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My Dad GBM Grade IV. Multiforme "Glad to be here".

joerullo
Posts: 9
Joined: Jun 2008

I am posting my first messege as compared to hundreds over at the National Brain Tumor Foundation Messege Board. I look forward to learning a great deal as I did and continue to at the NBTF messege board. These sights are a wealth of real, actual, and living data information to combat a disease very little know or care about. My dad hit his head on the trunk in May 07 and had a second MRI to check something in question June 08. His symptoms at the time of his head injury mimicked a brain injury. However, the MRI with conrast identified an unidentified growth that we have come to know by stereotactic biopsy at Sloan Kettering as GBMIV. Multiforme. My dad was on temador and radiation initially 140mgtemador with 40 days radiation. Then after radiation continued on temador 240mg and maxed out at 340mg up until May 08. He started CPT11/avastin on May 15, 2008. All the major and deadly side effects have been absent. To date he has been able to do pretty much anything except the computer which he did all the time. His brain performance has done a 180 for the positive in all aspects including memory, cognitive, and high function reasoning. However, there is a slight delay in getting out new thought and the added frustration effects the judgement. He will have his 4th treatment on June26. I am amazed. The temador completely turned against him when it stopped working. He became violently ill, couldn't walk, couldn't think, was having involuntary body locks. The temador stopped working and the tumor grew and caused swelling. But, the next day after the avastin/cpt11 he was able to do anything. It was a miracle. Obviously the temador killed all the cells it could but the other cells that didn't die from temador needed to be addressed. I am convinced that his MRI on June26 could be a surprise. His tumor started out as a quarter sized tumor in the left temporal lobe with a tumor the size of a half a dime under it. The tumor was not agressively growing during radiation but after months on temador became ineffective. The tumor has been isolated in the left temporal lobe. It hasn't left that region. Also, my dad is a leftie which means alot of his vital functions are in the right hemisphere. I look forward to future post and any information of similarieties or comparisons. I have been my dad and mom's medical adviser for years. I just let my dad's prior doctor go and hired a new team for the cpt11/avastin and I am just getting back to the research swing again. God Bless you all and keep up the good work.

janinemah's picture
janinemah
Posts: 53
Joined: Feb 2006

Hello,
Welcome. I'm glad your dad is doing well. My mom had a GBM IV, she fought it for 18 months, It was a very hard fight. She had 3 surgeries, rad, temador, a trial using scorpion venum backed with radiation, and 8 other chemo's (sometimes 2 at a time). anyway, her tumor started out in the occipital lobe, then spred to the left temp lobe and multiplied to five tumors. She was right handed and it caused her many problems. She passed away 6 months after it moved to her temp lobe, June 7, 2007.

I'm very sorry your father is having to go through this and I pray his treatments continue to stop this beast.

Hang in there.
Janine

Sophie051807
Posts: 2
Joined: Jul 2008

Hi...my step-mom was diagnosed with GBM on June 26, 2008. It started out that she was having a slight twitch. She had been through some highly stressful events in the past few years, (her father dying and MY father having been diagnosed in 10-07 with esophogeal cancer.) I must add that my father had successful surgery and is 6 months post-op with a clean pet scan! My step-mom went to a neurologist who diagnosed her with severe depression. This never really felt right to any of us considering her symptoms were getting progressively worse. She was unable to put on a pair of pants due to an imbalance and inability to use her left side. This all happened within about 1 week. After her diagnosis, she was started on temador and radiation. The tumors (4) are inoperable because they sit on the area that affects motor skills. She is 2 weeks into treatment and has made considerable progress. She is able to move the left side again and her mood is elevated. She is only 58 years old. Please tell me there is hope. As a note, the original neurologist was a joke. He tried to continue on her case and was asked to leave. He never did any physical tests on her. He just presumed he knew what was wrong after reading a textbook. Please use this experience of ours to make sure others get proper treatment.

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