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
-
I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
-
Has anyone tried these supplements? Do they give MGers more quality of life by improving memory and overall well being?Thanks!Barbel
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!