Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

Hi,
My dad was diagnosed with Glioblastoma Multiforme
last year May and they operated him in india. They gave him radiation and tamadol. He lost lots of weight as the apetite was very less so he wouldnt eat much. This year in Feb they found 2 small spots kind of thing and gave heavy dose of radiation called SRS. In may they agian found tumor and operated on him. Since then he has lost lot of his memory and ability to speak along with little paralysis on his right hand and leg. He is diabetic but we are fighting with the disease. Anybody has same kind of experience please let me know how to handle it. Right now he is less than 50 kgs and too weak to walk or do anything.

Thanks

Manoj

Hi, How is your dad? I just read your msg,and wanted to tell you my info . My mom was diagnosed Feb 12th 2006 with this monster, and is doing awesome! I thought that maybe I could help! Stacy

I hope she is seing Dr.Peter Black at Brigham and Womens he is amazing i was diaganosed 9/05 with a gbmstage 4 here it is a year later i am doing wonderful . They were able to get all of the tumor it was encapulized, attitude is key. There have been long term survivors, I know I will not let this get me. I will be in the medicals books as the longest survivor. Attitude is everything

My husband was diagnosed almost 4 years ago with this dreadful disease. He has been clear for 3 years until the recurrence last 11/05. He is now taking Avastin which is not yet FDA approved. We will know in October if this is working for him. For those who want to have Avastin for Glioblastoma, ask your oncologist to enroll in SPOC program where they will cover expense if the insurance rejects it.

Hello everyone

My husband was diagnosed with GBM on 11/20/06. He had surgery, radiation and is now on Temador, what is Avastin?? His speech has been affected and also his eye sight, but he is not giving up!!! Praise the Lord.........

how old is your mom

Avastin is now being used for GBM patients and seem to be working well. It is actually used for colon cancer but people with GBM seem to be responding well. My husband is being treated with it along with CPT 11 combination.

Thank you Gennie. Did your husband take Temodar? My husband is taking Temodar every 23 days for 5 days.

Yes he did 3 years ago (it worked and he was clear for 3 years which is a miracle) and with Avastin as a new drug for GBM he did not take it again with this tumor recurrence this time.

My husband was diagnosed at age 55 3 years and 7 months ago. He had surgery, radiation, BCNU. He did alternative therapies as well -vegetarian diet, energy treatments (like reiki) and had a fighting attitude. He has been on anticonvulsant therapy since the surgery and remained high functioning.The fatigue and short term memory loss, mild seizure issues finally made him quit work (the center of his life) a type A personality about a year and a half ago. He has had MRIs every 2 months which have not changed. Two weeks ago he had a grand mal seizure, & trileptal was added to his treatment. So far his neurologist is not talking of a recurrence but he gets scanned again soon. Two years ago he tried Temodar (preventatively) but he was sick as a dog and did not tolerate it.

My question is whether this bone tired fatigue, much worse in the past 2 weeks is due to the anticonvulsants. His balance is suddenly worse, his stamina, short term memory are worse. His appetite has increased, always hungry, gaining weight, but does still not eat meat, or sweets. He naps 3 times a day and 10 hours at night. We've been so optimistic beating the odds. Does anyone recognize any pattern among long term survivors? We might be in denial, because he has done so well but we don't want to be blindsided,still have things to do!
Any thoughts?