My Dad has GBM IV, I just found out today. Help.

I need help because I don't know where to turn to. My Mother and I are wrecks, and this forum seemed helpful to many people.  Here is my story:

     Two Saturdays ago my 57 year old Dad collapsed at work and had 2 seizures.  They found a mass on his brain, which after surgery was determined to be a low-grade glioma.  It was only 2 cm, on his left frontal lobe.  Very superficial and no other cancer in the brain.  He had another surgery because a follow-up MRI showed a small bit left, and they were confident they had removed the tumor completely. We were hopeful and he came home last Saturday, as we waited for Pathology results.  I called the Neurosurgeon today who informed me that they were completely wrong initially, and that there was a tiny amount of Necrosis in the very center of the tumor, and that it was therefore Level IV.  We were blindsided.  The surgeon stated that the average expectancy was 6 mo- 1 yr, but that my Dad, who is athletic, should be strong enough to make it 1 year.  We had to tell him this news, after it was inititally thought to be Level I or II due to it's small size, and that the initial biopsy showed no Necrosis.  Also, we declared bankruptcy 3 months ago.

      My Dad had no headaches, or numbness. He had mild confusion.  He was performing normal every day activities before collapsing.  I am confused, and scared.  I'm 21 and selfish and not ready to lose my Father.  I'm particularly confused by how when I Google it, all clinical studies show VERY GLOOMY prognosis, and that long term survival with a level IV is extremely rare, yet when I read all these forum posts there seems to be so many who are living with it long term.  Also, does anyone know anything about this new replacement gene therapy?  We are lost and will accept inspiration, guidance, or stories from anyone.  Thank you.

 

There are lies, damn lies and statistics.  

The prognosis is gloomy but ... my 70 year old dad was given six months to live because not only did he have GBM, he also had an anuerysm in his stomach ready to burst and had close to emergency surgery to repair that.  And then had complications from that surgery and blood clots and ...

 He was given six months to live and although he is now in a hospice, it is 13.5 months later.   

 

At 46 years old, I am not ready to lose my dad so I understand what you feel like.  It may sound like a silly clique now but treat each day as a miracle and spend a ton of quality time with your dad.  Be realistic that things might not work out but never give up hope.  It is all about buying quality time whether that be one more day, week, month, year or decade or more.   The one thing that worked for me from day one was to detachment myself - I always was looking at the positive and that this would be the treatment that worked and my dad would be the one who was going to be the 70 year old who lived ten good years.   

 Another thing that worked for me was that we always had the new normal.  No point looking back at what was lost or forward to what might be lost but to live in the present and whatever that present was is the new normal for you.  They thought my dad had a stroke at first as his only symptom was the right side of his face was paralyzed.  So we worked around the speech - let him finish a sentence that took a little longer than normal to do or turn off the background noise.   

 And at 70 my dad's bad knees, hips, etc were slowing him down so where once we would play 40 rounds of golf a year, that was down to 4.  There were suppers on the special occasions but this disease "forced" us into a quality of time that we would not have otherwise had.   One always believes their parents are going to live forever and that hike or whatever will always be there so one puts that off.  It is now time to do those sort of things and take the positive out of this.

 And do not be afraid or feel it is weak to get professional help.  When my dad was first diagnosed, I cried like a baby but I managed.  I was focusing on the positive and that new and better drugs were here or just around the corner.  But when my dad was admitted to a hospice, despite it being a great thing, I broke down.   There is so much support out there because I know I felt as if I was the only child in the world to ever lose their parent.  Or to lose them from brain cancer. 

 

Good luck in this journey.  And the best explanation I found about what will happen next is you are going to be on a roller coaster ride and the idiot operator will not let you off.  Enjoy and embrace the highs and fight through the lows.  

Try to take a deep breath, We all know how hard it is to hear the words and then go home and research GBM here on the internet. First advice I or anyone else posting here will tell you is be sure you're with sp ecialists, not just the local hospital neurology dept. Doesn't necessarily mean you have to travel the globe for treatment, it simply affords you the opinions and treatment plans of experts in this field. You want an experienced neurosurgeon, experienced pathologists and a neuro=oncologist who is highly aware if the best treatment options available. They should work as a team to afford your father the best treatment plan.

