Feb 13, 2012 - 8:57 pm
I was diagnosed with a large, inoperable fibrillary astrocytoma last summer. I did 5 1/2 weeks of radiation (5 days on) and temodar (7 days a week), month off, then started my 12 months of 5on/23off rotation of temodar. I tolerated my rad/temodar schedule well, living away from home by myself to have treatment (single mom), but when I took the higher dose on the 5/28 schedule I became very sick. I had to be hospitalized has my counts were dangerously low. After two months and some serious ethical conversations with my oncologist, we decided it was best for me to stop. My counts have not been "normal" since.
I am 4 months out from stopping all treatment. I have a "pins and needles" feeling in my entire body. It started in my feet and hands and has progressed to almost everywhere. Over the last two weeks I have lost the feeling in my tongue and lips. I sometimes have difficulty swallowing. Has anyone had this happen after radiation/temodar?
One other weird thing - I have red blotches when I wake up (maybe unrelated?)that go away once I am up and about.