Comments on previous sites


Note: Not all the comments are here yet as I have had two different sites before this one. This page is a work in progress.

I was diagnosed with GBM4 on 7/29/01, debulked on 7/31/01 and am now on Temodar thru Duke University. Just returned
from my 2 month evaluation and Temodar seems to be working very well. I appreciate seeing different sites and the time it took to share your experiences. God Bless

Mike Schmidt

Roswell, GA USA – Friday, November 02, 2001 at 09:53:24 (PDT)


It is very inspiring to hear the amazing stories such as yours. God looks after people like you. Congratulations on your courage and strength; keep it up! My mother-in-law was recently
diagnosed with GBM IV. She was on her way home from her holidays in Greece when her plane was grounded in Halifax on September 11, 2001. The trauma of not knowing why all airports were shut down and not knowing how long they had to stay on the tarmac in Halifax put a lot of stress on my mother-in-law. She is 76 years old and very
frail. To make a long story short, they ended up staying 5 days in a church basement in Halifax. My mother-in-law could not eat or sleep. She was very worried about the state they were in. When they finally were given the go ahead to fly back to Toronto, my mother-in-law was weak,
dishevelled, confused and not herself at all. She finally got home and slept for 10 hours straight. This was very unlike her. She fell out of bed while trying to go to the bathroom. She had a seizure while she was on the toilet. EMS arrived and took her to the hospital where a CT-Scan revealed a very large tumour. Eventually they removed as much of the tumour as they could, and is now undergoing 15 radiation treatments. Along with the dilantin and decadron we took it upon ourselves to investigate and found that shark liver oil is worth a try. So far so good, she doesn’t feel weak or in pain. Only time will tell… It is good to know that we are not alone. Thank you for sharing your story. Keep on fighting.

Soula Nitsotolis

Toronto, ON Canada – Wednesday, October 31, 2001 at 08:14:25 (PDT)


Thank you for sharing your story. You are a terrific example of the level of involvement patients and their families need to have in their medical care – we need to keep ourselves educated and uplifted! Today my husband received another clean bill of health from the oncologist – just over 4 years since treatment of his mediasteinal germ cell tumour. This is a very rare cancer seen in only 5 patients a year at Princess Margaret Hospital in Toronto. Hats off to you, John, for keepin’ on keepin’ on! Chris

Chris Hagen

Toronto, ON Canada – Friday, October 26, 2001 at 11:56:50 (PDT)


On Sunday, October 9th, I got up feeling very nauseated and began to vomit uncontrollably. I felt a pressure on the back of my head that felt like someone was pushing my right eye through my skull. My legs were very weak and I knew this was a serious problem. I thought I was having a stroke. I woke my husband and told him I needed to go to the hospital but I insisted on showering first because of the vomiting. The shower actually felt good I thought if I could just lay down for a while, I would get better. My husband told me not to move – he would get my clothes for me and take me in. I had to get sick again so I got up, went into the bathroom and the next thing I knew, I was in ICU. I had a grand mal seizure. My husband was aware of how to handle seizures as his sister was an
epileptic and he somehow managed to keep his cool. EMS arrived in less than 2 minutes and got me to the ER where they performed a cat scan. The tumor was found in my occipital lobe – the part of the brain that affects vision. A
neurosurgeon was consulted and surgery was scheduled for Thursday October 13th. All of this was completed in less than 2 hours from the time I arrived at the hospital. Every person that worked on me did so with great
kindness and professionalism. While waiting for my surgery, the nation suffered it’s greatest attack. As I lay in my bed feeling so sorry for myself, I realized that my little tumor was such a trivial matter compared to the nation’s great tragedy. It really put my situation into perspective and made me feel so small.
Surgery went as well as expected. The tumor was debulked, and I was placed on a
regimen of Decadron, Dilantin,and Dilaudid (or as I call them Delicious, Delightful andDelirous) along with Pepcid, and Szanax. I left ICU 5 days after surgery and placed on a regular medical floor for 5 mored days and released. The staples on the back of my head looked as though I had been kicked by a horse and my skull felt like a topographical map of the moon.
I have been taking radiation treatments for about 2 weeks and have 4 more weeks to go. I had one week of chemo – Temodar – and so far other than hair loss, no other side effects. I have lost most of my vision in my left eye and the rest of my vision is poor at best. But I can see enough not to walk into walls and each day poses new
challenges that are sometimes funny and sometimes pitiful. I feel depressed when I can’t drive as I was fiercely independent. My employer has been so kind as to let me work when I am able. My job does not offer any form of long or short term disability, but does offer health care insurance, so I have to work to earn my keep and defray medical bills. I have been declared disabled, but Social Security is slow at best and if I don’t survive the 5 month waiting period, the my husband will
receive nothing. We need to change that legislation.
All in all, my spirits are good and I am looking forward to renewing our wedding vows in January for our 25th
anniversary. I realize my prognosis is not good, but I have too much to do to give up now. I wake up each morning and declare it not my day to die. I make sure to hug someone – it’s important. And today I get to buy more hair and it’s kinda exciting as I can pick and choose the color and style.

Good luck, God speed and prayers to all my fellow GBMers.

sue jackson

warren, mi USA – Thursday, October 18, 2001 at 03:30:35 (PDT)


As a nurse and a wife of a wonderful man that was diagnosed with this terrible disease in May, let me tell all of you that read my words: Don’t give up, keep looking, keep praying and having positive thoughts. Don’t let it get you. Subsribe to www.virtualtrials.com (daily news blast) for anything new. For my husband, Michael he has finished radiation and is on Temodar now and smaller doses during radiation… so far so good at 5 months. I’m grateful for everyday. Do not give up!

Mary

San Diego, Ca USA – Tuesday, October 16, 2001 at 16:04:05 (PDT)


I suffered a Grand Mal seizure and died on the way to the Hospital on 8-30-2000. When medicine failed, GOD spared my life. I was diagnosed with a grade 4 GLIO and had my first surgery. I went through the full dose of radiation therapy, during witch the cancer returned. I had my second surgery in January 2001, and have been taking the chemo drug Temodar since. So far, my MRI’s are clear, and I have returned to full duty as a Police Officer. There is hope. God can and does work miracles. May GOD bless you and keep you, never give up hope.

Harold Elliott

NLR, AR USA – Tuesday, October 09, 2001 at 09:33:03 (PDT)


I have a grade 3&4 gliobastoma multiforma which has been partially removed during surgery on Aug 10,2001. I need to have some advice on which Chemo drug to take before, during or after surgery. There is a lot of info on the internet which I feel might help me. My radiology treatments start on Sept 24th and I am am really nervous about which chemo to take if any.

Gene

Vancouver Canada – Wednesday, September 12, 2001 at 21:57:41 (PDT)


u really have raised our hopes! My wifes’ mother is fighting GBM since 11/08/2001 when she was operated upon. We her giving her RT and temodal. She is 54 . Any thing else that we can do apart form this??
reply back. All the best to you , may u live a long life and probably forget if anything called GBM ever happened to u.
Rajat

rajat ahuja

Pune India – Saturday, September 08, 2001 at 00:02:08 (PDT)


Here we are neighbours in Ontario. My husband was diagnosed in March of this year with gbm IV. He has enrolled in a clinical trial of
escalating radiation which involved 36 treatments and then one year of BCNU, every 8 weeks. It is a taxing regime, physically and mentally on our whole family. Thank you for your encouraging journey.

