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Please Help, need info for 11 year old with Glioblastoma MultiForme

PhillieG's picture
Posts: 4912
Joined: May 2005

Hi all, I am posting this on behalf of a friend I have colon cancer myself. Any feedback or advice would be greatly appreciated

The 11 year old was initially diagnosed in October, 2004 with a GBM (Glioblastoma
MultiForme) in the cerebellum. Based on the MRIs at the end of June and
again on July 25th, this initial tumor is showing no activity and appears to
be gone. During the MRI of the end of June, the doctors saw a "shadow" in
the right front of the brain, he had a spinal tap on July 15th which was
negative, but after several days of headaches and vomiting after that a CT
scan and MRI showed a 'blob' in the right front. Surgery on July 18th
showed that most of the blob was blood (something had hemorrhaged) and this
was removed. There were also abnormal looking cells there and as many as
were safe were removed and sent for pathology which resulted in a diagnosis
of the same tumor, with no mutation, but in the right frontal lobe (new

He is currently undergoing the same treatment protocol that he underwent
in November-December: Radiation treatments (for 6 weeks, 5 days per week -
33 in total) combined with low dose of Temodar brand name) / Temazolomide
(pharmaceutical name), 125 mg (6 weeks, 7 days per week - 42 doses). He then
goes into "maintenance mode" which means that approximately every 4 weeks he
receives a higher dose of Temodar (, about 275mg, for 5 days. This is
followed by blood tests monitoring and an MRI every 8 weeks (prior to
chemo). This is the latest approved protocol (and he is part of a study
being run by the Children's Oncology Group).

Some have advised using food
supplements called Glyconutrients by Glycoscience.
He also participates in Reiki healing sessions about
twice each month.

Posts: 1560
Joined: May 2006


I just wanted to let you know that medical information is always available through the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day at 1-800-227-2345 with resources and information. They can also be reached by clicking on the "Contact ACS" link at the top of the page.

Take care and be well,

CSN Dana

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