Well, I had my first followup MRI after the radiation. Many of the tumors have shrunk noticeably! I had been warned that it was very likely that no change would be evident since the tumor cells would take time to die, and would leave a fossil behind. In addition, my brain was scanned, and no sign of the ependymoma was seen there.
If you've had exposure to the world of cancer, you might note that such a prompt response to radiation (or chemo) is not unmitigated good news. Standard treatments for tumors damage the DNA (preferentially of the tumors relative to the rest of me) but the cell doesn't die until it tries to divide. Prompt response to radiation means the tumor cells divide rapidly, means the tumors are rapidly growing. This was somewhat anticipated by the doctors. Adult ependymoma does not normally respond to chemo, but the doctor heading NIH's Neuro-oncology branch recommended that I try a relatively new drug that is effective for nervous system tumors. If the tumor cells are vulnerable, why not hit them again? It is an aggressive treatment plan with relatively little downside. The drug-Temodar or Temozolomide-is very effective at crossing the brain-blood barrier, and has relatively mild side-effects (it IS a cyto-toxin). A cycle consists of taking pills 5 nights in a row every month; I just completed the first set of treatments. Nausea is the major immediate side-effect, and therefore an anti-nausea pill accompanies the treatment. The treatment lowers blood counts on a 1-2 week time scale, so I will have a blood test every 2 weeks. As long as the blood crits are acceptable, I will be able to travel and live life normally.
Through all this I feel fine. I get little hints of the tumors, but no pain, and no loss of function or sensation. Every time I see a doctor my legs are poked and prodded, and I have to show that I can still push up or down with my legs. I still tire easily, a result of the radiation.
When I saw him after my MRI, the head of NIH's Neuro-oncology branch was clearly surprised I was not a basket case after the radiation; he of course attributed it to the skill of the radiation oncologist he brought with him from Boston. The doctors have been telling us that some of the effects of the radiation will come and go for months. My taste buds returned about 10 days after my last radiation treatment. The hair loss peaked about a week ago, and now I have stubble in some very funny places.