Travelling The Gbm Highway

My husband was diagnosed after a biopsy on April 25 with a possibly cancerous brain tumor. The craniotomy was done on April 28 and confirmed a GBM Stage IV. The surgeon feels he got it all and everyone agrees that he's in a good position for the best response to radiation and chem .. no seizures, stroke or excessive bleeding during surgey; they consider the tumor "relatively small" (about the size of a tangerine!) and feel it was found early. However, the tumor grew from almond size to tangerine size in one month. That's not encouraging.

He started radiation Monday, June 5 and Temodor 140 mg June 11. Because of where the tumor was located, he's lost his right peripheral vision in both eyes and not expected to get it back; has short-term memory loss; and expressive effasia. i.e., he cant find the words to say what is on his mind. It's extremely frustrating for all of us. He can't read, drive, or dial a phone.

He's been on decadron since the surgery, so just over 6-weeks. They make him crazy! Always famished --his midnight snacks are five-course meals, irritable; unable to sleep.

Here are my concerns: Will the radiation destroy the progress he's made in building new communication pathways in the brain? He seemed so much more with it before steroids and I'm afraid the radiation will kill too many of the good cells with the bad. What is typical quality of life post radiation/chemo? What if any alternative treatments has anyone tried?

I have a yoga studio and, as you can imagine, many of my students are vegan, totally organic, etc. I've been hearing a lot about glyco nutrients to boost the immune system as they are one of the very few things that will break the blood/brain barrier. Also been reading a great deal about a high, organic vege/fruit and low carb/meat diet -- good for everyone -- to get natural nutrients without steriods, pesticides, and antibiotics. In fact, I've actually heard it said that the grocery store will kill you!

Anyway, I'm just starting down this path and interested in sharing the successes, failures and day-to-day coping strategies that others have or are experiencing.

Thanks..............KatieB

Hi Katie,
My name is Dana and my mom (61 yrs. old) was dxs in July 2005. She had surgury Aug. 1st and was also told they felt they got it all. Since then she has had little to no side affects other than being tired. Her tumor was the size of a quartar when removed. She was given 8 months to live. I am happy to report she is still alive.(Only taking Temodar and anti seizure meds) She only eats organic foods now, does not use deodorant or body creams unless deemed organic. She also learned the darker the foods the better. Purple cabbage, black grapes,etc. She was also told shellfish helps the tumor to grow so she no longer consumes any shellfish or shellfish containing foods. You would be suprisd how many canned foods that are organic contain some sort of shellfish. She has recently been told by the doctors at Duke University, whom she has regular contact with, that she stands a good chance of being a "long term" survivor. 10+ years. However, in saying that, she recently experienced alot of pain behind one of her eyes and after a MRI they discovered that there was a change in her brain. Either tumor or scar tissue. We do not know which as of yet but both require additional brain surgury. If it is scar tissue they say usally they get in the brain and find tumor growth or at the least cancer cells present. We can only wait and see. The prognosis for GBM is very poor, most live 16 months, but who is to say that this is the way it has to be. Depending on your husbands age, that plays a big part in the fight of this disease. The younger you are the better your chances. I know this is not what you wanted to hear and I am sorry.. You and your husband will bein my thoughts and prayers.
Dana

I was diagnosed in 2003 on my 23rd birthday. I've had a couple surgeries, radiation, and a few different chemos.

The doctors originally only gave me 17 months. Well, I showed them!!

The only lasting side effects that I've had are that my eyes are very sensitive to light and because of it I am unable to drive.

The only other thing is fatigue.

I know what you mean about the midnight snacking from the steroids. After my first surgery I gained 40lbs. Once I was off the steroids I lost it all. After my second surgery I gained 65lbs!!!! So far I've lost 40lb of the 65lbs.

I finished my radiation in Nov. 2003 and was off the steroids May 1, 2004.

After the 2nd surgery I was on steroids from August 2004 - November 2004.

Ask the Dr. how soon he can be weened after radiation. The sooner the better as long as there is no swelling.

In all of these responses I only now realized how young you are. I had no idea. Thank god you are so strong and fighting even stronger. Stay healthy my brainy one..
You are an inspiration!!!
Dana

Brainy Chick, I've often thought that myself. You are one tough chick and an inspiration to so many! I recall seeing you mention all of the people you've known with brain cancer in your life and I was astounded. Anyways, just wanted to pop in with a post letting you know you're in my thoughts and thank you for your insight and inspiration.

Sally.
w/o David dx GBM 3/28/06