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Jan 31, 2017 · NF-1 tumors (neurofibromatosis - 1) in Brain & Nervous System

Thank you for replying. I’m sorry you are also dealing with tumors. My grand-daughter’s current largest tumor is behind her knee, and she is being treated in Detroit where she lives. She just started chemo for the cancer found recently in her lungs, and I don’t think she could travel.

Jan 26, 2017 · NF-1 tumors (neurofibromatosis - 1) in Brain & Nervous System

No, she lives in Michigan, but we are in constant contact. Thank you for your help.

Jan 26, 2017 · NF-1 tumors (neurofibromatosis - 1) in Brain & Nervous System

I have a granddaughter who is NF-1 (neurofibromatosis -1) and has had a cancerous nerve sheath tumor in the past. It was removed, but she now has another larger one. She was given an experimental drug, but it failed to help her, and she now has cancerous lesions in her lungs as well. I would like to hear from anyone who also has a family member in this condition, and also to find support for my daughter who is devastated–she also has two other NF-1 children with tumors, and worries that she faces losing them all. Thank you.