Ask Kate: NF1 Optic Pathway Gliomas

Recently a mother reached out to Kate after her son was diagnosed with an Optic Pathway Glioma (OPG). In this video, Kate reviews OPGs and discusses what they are, if and when they require treatment, and what those treatments currently are.

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What is the Children's Tumor Foundation?
Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.

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[Lana-xxrv]

9.10 am thanks Kate my grandson is now going on a pill form. He had chemo he now 13

Hi Kate, I found this to be very interesting because my daughter Jessica had this condition. The doctor we were referred to by the pediatrician determined that surgery was the best option, and this was done. Post surgery Jessica had very little vision in the affected eye, and the lid drooped. (Note: this opthamologist is highly regarded and and I don't think he was in any way at fault; it was the inevitable outcome given the size of the glioma.) Sad to say, when she was age 23 Jessica developed a metastatic peripheral tumor which lead to her death 8 months after her 25th birthday.

[Breannastump]

I have optic pathway glioma what doctor to I need to see to get it removed with surgery?

[amyberry]

Also, your videos are wonderful- thank you.

[eddiewitter]

Hi I have NF1 and I have a tumor on my cross-section of my optic nerves.. Not sure if that's the same exact thing as the optic pathway but it sounds like it is... I've had it since I was a little child my eyes were always bad I remember when I was four or five the doctors had called it lazy eye... But it wasn't and nothing was discovered until I was 13 when Mr I first came out this is when they discovered that it was a tumor on my optic nerve it's more to one side than the other... I am now 50 and my eyesight has gotten slightly worse than it was originally of course this is also due to my age my eyesight decreasing... the doctor said many years ago that it was inoperable plus they wouldn't operate on it because they did not want to take the chance and making me fully blind.... at this point I am 95% blind in my right eye and 50% blind in my left eye with nearly no peripheral vision... I feel for any Mothers fathers or anybody that is dealing with the situation...

[SuperNaturalRemedy]

Hi, are you aware of any immunotherapy treatments for NF1? I have heard of dendritic cell therapy for cancer treatment, but can it help with NF1?

[havetocomment]

Hello. Is there an adult support group for patients taking koselugo? My daughter is 26 and has an inoperable ONG that started growing after 25 years.

[JThompson]

I go Dec 6th for a brain MRI it's optic glioma on the chasim please pray or good thoughts thanks

[amyberry]

My dear friend’s son was just diagnosed with NF. Will genetic testing determine which type he has?