuffie

Location:

Atmore, AL

Comments:

My husband was diagnosed with GBM November 2006. He had a massive blood clot that required surgery then 21 days later the tumor was removed. We stayed in the hospital for 33 days. He has slowly declined until around August 2007 we found regrowth in the center of his brain and two other spots that are inoperable. We called hospice about the middle of January because he seems to be declining faster. This is a horrible disease. I'm sorry for your loss but I got alot of good information from your website.

146 - February 4, 2008 1:06 pm

Name:

Alex McCraw

Location:

Saginaw, TX

Comments:

My wife was 35 when she was diagnosed with a GBM in Dec. 06. She has undergone 2 surgies to remove the tumor from her left frontal lobe. She is currently doing well and is in a clincal trial at M.D. Anderson. The clincal trial has caused a marked reduction in the size of the tumor. If everything continues as is we only have another 7 months of chemo left. 2007 was a long year for us. I have been greatly impressed with the care we have recieved from M.D. Anderson.

145 - February 1, 2008 8:40 pm

Name:

Rick Moore

Location:

Ventura, CA

Comments:

My son Mike recently went down with GBM. I'm just surfing for ideas. The prognoses is poor.

Best wishes,

Rick

144 - February 1, 2008 3:36 pm

Name:

bev courtney

Location:

nottingham england

Comments:

My mum was diagnosed with GBH in march 2006 7 weeks later she passed away, No treatment was given it was already to late by the time diagnosis was done. It was such a shock and so quick, she didnt seem to suffer and died peacfully on 7 May 2006 we all miss her very much. I Offer strength to anyone who has to live with this evil disease. My mum was 75 years old and healthy up to that point.

143 - January 31, 2008 10:58 pm

Name:

Leah

Location:

Comments:

My husband (age 32) was diagnosed with GBM in July. We are doing well, but it is emotionally hard. Thank you for having this website. It is nice to know that we are not alone. I keep praying for a cure!

142 - January 10, 2008 4:42 pm

Name:

J. Cadigan

Location:

Revere, MA

Comments:

My wife, 74 year of age, was diagnosed with GBM (4) in early October of 2007. After qualifying for the experimental drug PTK at the MGH she was scheduled to start a regimen of thirty radiation sessions coupled with Temodar and the PTK. Surgery was ruled out due to location and size. Unfortunately, she could not swallow the Temodar that must be taken without chewing. She completed 13 treatments of radiation at the MGH and was so wiped out that she had to stop.
She is now at home with 24/7 care and Hospice. It is a terrible thing to watch your loved one slip away day by day. She is in minimal discomfort, so far, and is on pallative treatment.
We only wish for her to be at peace and to be comfortable in the surroundings she loved so much. My best thoughts and prayers to you all.

141 - January 9, 2008 10:59 pm

Name:

Carolyn Pursell

Location:

Virginia Beach, VA

Comments:

My 36 year old daughter was diagnosed with GBM stage IV, inoperable 5 cinameters in size brain tumor this week at MCV/VCU in Richmond, VA. We are now waiting on her biopsy report which should come within the next two days of how we are will prepare for her future. Thank you for setting up this website because it has given me more of an education on the tumor and the treatment. I just wish there was a cure for it.

Miche's mom, Carolyn

140 - January 9, 2008 10:58 pm

Name:

Carolyn Pursell

Location:

Virginia Beach, VA

Comments:

My 36 year old daughter was diagnosed with GBM stage IV, inoperable 5 cinameters in size brain tumor this week at MCV/VCU in Richmond, VA. We are now waiting on her biopsy report which should come within the next two days of how we are will prepare for her future. Thank you for setting up this website because it has given me more of an education on the tumor and the treatment. I just wish it there was a cure for it.

Miche's mom, Carolyn

139 - December 31, 2007 1:06 pm

Name:

Robert Russell

Location:

Comments:

Thank you for sharing your experiences, I didn't know Stan, but came across this doing a GBM search, very helpful for comparision purposes.

138 - December 22, 2007 9:27 am

Name:

Matt

Location:

Lumberton, TX

Comments:

I am very sorry for your loss. My dad was diagnosed with GBM on 12/18/07, and I am just looking around to make myself feel better. Everyone thought he had a brain abcess due to encephalitis in 9/07 (at that time, CT and MRI was clear, this thing grew in 2 months), so he underwent a craniotomy to remove it. When the surgeon got in, he found it was a tumor and not an abcess. Dr. Lo was able to remove the entire tumor, but we do not know if there were any cells hiding somewhere. We will begin radiation and chemo shortly. He is currently still in ICU, and we are setting up an appointment at MD Anderson in Houston, TX, where I hope to get him in a clinical trial.

