Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

God Bless you .  I just lost my brother after a 2 1/2 year batle.  He was diagnoised when he was 40.  This is the worst cancer ever.  He lost everything, step by step.  He walked into the hospital for his operation & came out with his left side paralyzed.  He fought so hard with physical therapy to get back to work & he did for about 9 months.  That is all he ever wanted, just his life back.

 

We need to all stick together & fight this horrible cancer.  Take care & God Bless you all.  I really think the end is harder on the family than the patient.  alexis

I'm so sorry for your brother. Wish you and all the family the  much strength. Since the second operation 29th November 11 days already passed . He's still sleeping . I wonder if he feels me or hear me. Everyday I go to him giving him a massage for his legs and arms . talking , sometimes reading.. Only one thing is changing on him.. his pulse. It's increasing. Normally 57- 70 but when I'm talking it's 90 - 100.. On 7th November was our wedding anniversary His pulse first time increased to 123.. I do not know if it's a coincidence or not.

 All the doctors says the same things and they do not have any hope BUT we still couldn't lose our hope I presume we are all waiting for a miracle.  

Much love,

 

On 9/10/2007 Amy Lynne wrote:

Hi Deb, Dennis and everyone,

 I just got back from seeing my sister.  She was diagnosed in May 2006 with Glioblastoma Multiforme Stage IV.  I told you guys I would get back to you after I saw her.  Well, it was actually worse than I thought it would be in some ways and better in other ways.  Its been 15 months since her diagnosis and well over a year since her surgery and chemotherapy.  She did not come out of it unscathed.  She shuffles when she walks.  She uses a cane.  Her speech is impaired.  Her face looks similar to someone who has had a stroke.  Her eyes are not the same and one corner of her mouth is droopy.  She has no short term memory.  Her long term memory is pretty good.  All she wants to eat is cereal.  She fell out of the shower when my mother was with her alone.  She fell on the floor and hit her head.  She said she slipped on the rug, but I actually think she may have had a mini seizure.  I had to bathe her and she started crying because she could not sit down in the tub.  It was too difficult for her to get down in there so we sat her on the side of the tub and I washed her.  All the while she was crying.  I told her we would get her a chair for the tub and a long shower head so she could spray herself.  I had to hold her on the side of the tub because she started to faint.  She fainted in my arms twice.  She looked at me and started crying telling me I needed to move there because she was going to be gone.  She was depressed alot.  Her husband dropped dead of a heart attack in June and she is grieving his loss so I had to talk to her about death and dealing with her loss.  That was hard - believe me.  I had to tell my mother the truth about her condition because she asked me.  She said, "Arlene isn't going to get better is she?"  So, I told mother I would not sugarcoat this and I told her about this support group and what I have learned about this disease and none of it is positive.  In fact, it's grimm.  Mom took it well but had nightmares all night long.  Mother is too old and too frail to take care of my sister.  My older brother is there as her caregiver since her husband died and it may even be too much for him.  I am encouraging him to look into hospice care.  Sister won't go into a care center.  She refuses and it scared her so no one is going to force her to go into one.  I'm concerned about what is going to come next.  She doesn't seem to be doing all that well to me at this point.  How do you know when its time to bring in hospice?

Thanks.

Amy

 

Hi Amy, I have been following your emails and when I saw this one, I wanted to reply.  It is now December so I don't know if your sister has survived up to this point.  If she has and if you have not called in hospice, do it immediately.  Sooner is better than later.  I found that out with my mom.  she had a terrbile final 3 weeks of her life and I wish we had called in Hospice months belfore that.  She died just over a year ago.

My husband was diagnosed with GlioBF 1 week before our fist wedding anniversary in October this year.  He had a huge tumor, right frontal lobe, stage 4.  He had surgery and is finishing up radiation and oral chemo in the next 2 weeks.

After a time of feeling really drained and eathing nothing but ice cream, jello and watermelon for several weeks, his energy started to return about 2/3 of the way through his treatments.  He is feeling better and stronger and eating normally again.

 My old boss has survived 2 years now, same tumor, same place, same treatments - but he started at stage 3.  He is fine, taking chemo 1 week per month and plays golf a lot.  He does not work.

Please let me know how your sister is doing or if she has passed on.  My love and best thoughts are drifting toward you.

