GBM Survivor - 4 Years

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GBM Survivor - 4 Years

by CJANELLE on Fri Feb 01, 2013 08:31 PM

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Hi all,

I will admit 1st that its really hard for me to check-in here, but I wanted to make this post. Since my mom was dx with a stage 4 GBM in Jun of 09 it has really been a long road. When we 1st got the news, I immediatly went online to serach for better outcomes. Unfortuantly, all I saw were stories of people losing their loved ones to this monster.

My mom was given only 18 months and in June of this year she will be 4 years in it. 4 YEARS!!

The reason I post this is because when I was searching, I didn't find a lot of survivor stories and I wanted to let you all know that I live with proof everyday. My mom is on Avasin alone. She's been growth free since starting Avastin 3 years ago. She suffers with short term memory loss, mobility and confusion - all typical GMB patients usually do. 

I know that each case is different but keeping yourself educated as much as possiable, coming here to CC and having an optimistic view can really help. 

I'm not sure if I'll be writing this a year from now but this experience has taught me to cherish the now. Live in the moment, good and bad. We never know what challenges tomorrow will bring, but each morning I wake up prepared to face them. 

I would of never thought I would be a caregiver to my mother at only 23 years old. My life immdediatly changed, just as all your lives have, and I've spent every day since enjoying my mother. I will say that once you find a treatment that works, things get a little easier. There will always be a challenge and nervousness when it's time to get MRI's and such. We all know what it's like to go through this battle everyday.

My heart goes out to the entire comunity of those living with cancer, families, freinds and especially the caregiver. Hugs all around from me to you...

RE: GBM Survivor - 4 Years

by CJANELLE on Fri Feb 01, 2013 08:38 PM

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I also wanted to add that my mother's Avastin treatments are once a month and her doctor allowed her to skip a treament around the holidays and she will skip another in a few months. She also take Keppra as her anti-seizure medication.

RE: GBM Survivor - 4 Years

by ravirajagopalan on Fri Feb 01, 2013 11:19 PM

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Hi Janelle, congratulations and good luck.

Glitzy1294 Glitzy1294
(Inactive)

RE: GBM Survivor - 4 Years

by Glitzy1294 on Sat Feb 02, 2013 12:03 AM

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Thank you so much for what you wrote.  It's nice to find another young person on here.  I'm 30 and taking care of my husband and I hope that he will be as lucky as your mom. This illness is incredibly humbling and like you, makes me appreciate the moments that I have with my husband.  None of us are promised a tomorrow, those of us experiencing cancer are just reminded of this daily. 

RE: GBM Survivor - 4 Years

by Careg on Sat Feb 02, 2013 12:26 AM

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Thank you as A newly dx gmber I LOVE hearing that we are beating the statistics....  We shall overcome! Thank-you!

RE: GBM Survivor - 4 Years

by SarahGrey on Sat Feb 02, 2013 01:22 AM

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WOW!  thank you soooo much for sharing!  as you know, news like this truly gives us all hope...  and bless you for being such an awesome caregiver for your mom!

all the best, sarah

RE: GBM Survivor - 4 Years

by CJANELLE on Sat Feb 02, 2013 01:44 AM

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Thanks for responding! This is not an easy life and I know on my saddest days I needed some positivity. So if my situation give you all that, then be my guest. I am looking forward to more stories such as mine so that it may be encourging to me and others as well!

*sorry for any typos*

RE: GBM Survivor - 4 Years

by GerardT on Sat Feb 02, 2013 02:11 AM

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On Feb 01, 2013 8:31 PM CJANELLE wrote:

Hi all,

I will admit 1st that its really hard for me to check-in here, but I wanted to make this post. Since my mom was dx with a stage 4 GBM in Jun of 09 it has really been a long road. When we 1st got the news, I immediatly went online to serach for better outcomes. Unfortuantly, all I saw were stories of people losing their loved ones to this monster.

My mom was given only 18 months and in June of this year she will be 4 years in it. 4 YEARS!!

The reason I post this is because when I was searching, I didn't find a lot of survivor stories and I wanted to let you all know that I live with proof everyday. My mom is on Avasin alone. She's been growth free since starting Avastin 3 years ago. She suffers with short term memory loss, mobility and confusion - all typical GMB patients usually do. 

I know that each case is different but keeping yourself educated as much as possiable, coming here to CC and having an optimistic view can really help. 

I'm not sure if I'll be writing this a year from now but this experience has taught me to cherish the now. Live in the moment, good and bad. We never know what challenges tomorrow will bring, but each morning I wake up prepared to face them. 

I would of never thought I would be a caregiver to my mother at only 23 years old. My life immdediatly changed, just as all your lives have, and I've spent every day since enjoying my mother. I will say that once you find a treatment that works, things get a little easier. There will always be a challenge and nervousness when it's time to get MRI's and such. We all know what it's like to go through this battle everyday.

My heart goes out to the entire comunity of those living with cancer, families, freinds and especially the caregiver. Hugs all around from me to you...

Greetings: alleluia. Thank you for sharing your story with all of us, especially those of us just recently coping with this illness. God bless your mom. It gives us all more hope. GerardT

RE: GBM Survivor - 4 Years

by ourVictory on Sat Feb 02, 2013 03:41 AM

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I am on avastin monthly after one resection and one gamma knife surgery, scorpion venom, temodar, irinotecan and improving my diet- even though I believe my previous diet was not that bad as well as putting my mind to think as positive as possible but with  fear lingering nearby, Any other ideas that might help?  I am a little over two years by now. I do appreciate  now more than ever caregivers like you that in my case have given me an extraordinary support. Gracias...

RE: GBM Survivor - 4 Years

by RobinMB on Sat Feb 02, 2013 05:01 AM

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Thank you so much for sharing this uplifting message.  It is almost midnight here in NY, and I couldn't sleep because I'm so worried about my husband who is nearly a year into GBM.  He is on Temodar and Avastin.  He functions well, but I worry about the Avastin and its side effects.

You must me taking amazing care of your mother.  She is so fortunate that she raised such a terrific daughter.  You deserve all the best for the loving and caring person that you are.  You are very special.  I wish you and your mother many more precious days together.

I think I'll be able to sleep better tonight thanks to you!!!

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