Glioblastoma in 3 family members!

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Glioblastoma in 3 family members!

by searchingsuz on Fri Jun 15, 2012 10:04 PM

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Does anyone have any idea as to how this could happen?  I have contacted Gliogene to be a part of their study.  No response yet.

RE: Glioblastoma in 3 family members!

by siblingof on Sat Jun 16, 2012 12:43 AM

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So sorry to hear about this. Yes. Familial glioblastoma can be caused by any of several genetic conditions, including Turcot syndrome, neurofibromatosis Type 1 (also called NF1), Li-Fraumeni syndrome, Von Hippel-Lindau disease, and tuberous sclerosis. These conditions can run in families and cause glioblastoma to run in families, though familial glioblastoma is so rare that most of the medical community firmly believes it doesn't happen at all. This is just starting to be written about in the medical journals. But I've seen several instances of it mentioned on the tumornets.

RE: Glioblastoma in 3 family members!

by sluss910 on Sat Jun 16, 2012 03:02 AM

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Curious as to what the relationship is between the 3 family members if you don't mind sharing.

RE: Glioblastoma in 3 family members!

by passionfish on Sat Jun 16, 2012 03:13 AM

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Sadly enough, I knew a bit about GBM before my sister was diagnosed with it.  A close family friend had a first cousin with GBM and her two brothers did as well..Joey was dx at the age of 27, Janet at 34 and Jesse at 46....They grew up on a farm in New Hampshire and we always wondered if it might be chemicals that had contaminated the drinking water...A tragedy for sure...It was devastating loosing my sister to it ,  I can`t imagine the pain of loosing three siblings ;-(

Hope this helped...Adonna   sister of Marilyn dx GBM 7/27/09  died 12/21/09

RE: Glioblastoma in 3 family members!

by searchingsuz on Sat Jun 16, 2012 02:47 PM

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Thank you for your detailed message.  I have looked at the conditions that you have mentioned.  I have found on Gliogene that there are several families with two or more members cursed with this disease.  Yes, it is rare.  Trying to find answers for the next generation.  I want to leave them with as much information that I can find.

RE: Glioblastoma in 3 family members!

by siblingof on Sat Jun 16, 2012 03:27 PM

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You're welcome. Hope you find the answere... you can be tested for these syndromes. That may be part of the Gliogene study... quite likely is.

RE: Glioblastoma in 3 family members!

by bill1958 on Thu Jun 21, 2012 01:46 AM

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My wife (59 years old) was diagnosed with GBM IV 10/18/11.  Her younger brother died of the same thing 2 1/2 years ago.  I know it is very rare to have two siblings with the same dx but we have not had the opportunity yet to persue the familial aspects of this terrible disease.   

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