oligodendroglioma

• By PennyL
• Reply 3497847
• October 29, 2012 at 12:36 am
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Hi Betsy,

I saw in your reply to another that you've had surgery. Do you know if they tested you for the 1p19q co-deletion while they did your biopsy? If you test positive for the deletion of those genes (which is closely associated with oligodendroglioma) then chemotherapy is likely to be effective.

I was diagnosed with a BT in January of 2007 after having a seizure. It looked to be low grade, so my doctors decided to watch and wait. My MRI in December of 2008 showed just enough new growth encroaching my motor strip that I was sent for surgery in January of 2009. They were only able to remove a small portion because it was more invasive than it had appeared on the MRI. The surgery left my right leg weakened, but I guess it might have been worse if they had let the tumor take its course. Anyway, the tumor was an oligodendroglioma II with some grade III tendencies. Fortunately, it also tested positive for the 1p19q co-deletion so I was put on Temodar (chemotherapy) for a year. My doctors discussed radiation, but we decided against it because I was likely to respond well to the chemo, and also because there was (and maybe still is) some debate in the medical world whether it was best to use radiation with chemo or wait until there was new growth as radiation is rarely used again if it's been used early on.

I think most doctors try to be as conservative as possible with low grade oligos because the treatments can sometimes cause more problems than they solve. Radiation can have long term to permanent side-effects. Temodar is often tried first because it is relatively easily tolerated (compared to other chemotherapy drugs).

I was on Temodar for a year ( pills taken for 5 days, then 28 days off, and so on) from spring 2009 to 2010. I'm happy to say that my MRI's show almost no sign of my tumor other than a little scar tissue from surgery.

I still take anticonvulsants, just in case, due to the scar tissue which can also sometimes cause seizures. But other than that, I just have a yearly MRI.

I know it's easier said than done, but try not to worry too much. I "met" others with oligodendrogliomas on another tumor board(which is no longer active) who have been living with their oligos for 10, 15, even 20+ years. That may not be typical, but it's not unusual.

Stay strong!

• By 111BETSY111
• Reply 3497993 · In reply to 3497847 by PennyL
• October 29, 2012 at 3:21 am
• Report post

thanks

i do not know on the first question regardng 1p19q .....i will know soon....just 3 weeks out...craniotomy 10".

post surgery it is ( left leg) 1/2 paralyzed.....but coming back ..... and with reduced brain swelling and steroids/anti seizure leg will come back i am sure.......plus i am a TOUGH COOKIE......gravel is my cereal....I AM 56, ALMOST 57 ( NOVEMVER 4) and am a Pilates instructor, mis diagnosed for 20 years or so.
thanks for every word...i will take this to doctor and will ask more questions.
YOU ARE FROM GOD AND ARE AND ANGEL.