Doreen

Caledonia,Ontario, CANADA USA – Thursday, August 23, 2001 at 02:57:23 (PDT)


My partner’s sister, Debbie Hodges Exely, whom I have written about earlier finished her first round of radiation on August 10, 2001, after having been diagnosed with stage III GBM on June 18. Other than a little bit of hair loss, she was never sick from the treatments. All of our spirits were high. She was going to beat this thing. And she did beat it. Debbie is no longer in any pain and needs no more radiation and no chemo down the road either. She went to be with the Lord on August 16, 2001, just two months after diagnosis. Her kidneys shut down
because of the position of her tumor. That’s what they say anyway. While it was too short a time for those of us left behind, for Debbie it was a long time coming. She was fortunate to be surrounded by her family and to get a final hug and a big ole kiss before drifting off into her eternal rest. I will continue to pray for those who continue to fight this battle. And thank you to the many people who emailed their support after I first posted an entry. Onward Christian Soldiers!!!!!

Alan Walker

Doraville, GA USA – Wednesday, August 22, 2001 at 16:36:12 (PDT)


My father was just diagnosed with Glioblastoma and is awaiting surgery for the final verdict. It is heartening to hear experiences like yours. You keep our hopes up.

Asha

Boston, MA USA – Tuesday, August 14, 2001 at 11:43:20 (PDT)


John, thank you for your story and updates. My brother-in-law was diagnosed
just recently. Your story and information is very interesting and I am going to look into other options other than what his doctor is suggesting. Again, I can’t thank you enough and hope things keep going in the right path for you and others.

Paula

, CA USA – Thursday, August 09, 2001 at 21:57:06 (PDT)


Dear John: I think if I was to open up a dictionary and and look up courage…your name would pop up! What a tremendous inspiration you are. My brother Tim, 42, was recently diagnosed with gbm and your story alone is enough to convince me that there is no other way but up from here.
Congratulations on your continued success and of course my hat is off to your wife and children who are also
phenomenal survivors!
We are about to find out the results today of the first MRI after rad. and chemo (temodar). Wish us luck.

Sincerely,
Vicky

Vicky Moniz

Fremont, Ca USA – Monday, August 06, 2001 at 12:31:06 (PDT)


John: What a wonderful inspiration you are!! My father was diagnosed with GBM GRADE IV in 1998. Sadly..he passed almost 6 months to the date of his dreadful diagnosis. I only wish that treatments available today would have been available to him then. It is a comfort knowing that people are surviving this disease. I am so happy I clicked on your site. Keep up the wonderful work and stay healthy and strong for many many years to come!

Denise

 MN USA – Sunday, August 05, 2001 at 01:33:21 (PDT)


Hi John, this is a wonderful site!! My 37 yr old baby brother Donnie was diagnosed with a gbm grade IV on July 9, 2001. I think the world stopped that day……He also was told it is inoperable and incurable, and the Dr’s have given him 1 yr to live. I have been spending most of my time researching on the internet about this ugly disease. My family and I cannot accept this and are going to try all alternatives to help him beat this thing. 1st of all I found www.holisticcancersolutions.com to be very helpful in offering "natural" solutions to help build his immune system back up….and also some "cancer killing" agents as well. We are also going to do a 360 degree turn on his eating habits, since that is probably where this thing began. Has anyone out there ever heard about Staten Island University Hospital? and if so, did it help the person going there? Also, the Dr.s have mentioned a new chemo pill (temador)…..I’ve read good and bad things about it. Any info will be greatly appreciated! For all of you out there who are either the patient, family or friend….my heart goes out to you all! I feel strongly that he will beat this thing and am assured that God is teaching us all a very valuable lesson. We just have to reach inside ourselves to realize what that lesson is…..and never give up hope or take our own lives for granted ever again! God Bless Everyone…..keep the faith!

Gina Hanson

Chesapeake, VA USA – Monday, July 30, 2001 at 06:53:35 (PDT)


I am glad to hear that there are people that can beat this illness. My brother law has had a battle trying to overcome this gbm but it doesn’t seem to get any better. Your story is very encouraging to everyone. My heart goes out to everyone who has gbm and to their families!
May you live a long long life, you deserve it!!

Kim

BelAir, MD USA – Sunday, July 29, 2001 at 18:03:10 (PDT)


My wife had a Glioblastoma removed in January 2001. Gliadel wafers were implanted where the tumor was removed. Radiation was the treatment for 30 days. This month (July 2001) an MRI revealed some cells. Temodar and an infusion of Camptosar is going to be the treatment. Good results have been obtained according to our
Neuro-oncologist.
Hope your improvement continues. You give us all hope.
Burt and Lorraine Swerdling

Burt Swerdling

Hauppauge, N Y USA – Tuesday, July 24, 2001 at 17:56:03 (PDT)


Thank you for your story. My father was diagnosed with GBM in January 2001. Hearing stories like yours give me hope!

Barb Tritch

Fort Wayne, IN USA – Tuesday, July 24, 2001 at 08:58:49 (PDT)


A cousin was just diagnosed with GBM grade IV. We’re all having a rough time dealing with this. I am glad to hear there are success stories in the world.

Martha

Englewood, OH USA – Saturday, July 21, 2001 at 11:35:10 (PDT)


Thanks for some inspiration. My husbands grandfather was recently diagnosed. With little good news coming from the doctors it was nice to hear such a positive story.. Good Luck!!

Shelly

Cincinnati, oh USA – Friday, July 13, 2001 at 17:31:03 (PDT)


Remarkable story. My brother-in-law was just diagnosed this week (he’s in his early 40’s). Your story gives us some hope! Thank you for sharing, and God bless you and your family.

Jackie Perry

Irvine, CA USA – Friday, July 06, 2001 at 11:49:33 (PDT)


Thank you so much for giving me hope. I am a 22 year old college student who is living 800 miles away from my mother who also has a brain tumor. First a year ago she was diagnosed with a
Meningioma, then less then a year later a Glioblastoma. It is hard to be so far away from her worrying, but your story makes me
feel there is hope! Thanks again, Tracy

Tracy Kennedy

Wilkes Barre, Pa USA – Friday, June 29, 2001 at 15:23:49 (PDT)


Thanks for your story. I have passed it onto my sister in law who’s father in law was diagnosed
yesterday, June 26th.
They have a long road ahead of them and hope is something they need right now.
Good luck to you and your family for many years to come.
Bruce

Bruce Fiene

Holden, MA USA – Thursday, June 28, 2001 at 06:30:25 (PDT)


My partner’s sister, Debbie, was diagnosed yesterday, June 18, 2001, with GBM. Our journey is just beginning. Your story gives us a hope we will be sharing with our entire family as we began to learn more about this disease.

Alan Walker

Doraville, GA USA – Tuesday, June 19, 2001 at 09:31:10 (PDT)


Having lost a Father to cancer numerous years ago and within the past two weeks being informed that my buddy, since high school, has been diagnosed with a level 4 GBM tumor, I found your experience
heartening but also cautious. Your strength in sharing with others is commendable. The "will" is the difference.

