Glioblastoma

Does anyone know anything about the treatments & prognosis for
glioblastoma, for brain tumor? Member of our family was diagnosed with this 2
months ago, they did surgery & radiation & we're trying to get some info to help
with our family's care & treatment.

My mother was diagnosed with the same kind of brain tumor. Surgery was done and now she is going to start radiation. We are at the same position as you. We don't know what to do next. We are searching and asking for help from anyone.

You need to look at this web page www.virtualtrials.com it is on brain tumors.

My mother was diagnosed yesterday with Glioblastoma Multiforme but we are told they will not do surgery. Is your loved one still alive and what is their quality of life. We are devastated and trying to find hope somewhere.

My husband was diagnosed with a large glio in April with no surgery available due to the location and size. Three days after the diagnosis there was a tumor bleed (doc thought it was a growth spurt of the tumor) and he lost all mobility on his left side.
Proved wrong about the tumor, my husband has almost all mobility back except he will use a leg brace and walker.
He was allowed to have a 6 week tx of chemo combined with chemo. The MRI now shows the tumor arrested, but he has another tumor the size of a pea. They want to continue monitoring both tumors and continue with the oral temodar until November. The oncologist says he feels there is less cancer cell that previously thought because my husband keeps getting better physically.
Mood swings are hard to live with--crying, anger outbursts and frustration due to his condition of immobility and the loss of being able to work and just be with our kids (two teenagers). They still say 12 to 15 months with the chemo continuing. We pray daily for a miracle.

My mother lost her left side, too and she is bedridden. Her Glioblastoma is deep in her right parietal lobe. Is that where your husband's is? I hope your husband continues to improve. My mother's tumor grew while being treated so she had the Gamma Knife procedure. You may want to discuss this option with your doctors.

Paul is doing physically better. His oncology doctor is amazed at the continued progress.

Paul is now down to 2mg of decadron every 12 hours from l0mg every 4 hours. He will be off insuling soon in fact hasn't had any for two days so far.

Last MRI showed nothing new with the large tumor since July and July's said nothing different from the initial MRI in April. However there were two small areas that were inclusive. So we will stay with the temodar for Nov and Dec and then a new MRI.

Paul continues to exercise with Home Health 3 days a week. He was too tired to walk with his leg brace this week. I think between being depressed and tired he just gives up to sleep most days. He says he hasn't given up, but he is just so tired all the time I wonder.

Paul's brain has left him easily chilled so since winter is fast approaching we have the heat already cranked well past what the rest of us can stand. Can't imagine what it will be like this winter.

My sister has the same tumor and has survived for over two years. She is in the care of the brain tumor cancer team at Duke Medical Center in North Carolina. They have been amazing to work with and are on phase II of a clinical trial that seems to be very effective. Best of luck to you and your family. I know how devastating this can be.

Contact the incredible folks at Duke Medical Center in North Carolina. Their brain tumor group is very progressive and have helped my sister tremendously. She is now two years out from her original surgery and her MRI's to date have been excellent and shown great improvement. Good luck to you and your family.

Have you looked into the gamma knife? I think it's known by many names, but the main purpose is to cut off the blood supply to the tumor with radiation on either side (it's non invasive and is a combination of laser and radiation technology) which causes the tumor to wither and die. It wasn't an option for my sister as she had gone through the entire battery of radiation and had her "lifetime" supply of radiation at the point we thought this would have been an option. She is now under the care of doctors at Duke Medical Center in North Carolina and is part of a clinical trial - she's 2 years out from diagnosis at this point. Best of luck - I know how difficult this is. We call the outbursts "tumor talk".