Second, though GBM is an aggressive, lethal cancer with only palliative measure to treat it,  doctor's prognoses are often shots in the dark based on dated statististics that have nothing specifically to do with your Dad's otherwise good health, immune system, etc. There's no way they can know how he'll respond to radiaition, chemo, etc. I was 52 when dx'd. good health. I had surgery, radiation, 12 months of toxic chemotherapy and never spent a day in bed.I just had my third surgery for recurrrence and feel good. There is no way of knowing how an individual will react until he or she is treated

Last. ntinue to do what you're  doing---researching and reaching out for answers and support. The great majority of people of this board have or are caring for someone with GBM. We have been on the ride awhile, some of us. There is a wealth of information and tips on how to cope and how to manage care. And remember to take care of yourselves. find something to laugh about everyday, grab one tiny spec of joy.

Mary. dx Sept 2007/Recurrence April 2009 and August 2009

To tell you the truth, I'm always kind of surprised at the numbers doctors throw around in terms of how many months anyone has left.  It's so arbitrary.  There's a huge range in how long people have survived GBM.   The best we can do is take one day at a time with our loved ones, and handle life as it comes.  I'm sorry you (or any of us) have to go through this. 

Dear Cubeinthesky,

First of all your father is not a statstic. Grade IV is not good, however each person who has GBM experiences different outcomes. You first must keep the faith. Everything you read is GLOOMY, but remember your Dad can have a better outcome.

There are many survivors. Being positive, ask many questions, read everything you can about the disease. I have personally met a woman who is 4 years since dx at Cleveland Clinic.

Remember the disease is the disease and your Dad is a individual. It will be a journey with it's ups and downs. You will have celebrations as well as tears, but you must stay positive.

Keep us posted on your father's journey.

Love and prayers to you, your father and family.

Sheryl

First I am so sorry, this is a nasty disease and I agree with others, statistics are statistics however you need to be prepared that in the end the tumor will win it's just a matter of time and the important thing is what you do with that time.  Treat everyday as a gift and when it gets tough lean on others for support. My 54 yo dad was given 6  - 18mths with several dr's telling us he would be lucky to make it 20 weeks.  Next month will be two years and while I am so thankful he is still with us he is a shell of who he used to be.  After the initial recovery from surgery and radiation we had about a year of good quality time where we went on trips and had good conversations and made lots of memories (thanks to my therapist who said to stop acting like he was already dead).  I am so thankful for that because with the disease and treatment there will be deficits dad is very confused now, and has no short term memory and his long term memory is starting to be impacted but while it's sad for us it's a blessing for him because he doesn't realize how sick he is or that things are out of the ordinary but as a daughter it's very hard to watch this big strong man decline to the point that he can't hardly stand up by himself, he doesn't know how to move his legs to sit up, holds on to things that aren't there, smokes cigarettes that aren't lit, doesn't remember how to use a spoon and eats paper towels. 

Know the road ahead is long and hard but it's what you make of it so enjoy everyday and ask for help when you need it.  Try to find a support group, we go to one specifically for brain tumor patients and I also have a therapist.  Lean on others.  Definately seek out a neuro oncologist because you want the best care and access to trials.  Remain hopeful that your dad will be the one that beats this awful disease but stay realistic so that when it does come back you will be ready to fight again for as long as your dad is able.

Read everything you can about this disease but also about the area of the brain that was impacted and when you have questions ask the dr or people on this board.  Everyone's experience with this disease is different but I found even reading the negative or about people who were at the end of their journey helped me understand what was ahead and as each new syptom or issue came up I felt prepared because I knew it was coming.

Also, you mentioned bankruptcy.  GBM is an automatic qaulification for Social Security disability so be sure your mom has your dad apply for it.  It takes I believe 6 months before you actually receive a payment but since my dad is unable to work it has been instrumental in helping pay the monthly bills as well as copays, medicine, medical equipment etc.