Brian J. Gallitz

Richfield, WI USA – Friday, June 15, 2001 at 08:11:05 (PDT)


Informative page, thank you… my father was told today that he more than likely has glioblastoma
, and we were looking for information on it. Thank you for putting up your page. Please pray for my dad…

Paul Turner

Ona, WV USA – Thursday, June 14, 2001 at 22:07:01 (PDT)


My stepson, age 43, had a 5cm tumor removed 5/20/01, at Providence Anchorage Medical Center in Alaska. He came out of surgery with no obvious dysfunction and is facing radiation treatment shortly. Your website is very welcome, and I thank you for it! We’re just starting on a journey we never planned, but isn’t that like life itself. Thanks for providing this forum. It is an inspiration to read about other people’s struggle with this challenge.
Mark Earnest, Jacksonville, Oregon. USA

Mark Earnest

Jacksonville, OR USA – Monday, May 28, 2001 at 15:57:02 (PDT)


My wife has just had a category IV GBM tumor removed from her brain. We are scared but hopeful, as the surgeon (Dr. F. Simeone) got all of the tumor, which in itself was relatively small (according to our oncologist, Dr Robert Aiken). My wife is 41 yrs old and we have 2 girls 9 and 11 yrs old.

I pray that we have the strength to face this challenge.
Thank you for sharing your story. One day, I hope to be able to share our story, as I know it will have a happy ending, so that we may give hope to the newly diagnosed.

Thomas J. Vosbikian

Marlton, NJ USA – Saturday, May 26, 2001 at 12:50:52 (PDT)


You are an inspiration to us all – and a nice website.
Good Luck

Maurice Weiskop

Melbourne Australia – Thursday, May 24, 2001 at 09:11:41 (PDT)


I am so pleased for you and your family, that you are surviving ‘the monster’. I am also pleased for all GBM(or other BT) fighters that you have shared your experience with us.

Stories like your own, help others to gird up for battle and that includes against all those who give the ‘give up..no chance message.’ Sometimes this comes from the most unexpected quarter…iced with all sorts of reasons. So thank you from the bottom of my heart. May you and yours and all GBM soldiers continue to have the best of results and a blessed, fulfilling and happy life.

Carolyn Unwin

Cairns, Qld Australia – Sunday, May 06, 2001 at 17:02:21 (PDT)


Thanks for your story, yes it is great to hear of survivors. I had a grade 2
astrocytoma in 1994,which after a clean bill of health returned in Feb 2000 as a grade 4. I have had the standard radiation after complete surgical removal. I am now
receiving PCV chemotherapy as a preventative measure. After great research and talks with a wide variety of specialists I also take a prescribed drug, anafranil, which is showing some promise along with selenium and certain juices with tumeric daily. The internet is
a great support, but as yet I have not found a British site or British survivors stories, where are you? Let me know if I can help anybody or if you have any
snippets of research that are worth looking in to. We all need to think together to keep the survivors
surviving. We have attended conferences and spoke to many specialists personally, but I still believe you need to have knowledge to be able to
pursue what you believe is best. I am 36 with a wife who is fighting very hard and 3 young children who need me to survive. Good luck to all in the race.

Dave and Jeanete

dave

Doncaster England – Wednesday, April 25, 2001 at 13:07:45 (PDT)


Thank you for your inspiring survival story! My step-dad, Dennis, was diagnosed with GBM 3/12/01 and had surgery to remove a 7cm tumor from his left frontal lobe, near the speech center, 3/15/01. His post-surgical MRI was virtually 100% tumor free, as was his baseline MRI for the chemo trial he is part of through Henry Ford Hospital, Detroit, MI (using oxaliplatin). He is having very few side effects from the chemo and other than speech therapy and depression he is doing well. Your story is very hopeful and I will share it with my step-dad and family. Thank you for your continued support for others with brain tumors. All my best to you and your family.

Stephanie Hicks

Garden City, MI USA – Friday, April 20, 2001 at 07:50:47 (PDT)


glad to know you are doing VERY well my husband has an oligodendroglioma \mixed
with astrocytoma, in right parietal lobe,90% debulked nov.7th 2000, he is 48 years
old., and has stopped taking his dilantin {meds for seizures) with NO ILL EFFECTS but i watch him to be sure he is doing VERY well now ,he is due for an mri in may to check for any regrowth chemo and radiation are LAST RESORTS as they can cause dementia and radiation necrosis

sue kleiman

ferndale , n.y,. USA – Thursday, April 19, 2001 at 07:33:44 (PDT)


John: mi hermano ha sido diagnosticado de GBM hace diez días. Tiene 43 años. No puede ser sometido a intervención quirúrgica. Lleva 4 sesiones de radiación y está respondiendo bien. No puede hablar.

Tus comentarios nos llenan de esperanza.
Thanks John ¡¡¡
Luis.
Spain.

luis moreri

valencia spain – Tuesday, April 17, 2001 at 14:49:43 (PDT)


Hi John,
Thanks for your inspiring story. My boss and his wife just received the diagnosis
that their 15 year old son has glioblastoma grade 4. My boss and his wife are also the God Parents of my son so they are like family to me. I want to foward your story to them, I think they could appreciate it.
Congratulations on your 4 years without recurrence, you beat the odds! Iva

Iva Katon-Benitez

Atlanta, GA USA – Monday, April 16, 2001 at 07:36:22 (PDT)


John, Thank you for your story. My Mom was diagnosed with a GBM 6 months ago. She has undergone two surgeries and radiation treatment. We are considering taking her to a clinic in Germany for a treatment called hyperthermia with low dose chemotherapy. You’re story is an inspiration. I needed to hear what you had to say. My Mom’s tumor has produced a large cyst and has caused aphasia. Lately she has been very dizzy and had problems walking. She also recently had a hip replacement. Thanks for your story and I wish you and your family many happy years together!

Kelly Bomar

Dallas, TX USA – Saturday, April 07, 2001 at 22:02:16 (PDT)


I am very thankful I found your web page I read your story and passed in on to my father. (This is actually my second time reading your story.) My Father had a mild stoke Nov 18, 2000 2 weeks before his 51st birthday. They did a biopsy to find out it was GBM Dec 14th. At that time the Neurosurgeon did not suggest we do surgery due to the way it had started to follow the connectors from the right side to the left side of the brain. He went through Radiation and Chemo treatment at the same time. Thankfully he never had a side effect from the treatment. Last Thursday morning he had a seizure and went back to the hospital. They did another MRI and found it had grown much more than anticipated. The team working on this decided that they needed to de-bulk the tumor now. The swelling and growth were really affecting his ability to use the left side. Well surgery was last night and he is doing well so far now they were able to remove 80% of the tumor now we just have to wait and see. They put Gliadel Chemo wafers in the bed to see how that would help fight it off. This has been hard on our family, Dad is the youngest of 5 and my grandmother is still as bright as ever. My brother and I both moved back from out of state to be close. Dad had never spent a night in the hospital before this. (He was even born at home) He has always been outgoing and on the move. Your story gives us all hope. Thank you for writing about it.

Brian Anderson

Omaha, NE USA – Thursday, April 05, 2001 at 23:42:55 (PDT)


JOHN I AM SO GLAD TO SEE SOMEBODY WHO IS DOING SO WELL NO MATTER WHAT GRADE GLIO.I WAS DIAGNOSED WITH A GD4 MAY LAST YR HAD OP , 30 RADS AND NOW GOING THROUGH A TRIO OF CHEMO EVERY 6WKS
I HAVE A POSITIVE ATTITUDE ENCOURAGED EVEN MORE BY STORIES LIKE YOUR OWN MY SON GETS ME THROUGH MOST
DAYS, AS WELL AS LOOKING FORWARD TO MY WIFE’S 40TH, VETTING MY 2 GIRLS
BOYFRIENDS, ARGUING WITH MY SON ABOUT BUYING HIS FIRST CAR AND ALL THE OTHER LITTLE THINGS WE TAKE FOR GRANTED WILL BE A NATURAL COURSE ANYWAY JOHN KEEP UP THE FANTASTIC PROGRESS ALL THE BEST THE HARRIS CLAN

Ian

Telford England – Wednesday, March, 28, 2001 at 04:28:06 (PDT)


hi, my name is Mandy, I’m 15 years old and my mom was diagnosed with glioblastoma multiforme Feb 4, 2001 she is in the hospital and is starting radiation and BCNU (chemo). i just read your story and it gives me more hope to keep trying
even though I’m not going to give up. i have a little sister that is only 8 years old and an older brother that is 17. your story is very encouraging and
I’m very happy for you and your family. could you please e-mail me back, I’d very greatly appreciate it.
thanks a lot.

