Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by juanita257 on Sat Nov 26, 2016 01:59 AM

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Thank you for sharing Donna

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by julesaxon on Sat Nov 26, 2016 06:39 AM

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On Nov 25, 2016 8:29 PM julesaxon wrote:

On Nov 20, 2016 11:36 PM bvbv9 wrote:

Very sorry to hear of the situation your family is in. My husband was diagnosed few months ago with grade 4 GBM, and it has been a tough road. Some days he is great, and on others silent. But I know this is only the beginning of this rocky road. Did you son-in-law's MGMT and IDH status help in anyway improve his chances? Both are negative for my husband, making me very nervous. Thanks!

You can beat it. Stay strong and believe you can win. I've been there and have seen the ups and downs. Celebrate the ups but push past the downs. Belief gives you hope. I'm on top of the world with clear scan after clear scan after two stage 4 GBM's in 12 months. I believe.
I've actually fought against Prostate cancer x2, Melanoma x2 and stage IV GBM X2 and now I'm living a full life again. I'm 62 and work out at gym three times a week. Mental toughness is a powerful thing. Belief in myself got me through brick walls called cancer.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Pattijeanne on Sat Nov 26, 2016 04:55 PM

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Thank you for sharing.....Patti

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by drowen on Sat Nov 26, 2016 08:12 PM

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On Nov 25, 2016 8:20 PM julesaxon wrote:

On Nov 25, 2016 6:16 PM markvh wrote:

On Nov 25, 2016 4:06 PM donnaruth wrote:

Just a note to offer some encouragement -- just passed 9 years since my GBM IV was discovered.  Short story - surgery to remove, radiation, started Temodar, moved to CPT-11 and Avastin because of questionable MRI, no change on every 3 month MRI's (still have them).  Over the years I went from every week treatment to every other week to every third week to once a month to every other month and will be on every 3 month treatment forever.  Dropped CPT-11 about 5 years ago and just take Avastin.  Take 1/2 500 mg Keppra twice a day.  Feel fine -- have survivor's guilt but wanted to share my story so others can know the numbers may not be with you, but there are folks out here that have a positive story.  Just wanted to share.

Donna

Thank you Donna,   As husband & caregiver for my wife.   I really appreciate that positive story.  my wife was diagnosed last October, (10/2015) with GBM IV went thru two sugeries by Dec. last year, and then radiation, followed by 350 mg of Temodar each 28 days since March.   She's been on 1500mg of Keppra twice/day as well.   The MRI's do not indicate new growth, but swelling is putting pressure to where they are using Decadron.  The doctors are talking about starting the Avastin this next period, (about 12/7/16).  Have not heard anything about "CPT-11".  What is that?  

I'm glad to read these success stories. I too had two stage IV GBM's in a 12 month period in 2013 but after having Gliadel wafers implanted during my second surgery have only had clear scans since then. We can beat this thing

My son has had eleven yrs Gliobastoma free. Avastin/ CPT-11 after surgery/ radiation/ Temador. Good luck, there arte long term success stories out there. 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by donnaruth on Tue Nov 29, 2016 12:26 PM

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CPT-11 is an actual chemotherapy (also known as camptosar). Both CPT-11 and avastin were originally developed to treat colon cancer.  My saying has always been it helps your body at the top and the bottom.  :) . My doctor dropped CPT-11 because doctors began to question if you needed that plus Avastin.  CPT-11 makes you feel yucky -- not as bad as some of the ones for breast cancer and other chemos do -- just blah - for about a week.  

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by markvh on Tue Nov 29, 2016 03:05 PM

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Thanks very much.  next aapointment is 12-7-16.  Think they are doing one or the other.   :(:(

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by wwjdmom on Mon Dec 05, 2016 06:40 PM

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Mother was diagnosed Nov 2009 and died April 2010. 

Live NOW. The surgeries and chemo hastened her death and she had no quality of life from time of diagnose to her very painful death. 