137 - December 17, 2007 5:12 pm

Name:

Crissi

Location:

Oakville, WA

Comments:

My husband was diagnosed with GBM in July 2004 after having a seizure. He underwent 2 surgeries, Radiation, and Chemo. We had him with us for 24 more months. He passed away July 5, 2006. My heart breaks for families that have to live through this terrible disease.

136 - December 8, 2007 8:27 pm

Name:

Carolyn Dingman

Location:

San Jose, CA

Comments:

I was searching on the internet because I have a friend who was just diagnosed and is recovering from surgery. It is sobering...and I just want to reach out and say thank you for sharing your father's story. I hope you are well and treasuring the memories you have of his life with you.

135 - December 1, 2007 7:41 pm

Name:

Mike

Location:

Michigan

Comments:

My father, 77, was diagnosed with Stage 4 Glioma on October 30th. After resection of the tumor on November 3rd, and mega doses of Decadron, he is no longer able to walk, and is incontinent, so we had to place him in a nursing home yesterday. He is still scheduled for radiation oncology treatment, and Temadar, but I wonder if that is a viable option at this point. Is the treatment worth it?

Any thoughts?

134 - November 29, 2007 5:10 pm

Name:

Jason F. Klaes

Location:

Stockton, CA

Comments:

My condolences on your loss. My mom wasdiagnosed in August with GBM. She is just finishing her 1st round of the 5 day chemo. She lives in NC, and I just moved to CA a month before her diagnosis. I really wish I could be with her. She is only 49 years old.

133 - November 28, 2007 8:20 pm

Name:

Nas

Location:

Tajikistan

Comments:

Hi.
Good design, who make it?

132 - November 18, 2007 9:09 pm

Name:

Vicki

Location:

Tucson, AZ

Comments:

My deepest sympathy to you and your family!
My brother was diagnosed with Glioblastoma in October 2002 just 2 months after the passing of my oldest brother.
It began with him saying he smelled a chemical type smell but cold not identify the chemical. Then he had a seizure that sent him to the hospital. After some tests, the result was Glioblastoma. He had Radiation but not Chemo.
My brother lost his battle with this horrible disease less than a year later on 9/23/2003.
My condolences to anyone dealing with this disease, personally or through a loved one.

131 - November 18, 2007 12:50 am

Name:

Ron Keefe

Location:

St. Louis MO

Comments:

I am sorry for your loss. My dad was just recently diagnosed with GBM and surgery was Nov 13th, of course you know the routine, they could not remove all of the tumor. Radiation and Chemo start shortly. There are so many questions and few answers which make this battle very difficult in my opinion. Reviewing the notes and timeline on your site I found very helpful. Thank you for the site.

130 - November 11, 2007 11:45 pm

Name:

Cindy

Location:

Southern Indiana

Comments:

I feel such empathy for anyone losing a loved one to this disease. My 49 year old sister in law was diagnosed with Glioblastoma Multiforme 4 on 10-8-07, after having migraines and siezures for many years, and too many doctor and hospital tests to count. We were given a timeline of 6-9 months of life left, maybe 2 years with intensive treatment. She had surgery on 10-10-07 to remove the tumor on the outer brain. She had her first radiation treatment and took Temozolomide chemo drug on 11-8-07. As a shock to our entire family, she had a massive stroke the next morning and went into a coma, and died on 11-9-07. Just one month and 1 day after diagnosis. We will bury her tomorrow and we are still trying to figure out WHY nobody could find this during all this time. My deepest sympathy to all families that have lost someone to this.

129 - November 11, 2007 10:38 pm

Name:

Li

Location:

Edison, NJ

Comments:

Sorry to read the news. My FIL (70 years old) was diagnosed with GBM with a large one and three smaller ones in July 27, did surgery five days later to remove the largest tumor and the operation was very successful. 10 days after that, however, he had a stroke which paralyzed him on the left side. Life quality was really bad, he could not even swallow water, so all liquid had to be thickened with a thickener. He still had periodic infections and fevers and was really weak. The doctors felt that doing radiation and chemo may do more harm than good,because of his mental and physical state. His situation got worse and toward the end of Oct, he was not really eating and not responding. He died on Nov 7, 2007, six days after going to a hospice with his family around him. very bad disease, and the family is still struggling to believe it is true.

