mpnst

fenwayfan
fenwayfan Member Posts: 6
edited March 2014 in Brain Cancer #1
Hello Everyone,
My son who was diagnosed with brain cancer in 2004 died this past July 2006. His tumor was called a
Malignant peripheral nerve sheath tumor, or mpnst for short. His was very rare & from what the doctor said he was only the 8th documented case in the country. He never complained, he was never in any pain &his death shocked everyone including the doctors. Some days I don't think I can go on without him. He was my hero. Although he was going throuch radiation & chemo, he was also attending school full time & was inducted into Phi Theta Kappa, making the presidents list all through college. He never complained about his 'sickness' & looking at him one would never know as he looked like the picture of health. I welcome anybody to comment on my letter & I wish all of you the very best! Ann

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  • Unknown
    Unknown
    #2
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  • fenwayfan
    fenwayfan Member Posts: 6
    #3
    unknown said:

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    Thank you so very much for your kind words about my hero, Matthew! I am trying very hard to set uo some kind of memorial for my son through the hospital where he was. If you or anybody have any ideas I would love to hear them. Since he was a big computer & video game buff ,I am going to be writing to all companies & see if they will donate games or a computer to the hospital. I will have many letters from his doctors & care givers. Thank you for listening to me..Ann
  • nursemom
    nursemom Member Posts: 1
    #4
    DEAR FENWAYFAN AND ANYONE ELSE WHO MAY BE ABLE TO HELP ME. MY SON,ALSO MATT, WAS JUST DIAGNOSED WITH A MAL. PERIPHERAL NERVE SHEATH BRAIN TUMOR IN NOVEMBER. IT TOOK MANY WEEKS FOR PATHOLOGISTS AT JOHNS HOPKINS AND SLOAN KETTERING TO DIAGNOSE. HE HAD THE TUMOR TOTALLY RESECTED AND WILL BE STARTING RADIATION NEXT WK. HE STILL HAS COMPLICATIONS RELATED TO HIS SPEECH AND SWALLOWING DUE TO WHERE THE TUMOR WAS LOCATED.(AT THE CP ANGLE).THE ONCOLOGIST AND THE RADIATION ONC. STATE THERE ISN'T MUCH WRITTEN UP ABOUT THIS DISEASE. IF YOU HAVE ANY INFO.PLEASE LET ME KNOW. MY SON IS 17 YRS. OLD. I ,TOO, AM A BREAST CANCER SURVIVOR. I WAS 35 AND I HAVE THE BRCA 2 GENE.
  • KellyLynne
    KellyLynne Member Posts: 5
    #5
    nursemom said:

    DEAR FENWAYFAN AND ANYONE ELSE WHO MAY BE ABLE TO HELP ME. MY SON,ALSO MATT, WAS JUST DIAGNOSED WITH A MAL. PERIPHERAL NERVE SHEATH BRAIN TUMOR IN NOVEMBER. IT TOOK MANY WEEKS FOR PATHOLOGISTS AT JOHNS HOPKINS AND SLOAN KETTERING TO DIAGNOSE. HE HAD THE TUMOR TOTALLY RESECTED AND WILL BE STARTING RADIATION NEXT WK. HE STILL HAS COMPLICATIONS RELATED TO HIS SPEECH AND SWALLOWING DUE TO WHERE THE TUMOR WAS LOCATED.(AT THE CP ANGLE).THE ONCOLOGIST AND THE RADIATION ONC. STATE THERE ISN'T MUCH WRITTEN UP ABOUT THIS DISEASE. IF YOU HAVE ANY INFO.PLEASE LET ME KNOW. MY SON IS 17 YRS. OLD. I ,TOO, AM A BREAST CANCER SURVIVOR. I WAS 35 AND I HAVE THE BRCA 2 GENE.

    (NURSEMOM)
    Hi my names Kelly, I read your posts and I was just wondering where your sons tumor is located? i was diagnosed with a malignant peripheral nerve sheath tumor in my brain on my left trigeminal nerve when i was 19. i am now 20 and i had the tumor removed along with 66 lymphnodes in my neck that the cancer had traveled to. i went through chemo and radiation and my scans so far are clean. if you have any questions i'd be more than happy to help you
  • Unknown
    Unknown
    #6
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