Rhonda

My husband has GBM IV.  I have noticed several references to brain injury prior to GBM diagnosis.  Our oncologist insists that brain injury can in no way cause the start of GBM.  I truely believe a head injury one year ago caused the cancer to start.  Any thoughts or info out there?  Please?

I think you are right.My mom had a car accident in 2001.She had brain injury and terrible headaches and nausea for 5 years.With medications the pain got better.Last year she was diagnosed with GBM grade 4.So I strongly believe that the brain injury IS the cause of that, no matter what the doctors say.

My father inlaw was diagnosed with this cancer back in July of 2006.  He had the tumor removed and they were fairly sure they got it all.  He went through the chemo and radation etc.  He's had a slight personality change.  We aren't sure if its due to the the tumor itself, the surgery or just dealing with the possibility of dying.  It is now March of 2008 and every MRI has came back negative.  He's had no significant after effects.  He's tired more easy.  Thats the main thing but he's had no edema, headaches, dizziness etc.  Main thing is he's a bit harder to live with than before diagnosis.  He was given 3-10 months to live and it will be 2 years in July.  He still goes on trips and does most everything he did before.  He goes for MRI's every 3 months and have been clear since surgery.  He had stage IV.  Is there anyone else out there that has a friend or relative that has remained tumor free and pretty symptom free?

Someone rang for a GBM survivor??;) 

I, like your father in law, am symptom free and will be a 4yr survivor this november.  I go in every 4 mos for MRIs, and thats it...now!  3 yrs ago I was in and out of the hospital with infections and treatments!  All that is a memory now. 

A rare breed, us treatment-free GBMers, but we're out there.  Ben Williams is also a GBMer, 11 years now, a professor at a so-cal university.  He wrote a book as well about treating GBMs.  

As far as myself, I am fully active.  I am a happy housewife also spearheading a brain cancer foundation.  I was 22 when diagnosed, fresh out of college, newlywed, etc.  My life has altered drastically, yet as always for the better.   I am constantly seeking other brain cancer (esp GBM) survivors to discuss quality of life issues concerning the implications in surviving brain cancer. I volunteer with several groups in the cancer community as well.

Survivor info on GBMers is such a rarity esp if u are no longer in treatment!  Statistics just assume you're dead already, and not many details are given as to how to handle future expectancies.  I dont have the same brain I once had, though no one else knows, family included.  I never required physical therapy, though my gait (how I walk) makes my right foot step a hair to the outside, and I dont run down stairs anymore!  Little alterations, yet truly, and as oppsed to other GBMers, insignificant changes.  

Anyhow, hope this helped at all, and if would like to continue contact or have further questions,

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 is my email!  Support and congrats to your father in law on slaying the beast!

 

On 3/31/2008 Cancerella wrote:

Someone rang for a GBM survivor??;) 

I, like your father in law, am symptom free and will be a 4yr survivor this november.  I go in every 4 mos for MRIs, and thats it...now!  3 yrs ago I was in and out of the hospital with infections and treatments!  All that is a memory now. 

A rare breed, us treatment-free GBMers, but we're out there.  Ben Williams is also a GBMer, 11 years now, a professor at a so-cal university.  He wrote a book as well about treating GBMs.  

As far as myself, I am fully active.  I am a happy housewife also spearheading a brain cancer foundation.  I was 22 when diagnosed, fresh out of college, newlywed, etc.  My life has altered drastically, yet as always for the better.   I am constantly seeking other brain cancer (esp GBM) survivors to discuss quality of life issues concerning the implications in surviving brain cancer. I volunteer with several groups in the cancer community as well.

Survivor info on GBMers is such a rarity esp if u are no longer in treatment!  Statistics just assume you're dead already, and not many details are given as to how to handle future expectancies.  I dont have the same brain I once had, though no one else knows, family included.  I never required physical therapy, though my gait (how I walk) makes my right foot step a hair to the outside, and I dont run down stairs anymore!  Little alterations, yet truly, and as oppsed to other GBMers, insignificant changes.  

Anyhow, hope this helped at all, and if would like to continue contact or have further questions,

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 is my email!  Support and congrats to your father in law on slaying the beast!

