GBM Stage 4 - end stage

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GBM Stage 4 - end stage

by utladyd3 on Sat Aug 09, 2008 12:00 AM

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Hello, I am 44 years old and on May 6, 2008, I went to the emergency room with a three day old severe migraine and was diagnosed with a spot on the brain.  On May 9, 2008, they removed a 1 inch fibrocystic tumor and a 3 inch (yes 3 inch) GBM Stage 4 tumor.  I was, at that time, given 6 weeks to 3 months at best to live. (still here and doing great!).

I have had 3 MRI's all if which have shown no new growth (PRAISE THE LORD).  However, on 08/07/08, my doctor advised me that with this cancer the aggressiveness can come back & spread literally over night. He has still advised me I have less than 6 months. Yet, I can not get a straight answer from him nor my parents as to what to expect at the final stages.  I would like to hear from anyone who can shed some light on the final stages of this deadly cancer to help me prepare myself, the best I can, and most importantly to make any prior arrangements for not suffering to the end as the pain prior to the surgery was the most unbearable pain so I'd like to know if others suffered even worse pain and other physical aand/or mental problems during their final stages.

GOD BLESS EVERYONE WHO TAKES THE TIME TO READ MY MESSAGE.

With warm regards,

Denise

RE: GBM Stage 4 - end stage

by mihalo on Sat Aug 09, 2008 12:00 AM

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Denise,

I'm sorry I don't have any answers for you as I have stage 4 bowel cancer (I am aged 30 and have 3 very little children) so I have probs at the other end!!!!!. Just wanted to say I was given 6 months, 12 months ago! You fight hard darling and I wish you all the strength and courage you need. You sound like an amazing person. May God bless you and there is always HOPE, I hang onto that every day. Stay well.

Love Mihalo

RE: GBM Stage 4 - end stage

by Mullymax on Sat Aug 09, 2008 12:00 AM

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Please go to www.Jerrykline.com to read a very inspirational story of a man with a GBM.  Never give up hope especially while you are still doing well.  You are in my thoughts & prayers.

RE: GBM Stage 4 - end stage

by texasbelle5 on Sat Aug 09, 2008 12:00 AM

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On 8/9/2008 utladyd3 wrote:

Hello, I am 44 years old and on May 6, 2008, I went to the emergency room with a three day old severe migraine and was diagnosed with a spot on the brain.  On May 9, 2008, they removed a 1 inch fibrocystic tumor and a 3 inch (yes 3 inch) GBM Stage 4 tumor.  I was, at that time, given 6 weeks to 3 months at best to live. (still here and doing great!).

I have had 3 MRI's all if which have shown no new growth (PRAISE THE LORD).  However, on 08/07/08, my doctor advised me that with this cancer the aggressiveness can come back & spread literally over night. He has still advised me I have less than 6 months. Yet, I can not get a straight answer from him nor my parents as to what to expect at the final stages.  I would like to hear from anyone who can shed some light on the final stages of this deadly cancer to help me prepare myself, the best I can, and most importantly to make any prior arrangements for not suffering to the end as the pain prior to the surgery was the most unbearable pain so I'd like to know if others suffered even worse pain and other physical aand/or mental problems during their final stages.

GOD BLESS EVERYONE WHO TAKES THE TIME TO READ MY MESSAGE.

With warm regards,

Denise


 

It's hard enough fighting the monster in your brain when your doctor is telling you to pick out your casket. Truth is, no one knows how any of us afflicted with GBM will live. It's a day to day fight. The fact that yu feel good is very positive. I am realistic about my survival but I still think I can beat this thing for a while longer. (I am 14 months into GBM iv)

Don't forget to live each day. Let tomorrow be. None of us gets to Paradise/Heaven without dying, I have to keep telling myself that.

Blessings to you.

RE: GBM Stage 4 - end stage

by Jdaaf on Sat Aug 09, 2008 12:00 AM

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On 8/9/2008 utladyd3 wrote:

Hello, I am 44 years old and on May 6, 2008, I went to the emergency room with a three day old severe migraine and was diagnosed with a spot on the brain.  On May 9, 2008, they removed a 1 inch fibrocystic tumor and a 3 inch (yes 3 inch) GBM Stage 4 tumor.  I was, at that time, given 6 weeks to 3 months at best to live. (still here and doing great!).

