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ESHAxo's Whiteboard
Mar 26 2009 by passion4living

Hi ESHAxo,

 

I was trying to post an answer to a question of yours on medicines for neurofibromatosis but kept getting error messages.  So, if it's alright with you, I'm posting it on your Whiteboard.

 

Here it is...

 

Hi ESHAxo,

 

Because there is no cure for the disease itself, the only therapy for those people with neurofibromatosis is a program of treatment for both NF1 and NF2 by a team of specialists to manage symptoms or complications. Surgery may be needed when the tumors compress organs or other structures.

 

Less than 10% of people with neurofibromatosis develop cancerous growths; in these cases, chemotherapy may be successful. A new clinical trial at the National Institutes of Health (NIH) uses a drug called Pegintron, brand name for PEG-interferon alpha-2b.

 

While it is commonly used as a treatment for hepatitis C, it has also been shown to have optimistic effects in the treatment of malignant melanoma and in patients with neurofibromatosis. In most cases the neurofibromas stop growing and sometimes even have shrunk.

 

Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors; however, there is a chance that the tumors may grow back and in greater numbers. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy.

 

For NF2, improved diagnostic technologies, such as MRI, can reveal tumors as small as a few millimeters in diameter, thus allowing early treatment.

 

Surgery to remove tumors completely is one option but may result in hearing loss. Other options include partial removal of tumors, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting. Genetic testing is available for families with documented cases of NF1 and NF2. New (spontaneous) mutations cannot be confirmed genetically. Prenatal diagnosis of familial NF1 or NF2 is also possible utilizing amniocentesis or chorionic villus sampling procedures.

 

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