Newbie with oligodendroglioma

chiligrl

I have just finished 6 weeks of radiation and chemo (Temodar) for a Grade II oligo. I also had two surgeries. I am still on Dilantin and just finished weaning off of Decadron. I still get fatigued easily and my legs are very weak. I am also emotional. My biggest concern at this point is my vision, it seems to unfocus and also my right eye vision gets kinda twitchy. Does anyone know it that is normal or if I should call my oncologists? Also, it is really nice to find a place to talk to people going thru the same thing!!

barbie204

chiligirl, your case sounds very much like my daughter's, and I'd like to stay in touch with you, since your treatment is so much ahead of hers. She just changed from Dilantin to Demakote, and will start Temador and radiation soon. Would you mind if I stayed in touch with you?

jen13

I also have a grade 2 oligo but mine is an oligoastrocytoma. I went through the other chemo the three drug one. I can't remember off the top of my head what it's called. I think that you should tell your oncologist anything that is different just so they know. It may be nothing or it may be something that they can fix. I was recently taken off dilantin and so happy to be off that. I was diagnosed about 6 years ago and had surgery then. I was in remision for about 4 1/2 years then relapsed and did the chemo for 7 months but no radiation. I'm 26 now and doing well and would love to talk to you sometime. Feel free to email me if you want to chat sometime...jcrompto@indiana.edu

Unknown

hi chiligirl, i was diagnosed in1991 with the same brain cancer as you. i suggest anything you experience while undergoing treatmen should be shared with your oncologist! especially if you are concerned aboutsomething. the tiredness gets less and less, hang in there!

chiligrl

barbie204 said:

chiligirl, your case sounds very much like my daughter's, and I'd like to stay in touch with you, since your treatment is so much ahead of hers. She just changed from Dilantin to Demakote, and will start Temador and radiation soon. Would you mind if I stayed in touch with you?

Sure, we can stay in touch. I will be glad to help in any way I can. I went for a check up yesterday and the Doc seemed to think my problems are dilantin related. They checked my level and will hopefully adjust it! You can reach me at wed8@excite.com for now. I will be changing my addy soon but will let you know. Good luck to you and your daughter!!!

chiligrl

barbie204 said:

chiligirl, your case sounds very much like my daughter's, and I'd like to stay in touch with you, since your treatment is so much ahead of hers. She just changed from Dilantin to Demakote, and will start Temador and radiation soon. Would you mind if I stayed in touch with you?

Sure, we can stay in touch. I will be glad to help in any way I can. I went for a check up yesterday and the Doc seemed to think my problems are dilantin related. They checked my level and will hopefully adjust it! You can reach me at wed8@excite.com for now. I will be changing my addy soon but will let you know. Good luck to you and your daughter!!!

blueOlivia

unknown said:

hi chiligirl, i was diagnosed in1991 with the same brain cancer as you. i suggest anything you experience while undergoing treatmen should be shared with your oncologist! especially if you are concerned aboutsomething. the tiredness gets less and less, hang in there!

esyboo....you were dx in 91 with an Oligo? Did you have rads? How old were you when you were dx?
How often do you go to the doctor for MRI?

tylerbeam1

I have a AO grade III. I have had two cranie's and am in the middle of several treatments. I have four months of Temodar under my belt, in the middle of raditation and then plan to take four months of CCNU followed by 12 months of Tamoxifen. I am 27 and in good shape so everything has been well tolerated except the fatigue...blah.

I know some of you are on seizure meds and that can be a pain too. I take 3000mg of Keppra, 700mg of Lamictal and 500mg of Depakote everyday. Sounds fun! The tumor has not shrunk, but more inportantly is has not grown. Everyone out there, stay strong!!