GBM (10 Year Survival) & Li-Fraumeni Syndrome

Started by Shelly, January 20, 2017
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Shelly

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January 20, 2017
My daughter was diagnosed with a 7 cm glioblastoma multiforme (GBM) in her left frontal lobe at age 24. After the typical course of surgery, radiation, and a year on Temodar, she has experienced no recurrence after 10 years. This has astounded all of us, including her neuro-oncologist. Other than chronic fatigue, chronic nausea, and minor short term memory loss, she is doing well. She has follow-up MRIs every 6 months. Now my quandary: Given the amount of extensive cancer in our family (leukemia, soft tissue sarcoma, and a variety of other cancers), my daughter and I recently tested positive for Li-Fraumeni Symdrome (LFS). LSF is a rare inherited genetic cancer disorder that greatly increases one's risk of developing cancer during their lifetime. Sometimes people with LFS develop multiple cancers in childhood or as young adults, including brain cancers. I am assuming LSF (TP53 gene) caused my daughter's GBM. Are there others who have knowledge or experience with LFS and GBMs or other brain cancers? I wonder what genetic characteristics my daughter has that are responsible for her long-term survival. Seems like researchers would want to sequence her genes in the hopes of helping others with GBM and other brain cancers. Thoughts or suggestions?
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