Mandy VanDyne

 IA USA – Thursday, March, 08, 2001 at 14:21:38 (PDT)


John, I wish you and your family the VERY best for the future. Your story is so inspiring and I greatly admire your courage! My husband was diagnosed Christmas Eve 1998 and had an emergency craniotomy for a grade 3-4 anaplastic
astrocytoma/mixed glioma at 40 years of age. He has since had 2 recurrences (most recent in Oct. 2000) and had resections for those as well. He did have standard radiation therapy during the summer of ’99, and after much resistance, has been using the oral chemo, Temador for the past 5 months. He follows a VERY strict diet and supplement program (we’ve even gone out of the country for alternative treatments). I believe he now has a great "team" of specialists in his corner (a highly skilled neuro-surgeon, open-minded neuro-oncologist, incredible nutritionist, brilliant [second] oncologist, wonderfully supportive family doctor and a loving wife [that’s me!] who won’t give up). Like you, we thank God for each and every day we have together (we have two children 11 & 13). I am also so grateful that my husband is still the same "personality" he was before this all began. He has suffered no physical, emotional or mental damage, even though he has had 3 surgical procedures to the frontal left lobe of his brain. My prayers go out to all who are stricken with this horrible disease and to those who love and care for them.

Terri Reinhart-Rallis

Alexandria, PA USA – Thursday, March, 08, 2001 at 11:06:38 (PDT)


Thank you for your story. My mother was diagnosed with GBM yesterday. Your story has really given me hope and restored my faith in God. Your absolutely right . . . never give up. We go for a second opinion next week. Your prayers are greatly appreciated.

Ancel Hall

Germantown, MD USA – Tuesday, March, 06, 2001 at 13:32:43 (PDT)


Hello John, My brother, John, has been diagnosed and already had surgery in Hartford this Monday. He faces radiation and plans to go to Boston. I’m so glad to read about your winning battle. I t gives hope. I survived ovarian cancer-10 years now. Pray for us. Gail

Gail Julian-Fiorini

Stafford Springs, CT USA – Saturday, March, 03, 2001 at 08:30:57 (PDT)


Congratulations on your victory John. Your story is inspiring and helps to restore my faith in a God that I have recently begun to question. My 29 year old brother-in-law is currently fighting a battle with a GradeIV-V GBM. He has had surgery and chemo, but seems to be going downhill rapidly since December. He is paralyzed on his left side but still tries to get around as best he can. Started to have some effects on his personality over the past three weeks and that is so hard to deal with. I know what may lie in store for him, but am thankful for every minute that he is still here, and have not given up hope. Hope that you continue to do well and really thank you for putting your story out here for us to read. Prayers go out to you and your family, and the families of all who stop by your website.

Jennifer Whitley

Mount Kisco, NY USA – Friday, March, 02, 2001 at 09:32:45 (PDT)


John I was surfing the net. what a find, as i am just learning to use a computer. i am hoping to find out something about a pineal tumor which i have. keep up the good work and inf. lorna.

lorna hogan

warner robins, ga USA – Sunday, February 25, 2001 at 15:22:35 (PDT)


Thanks for your web site, it is encouraging to get information from people are going though the same thing. I was diagnosed in Nov 2000 with Glioblastoma Multiforme, I have also had surgery and 33 treatments of radiation. I wait results of scan on 27th March 2001. I was on 32mg Dexamethasone for many weeks after the biopsy. I am reducing this medication and am down to .5mg. I suffered with terrible bone pains in the legs, no one seems to have any idea why. My weight has gone sky
high, fluid in the face and shoulders, I have facial hair growing whilst my hair on my head has disappeared in 3 areas. My surgeon also states I would not be legal to drive for at least 3months after radiation, and even then would have to permission from the road
authority. I must admit I still don’t believe its happening and haven’t got fight in me as yet, maybe disbelief, also I am so tired of the tiredness. I would appreciate feedback if possible, I am not sure what is expected of me. I am normally a strong individual can always help others but not good on how to get myself the energy to fight this.

Carole Farrelly

Mt Eliza, vic australia – Friday, February 23, 2001 at 05:29:29 (PDT)


Your life is truly a testimony to God’s ability to heal.I pray continuously that God will heal my husband who has GBM4.He was dx on 12/00 had surgery same
date. Has had 30 rounds rad, was on temodar, thalidomide and interferon for 30 days
also. the last ct scan showed no new growth. His wbc has taken a dive though, so
we are praying for it to come back up so he can come home.He has not been home since dec 10,2000.I do thank God for bringing him this far and for showing us that there is hope for recovery.My husband also had a stroke when this happened but is showing movement on his left
side, praise the lord.
R.Sassman sassy_termite@hotmail.com
richmond texas

R.Sassman

richmond, tx USA – Wednesday, February 21, 2001 at 15:30:18 (PDT)


It’s so nice to see that people can actually survive this thing! My father (now 56) was diagnosed with a grade 4 GBM in September ’99, following a
seizure and a diagnosis of MS. He had surgery followed by weeks of radiation, steroids that caused him to gain 20 lbs. in 3 weeks (wow!!) and lots of chemo. Up until this past
November (’00), you would not know anything was wrong with him. He was loving his retired life, and the tumor was steadily shrinking. Since November, the tumor has grown into the midsection. He can’t walk, and his memory fades in and out, and he has lost a lot of speech. He also lost his voice, it’s only a whisper now, but that seemed to happen with the chemo. About 2 weeks ago they decided it was time to stop treatments and go to hospice care. It’s very depressing, but I am so glad to see that so many of you are beating it! Your story is an inspiration! Thank you.

Abby

Wilmington, DE USA – Thursday, February 15, 2001 at 12:59:54 (PDT)


Hello John,
I am a Naturopath in Australia, and was very moved by your story. Your journey has been a truly remarkable one.
You are very courageous and inspirational in your quest of continually researching your disease and questioning the opinions. One of the most important factors that I have observed long term
survivors of life challenging illnesses have in common is their ability to find real meaning in their life and through this pathway discover inner peace and contentment, which is no mean feat when your life is threatened in this way. The body has an amazing ability to heal when placed in an
environment conducive to healing. By this I mean, firstly sorting through all the internal emotional baggage,
discarding that which is no longer of service and holding onto and nurturing the parts, thoughts, emotions and belief systems which
acknowledge and affirm yourself.
Good diet, surrounded by loved ones, taking supplements which enhance your well-being
etc etc etc. are all life affirming.
May inner peace and divine contentment be yours.