128 - October 13, 2007 7:39 pm

Name:

Sandra Meece

Location:

Somerset, Kentucky

Comments:

I am so sorry to hear of your loss. My brother was diagnosed with glioblastoma in April, 2007 and underwent surgery and 36 radiation treatments. After only a few months, his cancer is back in two places in his brain. He sees his surgeon in three days to determine what course of action to take next. My family is devastated and praying for the best, even though we know the prognosis is not good. Thank you for your beautiful tribute of Stan. It helps to know that other people with special loved ones have gone through this and are willing to share their special memories with other families who are facing what you have gone through. God Bless You All.

127 - October 3, 2007 1:09 pm

Name:

LaRue Holaway

Location:

Bremen, AL

Comments:

This message is way past due, I think about you guys often, it was a pleasure to met Stan. I'll never forget the Christmas spent in your home, you were all so kind. You will always be in my thoghts and prayers.

May God Bless You,
LaRue

126 - September 30, 2007 10:35 am

Name:

Sharon

Location:

Scotland, United Kingdom

Comments:

Hi

Sorry to hear of your loss. My father was diagnosed in June this year with a grade iv tumour, poor prognosis 8-9 months. He has had 6 radiotherapy sessions, chemo not being an option, at the moment he's doing ok but like everyone who reads this website you're just waiting on the tide turning.

125 - August 26, 2007 10:01 am

Name:

Roberta

Location:

Milwaukee, WI

Comments:

My Dad was diagnosed with glioblastoma 2 months ago. He went through the norm (Chemo & Radiation) and just had his MRI only to find that the tumor (which is inoperable) has grown slightly. This news has taken all of us to a state where we don't know what to do next or where to turn. His only other option is another treatment which doesn't hold much hope. I am sorry for everyone's loss here and I guess I am gearing up for mine coming soon. I feel so helpless and angry right now and wish I had an answer to save my Dad. :sad

124 - August 20, 2007 2:18 am

Name:

BRENDA STRICKLAND

Location:

RIPLEY,WV

Comments:

I HAVE HAD TWO BROTHERS WITH GLIOBLASTOMA'S. MY OLDEST BROTHER DIED 11 YEARS AGO.MY OTHER BROTHER' TUMOR WAS AT THE CORPUS COLLOSIUM AND WAS INOPERABLE! AFTER RADIATION AND THE CHEMO DRUG "TEMODAR" AND MUCH PRAYER FROM FAMILY, FRIENDS AND STRANGERS THE TUMOR HAS VANISHED! DOCTORS ARE OPTIMISTIC AND SAY THE TUMOR WILL PROBABLY COME BACK WE ARE HOPEFUL THAT IT WON'T.
MAY GOD BE WTH YOU AND YOUR FAMILY
BRENDA STRICKLAND R.N.

RIPLEY,WV 25271

123 - August 13, 2007 2:21 pm

Name:

Stephanie Wallace

Location:

Pittsburgh, PA

Comments:

My mom too died 6/3/2007 from a deadly glioblastoma. Same kind of presentation.....sinus infection/headache, went to the ER and did that CT scan that I will never forget. My mom was only 56 at the time and that was 2/20/2005. She had two surgeries, two rounds of radiation, three different chemos, three clinical trials, and radiosurgery to keep this monster at bay, but it eventually took the life of a really cool mom. I am sorry for your loss and I can really relate.

122 - July 8, 2007 10:30 pm

Name:

Lisa Powers

Location:

Columbus, GA

Comments:

My husband Lucius, UA class of 1983, was diagnosed in August of 06 with a large inoperable GBM. We have been to Duke U. every month since the fall. He is currently in his third trial. The tumor went from a golf ball size to a lemon, to a tangerine, and is now back to the golf ball. We understand that this is terminal, but God is providing. God Bless You and your family. Lucius and I have two little girls ages 6 amd 11. This has been so hard, but we are trying to live each day to the fullest.

ROLL TIDE!

Peace,
Lisa Powers

121 - June 21, 2007 8:54 am

Name:

susanne clarke

Location:

gloucestershire, england uk

Comments:

my partner jon has just been diagnosed with a gbm in the past month and has had 2 operations so far and we will be starting radio and chemo therapy in the next four weeks. we are both still numb about the diagnosis as all he went to the doctors with was some headaches like your father so all this is new to me i'm sorry for your loss and reading some of the other comments on the site are helping me to realise exactly what is happening and what is going to happen i would like to thankyou for keeping this site going as its nice to know we are not going through thid alone.

