MPNST of the neck

smylin
smylin CSN Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
Hi.. Can anyone give me info on Malignant Peripheral Nerve Sheath Tumor? Have you had treatment? If so, what kind? Any diet recommended or supplements? I was born with Neurofibromatosis Type 1 which can turn malignant and I had three large MPNSTs removed from my neck 2 years ago. I have a recurrance with a growing tumor under my jaw that is inoperable. Any info from anyone would be appreciated. My wonderful husband and six terrific children are so worried about me and I want to live with all my heart to spare them from pain and sorrow. Help me with some info if you can. Thanks and God bless.

Comments

  • BugHunter
    BugHunter CSN Member Posts: 152
    #2
    If you do not find anyone here that can help, you may want to contact Cancer treatment centers of America. They are a great source of info on the more rare cancers.

    All my best,
    BILL
  • jkinobay
    jkinobay CSN Member Posts: 302 Member
    #3
    You probably already Googled it but check this out. Copy and paste to your web browser.

    http://www.google.com/search?q=Malignant+Peripheral+Nerve+Sheath+Tumor&rls=com.microsoft:en-us:IE-SearchBox&ie=UTF-8&oe=UTF-8&sourceid=ie7&rlz=1I7GGLR

    I hope you find the help you need. Stay strong for yourself and your family. And, keep us posted on your progress. JK
  • kellbelle834
    kellbelle834 CSN Member Posts: 2
    #4
    My husband was diagnosed in
    My husband was diagnosed in 2005 and has MPNST of the parotid gland. Its recurred 5 times. He is currently being treated at MD Anderson and we are waiting to see if they can operate again. In the meantime he is getting Ifosphomide. We have an 18 month old daughter and I am scared. He lost his right ear and the tumor is now pushing on his brain and jaw causing lots of pain. He is only 25 and I am 28.

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