I have a 7 year old son with suspected NF-1. He has optic nerve gliomas and tumors around the optic chaism. He was on chemo for 1.5 years-tumor got a lot smaller.Now, after 1.5years off chemo,tumor appears alittle larger,cysts around the tumor growing pretty fast. The chemo Dr. said a different chemo would likely work again. Another Dr. said radiation would likely be our best bet. I know he is going to need radiation,but since they will radiate most of his brain,I thought it might be best if we could get a couple of more years out of the chemo first. His eye sight has worsened slightly in the past couple of years even when the tumor shrank. He has 70% in one eye, 5% in the other,no other symtoms. He handled the first round of chemo very well. Could you give me some pros and cons on the radiation treatment.
Sorry to hear about your son. The usual optic glioma in NF-1 is a pilocytic astrocytoma. There are several issues. The first is whether another round of the same chemotherapy might not be work on the tumor. The next question would be if phenyacetate might be warranted at this point before radiation. Radiation would be coned down to isolate the area of the optic glioma and would not be whole brain radiation. Pilocytic astrocytomas are sensitive to radiation. I would make a full check concerning alternatives to radiation, at this point. Go on the NF-1 internet site and see what others have done in your situation. I think I might favor phenyacetate before radiation. Ask your oncologist and pediatric neurologist to ask around and see what others have done.
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