Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

 

On 7/10/2008 stacyloveslester wrote:

dear judy, you are so right there are many stage 4 gbm survivors, i myself am one of them.i was diagnosed in 2001, 8 years im still cancer free.this disease is enough to scare anyone, but it has been beaten. prayer is what what got me through,because without i would have given up,but every a little glimmer of hope would feel my heart, and give me the strength to go on. my prescious husband was also a very big motivator,along with m7y 2 children.never give up,its not in our hands. stay in faith.god bless you all.    stacy survivor

stacy,

what did you do or not do in your treatment protocol? I am new to this message center, so please forgive me if you have posted this information before--I started reading on the last pages rather than the first.

 

 

On 12/23/2002 Karen C. wrote:

I would like to hear from anyone that has survived or been part of a family that had the above cancer. Thank you

 

my father is going through this now, he was diagnosed oct 08... he is overall doing great... not sure what the 'checklist" is for someone at his stage but think he is doing well... 

Our dad was diagnosed August 23, 2007 at age 67.   He was given a prognosis of 4 months or longer.  He had surgery in NY Sloane a week alter.  He had Temadar and radiation.  He seemed pretty good!  Took pretty long walks around NYC etc.  By December his tumor had grown back 30%.  That treatment was not working well for him.

     Our mom was diligent.  He then began treatment at Duke where they are VERY NICE.   He then was treated with Avastic and ZBT11.    He was doing great but suffered many seizures.  Because of all the seizures he is very weak and has very little movement abilities on the left side of his body. 

     He is still alive and they say the tumor is dead.  But he has very poor quality of life due to all the siezures, which are very debilitating.

      DON"T believe the timelines doctors might give you.  Everyone is different.  My dad's brain works very well.  HE is very smart.  But his body is not workng well!

    Sorry and good luck!

M brother was diagnosed in Septembe, 2008.  He underwent radiation,a nd chemo (temodor). Was started back on temodor in January and had his first followup MRI yesterday.  His tumor has actually grown from his first diagnosis and 2 more feeders were found.  My question is,  what do we expect to see happening to him in his final months?  Thank you, lena

It is such an inspiration to hear your story.  My family has been through so much in the past few months. My dad is self employeed so no insurance, and in the last of October my mom started having chest pains. Well on November 4th my mom was scheduled for open heart surgery. They had her prepped and ready to go and my dad leaned over her to tell her everything would be ok and had a stroke right there, so needless to say they had to reschedule my moms surgery.  We finally got to go home with dad after the stroke, but something was not right.  He was having seizures 10-15 times a day.  All the seizure medication they had prescribed for him he was allergic to.  So in and out of emergency rooms for bad allergic reactions, we finally found valproic acid, which is bad on the liver, but controlled the seizures.  So with dad doing pretty good we had to schedule moms open heart surgery.  The day of moms surgery dad had over thirty seizures but we made it through.  Instead of dad being able to take care of mom she had to take care of him.  As mom got better it seemed dad got worse.  They had put him on Plavix for a blood clot that was found on the left side of the brain.  Immediately the seizures stopped completely, but very dizzy kinda out of it and alot of stomach pain.  The next day he was passing blood so another trip to the ER.  The Plavix had caused a GI bleed so he came off the Plavix for a while to get his stomach better.  About two weeks later went back on Plavix again, but this time he just started doing crazy things like asking for a glass of tea and then trying to pour it in a water bottle spilling it everywhere.  The dizziness was back so back to the ER.  They air lifted him to another hospital because of blood on his brain. The Plavix almost killed him but i am so grateful because we would have never found out what was really going on.  So we are off to a hospital an hour away from home thinking they we're going to do emergency surgery as soon as he came in.  That  was not the case.  After doing MRIs and CT scans they found a mass.  So four days of scans and two doctors trying to figure out what this was, they finally called in the family and told us there was a tumor on his brain and the doctors said it was HUGE about the size of a grapefruit, we have to do surgery but we have to wait on the Plavix to get out of his system.  So four days later brain surgery, which is insane you never imagine things like this.  The surgery went good they got as much of the tumor as they could without paralyzing his left side.  Now we just pray that the results come back benign, but it will be about 4 days.  So 4 days later dad is doing great he is alert and knows everything, but has alot of fluid all over his body, still in icu still has not had food, but he is in good spirits.  The doctors call us back in to tell us its malignant and he has been diagnosed with stage 4 glioblastoma this was 2/3/09. Its so hard to keep your spirit through this, and its hard to look at him and see his pain.  He is 57 years old, has 3 grandkids, the youngest is 2.  I want my daughter, the one that is 2, to remember her pawpaw.  We are going to beat this.  We go back wednesday to get his staples out and start chemo and radiation.  I have tried to do research on this cancer but i have a hard time the prognosis at every webpage is like 14 months and thats not what a want to hear.  It is so inspiring to hear 10 years, God please let my dad get that.  The situation with no insurance seems to make everything worse.  My parents went from living a good life to not knowing if they could pay there power bill or water bill.  Like i said i am not very knowledgable about all this but if there is anything anyone knows of to help take care of hospital bills please let me know, and if there is anything anyone could give me wisdom about please let me know.  Thanks again for your story we will keep your family in our prayers and please keep our family in your prayers.  This has took a toll on everyone and our health my brother and i are both now on blood pressure and anxiety meds.  I am 26 years old too young for health problems and too young to lose my dad.  I know God is the only one to help us through and if we put it all in His hands He will take care and provide for our family.  Please keep me updated i like to hear good news it gives all of us hope.  Thank you so much.