I have had 3 MRI's all if which have shown no new growth (PRAISE THE LORD).  However, on 08/07/08, my doctor advised me that with this cancer the aggressiveness can come back & spread literally over night. He has still advised me I have less than 6 months. Yet, I can not get a straight answer from him nor my parents as to what to expect at the final stages.  I would like to hear from anyone who can shed some light on the final stages of this deadly cancer to help me prepare myself, the best I can, and most importantly to make any prior arrangements for not suffering to the end as the pain prior to the surgery was the most unbearable pain so I'd like to know if others suffered even worse pain and other physical aand/or mental problems during their final stages.

GOD BLESS EVERYONE WHO TAKES THE TIME TO READ MY MESSAGE.

With warm regards,

Denise


Hi Denise

My name is John i'm 47 have two kids and a wonderful wife.  I was diagnosed with a GBM IV in March 2004 and given a year !  I'm out 4 yrs plus the doctor tell us the worst case scenario, truth is they really don't know !  Keep on fighting one day at a time, there is hope!!!!!

RE: GBM Stage 4 - end stage

by jackiekay on Sat Aug 09, 2008 12:00 AM

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Denise

I am concerned because you did not mention any other treatment.  After surgery the standard protocol is IMRT radiation and a chemo drug called temodar/temozolomide.  Are you pursuing any other treatment beyond surgery?  Although GBM is the most deadly form of brain cancer, there are many long term survivors and the numbers are increasing everyday.  The doctors DO NOT know how long you have.  They are not God!  I think it is important to have all your affairs in order such as having a will written and a medical and financial power of attorney drawn up, but I think that is true of any adult.  If you are not seeing a NEURO-oncologist, for your sake, please get to one at a major brain tumor center right away.  The negativity about your survival that has been epressed by your doctor worries me.  When you have an aggressive cancer, you need to treat it with the same aggressive style.  Best wishes to you & please keep us posted.

Jackiekay

RE: GBM Stage 4 - end stage

by kaje62 on Sun Aug 10, 2008 12:00 AM

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My friend Maria passed on a week ago. She had 5 years and 8 months! She was given 3-6 months when she was diagnosed. There is a guy David Bailey who I think has 12 years you can google him he is a Christian singer.

RE: GBM Stage 4 - end stage

by Dlynn1210 on Sun Aug 10, 2008 12:00 AM

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On 8/9/2008 utladyd3 wrote:

Hello, I am 44 years old and on May 6, 2008, I went to the emergency room with a three day old severe migraine and was diagnosed with a spot on the brain.  On May 9, 2008, they removed a 1 inch fibrocystic tumor and a 3 inch (yes 3 inch) GBM Stage 4 tumor.  I was, at that time, given 6 weeks to 3 months at best to live. (still here and doing great!).

I have had 3 MRI's all if which have shown no new growth (PRAISE THE LORD).  However, on 08/07/08, my doctor advised me that with this cancer the aggressiveness can come back & spread literally over night. He has still advised me I have less than 6 months. Yet, I can not get a straight answer from him nor my parents as to what to expect at the final stages.  I would like to hear from anyone who can shed some light on the final stages of this deadly cancer to help me prepare myself, the best I can, and most importantly to make any prior arrangements for not suffering to the end as the pain prior to the surgery was the most unbearable pain so I'd like to know if others suffered even worse pain and other physical aand/or mental problems during their final stages.

GOD BLESS EVERYONE WHO TAKES THE TIME TO READ MY MESSAGE.

With warm regards,

Denise


Hi Denise

First I have to echo a question that someone else voiced in another post.  What is your present oncologist saying about future treatment as you do not mention anything other than surgery?  I went to the Cancer Treatment Center of America in Zion, IL and they have a motto that "If God didn't give you an expiration date then why should we!"  I know I have met many people while going through my own treatment that their previous oncologist had given up on them so they came to CTCA and were doing well.  If I were in your position, I would be getting a second opinion rather than accept one hospital/oncologist's treatment plan.  I have read where many GBM patients have lived many years - only God truly knows when He is ready for us to come home. 

