Oncology (General Cancer)/Spindle Cell / Meningeal Sarcoma of Brain
My 17 years old son is currently taking chemo; he has completed 4 of 6 treatments (ifos and doxo). Oct of last year 2011 we were told that he has meningeal sarcoma (rare no info) but some paperwork say left tempural spindle cell sarcoma. Why two names? . The tumor was removed (size of golf ball) 8 weeks later it was back same place. It was removed again. One week to recover thenoff to MD Anderson for Proton Beam therapy for 6 weeks 5 times per week. 3 weeks into treatment MRI showed it coming back. We did not stop treatment. 4 weeks later clear MRI. 3 months later back bigger and causing pressure doc worrried about brain stem. Tumor removed again. Doc said he would not remove it again unless we agreed to have part of left lobe removed. Question - Would this work? What other chemo could he take? Asking because I'm afraid it's coming back!
I'm sorry for what you are going through. First, the words "meningeal sarcoma" tell me he has a sarcoma (a kind of tumor) growing on the meninges of the brain. (Meninges refers to the lining of the brain). "Temporal spindle cell sarcoma" tells me that the tumor is located in the temporal region of the brain (that's the part under the "temples") and that it is a specific kind of sarcoma, where the tumor cells look spindle-shaped under the microscope. So these names are not contradicting each other. It sounds like he has a very aggressive tumor. If the tumor does grow back. you will be faced with two choices, either let it grow, in which case death will follow, or go through some pretty terrible surgery, in which case there will be loss of brain tissue, possibly resulting in loss of function, changes in personality, etc, but still no guarantee that there will be a cure. I don't know of any other drugs that would cure him; in fact the ifo and doxo won't either. However, Gemcitibine has been known to work in some of these tumors for a while. Another option would be a clinical trial at MDAnderson, where they are exploring biological therapies and other innnovative ideas. You might contact the sarcoma division or the neurooncology division. If my choice was between nothing and having the surgery (and there were no other options) I guess I'd choose the surgery. Some people would rather not face the rest of their lives with loss of function of the degree that this might entail. I hope this answers your questions, and please let me know how things are going.