Glioblastoma Grade 4

Dear Patty,

One of my best friends suffered several types of cancer. When she was diagnosed with her last one, she was told that this type had only a 2% survival rate. She called me in tears. I said,"Well, somebody makes up that 2%. Why not you?" She went on to live many more years of quality life. So, Patty, when they tell you that less than 2% of patients live more than 2 years after diagnosis, tell them that your husband is in that 2%. 

I lost my parents and sister to cancer so I know what it's like. Stay positive and take care of yourself so you can take care of your husband.

Best wishes,

Barbara

Newmom,

My name is Allison, I'm 19 years old and I was the primary caregiver for my Grandmother who was diagnosed with grade 4 GBM on her left frontal lobe. I left my family on a hunch that something was wrong with my grandmother in between my Junior and Senior year of high schol and moved four states away to live with her and watch her. When diagnosed the tumor had already caused perminent damage from pressure and was 4 cm in diameter. They gave her 6 months with treatment, but she fought for 12 monthes and a week past her her diagnosis date. We went through two surgeries and every treatment we could afford, which wasn't much with insurance. After the first surgery she was almost herself for a month or two, but then relapsed faster and more aggresively than the first time. She was a very strong woman, my hero and I couldnt have been more proud of her fight with GBM.

I loved her dearly, but I knew I had lost my grandmother the moment I moved in the house and she introduced herself to me. My thoughts and prayers are with you and your family, and through everything I know that she is in a far better place, without pain or suffering; if all I could offer her was to make her comfortable up until the end, then that was my privalege. 

God Bless You and may God shine his love and light on your family as he has shone on mine in the last year.

where did you get the alternative treatments??

hi

I'm writing from Italy, first off all sorry for my bad english.

my brother was diagnosed GBM IV in september 07, had surgery in october 07, after two weeks from diagnose.

He survived almost 16 months, and died in February 09 at home, surrounded from me and my parents.

It has been a very very very difficult experience. As usual the doctors were very clear with us immediately in september 07: ten months, not more than one year, no hope at all.

After the surgery he was very well; he was able to work, to be autonomous...but as the doctors explained they were able to remove only a part of the cancer.

The protocol was Temodal + Radiotherapy, with a  lot of minor drugs; mainly cortisone and at the latest phases mannitol.

After the first diagnose, I was not surrended so I contacted several doctors around the world, also in the USA, looking for informations and trials.

I decided also to go to a specialized laboratory with the samples of my brother, doing for the genetic analysis; my hope was to discover something that would help the choice of the better drugs for my brother ...it was clear the Temodal+Radiotheray was not working well.

The research is in progress, but the main part of the doctors , also in hospital specialized in cancer, does not know what to do with the genetic analysis you make available to them.

The doctors told me they can't do anythig different from the standard protocoll; sometime (very very few cases) the response to these drugs is good and the cancer stop to grow..they do not know at the moment why it happen.

Slowly my brother stopped to walk by himself, then to eat by alone, then to speak ....and started to stay in bed for the whole day...at the end he went in coma just before Christmas 09.

Why I'm writing ?

Unfortunately, I know what does it means to have a familiar with this damned type of cancer.

I'm still involved with my brother.

I really hope a day where it will be possible to save one of this patients.

On Feb 05, 2005 12:00 AM Newmom wrote:

Bette, Thank you for responding so quickly. I am sorry to hear about you husband. My prayers are with you. Is he in good spirits? My father seems to be handling this very well. Denial - I guess. We visited his oncologist yesterday and he feels the tumor is growing rapidly, although he has been taking BCNU IV. We have an MRI scheduled for 2/16/05. He is having trouble walking now, because he is still taking Decadron for swelling. It is amazing to me that he remembers eveything and can hold extensive conversations. Besides the fact he has no hair, you would never know he had a tumor. Last Friday after Chemo he fell outside the cancer center and hit his head on the blacktop. He had to stay in the hospital overnight. I know that he will continue to fail, and that makes me feel helpless. Please keep in touch. I am 28 years old and an only child. My friends can be sympathetic, but they do not understand. Paula from West Chester, PA

