MPNST (Malignant pheriphial Nerve sheath tumor

kphillips2000 Member Posts: 1 Member
edited April 24 in Sarcoma #1

Looking for people who have MPNST due to NF1(Neurofibromatosis type 1) I’m 23 and my cancerous tumor is back after surgery radiation and chemo. Had surgery before we knew it was cancerous in 2021 and dr had gotten it all. Did radiation and 5 weeks of chemo 5days a week 8-9hrs a day in2022. It’s 2023 and it’s back and was lighting up a lot on the PET scan. Apparently this is a fast growing cancer and dr doesn’t know what will keep it from growing again and again. I need support.


  • taminator28
    taminator28 Member Posts: 3 Member

    My son (14 years old) was diagnosed Sept. 11th of this year with a MPNST that is caused by NF1 as well. His is in his neck and upper chest area. They are currently giving him chemo treatments which is every 21 days. It consists of 3 nights in a hospital, first 2 nights infusions of doxorubicin and ifosfamide chemo, the last night is just ifosfamide. They have scheduled 4 chemo sessions and 25 radiation treatments.

    He started radiation as well so with the next scheduled chemo he will only be getting ifosfamide since the doxorubicin makes symptoms worse when mixing with radiation.

    So far he's had 2 chemo sessions and 15 radiation, last week he got very sick. Pneumonia and parts of his lungs had collapsed. He was in the PICU for 5 days, but during that time we learned from a CT scan that the tumor is shrinking.

    In early December he has mri and more ct scans, they will check to see if it can be removed. If it can, they will remove it and then he'll have to do 2 more chemo stays and 11 more radiation treatments.

    This is just the beginning for us, I do hope you are ok and keeping your head up. If you see this comment please reply.