Yvonne Altclass

Sydney, nsw Australia – Friday, February 09, 2001 at 20:09:39 (PDT)


It is so encouraging for a new patient like me see so many success stories. I was just
diagnosed on January 5th, 2001

Leo Blanchard

Saginaw, mi USA – Sunday, January 28, 2001 at 07:47:40 (PDT)


Thanks for your story its given us some hope – Our son Michael has been diagnosed with a grade 4 Glioblastoma, he is only 9 years old and the doctors have given him 12 months without radiotherapy but several years with the therapy, the only brief piece of hope the doctors gave us was that it was extremely unusual for a child to get this type of tumour and that a child may fight it differently. If anyone out their has any news of children with this disease I would be extremely appreciative, my son was diagnosed on the 14 Dec 2000, this was after they had removed as much of the tumour as possible during the biopsy.

Jim McDonald

England UK – Saturday, December 16, 2000 at 16:04:19 (PDT)


How blessed are you to be given this gift of life twice! And thank you for sharing your story to give all of us hope and faith. My thoughts and prayers are with my very dear friend Joe Keefe and his wife Jennifer and their children as they take on a similar battle.

Mracie Mills

Venice, , CA USA – Wednesday, December 13, 2000 at 12:43:36 (PDT)


I’m a 13 year survivor of GBM

Tim Herron

Sugar Land, TX USA – Wednesday, December 13, 2000 at 11:51:48 (PDT)


Thanks for sharing! Hope is a tremendous force within all of us and it is important to know that people are beating the odds. For a good friend of ours we pray and hope for a similar
success-he certainly has tremendous support.

Mary Cahill

Walpole, MA USA – Friday, December 08, 2000 at 16:10:43 (PDT)


An inspiring account! I look forward to reading more encouraging updates and wish you all the best …

Jim Farrell

Manchester , CT USA – Friday, December 08, 2000 at 03:25:17 (PDT)


My dad was recently diagnosed with GBM. He was a very healthy 51 year old male with seemingly no health problems. His started out with headaches which my mom contributed to stress (his mom had terminal lung cancer) then started having episodes like TIA’s (mini strokes). He went to his family MD a couple of times and he wanted to do a CT. My dad wanted to wait due to my grandmother was in bad shape. She passed away the first part of August 2000. 2 weeks later, my dad had 3 “episodes” and went to the ER. They did a CT and confirmed a brain tumor in the ER. He went for an MRI the next week on a Tuesday and had surgery that Saturday. The pathology report came back with
GBM. … I refused to give up on my Daddy. I am going to think the best and hope I have him as long as I can in my life and make every opportunity I have with him the best. Thank you for your inspirational story. I have printed it off to take to him when I go visit this weekend and hope it gives him some encouragement. Thanks again for sharing your story.

Sheree 
KY USA – Wednesday, September 27, 2000 at 12:57:16 (PDT)


Hello from Germany

Great work you have done. If somebody is interested to learn more about the GBM of my wife Ute – located in the cerebellum and diagnosed 4/2000 – and about our somewhat
unusual therapy form, please have a look at the tumour diary at http://www.untertage.com/tumor/tumor.htm. Sorry, only in
German language, but probably worth a visit though

Thomas
Thomas Krassmann  

Germany – Saturday, September 23, 2000 at 08:34:35 (PDT)


Help! A dear friend was diagnosed w/GBM Dec, 98. Has had 3 surgeries and can’t have anymore w/this Dr. She’s had radiation and chemo so she is not eligible for any of the clinical trials we’ve checked. There just has to be something out there in this high tech world that can get this nasty thing out of her body for good. If you know something that might help, please email me 
E Williams 
Bryan, TX USA – Tuesday, September 19, 2000 at 11:57:35 (PDT)


John, I am extremely happy for you… Stories like yours is what helps my family cope. Two weeks ago my mother, healthy 59 year-old, received an MRI after several failed attempts of relieving
migraine type headaches. Much to our surprise she was diagnosed with a type 4
GBM located above her left eye in the frontal lobe region. As I am sure everyone else has experienced, our family is frantically searching for information, suggestions, and success stories, like yours. Mom had her surgery, and the surgeon is confident that he was able to get everything he could see. We are now at the point of interviewing oncologist and radiologist, and searching for some direction….
John, I am happy for you and will add you to my prayer list for your continued success.
To anyone who is reading this; as I pray daily for all those families that go through this, I ask that you take a moment in your prayers and think of my mother, Sandy Clinger. – Thank you to all, and I wish all of you the best of luck.

John Clinger 
Fort Myers, FL USA – Wednesday, September 13, 2000 at 11:46:19 (PDT)


Dear John,
I keep coming to your site awaiting the next update. Nearly 5 months ago, my boyfriend was also
diagnosed with GBM. They tell us surgery is not an option but we are going for a second opinion next week. So far he has made great progress & has been back to work & driving since July. He has a few deficits but they are
livable. Thank you for sharing your story with the world. Praise be to God who blesses each of us with another day on earth.
I’ll be checking on you.
Take care.

Kimber 
Chesapeake, va USA – Monday, September 11, 2000 at 13:48:53 (PDT)


 My dad was diagnosed in march 99 right before his birthday, Had a
Glioblastoma grade 5.we had brain surgery and radiation, but was not given
Chemo due to his age…He was in perfect health up until this evil tumor got
him…… he like all of you never gave up hope, i had the honor of taking care
of him till his end being a nurse….He was a fighter till the end Dad lost his
battled Feb 3rd 2000, just a bit over a year of the surgery…..I am so sad yet
happy to see all the wonderful fighters on here….I am saying prayers for all
of you to keep up the fight…..Its was just dad and me I had no-one I wish I
would have found all of you sooner….. God Bless all of You! judi

judi 
USA –
Sunday, September 10, 2000 at 10:21:05 (PDT)


Hi everyone. My father has a very interesting history. At 20 years old he
had a grade 2 or 3 astrocytoma. They told my grandparents there was no hope
whatsoever. He had been having intense headaches and vomiting for over a year.
He had surgery and was in the hospital for four months (1955 – quite a different
healthcare system!) He permanently lost his central vision in his right eye. He
had to switch hands and learn to write again. He had to learn how to speak and
walk again. After surgery they gave him an immense blast of radiation. Believe it or not, this man went on to marry, have 5 children, and attain a
PhD in
Education. He retired from his university 6 years ago. On Aug. 10, 2000, my dad
had surgery for a glioblastoma multiforme.(same site) They were able to get all
they could see. Because he had such a huge amount of radiation 45 years ago,
they are suggesting chemo. So far, they are refusing to give a prognosis due to
his unique case. My brothers and I are feeling very frustrated with not knowing
what’s next. 2 months or 2 years? chemo or nothing? quality of life? Any
thoughts or advice for us? Thanks. Your story is inspirational.

kathy 
canada
– Monday, September 04, 2000 at 11:02:34 (PDT)


And I thought that I was special. I now know that my dx of GBM on the 8th
Aug 00 is not the end but the start. I will beat this disgusting little interruption
to my 47yrs of taking life for granted and this page is helping me.
Take care. Bloody Decadron/Dilantin/Brachytherapy/resection.

Colin 
Belleville,
MI USA – Wednesday, August 30, 2000 at 20:05:39 (PDT)


My 39 year old husband was just diagnosed on Monday with GBM. It started
with headaches and gradual loss of peripheral vision in the right eye. We have
enrolled in a clinical study at Henry Ford Hospital in Detroit that gives a
combination of radiation and an experimental drug called carboxyamido triazole.
His tumor was resected on 8/26/00. A follow up MRI will be done tomorrow and
then we will meet with the neuro-oncologist. It was nice to read your stories of
hope after reading all the doom and gloom clinical statistics, but statistics
are just that. Positive stories of hope like yours keep us inspired to keep on
pushing and not take no for an answer. Keep the positive energy
flowing.

