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Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)
Spine Health | Last Active: May 13, 2023 | Replies (43)Comment receiving replies
<p>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.</p>
Replies to "I have a granddaughter who is NF-1 (neurofibromatosis -1) and has had a cancerous nerve sheath..."
Meli,
I'm so sorry your daughter has to go through this. I have Schwannomatosis, and my tumors have all been on the nerve roots at L4, L5, S1, and S2. Has she been to Mayo or any of the NF clinics?
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.
@meli58 i hope your granddaughter will pass through this and she will pass through this i trust that she is strong. I am diagnosed by NF1 and i had a brain tumor and it was removed but it was benign but my case was different although it was benign but it was so threatening for me and i survived. I believe that she will pass through this. I want to ask did she try chemotherapy? And about your daughter who have another 2 children with NF1 did you know the tumors that they have are benign or not? Are you considering any treatment for them also?
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Welcome to Connect, @meli58.
I'd like to connect you with @nfrunner @painwarrior who live with NF-1, as well as @stephbusta and @jontan who's children have NF-1. I can only imagine how devastated and worried your daughter must be, and you, too.
I'm also going to tag @mrsjoanie @ihatediabetes @lparr00 and @fernandavidigal on your message. While their children don't have neurofibromatosis, they know first hand what it is like to parent children with rare conditions.
Meli, do you live close to your daughter?