Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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

by Argos on Mon Apr 09, 2012 07:34 PM

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Hi Doraza,

During my first surgery and subsequent chemo/radiation therapy I was also treated with Phase II of the Nelfenavir trial. I hope that won't block me from engaging in other recent study procedures; such as CDX-110 if it applies to me.

RE: Looking For Glioblastoma Survivors Stage 4

by alexyj23 on Thu Apr 12, 2012 05:19 PM

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I hope to hear from you, but we just found out 2 days ago that my father who is 54 has Glioblastoma.  They too are not able to remove his because of the location.  I am just looking for hope that he will survive longer than what is expected.  He starts Chemo and radiation next week and I am scared because he has always been so strong and outgoing.  It is going to kill me to see him in bad shape. 

Praying for a miracle!

RE: Looking For Glioblastoma Survivors Stage 4

by sassy50 on Fri Apr 13, 2012 02:27 AM

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Keep his spirits up!!!!! He'll heal with the grace of God.. Where are you located ? Don't let him think you are worried

 

RE: Looking For Glioblastoma Survivors Stage 4

by alexyj23 on Fri Apr 13, 2012 02:44 AM

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On Apr 13, 2012 2:27 AM sassy50 wrote:

Keep his spirits up!!!!! He'll heal with the grace of God.. Where are you located ? Don't let him think you are worried

 

We are in Dallas, Texas. Thank you for your kind words. It's good to hear positive words when our family is feeling defeated.

RE: Looking For Glioblastoma Survivors Stage 4

by survivorswife on Fri Apr 13, 2012 05:35 AM

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I am so sorry to hear about your father. 

My husband was diagnosed in August 2005 at the age of 38 and was given 6 months to a year to live.  He is still very much alive and is doing extremely well.  He did have surgery to remove the tumor.  The doctor put Gliadel Wafters in his brain during the surgery.  I haven't seen anyone else mention their doctor using those, but in addition to getting rid of cancer cells the Gliadel Wafers totally cured his psoriasis for a period of time. 

After surgery he had 6 weeks of radiation and took Temodar daily.  Then he had Temodar on a cycle of 5 days on and 25 days off for two years. 

He was extremely tired on radiation.  He would often fall asleep most anytime he was sitting down. 

My husband did use some alternative supplements but did not follow a special diet of any kind.  For some reason ham became his comfort food during the radiation and chemo periods.  I know they say not to eat the red meat, but all that appealed to him was ham so that's what he ate.

The only true lifestyle change he made was to give up Diet Dr. Pepper.  Prior to the diagnosis he would drink 4 to 6 daily.  He hasn't had a diet drink of any kind since then. 

He has few lasting side effects other than a slight tremor in his right hand and he can't handle the heat so he stays inside during the summer.   Otherwise, he is doing fine.  He works full time, is very involved with our daughters' numerous activities and he does a lot of volunteer work.   

He only goes in for MRIs every 6 months now. 

His full story was several months ago in this blog.  I would look up the exact number, but I'm falling asleep.  I'm not even sure my writing makes total sense since it so late. 

We live in Austin, Texas.   I'm sending lots of good thoughts and prayers to your family!  

RE: Looking For Glioblastoma Survivors Stage 4

by AllyBlue on Wed Apr 18, 2012 07:40 PM

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Survivorswife,

What kind of alternative supplements did/does your husband take?

RE: Looking For Glioblastoma Survivors Stage 4

by drowen on Wed Apr 18, 2012 09:21 PM

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Dear Friends,

I report every year on the long term survival of my 43 yr old son on this board. Dec 5 2005 was first surgery. Treatment was unusual: Radiation/ Temador (several months) then followed within three weeks with a year of Avestin/ CRT-11. He was diagnosed at Oschner in New Orleans (surgical debridement was done there), followed by more biopsies at MD Anderson (GBM stage 4). This is not a case of a mis-diagnosis or a lesser tumor type- rather the response of an aggressive GBM to combined radiation/chemotherapy. He has been in remission for 7+ years without any physical disabilities or limitations. We wish all of you the best in your time of pain and suffering- also in your successes. Hopefully, the pros with find common markers that allow us to determine therapy regimens. As a medical researcher I remember the early days of treating childhood blood cancers- we had similar poor results in many cases yet some responded very well. We appear to be at a similar crossroads in treating brain cancers.

RE: Looking For Glioblastoma Survivors Stage 4

by eternalife on Wed Apr 18, 2012 09:33 PM

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Hi survivorswife,

I am so happy to hear of your husband's success with this ugly type of brain cancer. My father died of GBM in six months, he had the surgery in 1983 and died the same year. Of course the drugs available were few and far between... I wish all  brain cancer survivors the best wherever they reside in their own personal journey and pray there will be a cure very soon.

My husband is currently battling Esophageal cancer , stage iv, here I go again.

RE: Looking For Glioblastoma Survivors Stage 4

by alexyj23 on Wed Apr 18, 2012 09:58 PM

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That is so great to hear.  My dad starts his chemo and radiation on this Monday so I hope he does well with it and they can shrink it or it just stops growing.  He is in such good health and very positive.  I am the one who cannot seem to stop crying and pull it together. 

I feel aweful because my mind will drift throughout the day and I will start thinking about his funeral and all these "what if" situations.  He is doing fantastic, but I can't help these thoughts crossing my mind and I feel like I will end up ginxing his health.  Did things like this every cross your mind when you found out originally?  I have bad anxiety, so of course it doesn't help in this situation.

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

by alexyj23 on Wed Apr 18, 2012 10:18 PM

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On May 21, 2010 2:17 AM akh1986 wrote:

My mother with a GBM III on 5-6-10. She just started RT and Temodar in the last week. She seems to be positive about it. She just wants to kick it. She is receiving treatments at Loyola in Maywood, IL. They seem to be confident that she will recover from this tumor. She has been having stroke -like symptoms and requires 24/7 care while taking a steroid for swelling. She has a lot of problems related to speech due to the location of the tumor.

We lost my grandmother to a GBM IV 10 years ago at the age of 63. It's hard to not compare my mom's tumor to what happened to my grandmother. Medicine and technology have advanced a lot since 2000 so we're hoping she will be cancer free in the next year.

I wanted to connect with other people that have dealt with this. I honestly don't know what I what do without my mom. She's my best friend. She is only 49 and this cancer has been a very overwhelming and hard experience for her and the rest of my family. I never thought in a million years I would tell people, "my mom has brain cancer."

Alexandra

Hi Alexandra,

I just saw your post on here.  My dad was diagnosed with glioblastoma a little over a week ago.  They cannot remove it due to the location, but he will start chemo and radiation next week to hopefully stop it from growing and or shrink it.  I too am afraid to imagine what it would be like without him.  I would love someone to talk to about this. 

How is your mom doing?  I hope healthy and well.

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