Monica 
Clinton
Township, MI USA – Wednesday, August 30, 2000 at 11:16:38 (PDT)


John, I was doing some surfing on the net and came across your inspiring web site. Thank you so very much for sharing your story with us. My dad
(father-in-law of 29 years) just had his second surgery a month ago. He has a
grade iv gbm. The first surgery May 4th was with the removal of the tumor being
1.5 centimeters. He did go thru the 35 treatments of aggressive radiation and
one 3 day treatment of BCNU. The surgery Aug.4th ended up with a much larger
tumor, golf ball size. The surgeon removed part of the left temporal lobe. Dad
is doing well considering what he’s been through. He has memory and speech
problems, depends on how tired he is to what level of difficulty it is. He did
regain his full use on his right side. Which has been wonderful, he can even go
outside and take walks, up to 3 blocks as of today. We’re very proud of him, and
so thankful for each hour and minute we have with him. Your story gives so much
hope. Thank you for sharing it with us. God bless to you and your family.

Janet Hoyt
San Diego, CA USA – Monday, August 28, 2000 at 22:43:29
(PDT)


Dear John: Your story is the first I have taken the time to read on the
Internet and I want to thank you for the time you have given to enlighten
others. My wife of 57 years is the patient and I would like to know just what
the prognosis is and to hear from anyone who has had such massive surgery. The
decision that my wife should have this surgery was taken out of my hands by our
daughter, a nurse for many years, and her mother. Our daughter got a power of
attorney over her mother’s health and my wife signed over her care. All the
while I said no surgeon will touch my wife without talking to me. But it was
done and my lawyer told me that it was legal. Well, legal or not it was immoral.
The admission papers clearly stated that she was married and when I got the
surgeon on the phone, much to my surprise, he said that he was sorry but that he
did not know that I was a part of the equation! My wife seems to understand
everything going on around her but rarely voices a word. Her legs are in
constant movement. She eats well and looks good. She is put in a wheelchair for
our dinners fairly often. Unfortunately she has not cooperated with the
therapists. She is still on Decadron and Dilantin and the doctor will be asked
today about increasing the dose of Dilantin because she is having an occasional
seizure. But let me ask here if any of your readers have knowledge of a similar
case and what now might be the prognosis? The only good thing about this whole
experience is that my wife does not suffer from any pain. Blessings to you and
your family and thanks for being here on the Internet. Bob Allen

Robert Allen  
Covington,
GA USA – Monday, August 28, 2000 at 06:38:04 (PDT)


Thank you for sharing your story. My father, who is 65 was diagnosed with a
Glioblastoma/Gliosarcoma on 5/20/00. He was operated on 5/22/00 and they say
they were able to do a total resection of the tumor. The doctors say he has a
50% he will live one year. He has completed 33 treatments of radiation and now
we wait till 8/25/00 to get an MRI. The doctors here say that chemo doesn’t
help, i was happy to hear it helped you. I am definitely going to question them
on Temodor. They want to do stereotactic radio-surgery on him. Did you or anyone
you know ever have that done? This has truly been an overwhelming couple of
months. I keep searching for different treatments but i just don’t know what
path to go down. Sometimes I feel so helpless. Your story has given me hope, and
for that, I thank you from the bottom of my heart. Good luck to you and God
Bless. Deborah Cavaliere

Deborah Cavaliere 
New
Port Richey, FL USA – Thursday, August 10, 2000 at 06:38:55 (PDT)


Dear John. It was very encouraging and inspiring to read your story. I hope
the promising results will continue, so that you eventually can break your
doctor’s record as a survivor of glioblastoma. My father has just received the
same dismal diagnosis, and your story has given me new hope. Thank you for
sharing your experience and the very best regards to you and your family.

Jesper Rasmussen 
Copenhagen, Denmark –
Wednesday, August 09, 2000 at 04:07:23 (PDT)


My mother had surgery to remove her tumor in April, 2000. Has received the
four weeks of radiation surgery, followed by one week of stereotactic radiation
surgery with a radiation sensitizer. It gives me hope that there are survivors
out there – albeit few. Thank you for sharing your stories. I’ll include you in
my prayers when I pray for her.

Sherry Mutchler 
Neenah, Wi USA –
Monday, August 07, 2000 at 11:29:30 (PDT)


I JUST FOUND YOUR WEBSITE AND WAS NOT JUST IMPRESSED WITH YOUR STORY BUT
THAT OF ALL THE OTHERS THAT HAVE RESPONDED TO YOU WHO ALSO GBM. WHAT HOPE.. THEY
ALL SEEM SO POSITIVE. MY WIFE OF 20 YEARS WHO IS 40YRS HAD A BASEBALL SIZE TUMOR
REMOVED FROM THE LEFT SIDE OF HER HEAD (GBM) ON MAY 5TH 2000 AND WE ARE IN HER
4TH WEEK OF RADIATION ( SHE ALSO NOW HAS A MOHAWK) AND EXCEPT FOR THE HAIR LOSS
YOU WOULD NEVER KNOW ANYTHING WAS EVER WRONG. WE TOO WERE TOLD BY THE DOCTORS
THAT SHE HAS 1 TO 2 YEARS TO LIVE. BUT SHE IS A VERY STRONG GIRL AND AFTER
READING YOUR STORY AND READING WHAT YOUR WELL WISHERS HAVE WRITTEN I NOW HAVE A
BIGGER AND BETTER HOPE. THANKS FOR MAKING MY DAY … ALL OF YOU .. ALSO I WOULD
LIKE TO ADD THAT I THINK THAT THE DOCTORS MUST TELL YOU THE WORST FOR 2
REASONS…1ST FOR LEGAL REASONS AND 2ND WHEN YOU LIVE 10, 20, 30, YEARS AND
LONGER IT MAKES THEM LOOK LIKE HEROES. I HOPE THAT ALL OF YOU OUT THERE WITH GBM
MAKE YOUR DOCTORS LOOK LIKE HEROES. GOOD LUCK. I WILL BE KEEPING YOU UPDATED
ABOUT MY WIFE AND I HOPE TO LEARN MORE FROM YOU IN THE FUTURE. THAT STUPID
BUMPER STICKER THAT I SEE ON CARS ALL OVER THAT SAYS “ONE DAY AT A TIME” DOESN’T
SEEM SO STUPID ANYMORE. GOOD LUCK 🙂

DAN SAKO 
CHGO., IL USA –
Saturday, August 05, 2000 at 02:15:20 (PDT)


I found out two days ago that my mother has Glioblastoma Multiforme. She is
47. She had several seizures on 6/24/00 and a crainotomy on 7/13/00. Radiation
starts next week, followed by chemotherapy. I knew for a while that the tumor
was malignant, but had no idea that it was so bad. This has all been an
overwhelming experience. I’m glad that you were able to beat this, I hope that
we can do the same.

Sarah Waterman 
Austin,
TX USA – Wednesday, August 02, 2000 at 13:27:16 (PDT)


Hey, John! Thanks for telling about this web-site. You responded to a
message from me in the cancer forum. I printed your story to give to my mother.
Your story is very encouraging. GOD BLESS!

