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MPNST treatments ?

jthom75
Posts: 3
Joined: Dec 2009

I am a 34 yo male in South Florida. I had 5 malignant peripheral nerve sheath tumors removed from my lower abdominal and pelvic area about 2 months ago.1 was the size of a basketball and the others 3-5 centimeters. Since then have been to the university of Miami and had the pathology redone and have seen a doctor that is ( from what Ive been told ) the only expert in this area in Florida.He came here from Sloan Kettering in NY. He told me that because of the location of the tumors radiation was not an option and that chemo would be extremely toxic and is not proven to have any effect on this type of tumor. I have a history of tumors . I have had 2 astrocytomas ( benign )removed from my brain-stem at the age of 5 and 12 and varying diagnosis of neurofibromatosis.
Ive been told that all we can do is surgically remove anything that arises and have ct scans every 2 months.
Everything I read on the web on this seems to be what Ive already been told.
I really need the help of someone that is going through this or has found hope through treatment that may help me.

Thanks

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