But whether that's good or bad isn't yet clear
by Nskyrie on Mon Feb 01, 2010 02:27 AM
To all of you out there with MPNST, there is hope. I am f of 45, i was diagnosed in 2006 with stage 3 MPNST in right thigh. The lump was as big a small football and grew all of a sudden. When i went to see surgeon, was scheduled for a 20 minute surgery, it took over 4 hours. I had a second surgery a month later to remove margins. I then had 30 radiation treatments and 1 chemio session that almost killed me. I was told then the 5 year survival rate was 15%. It will be 3 years on the first week of march that i finished all treatments and i am still in remission and ALIVE. I am only treated for severe pain caused by the importance of the surgeries and am doing fairly good. THERE IS HOPE!
by jesslen12084 on Fri Feb 05, 2010 12:56 PM
I am a 31 yo female stage 3 mpnst of the brachcial plexus. I was diagnosed in 6/09...underwent radiation treatments over the summer i had only 3 image guided treatments and had a 50% reduction. I was all set for surgery when the day before the dr told me that they would not be able to perform the surgery due to the placement being so close to the vessels. Now i am going to have Chemo starting the week of the 15th.
by misselaineous78 on Thu Dec 16, 2010 12:21 AM
I hope that this page is still being monitered by others with MPNST. I too am an MPNST SURVIVOR!!! I was diagnosed in August 2009 with stage III (T2 N1) MPNST at age 31. I do not have the NF1 gene that many with MPNST do have. I had 12 inches of colon removed they found cancer cells in 1 of the 16 lymph nodes removed and the surgeon feels confident that he got extremely good margins in surgery. I underwent extremely aggressive chemo, a combination of Infosfamide, Vincristine, and Actinomycin from September of 2009-March 31, 2010. I was not a candidate for radiation because of the location of my tumor. By the grace of God, power of prayer, and strong support of family and friends, and last but not least great Dr.'s and nurses at Christ Hospital Cancer Center, I am in remission. I had a CT scan 2 weeks ago and Dr. appt last week and everything is still looking great. WOW what a tough road but I just want to tell anyone that reads this thats dealing with, or has ever had to deal with this awful illness with so many unknowns to have faith and trust in God. This illness CAN be beat!!!!!!!
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