I am so sorry your family is having to go through this but i thought about what I would have wanted to be told in the beginning because the dr's really don't give you the information you need to be prepared for the long road ahead but then everyone is different so they really can't tell you what's ahead just cherish your dad and love him. Someone else said it's like a roller coaster and it will be and while there are times when you want to jump off, know that it eventually will end and you want to look back and remember the high points of the ride so make memories!! 

Hi there, I'm always sorry when a new person gets the bad news.  I remember the sense of disbelief, anger, fright, in fact doom!  I knew at that time that life as we [my husband and I] knew it, was over.  What I did not know was how the future would look.  That was the hardest.  My husband, the GBM 1V patient, ordered everyone, including the surgeon, to not say a word about prognosis, so although I knew myself, I was not allowed to ever speak about it.  He decided that no matter what the possible outcomes might be, HE would be a survivor.  That was it.  So, now it is 2 1/2 years.  Positive outlook helps, it is not a cure.  He was 56 when diagnosed, and working, playing hockey, loving his life.  He said that if the surgery left him with a deficit he would deal with it.  He has.  The road is NOT easy.  Life is NOT the same.  But, the docs cannot tell you how long someone will live, nor how they will handle treatments.  They make the attempt to tell people because people ask them! 

For some positive stories, read more on this site, and google Ben Williams.  Lots for you to learn, if you wish to.  The one big mistake we make I think, is not understanding at first, that our life is changed by this news, and it does not ever go back to the pre-GBM state.  You have to begin learning how to live with a level of fear, but keep yourself grounded, stay with a good support system, whatever that is for you, and help your dad to do the most difficult thing that he will ever have to do in his life.

Can you see all that happening?  It's a lot to take in right now.  Stay in touch.

Donna L

I am so sorry that you have to deal with this. If your dad is 56, then you are far too young to have these worries. There isn't anyone who hasn't felt blindsided by the GBM IV news.  The intial thought, which is where you are right now, is that damn prognosis that the doctor gave you.  Just remember that it is BS! While some do not do well with GBMs there are many who do and survive a looooong time.  My husband was dx this past February. He is receiving treatment at Duke's Preston Robert Tisch Brain Tumor Center. There are options out there for GBM patients.  I am not sure where you live but I do  know that you will go to the ends of the earth for your dad, as all of us who care for and love their GBM family members.  First thing, breathe! Your dad is not dying!!!!! I repeat, your dad is not dying! Until they say there is no hope, he is alive, well and fighting.  Second, A Postive Attitude is a Powerful Force (read this at the BTC at Duke).  It is hard to think positive this early on in the game, but I promise you that it will make a huge difference in all of your lives. Third, there are some amazing facilities out there -- contact them all!  Duke has been rated as the number one facility for brain tumors.  MD Anderson is also amazing, Cleveland Clinic another one.  This is going to be exhausting for you -- get help with your research. DO NOT DO THIS ALONE and remember that you are not alone. You have all of us on this site to hold your hand.  Google GBM survivors -- it is very uplifting to read their stories. Do not google GBMs because it will only bum you out more. I was very careful about the information I took in at the beginning. I knew what we were dealing with and did not feel the need to read about statistics.  My husband will be 56 in January and he, like your dad, is fighting this with all he has and is remarkable. He is working, going out with friends, driving and enjoying life. He is the same fun guy that he was before the tumor. 

 If your mom needs to talk to a GBM patient's wife, let me know on this site and we will figure out a way for us to connect. It can be very lonely for spouses -- this I know too well.

 You are in my prayers.

Holly

Oh, one more thing. Google David M. Bailey! A great story.

H

Sorry to hear about your dadI'm 61 years old  dx 116/06 2nt surgery last june hve done 18 months on 5/27 temodar and radiation Just had 4 more treatments of radition. now on adavistin.Onthe 6th of nextmonth it will bethree years since i was dx. tumon on motor strip rightside.losssome use of left arma and leg. I plan on being here 11/06/08 remember everone is diffferent and put your trust in the loard  only through him can mericals happen. Phill Norton