Jennifer Boyce 
USA
– Wednesday, August 02, 2000 at 09:42:02 (PDT)


hi john! we are so happy to see you looking great!! we remember you in Dearborn, met
a lot of nice people there. we read all of your story. putting this
out there really helps others and gives the hope we all need. we must
remember-NEVER GIVE UP!! we are so happy for you and your beautiful family.
thanks for the photo gallery, and thanks to jan. peace, love, joy and healing,
karen fritz. kfritz1045@aol.com

karen fritz and jim fritz 
akron, oh USA –
Friday, June 23, 2000 at 23:49:02 (PDT)


Hi John. What a story; thanks so much for making it available for all of us.
Your grit and good fortune is inspiring. Good to meet you at the BT conference,
too. Smiley faces, and all.

Jan Klooster 
Chatham, ON
Canada – Friday, June 16, 2000 at 18:43:26 (PDT)


Reading your history has given me the first real sense of hope for my
brother, Brian’s, recovery in months. Thanks very much for sharing your story
and I hope everything stays in a positive direction for you and your family.

Peter Foote 
Montpelier, VT USA –
Thursday, June 15, 2000 at 13:28:26 (PDT)


I just lost a good friend to this disease and was searching the internet for
information on it. “chief’ was a wonderful man and father. He died at the age of
45, leaving his two sons and wife. We all will miss him. Good luck in your
journey.

Dae Mackenbach 
Los Angeles, CA USA –
Tuesday, June 06, 2000 at 11:45:12 (PDT)


Thank you for putting in the effort to create the site. A friend of mine is
undergoing tests at present for possibly a brain tumour. We hope to God it
isn’t. I’m afraid I didn’t know much about it before this and in some ways I
wonder am I better off not knowing. I’m happy to hear you overcame your illness.
Statistics are often to be ignored, everyone has a chance because everyone is
different. Hopefully future generations will not have to have such worries as we
decipher the workings of the human body. You story gives hopes to all. I wish
you all the best in the future. The whole world is caught up with such
unimportant things, its good that people like you can make them think again
about what is important in life. Kind Regards Fergal

Fergal O’Callaghan 
Cork,
Ireland – Friday, May 12, 2000 at 08:14:12 (PDT)


Way to go, Big Guy! I’m truly impressed by your determination and healing.
No one wants to be a hero in quite this way, but you are and I am grateful in
knowing you better than just what I read on the BT List. This disease is as
different as the people who have it. May you live long enough to watch your
grand-kids graduate from college! Love, Martha Jo The little ol’ granny with an
aaIII/oligo brain tumor who jumps out of perfectly good airplanes for
fun!

Martha Jo Chalmers 
Berkeley,
CA USA – Friday, April 28, 2000 at 15:25:06 (PDT)


John, I was diagnosed with a low grade glioma 9/98 and the tumor is still in
my heard (long story). I have seen some of your postings on the braintmr board
but had never seen your website story. I immediately pulled out my biopsy report
and compared “words”. Being the detail fanatic that I am, your story was so
interesting and the fact you put MRI’s, bio reports, etc. was so helpful. Never
mind that your condition sounds wonderful! I have just added this to my
“Favorites”. I wish you well for the future and will watch for your postings.
Ginger

Ginger 
IL USA – Friday,
April 28, 2000 at 09:21:21 (PDT)


My granddaughter will be three in June 2000. In February 1998 she was
diagnosed with a very large Glioblastoma. The surgeon had to perform emergency
surgery because she was dying and had to remove the entire left side of her
brain. She had a stroke and took chemo for one year. Currently taking physical,
occupational and speech therapy but our family and her doctors think she is a
miracle. She is very bright and loves everyone. Lots and lots of prayers where
answered for us. Lots of luck and God Bless.

Mary Gomez 
USA – Friday, April 21,
2000 at 22:15:51 (PDT)


Your experience did alot to further my hope that my 41-year old husband will
survive his bout with a grade iv, inoperable, glioblastoma multiform. Now for
our story: On Feb 12, 2000, we had made arrangements with a group of close
friends for dinner at a local restaurant to celebrate valentine’s day. That
morning my husband confided that he was experiencing, for a week or so, dizzy
spells and double vision. I urged him to see a doctor, which he did, and the
doctor told him he had an inner ear infection which will go away. His condition
persisted and a few days later my husband saw an ear specialist who prescribed
steroids for the dizzyness. Rather than improving, my husband’s dizzyness
worsened to the point where he was unable to drive. The ear specialists
recommended an MRI. The MRI showed a lesion in the left temporal lobe. A
neurosurgeon, supposdely a leading authority in the Washington area, diagnosed
the lesion as multiple sclerosis and recommended we see a neurologists. Two days
later the neurologists admitted my husband to Fairfax Hospital (2 wks after the
valentines dinner). At this point my husbands motor functions had completely
degenerated. His right side was virtually paralyzed. His balance was totally off
so he could not walk unassisted, he forgot his vocabulary and his short term
memory was shot. A biospy was performed to determine the type of tumor. The
hospital neurosurgeon was absolutely confident that my husbands tumor was a
lymphoma. However the biopsy report found the tumor to be a grade iv gbm. I did
question how certain the pathologists was on this finding and was told that the
pathologist was absolutely certain because the tumor did not show the tell-tale
markings of lymphoma, instead exhibited the markings of a gbm. A week after his
admittance to the hospital, my husband was bed ridden, virtually paralyzed, and
in a coma-like state. The quarter size tumor is deep in the left temporal lobe
above the brain stem. The neurologist told me that this coma state was the best
condition I would ever see my husband in, and recommended I consider hospice
care for the remainder of his 5-6 months of life. You can well imagine how I
felt when I heard this imminent death pronouncement, yet something inside me
made me say to the doctor “what do you know”. I got rid of the neurologists,
consulted with the oncologists, and resolved that doctors cannot with absolute
certainty predict the outcome of a fatal disease. Even if the survival rate is
1-2%, with 11000 brain tumor patients a year, those statistics mean that 100-200
brain tumor patients are potential survivors. Why won’t my husband be one of
those survivors? Looking at the numbers from this angle, I stopped focusing on
death and started to focus on life. Fortunately, the neurologist was proved
wrong. My husband is responding well to the combination of chemo (temolozomide),
radiation and thalidamide. He is slowly regaining the motor and mental functions
he had recently lost. Many friends and colleagues call me to express their
sorrow, yet I feel like saying there is nothing to feel sorry about. While it is
true that my husband is still fighting to “slay the dragon”, this experience has
helped us both to grow emotionally, psychologically, and spiritually in ways I
never experienced before. For this reason I feel we are both very fortunate. I
now hope and pray that my husband will be given a “second chance in life”. Best
of luck to you and your family. If you ever feel the need to talk, please call
me at 703-757-8150..

Cathy
Kominos
 
Great
Falls, VA USA – Wednesday, April 12, 2000 at 11:45:39 (PDT)


My husband had surgery 2/22/00. He has is in rehab and the 4th week of
radiation. Your story is encouraging and we are praying for a full recovery as
well. He is a fighter and know he will do everything possible to get well. He is
only 57 yrs old and should be strong enough to endure chemo. Thanks so much for
your story. God Bless!

