GBM - there IS hope

justAdad · New User Joined: 21 Aug 2007 Posts: 8

I wanted to provide our story of hope. No one knows how long they are going to live but with a GBM diagnosis the clock suddenly ticks quite a bit louder than before. The thing to remember is that we are all our own sample size of ONE. Nobody else is the same or has exactly the same condition, so ignore the statistics you read and concentrate on beating it.

My 22 year old son had extreme headaches with nausea in the mornings which we felt was stress related. Finally we took him to the emergency room and on December 24, 2006 at 4:10pm we found he had a tennis ball size cyst containing what appeared to be a small tumor, right frontal lobe, son is right handed. I wanted to die then and there. Surgery was December 26 and it was a GBM, 100% resected thank goodness. He was out of the hospital two days later and hiking in the mountains on the third day.

We settled on M.D. Anderson for treatments and went through IMRT radiation and concurrent chemo (Temodar). He sailed through that and subsequent scans looked "OK." This was followed by 28 day cycles of a cocktail of three medications (6-TG followed by Temodar followed by Accutane) to be repeated for a year.

This was interupted when our team leader at M.D.Anderson decided after the last scan, to go it for a cleanup operation. There was a persistant enhancing portion correlating to the tumor bed and was likely necrosis, but also a portion which showed some flair. He thought this might be signs of a lower grade tumor which had likely been there a long time if not since birth and a portion of which likely mutated into the GBM.

Long story made short, our team leader was correct. The post op pathology indicated that there are no remaining GBM cells, and the low grade cells that are there are under attack as a result of the treatments. There is no tissue remaining which one would classify as a tumor, as most of his right frontal lobe was removed during this operation. It predictably had no effect on his memory, function or personality since it had long ago rewired itself when the original low grade tumor and huge cyst damaged it. He is starting his first year of grad school in engineering.

We are not out of the woods yet by any means. He will restart the 28 day treatment cycle and of course the followup scanning and after that...who knows, but things look very, very good. My thoughts and prayers are out to those in more dire straights. There is hope.

ksplat · Posted: Thu Aug 23, 2007 5:04 am Post subject: Re: GBM-there is hope

Dear Justadad,
Your post was a "great read" thank you for sharing your family's story. What a relief to have yr Son doing soooo well. I look forward to reading further "positive" posts from you. Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
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