Jul 02, 2008 - 12:59 pm
I am hoping to find anyone with Malignant Peripheral Nerve Sheath Tumor and find out about their treatment and diagnosis and any alternative diet or supplements they are using. I was born with a genetic disorder called Neurofibromatosis type 1 that sometimes turns malignant. I had 3 large tumors removed from my neck about 2 years ago and have a new one under my jaw that is inoperable. Anyone who knows someone or anyone who has MPNST, please let me know how you are doing and what you are doing. I appreciate your help. I have 6 grown children and 4 grandchildren who are terrified and I am willing to try anything to stay alive and not hurt them or my wonderful husband. Thanks for any help and info you can offer.