Gaylann Hicks 
Cordova, TN USA –
Thursday, April 06, 2000 at 07:14:00 (PDT)


Dear John It has been very inspiring reading your story. My Dad was
diagnosed with GBM Grade IV in August 1999. He has had a course of radiotherapy
and has responded very well. His tumour has shrunk to a quarter of it’s original
size. He is on a course of steroids, 3mg of which keeps him normal but anything
less than this causes his left side to malfunction. He is unable to drive
anywhere but is now embarking on a daily routine of walking or using his
exercise bike as prescribed by his physiotherapist. He goes for physio once a
week and finds a marked improvement when he’s been in the hydro-pool.
Coincidentally my Dad discovered his GBM tumour after being laid off at work and
going through immense stress – could this be a contributory factor? I am now
sending my Dad an e-mail with all the virutal trials information on with your
story was highlighted. May I take this opportunity of thanking you for the hope
you have given, as my Dad is a fighter like you and he too will pull through
this testing time. Thank you for sharing your news. Love to you and your
wonderful family! Take care and keep the positive news flowing. Lisa J.,
Ipswich, England.

Lisa Fryer 
Ipswich,
Suffolk United Kingdom – Thursday, March 23, 2000 at 15:58:32 (PST)


Praise God! What an encouragement you are! The love of my life, my husband
Tom, was dx with AA Grade II Dec. 10 ’98. 31/2 weeks later second surgery Jan
13, ’99, the dx was GBM Grade IV! He had 6 weeks of radiation w/RSR13, currently
on 11th round of chemo (Temodar) and the tumor continues to shrink! For this we
give praise to our Lord! He also takes the Zofran and Phengren, but continues to
stay nauseous and sometimes throwing up during his chemo treatments. When he
comes off of it, you’d never know he had anything wrong. Tom has always been
goal oriented and is a fighter, Never and Can’t are not in his vocabulary!! This
has really been a challenge for him and our family. He is now a 15 month survivor
and I pray he, like you, will continue to survive! God bless you and your
family! So glad I came across you site!

Ellen Snider 
Atmore, Al
USA – Thursday, March 16, 2000 at 22:00:41 (PST)


Dear John I’m so happy for you and your family, and wish you all the best
for the future. Sadly my father was diagnosed with this devastating disease
January ’99. His oncologist told him the bad news was that he was suffering from
GBM, but the good news was that he was only 56 years old, and would therefore be
able to handle the treatments better. He is extremely brave and is hanging in
there. Lots of love from his family and friends keep his spirit up, but his
faith in God gives him the piece of mind that we can not provide for him. Thanks
for sharing your story.

Barbara 
Denmark
– Tuesday, March 07, 2000 at 13:48:01 (PST)


Thank you so much, John, for sharing your experience with us and
congratulations on your recovery and courage. My father who lives in France was
diagnosed with a GBM about one year ago. After surgery which removed only part
of the tumor, he received about 32 sessions of radiation therapy, and tried
Temodal chemotherapy during 5 months. After a seizure in January he started BCNU
chemo and is doing just fine at the moment. He is incredibly brave, but gets
very emotive sometime and I try to help him out from Spain (where I live), and
your story will give him plenty of hope. Thank you so much and let us know all
your good news..

Delphine de Pontevès 
Madrid, Spain –
Sunday, February 20, 2000 at 08:19:53 (PST)


GLAD TO HEAR GOOD NEWS! MY BABY SISTER HAS GBM AGE 25 YEARS OLD. SHE HAS HAD
TUMOR REMOVED 7-6-99,RADIATION,NOW ON FOURTH ROUND OF TEMODOR. THIS IS A VERY
SCARY THING, TIFFANY IS A VERY STRONG LITTLE PERSON AND WE ARE GOING TO FIGHT IT
ALL THE WAY!!!!!!!KEEP UP THE FAITH, YOUR FRIEND,JIMMIE

Jimmie Streetman 
roysecity,
tx rockwall – Sunday, February 13, 2000 at 07:33:59 (PST)


I am 29 y/o mother of two young boys and I was diagnosed in Dec. 1999 after
what I thought was a month of migraines. I had surgery to remove what the MD said
was 100% of the GBM tumor (grossly) and I am three weeks into my radiation now.
I also plan on chemo after this. The diagnosis was so devastating and although I
have been feeling well and try to maintain my hope every day, I sometimes have
set-backs. I worry about my boys as they are only 2 and 4. I am very thankful
for the fact that I do feel well, other than mild fatigue and nausea, and I know
the situation could have been worse. I just want to be here always for my boys.


Heather K. 
Seattle, USA – Wednesday,
February 09, 2000 at 16:00:39 (PST)


My husband was diagnosed with Glioblastoma on November 1st, 1999. On
November 11th, 1999 he had a resection of the tumor and was released 36 hours
later. He was doing great and started walking about a mile a day. When he
returned to the doctor on November 24th, to have the clamps removed they lower
his medication (decadron) to 4mg three times a day. Within two days my husband
went into a spiral turn downhill. Lost mobility on both sides and transfer back
to the hospital. In the hospital they increased the decadron to 10mg 4 times a
day to get some mobility back. He still had a rough time on the right side, but
was able to regain usage of his body movements. They started radiation therapy
one week later. Then he was diagnosed with a blood clot in his right leg. The
doctors inform us that 44% brain tumor patients develop blood clots, reason
unknown. My husband is allergic to hepron. After different medications and
prayer and our Lord we have now completed the radiation therapy, we are still
trying to get off the decadron. My husband goes back for a MRI on February 22nd,
he knows our Lord is going to give him a present. Also we are to see the doctors, I
guess they will let us know what is next. My husband does not want to
go through chemotherapy. Our doctors said, “the research has shown no great
improvement on patients that have had just radiation and or patients with
radiation and chemotherapy. I am encourage with reading your story. It has gave
me hope for our family. Thank you.

smask 
USA – Tuesday, February
08, 2000 at 06:16:33 (PST)


I’m glad to hear your doing so well. I had surgery on Nov 11,99 for my tumor
which was diagnosed as GBM. Which also happened to be my 39th birthday. Not the
best birthday I ever had. I had a total resection of the tumor. I started
radiation treatments in December for a total of thirty three treatments. No real
problems with that except loss of hair and skin drying bad in the treatment
area. I suffer from male pattern baldness so that really wasn’t a big deal. I
started taking chemotherapy on Jan 28,2000. Was taking a pill form chemo with
the radiation called Hydrea. A sort of sensitizer. I’m now taking BCNU every six
weeks for a year God willing I make it that far. I consider myself lucky because
I’ve been driving every since ten days after my surgery. I drove myself to all
treatments and doctor’s appointments. Even drove to my first chemotherapy
treatment and back home. Haven’t experienced any type of nausea from the chemo
what so ever. Have been tired but handling that ok. I just force myself to do a
little more each day. If I get to tired I just rest a while. I pray you continue
on your road to recovery. Just remember we may have cancer, But cancer doesn’t
have US!

Jimmy Rogers 
Kingston, Ga USA –
Friday, February 04, 2000 at 05:28:11 (PST)


What a find to have happened upon your web page-what an inspiration you are!
My brother-in-law is battling a glioblastoma diagnosed almost 2 years ago. What
a fighter he is too. It seems the chances for long term survival have increased
even more than what you would read in literature published even just a couple of
years ago! It’s wonderful that you are participating in research that will
benefit other people looking for answers. Keep up the good work! Keep me
posted.

Natasha Gold 
Redondo Bch, CA USA –
Wednesday, December 29, 1999 at 23:36:18 (PST)


Gosh, it’s hard to believe that this all began way back in 1997. And I agree
with Frances: the sunglasses are definite proof that everything isn’t back to
normal, yet. You go, John! I look forward to many years of friendship.

Dorr Altizer 
Surprise, AZ USA –
Tuesday, November 16, 1999 at 10:28:53 (PST)


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