Gbm Iv

Hi, every one . This is my first time. I'm new to the web and English is not my first language.  After finding the man of my dreams almost five years ago, he was diagnosed August 8, 2006 with GBM IV.  He's only 43 years old, never sick, etc...  He had a craniotomy on August 11, 2006 to remove as much tumor as possible.  After that he went through six weeks of Temodar and Radiation.  Other mediations at the time were Decadron, Keprae.  We started a PhII clinical trial with Temodar and Poly IC-LC which involved taking Temodar for 5 days and injections of the Poly IC-LC three times a week.  This last for six months and everything was going very well.  MRI in March showed no tumor but a resent MRI in May showed the tumor has returned.  We went to see the surgeon who performed the first surgery and there is a debate on whether to do another craniotomy followed by another clinical trial and gamma knife therapy.  I'm sended this out there in case someone who has a loved one going through something similar and can offer advice.

God Bless,  

You should try posting Your message on the brain cancer site - i'm sorry to hear your news - my husband was just dx in the last 3 weeks with GBM IV.  He had a total re-section of the tumor and we begin radiation/temador next week.  So we are still in the "vast unknown" stage of what's going to happen in our lives.  But the brain cancer message board seems to have alot of very knowledgable people who may offer some good adivse.

 

good luck

Mary

On 5/31/2007 Armani wrote:

Hi, every one . This is my first time. I'm new to the web and English is not my first language.  After finding the man of my dreams almost five years ago, he was diagnosed August 8, 2006 with GBM IV.  He's only 43 years old, never sick, etc...  He had a craniotomy on August 11, 2006 to remove as much tumor as possible.  After that he went through six weeks of Temodar and Radiation.  Other mediations at the time were Decadron, Keprae.  We started a PhII clinical trial with Temodar and Poly IC-LC which involved taking Temodar for 5 days and injections of the Poly IC-LC three times a week.  This last for six months and everything was going very well.  MRI in March showed no tumor but a resent MRI in May showed the tumor has returned.  We went to see the surgeon who performed the first surgery and there is a debate on whether to do another craniotomy followed by another clinical trial and gamma knife therapy.  I'm sended this out there in case someone who has a loved one going through something similar and can offer advice.

God Bless,  

 

 

On 5/31/2007 Armani wrote:

Hi, every one . This is my first time. I'm new to the web and English is not my first language.  After finding the man of my dreams almost five years ago, he was diagnosed August 8, 2006 with GBM IV.  He's only 43 years old, never sick, etc...  He had a craniotomy on August 11, 2006 to remove as much tumor as possible.  After that he went through six weeks of Temodar and Radiation.  Other mediations at the time were Decadron, Keprae.  We started a PhII clinical trial with Temodar and Poly IC-LC which involved taking Temodar for 5 days and injections of the Poly IC-LC three times a week.  This last for six months and everything was going very well.  MRI in March showed no tumor but a resent MRI in May showed the tumor has returned.  We went to see the surgeon who performed the first surgery and there is a debate on whether to do another craniotomy followed by another clinical trial and gamma knife therapy.  I'm sended this out there in case someone who has a loved one going through something similar and can offer advice.

God Bless,  

 

Hi Armani

  My name is John I will be 47 yrs old on Dec. 9th My wife and I have two great kids 5 and 11. I was diagnosed witha GBM IV in March of 2004.  Had surgery, complete removal from my left frontal lobe, radiation with clinical trial Celebrex 800 mg per day, in Sept. 2004 started chemo ( temadar )  for 5 days on a 28 day cycle for 2 years. I've been off the chemo since Sept.2006, in March of 2008 I will be a 4yr survivor!!!  I'm telling you there is always hope no mattter what the doctors tell you!!!  They told me I had 12 to 18 months I love proving them wrong!!!

Stay Strong John F / Boston Ma.

Hello my name is Greg - My wife 59 yrs old was diag with gbm 4 aug 9th 2006. Surgery Right side of brain with underlying tumor they could not operate on. followed with radiation and 6mo of temador ending in May '07.. doing quite well actually . we are now in our 16th month and mri's are all coming back good - no change- but she is experiencing - crying most of the day - general confusion- general weakness- very clingy. I just read about the Herxheimer syndrome [ things get worse before they get better] and wonder if anyone else has experienced this.  We are also doing some alternative treatments  that I feel very good about.   Thanks Greg