RE: Looking For Glioblastoma Survivors Stage 4

by Cleopatra15 on Sat Dec 10, 2016 05:38 PM

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On Feb 21, 2010 1:29 PM SandraLC wrote:

I have been researching cancer for the last 15 years as my husband side has had all types.  I have 2 children and wanted to be able to protect them.   Several years ago I finally found what I was looking for.  I have a few testimonals of those that have glioblastoma and are survivors for years.  Several at this point whose tumor is shrinking.  If you are interested in the information please contact me.

Sandra

Dear Sandra,

Can you share the testimonials of the survivors of GBM that you have collected over the years? My husband got recently diagnosed with GBM, underwent two surgeries, completed the six weeks of chemo and radiation and is starting his 5/23 chemo cycle from this upcoming Monday - 12/12/2016!

Thank you for your input in advance!

Best wishes to your husband! - Cleo

RE: Looking For Glioblastoma Survivors Stage 4

by Dlynn1210 on Sat Dec 10, 2016 06:31 PM

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Hi Cleo -

I am a tonsil cancer survivor treated at CTCA who sponsors Cancer Compass so when a very close friend was diagnosed with Gloiblastoma Stage 4, I immediately came to Cancer Compass for information. 

The post you are responding to was written in Feb 2010 and the person writing only posted twice.  It was time consuming but reading this blog, which has been running for several years, was a wealth of information for me.

Diana 

RE: Looking For Glioblastoma Survivors Stage 4

by julesaxon on Sun Dec 11, 2016 07:10 PM

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On Dec 10, 2016 5:38 PM Cleopatra15 wrote:

On Feb 21, 2010 1:29 PM SandraLC wrote:

I have been researching cancer for the last 15 years as my husband side has had all types.  I have 2 children and wanted to be able to protect them.   Several years ago I finally found what I was looking for.  I have a few testimonals of those that have glioblastoma and are survivors for years.  Several at this point whose tumor is shrinking.  If you are interested in the information please contact me.

Sandra

Dear Sandra,

Can you share the testimonials of the survivors of GBM that you have collected over the years? My husband got recently diagnosed with GBM, underwent two surgeries, completed the six weeks of chemo and radiation and is starting his 5/23 chemo cycle from this upcoming Monday - 12/12/2016!

Thank you for your input in advance!

Best wishes to your husband! - Cleo

Hi Cleo,

Sorry to hear of your husbands diagnosis but do not despair.  You may read many testimonials from people who have survived much longer then the usual average life expectancy for people with GBM.  I, myself was diagnosed with two stage IV GBM's within twelve months in 2013/2014. During surgery to remove my second one my neuro surgeon implanted chemo laced wafers (Gliadel Wafers) into my brain to kill off any tiny cancerous cells that had not been removed during surgery.  Since then I have only had clear MRI scans.  I have also been diagnosed with prostate cancer and two malignant melanoma's.  That makes 5 cancer diagnoses for me.  My success in surviving these diagnoses inspired me to help other people affected by cancer.  I give talks to cancer groups in my local area and I wrote a book about my experiences through my more than ten years of living with cancer.  The book, "Fullfilling your dream; the battle to beat cancer" is available on Amazon and in it I prepare people for what might be in store for them during diagnosis, treatment and survival.  I write about treatments,  side effects and after effects as well as the mental approach I took to help me with my own survival journey.  As a result of the book I recieve mails from all around the world and it is a great reward for me to be able to offer inspiration and help to anyone who is looking for it.  During my most recent visit to my neuro surgeon I was so proud that he referred to me as "The miracle man"  In fact he is the miracle man who saved my life with his surgical skills and by inseting those wafers in my brain.  I now lead a full life of Gyming, golf, cycling and swiming and am well on my way to fullfilling my own dream, even though my prostate cancer has resurfaced with a vengence and I have had to be put on further treatment more than ten years after I had my prostate removed.  Stay strong and always have belief in yoursleves.  Good luck and best wishes.  Julian.

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