120 - June 11, 2007 4:04 pm

Name:

Scott Whitworth

Location:

Tampa, Florida

Comments:

My father was diagnosed in early May 2007 with a large GBM and underwent surgery six days ago. We are hopeful that he can perhaps receive some sort of treatment to give him more time with our family. Prayers, love and support truly help. This blog is helping me cope with what can and does happen with GBM's. Your tribute to Stan is helping many of us out here who are scared and confused. God Bless.

119 - June 5, 2007 11:30 pm

Name:

Candy McGowan

Location:

Orange, CA/Lake Havasu City, AZ

Comments:

Another GBM warrior has lost the battle - Bill Beaton of Florida. You can read his son Will's wonderful blog about his dad at www.guysnite.com.
Those of you who are still fighting - keep up the fight and keep up your hope. New strides are being made every day, and you very well may be the ones who benefit from better treatment and even a cure.
And treasure every day that you are alive - they can be so few, and are so precious.

118 - June 4, 2007 7:31 pm

Name:

DeVonna, Mike and Chip

Location:

Tuscaloosa, AL

Comments:

We just wanted you to know that your family is still on our minds and in our hearts every day and especially on this one year anniversary of his death. We love you and hope to see you on a visit to Gadsden someday soon.

117 - June 1, 2007 10:37 pm

Name:

Rico Tranilla

Location:

Kapaa, Hawaii

Comments:

I know that it has been a year since your loss and know that some of the pain of losing a close loved one does not heal so easily. I lost my dad in 2004, and still very much feel the loss, our prayers go out to your family.

My wife was recently diagnosed with glioblastoma (2 tumors), level 3, and is in her 4th day of a 7 week radiation/chemo treatment, if it doesn't work she is given a year. Surgery for removal is not an option. Like so many others I too have spent coutless hours on the internet to know what this is all about.

Although Stan has passed away, just know that this web site continues to help others like myself, THANK YOU.

Aloha Pumehana from Kauai, Hawaii
the Tranilla's

116 - May 22, 2007 1:57 pm

Name:

Karrianne Jenkins

Location:

Orlando,FL

Comments:

I am sorry for your loss My father has GBM and was dignosed in 2005.He has 7 children that love him very much.I pray for all that have to go through this disease.

115 - May 17, 2007 9:17 am

Name:

Liz Ness

Location:

Norwalk, CT

Comments:

I would like to offer my condolences on the loss of your beloved dad. My husband Tim also suffers from this dread disease and, after 18 months and two clinical trials, he is at the stage where there are no further treatments available. I only hope and pray for the strength to take care of him and all his needs, physical, emotional and spiritual during these last weeks.

114 - May 9, 2007 1:15 pm

Name:

mart

Location:

warsaw - poland

Comments:

hello, im from poland and ive been lookin for people in usa who won with this strange disease because of my dad, he was also diagnosed with GBM about 4 months ago and when docs revealed us this horrible truth i spent whole night in internet to find anything about GBM and i'm sure that ive found diaries of people who had GBM and they are healthy now and its all right! and now i want to find those pages again to know how they managed it and what did they do to cure themselves..... and thats why im here! although you didnt manage to win with GBM, i read whole page and i just want you to say that im so sorry and that you are wonderful family and wonderful people and i admire you all! huggiessssssssssss from warsaw

and im sorry for my english but i was trying not to make so many mistakes and i hope that you understand what i ment ;]

113 - April 30, 2007 10:32 pm

Name:

Private

Location:

Private

Comments:

View private message (Admin only).

112 - March 22, 2007 8:57 pm

Name:

Candy McGowan

Location:

Orange, CA/Lake Havasu City, AZ

Comments:

I've been visiting Stan's website for the past year and a half, since my sister Cathy was diagnosed with GBM. Sadly, she died last week, March 14th, following much the same path that your dad did. As I said once before, we will always remember Stan because of this website, and now we will think of him and of you, his family, whenever we think of Cathy and miss her. They are at peace, although it seems they both have left a void here that won't be filled.
Cathy's info is at http://www.lakehavasumortuary.com (see Rusher, 3/14.07).
Take care, and keep praying for a cure for those still fighting GBM.

111 - February 4, 2007 7:03 pm

Name:

Kim Egner

Location:

Pelham Al

Comments:

This website really hit home with us. My father is living with a GBM right now and is almost exactly following the same schedule. The tumor is stable right now, but we're always waiting for when it's not.