Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Dr. William Knowles spoke about the latest on Gleevec drug trials. If you haven't heard of him, he was a former drug scientist at a pharm company before quitting & working on the NFCure.org full time. His twins were born, so he understands the urgent need for a cure.
I also spoke to a NF gal who told me to check out NexGenix & their clinical trials for the dermal tumors. I just signed up to be contacted. Their website: http://www.nexgenixpharm.com/index.html
She also mentioned the drug ketophine or ketofin (not sure exactly) but it was prescribed by Dr. Riccardi (who I'll see next month), which he believes reduces tumors. Its not available in the US but must be ordered from international sources.
Gleevec is made by Novartis
-decreased mast cells in tumors.
-supressed tumors in mice studies
-reduced PDG-PET uptake in PN
-10% cell death
side effects are nausea & rash.
severe side effects include edema & cardiovascular disease
12 drugs identified for NF1 trials. 12 additional drugs targeted
Pfizer, GSK, Novartis, Eli-Lilly: deals have been approved
AstraZeneca, Bristol-Meyers, Hoffman: negotiations in progress
I also spoke to a NF gal who told me to check out NexGenix & their clinical trials for the dermal tumors. I just signed up to be contacted. Their website: http://www.nexgenixpharm.com/index.html
She also mentioned the drug ketophine or ketofin (not sure exactly) but it was prescribed by Dr. Riccardi (who I'll see next month), which he believes reduces tumors. Its not available in the US but must be ordered from international sources.
Gleevec is made by Novartis
-decreased mast cells in tumors.
-supressed tumors in mice studies
-reduced PDG-PET uptake in PN
-10% cell death
side effects are nausea & rash.
severe side effects include edema & cardiovascular disease
12 drugs identified for NF1 trials. 12 additional drugs targeted
Pfizer, GSK, Novartis, Eli-Lilly: deals have been approved
AstraZeneca, Bristol-Meyers, Hoffman: negotiations in progress
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
My son has NF and a large plexiform in his neck and chest, I am on a quest to find our next best move for him.
Thanks for your post!