 Hi ! It's very sad to hear about your father . My grandfather was operated three days ago for Glioblastoma grade 4 . Now the doctor suggested him radiation therapy . We're all tensed . My prayers are with you . He has poblem in remembering names but he talks totally normal as if nothing has happened . I think you should take your father to quiet and silent places and share some beautiful moments with him . We're thinking of taking my grandfather to his normal daily routine so that he feels good but we'll bring him back for his therapies . And one more thing the doctor said"IF THE PATIENT HAS WILL POIWER THEN HE CAN SURVIVE FOR 6 TO 7 YEARS , THE DOCTOR HIMSELF HAS SEEN SUCH  MIRACLES SO DON'T LOOSE HOPE" . Remember Jesus Loves you .... 

Hi your situation is very similar to mine.  My husband was diagnosed on Oct 12, 2012.  He had surgery on the 25th.  Like your husband he was home within Days and you wouldn't know that he ahd just had Brain Surgery.  Fortunately for us the surgeon was able to remove 99% of the tumor.  But the prognosis is still the same (which I don't understand) 12-14 months with chemo and radiation.  They told him today that they don't see it at all on the MRI.  hE IS DOING WELL BUT NOT ABLE TO DRIVE SO THAT MEANS THAT HE CANNOT WORK.  This is killing him softly as he was a self employeed mechanic and Karate Instructor.  After the 6 weeks of treatment he is hoping to at least began teaching his private students again.  He was just starting his life long dream of opening his own Dojo.  As a matter of fact the workers are still finishing up the building.  We are still planning on opening in January (Fingers Crossed). Its gonna be a little harder without his income coming in but if he has the strength we will (God will) find a way.  This week we have noticed that his short term memory is starting to be affected.  And it is affecting his speaking, but only a little sometimes he just has to slow down and start his sentence over.  The doctor just gave him some steroids for the headaches that have started but he says he going to try to control them with Tylenol as long as possible (he does not like taking all these meds)  He uses Ambien to sleep sometimes as (we both) cannot not sleep very well.  We are still trying to wrap our heads around this thing.  Everything is happening so FAST.  We just got married in June and were planning to go to Hawaii in April.  (We still are) His spirits are good most days but outbursts seem to come out of nowhere (crying).  When that happens I cry for him(us) too.  Man...this is a TRIP we both were so happy to have found each other.  He is 50 and I am 51 A COUGAR!!.  aND NOW THIS...I make him two fruit and veggie smoothies loaded with protein everyday.  Mainly because he has kept his weight down to 153 all these years to be able to compete.  Now he needs weight to be able to fight this thing.  We have made some progress in this short time frame I have gotten him up to 161 lbs. and climbing!! (He hates it) But knows that it is necessary.  I just can't een imagine that in a year from now he may not be here.  I just can't even believe that.  He is/was too healthy of a vibrant man.  He is so funny too.  We laugh and giggle all the time.  Anyway I am rambling....as I post and read posts I try to give any encouragement by my stories and he also signs in under this same name and posts his medications and we write down what other ppl are using and feeling.  Sometimes just venting on here helps.  At least he helps me hopefully it helps you too.  Keep hoping for that miracle it can happen at any moment.  Praying for all here....

YAY!!! My husband will be in that 2% also

Thank you just that last sentence gives hope.  I ope everone has the WILL POWER

Dear Phyllischarles, My grandmother was diagnosed a few days after your husband here is where we are...

I would like to wish everyone on here the best, this site has been very informative and GOD willing I will be back to share ANY good news that we have. Things are not going great for my nana, this disease has really taken a toll on her at an extremely fast pace and at this present time she is in a coma a month after having the resection done. I was prepared to fight this fight with her but NOT ready for this fight to come to a hault at this time so soon. Please keep us in your prayers and I will do the same. The best to all...

Psalm 30:5For His anger is but for a moment,
His favor is for life
Weeping may endure for a night,
But joy comes in the morning.

 I just wanted to say thank you for that last line in your story...WE ARE HOPING FOR THAT MIRACLE, IT CAN HAPPEN AT ANY MOMENT.THANK YOU AGAIN! :)

Let us know how Hawaii is!!!