I'm a long term survivor! =)
I just want to offer hope to those who have an oligodendroglioma. I was diagnosed in 1997, grade II. I did Temodar in 2013 and unfortunately, I am going through chemo once more. (No radiation yet).
What was incredibly frustrating in 2012 was that 4 neurologists didn't really believe me in that I was having so many bad seizures even though one of them was a 4 hour grand mal and I was hospitalized. Two of the doctors even had the gaul to tell me to go see a shrink!!! I was devastated and humiliated. Thank God I found a great doctor at Mayo Clinic who confirmed my seizures were real, even though they were not showing up on EEG's. He said my tumor is too deep and coming from too small of an area for a scalp EEG to pick them up.
It's scary enough to deal with something so devastating but to not get help was incredibly frustrating. The seizures still terrify me when I stop breathing, can't talk, and there have been times when I had food and was about to drink. How many people live with fear of eating or drinking? I can no longer drive either and it's frustrating to loose my independence.
I have the co-deleted 1p 19q type tumor. My surgeon gave me 8 yrs (biopsy only), my first oncologist gave me 15 yrs and it's been almost 20 yrs and I'm still fully functioning but I'm starting to get weakness on my left side.
This has been the worse thing that has ever happened to me and I feel so overwhelmed with fear at times. The only good thing that has become of this nightmare is that I found out quick what really matters: my faith in God, family and friends.
Brain cancer really sucks because It's a triple whammy unlike other cancers---seizures, loss of function and pain. I have other serious medical problems too so it is very hard to cope with all that is on my plate. But I want others to know that there ARE long time survivors like me. I'm doing medical cannabis to hopefully help kill this tumor or extend my life. It sure has helped me with depression, seizures and anxiety so I highly recommend it. I've always had a good diet, don't smoke and exercise and take multivitamins, etc so maybe that is why I'm a long term survivor along with answered prayers.
Also I recommend Proton Beam radiation as it does less collateral damage and is better at targeting the tumor and has less side effects.
I hope my story has helped someone feel more optimistic about possible long term survival. =)