What is Neurofibromatosis
Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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gleevec
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While doing yet another NF search on the web, I came across a study being done using 'gleevec' for possible shrinking or stopping plexiform tumors. Has anybody tried this or heard anything about the results/side effects or availability of this drug?
Posted on 02/02/08, 04:02 pm |
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The ability to get on Gleevec off-trial basically boils to two things (in the US anyway)
one, having a doctor wiling to prescribe, monitor and follow a protocol similar to the trial and most importantly, wether your insurance will cover it for off-label uses. Many don't and will require pre-authorization. 
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Yes, that is a good point about the insurance.
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Good idea! I will be checking into it. I am also going to the CTF Symposium April 3-5th to see what other options are available and hopefully meet some parents and doctors experienced with plexiforms in risky places.
I am glad I found this board, you have all been very helpful. Tracy
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i am doing the trial for Gleevac right now. it is still to soon to tell if it works but in a few more months i should know. the only side effects i really had is nausea.
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please keep us posted Ant.
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