Hello guys,

My name is Daniel and I reside in the UK. I was diagnosed with Glioblastoma Multiforme IV in January 15th 2009 following a biopsy eight days previously. The specialist informed me I would only have six months to a year to live. This prognosis is unacceptable to me. I had surgery for de-bulking of the tumour which was between 1-2cm two days after diagnosis. I am not sure how much of the tumour was removed, it lies in the right parietal lobe. at this point of time I am beginning my sixth and final week of radiotherapy in which I have also been taking 110mg of Temodal (Temodar in the US). 

 I can't say for sure what I am going to be expecting for the next few months, I will be continuing on the Temodal for five days in a month upto and including October. Right now I am not suffering anything that would suggest anything severe, only that I have an ever so slight deteriation in the peripheral vision of my left eye (my next visit to the opthalmologist is in August) and am still able to do everything I was able to do all that I was able to do before except for being abit more easily tired. This has however happened at an extremely bad time for me as I was due to migrate to Singapore to be a father to my daughter who was born on February 16th. She was born one month prematurely but is extremely strong and healthy. I recently turned 29 years old and am already looking to my 30th and beyond and even beating this torrid disease so my daughter ( her name is Rianne) will have her father.

 Statistics are horrible thing to hear and I am certainly not a statistic. With fear there is also hope. Faith makes a mighty fine pillow! Fight the good fight and don't give up.

 

If any of you are interested in getting in touch, please do not hesitate to contact me, I am only too happy to share my experiences.

 

God bless everyone of you!

 

Daniel :)

Hi Megan,

First of all, I am so sorry to hear about your dad's diagnosis. My dad was diagnosed with GBM on Veteran's Day, 2008. He bent down to plug in a power took and went into a full seizure, and we thought he was being electrocuted and the paramedics thought he  had suffered a heart attack.. After another seizure and a second ambulance trip to the  ER, we found he had a brain tumor in the left side of the brain.He was 62.

After surgery to remove as much of the tumor as possible, he underwent 6 weeks of radiation and took Temodar at the same time. Two weeks after he completed that cycle, his MRI revealed the tumor had continued to grow. The next few weeks were terrible as we watched him grow week and dependent before our eyes. 

 My dad's primary caregiver is my 72 year old mother.  My mom has been almost totally dependent on my dad ever since they married, she has rarely even shopped for groceries. She can be quite a handful as she is spoiled (by my dad) and accustomed to getting her way. She is childlike in a lot of ways. She and I have had a rocky relationship at times, and recently she and my brother have had words, because we are all stressed about Dad. Thank God, she has come about and actually become a 'caregiver', probably the best she has ever been in her life, and has become good at taking care of him. It took quite a bit of talking and explaining to make her understand this is about HIM, not HER. But it is about her too, since this is her mate, and most of the care falls on her.

The biggest help has been that we have all turned to God, and have placed my dad's future in His hands. You have to help your Dad to come to peace with his situation, and have him realize that God's will will be done, and that He wants us to fight it and do all we can to overcome it, but to reach a peaceful place in his heart and his soul. He has to be reassured that his wife will be taken care of after he is gone. Since we have told my Dad that we will take care of Mama (no matter how difficult she is) after he is gone, he has been more at peace. 