Hi,

My mom (age 63) was just diagnosed in March with this horrible disease. I see all kinds of survivors under the age of 50, but is there anyone out there who survived long term with an initial diagnosis over the age of 50? My mom is a fighter, but this is the second fight of her life. In 1999 she have viral encephalitis that caused 2 grand mal seizures and she was in a coma.  They didn't think she would survive, but she did...and went back to teaching full time after 4 years of hard work to get there...she just retired in June of 07. She had no symptoms of this disease other than a seizure which they attributed to her carbitrol being low (she's taken this since the encephalitis). That didn't sit well with me as she hadn't had a seizure in 9 years...anyway...I am looking for a ray of hope in all of this. My mom has a phenominal attitude and plans to fight it. They were able to do a "clean" resection and she is starting the radiation and chemo on Monday April 7th. If anyone has any information about older people surviving I would appreciate it greatly. Thank you, Kellie

 

On 3/31/2008 Cancerella wrote:

Someone rang for a GBM survivor??;) 

I, like your father in law, am symptom free and will be a 4yr survivor this november.  I go in every 4 mos for MRIs, and thats it...now!  3 yrs ago I was in and out of the hospital with infections and treatments!  All that is a memory now. 

A rare breed, us treatment-free GBMers, but we're out there.  Ben Williams is also a GBMer, 11 years now, a professor at a so-cal university.  He wrote a book as well about treating GBMs.  

As far as myself, I am fully active.  I am a happy housewife also spearheading a brain cancer foundation.  I was 22 when diagnosed, fresh out of college, newlywed, etc.  My life has altered drastically, yet as always for the better.   I am constantly seeking other brain cancer (esp GBM) survivors to discuss quality of life issues concerning the implications in surviving brain cancer. I volunteer with several groups in the cancer community as well.

Survivor info on GBMers is such a rarity esp if u are no longer in treatment!  Statistics just assume you're dead already, and not many details are given as to how to handle future expectancies.  I dont have the same brain I once had, though no one else knows, family included.  I never required physical therapy, though my gait (how I walk) makes my right foot step a hair to the outside, and I dont run down stairs anymore!  Little alterations, yet truly, and as oppsed to other GBMers, insignificant changes.  

Anyhow, hope this helped at all, and if would like to continue contact or have further questions,

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 is my email!  Support and congrats to your father in law on slaying the beast!

I am so happy to read your message..  My friend has GBM reaching 2 years now and as we live so far apart I am scared that I might not have the chance to see her properly again.  But your message has given me hope.   It is possible despite what the statistics say.

I hope all is well with you.  Take care.

 

On 10/27/2007 TARAC wrote:

Hello to all, I am new to this website, but all of your stories give me hope that someone can be strong and survive this "Monster Disease" and that the family can be ok and by God's grace live through the ups and downs.

My father was diagnosed on September 17th of this year with a stage IV Glioblastoma.  He was presenting with headaches, visual problems, dangerous and erratic driving practices and dyslexic tendancies.  He got progressively worse, until my mom took him to the ER.

On September 24th, he had a tumor resection that did not get all of it, but did get the "core".  I saw the tumor before surgery, and it was butterfly shaped.   The doctor at Emory University Hospital told us that there were pieces left in the brain and that he would require chemo and radiation together.  The chemo is oral. He has to take 3 pills for 60 days.

 He is 70 years old and in excellent health to the point that his oncologist requested that he be allowed to take Temodar (sp?) in conjunction with his radiation.   His tumor was to quote the doctor "huge".  He is recovering very well from his surgery and awaits the beginning of his treatments.

My friend in Savannah told me that she only knew of 2 people that had this to live less than one year.  One was 35 and one was probably in his 40's.  I would like to know if any of you have heard of any long term survivors or anybody who has "beaten" this horror, or has gone into long term remission. 

It is so good to know that there are others who are out there too, and that I am not alone.  But my wish and my prayer for all of us, patients and loved ones alike, is that our Lord will take this horror out of this world and let us live cancer free.  Prayers and Hope to you all, TARA C

I am writing for my husband. He had surgery May 1, 2006 with a glioblastoma multiforme level 4 on his ocipital lobe. It wasn't horribly large, about 1mm. They were able to remove the whole tumor. He went thru radiation and Temadar. All his checkups have been great, even his blood work. He had some problem with sinus infections when he took the chemo, but when he went on an antibiotic on the 2nd or 3rd day of chemo, he didn't get the infections. His vision is still not as yours or mine, but he can go outside and get around to do some things.