That being said, to answer your question as to what to expect toward the end - Google Kristy Dykes and then click on Christian Love Stories.  Kristy was a professional writer that had GBM cancer who documented her journey with GBM.  According to her blogs she was diagnosed with GBM on Nov 7, 07.  You can read the blogs that she wrote documenting her journey (she started the site in 05 but began documenting GBM on 11/07/07.  When she became too ill to write her husband continued began posting new blogs.  Kristy passed away on July 21, 08 but her husband has continued on with the blogs so we can read how everyone around her is now dealing with her death.

You sound like a very practical positive woman - much like texasbelle5 that has such a positive attitude it is infectious.  I wish you the very best and will remember you in my prayers. 

Diana

RE: GBM Stage 4 - end stage

by Donnaf on Sun Aug 10, 2008 12:00 AM

Quote | Reply

 

On 8/9/2008 utladyd3 wrote:

Hello, I am 44 years old and on May 6, 2008, I went to the emergency room with a three day old severe migraine and was diagnosed with a spot on the brain.  On May 9, 2008, they removed a 1 inch fibrocystic tumor and a 3 inch (yes 3 inch) GBM Stage 4 tumor.  I was, at that time, given 6 weeks to 3 months at best to live. (still here and doing great!).

I have had 3 MRI's all if which have shown no new growth (PRAISE THE LORD).  However, on 08/07/08, my doctor advised me that with this cancer the aggressiveness can come back & spread literally over night. He has still advised me I have less than 6 months. Yet, I can not get a straight answer from him nor my parents as to what to expect at the final stages.  I would like to hear from anyone who can shed some light on the final stages of this deadly cancer to help me prepare myself, the best I can, and most importantly to make any prior arrangements for not suffering to the end as the pain prior to the surgery was the most unbearable pain so I'd like to know if others suffered even worse pain and other physical aand/or mental problems during their final stages.

GOD BLESS EVERYONE WHO TAKES THE TIME TO READ MY MESSAGE.

With warm regards,

Denise


My Mother had gbm 4 and was diagnosed on april 6 2006 .The dr gave her 12 months to live this was an expert at Sloan Kettering DR Gutin One of the wrolds top surgeons She lived 14 months We took her to Duke university fro experimntal treatmnt and it worked to a degree but to no avail she could not responf to teatmant at her agae which was too agresive She finally was tols to go to hospice where she survided 8 weeks There is no certain frmnla Towrds the end she came in and out of consoiusness and she was under alot of pain medication She became slightly delusional and couls recognize us sometime She has 4 growm children by her side and we were all there when she passed It was not easy but hte dr"s were not really able to give us a specific time frame as My mom was strong and kept pulling througJUst try not to reat on your Lauresl too much because we did and my mom was doing fantastic for the disease and was up cooking dinner at chrtimas time and passed on her birthday by easter Take it one day at at ime and enjoy the healthy monents as you can I will keep you ijn my prayers I have started a foundation in my mothers Nme calle d the amary francis GLIOBLASTOMA foundation to hinor and hekp[ those who have been diagnosed with this terrible disease One thing you have goinn for you is your age as most younger peoplr fair well My mom was 74 GOd bless nad good luck

RE: GBM Stage 4 - end stage

by Osborne on Sun Aug 10, 2008 12:00 AM

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My husband dx with gbm june 2005. Tumor the size of a lime had surgery, rad. temadar then regrowth. Started avastin and cpt11. Had 17 treatments. Then the tumor started growing again with a vengence. He is in final stages now under hospice care. He cannot now use his left side at all his tumor started in the rt front lobe. It is now in right temprol lobe also.
But God gave him over 3 years after he was also told he had 3-6 months. This only proves that only God knows how long we have. God Bless You! Hang in there. Carol. 
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