Our family has never been church-goers. We believe in God but have never had wonderful conversations about it nor felt comfortable discussing God with each other beyond a few statements. But as soon as a pastor friend visited and opened it up for discussion, it has become easier and easier for us all to talk about our beleifs, and it is such a blessing to hear my dad say he knows where he will go if he doesn't beat this thing.

On a final note, two weeks ago we were told to call in hospice care. My dad had become totally bed ridden, only to get up once or twice a day to eat , bathe, or use the bathroom. He could barely lift his arm up off the bed. He had just finished Round 2 of chemo and we thought he just can't take this. But he is on the 'chemo free' weeks of the cycle now, and he is able to lift his 2lb weights while laying down or in his chair. He has been pulling up in the walker from a seated position on the bed, and one day moved himself from the bed to his wheelchair, unassisted.We have NOT called in hospice. (Hospice won't get involved until the patient is finished with all life saving/extending efforts such as chemo, radiation, etc.)

He has a blood clot in his right leg from medications and inactivity, he has thrush in his mouth, he had to have 2 bags of fluid for dehydration last week, and struggles with constipation, but his will to beat this is unbelievable. He went from not wanting to eat two weeks ago, to eating several good meals a day, plus a couple of bottles of Ensure each day.

We go tomorrow for a check up with his oncologist, who wants him to stop taking chemo. We are going to tell his doctor this is not his choice, he wants to keep it up. Also, we are inquiring into a new drug about to be approved for GBM patients called Avastin. Please read up on it!

He has such a great attitude, never complains, and always smiles and tries to make us smile. 

Megan, don't give up on your dad. To the last minute of his life, help him to find peace and find out what he wants done (as far as treatments, burial, your mom) while he can still talk and think. Support him with phone calls, words of encouragement, cards. Put him on every prayer list you can think of. Pray to God and ask him to help heal your relationship with your mom. Even if it is just little tiny steps, it will help.

God bless you, God bless your Dad, and God bless your Mom and whole family. I pray your dad will find some treatment to make his quality of life better!

Carolyn

 

 

Hi Debbie,

I am so sorry for your loss.  Unfortunaltely my father was diagnosed with this monster on the 13th of March, 2009.  At this point he had according to the Doctors, four days to live.  He had surgery on the 16th and came home from the hospital on the 25th.  Before he was diagnosed, he had started with the confusion, he tends to go back in time, he was unsure at times of where he was, in the hospital, he would think he was at work or in the military and be looking for people there that he was in contact with through work and the service, then at other times, he seemed to be quite clear. 

The prognosis that we were given is very grim, 2-3 months without chemo pill and radiation and maybe a year with the treatments.  He has to have 24 hour care, because he wanders at times and should not be left alone.

Were any of these symptoms prevalent in your situation and at  what stage of the disease did it happen if at all.

I am trying to get a clear picture of where we really are with this, doctors are hard to get anywhere with at times.

Thanks, Susan

 

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

 

Hi, My father is 69 and was diagnosed on the 13th of March.  He was operated on the 16 but at the time of his surgery, had only four days to live according to the doctors.  Before he was diagnosed he had started with alot of confusion, like gettingup in the middle of the night and going to a dental appointment which did not exist, forgeting important things and just not funtioning to well mentally.  Have you experienced any of this with your Dad?

Susan

 

On 10/21/2008 bob g wrote:

This is a reply to last two posts from Linda and Sharon.  After surgery, radiation and temodar which have been the standard protocol, the new drug being used is Avastin and it seems to have a positive effect.  But I think long term efficacy is not yet known.  We researched and found Duke University Hospital in N. Carolina and it is my sense that not all hospitals and doctors are equal in this battle.  Duke is a leader.  We are approaching a year to first discovery which was a seizure/collapse.  Surgery was in December and she is holding her own at moment.  Where tumor is located in brain is major issue in terms of effects on personality.  Suggest spend lot of time on the internet and use search engines to read what is going on.  Being hopeful is necessary, but this is a devastating disease.  Write if you want more information

 Bob

Hi, I would like to ask you if your Mom suffered alot of confusion and disorient during her illness with this awful disease?  My Dad gets really confused, thinks he is back in the military etc..  Sometimes he is clear and then all of a sudden he is confused again.  Just wondering if anyone else has seen this type of symptom and at what stage.

Susan

Susan