mixopapillary ependymoma treatments/trials?

[erinmz]

My husband has recently been diagnosed with multiple recurrent ependymomas of the spinal cord, at this time they have not found any within his brain.  He had one resectioned and treated with radiation in 2004. In early February his doctor discovered that there are numerous lesions on his spinal cord (again).  They removed a large tumor about 2 weeks ago that was threatening his spinal cord, and a few smaller ones while they were "in there".  The doctors are reccommending radiation (again) but because of the number and location of the tumors, the radiation will need to be very aggressive.  We are very interested in any other courses of treatment that anyone may know of.  There is also the possibility of another surgery on a tumor located at the base of his spine, but it is entangled in nerves and risky.
Any info would be appreciated,
erin

[francisg]

so, that is what they told me that i have 'mixo-papillary ependymoma'. the surgeon said at the time that i had it growing for at least 16years. in march 2000 i had the operation and 70% was removed. i had radiotherapy for a whole month. my tumor extended from L1 to S1, something big. since then, my pain decreased considerably and i can proceed with my my part-time lecturing. i am 64 years.
francis malta

[Fyrzout]

Hi Erin,

My name is John, and I've been dealing with my ependymomas for over 10 years now.  I was diagnosed in 1998, and have had spinal tumors removed surgically twice.  I've had radiotherapy and oral chemotherapy many times over the past 10 years, with some success.  But they keep coming back for me, too.  I currently have 5 in my spine (including one wrapped around the nerves in the sacrum area) plus 5 more in my brain, where the cancer spread after several years.  For over two years now, I've been taking an oral chemotherapy drug called VP-16 (etoposide) on a daily two-weeks-on, two-weeks-off schedule.  This has controlled the growth of my tumors during that time, although the sacrum tumor required radiation in January of this year.  I opted for the radiation as opposed to surgery, due to the risk of becoming paralyzed.  My doctor pretty much guarateed paralysis if I had the risky surgery, so the "chance" of paralysis due to additional radiation was a better bet in my case.  I'm fortunate, because my spine has a high tolerance to radiation-you (and most doctors) would not believe how much radiation I've had over the years to that area of my spine, and I'm still able to walk (with a few balance issues here and there).  Anyway, I am NOT a doctor, and each person's situation is different, so don't be afraid to get a second or third opinion on your husband's treatment options.  If, after consideration, your husband opts for radiotherapy, ask your doctors about doing it concurrent with Temodar (temolozimide).  I took that with my last radiotherapy.  Supposedly it is a radiosensitizer (meaning it makes the tumor cells more suceptible to radiation.  Good luck to you!  John