oligodendrogliom

Raani01 said:

Knowledge is power in most of the time
Hi,
As my husband has been dealing with Oligodendroglioma (he was diagnosed in 1997 with grade 1), now we are faced with not much treatment options ( you may look in to my previous posts).The interesting thing is that his grade changed to 3 in 2008. I wonder all the problems he has now is due to the radiation 1998 and the chemo after that?! (One may see a good thing to get diagnosed later stage to start radiation!).We were told oligodendroglioma was the best one if you ever get a brain tumor as it is known to grow slowly. You should find comfort in it as your husband is doing well now and you can hope that the treatments will keep the tumor at bay for a long time. My husband has been doing well, working until the tumor started to resist the chemo treatments in the last year. Decatron does different things to different people also. Please learn from your doctor and from this site and other resources about doses and the importance of knowing how to tapering off of it.

Anyway, from my experiences, I would recommend to try to live normal as a family, appreciate and enjoy your husband's goodness (ignore the bad ones!), intentionally try to do things to bring the family closer; do things that display caring and love between mom, dad, and the kids. This feeling of "we all care and love each other" will help tremendously in difficult times (as it is a good thing in good times also:-).

Meantime, start a journal writing down events, ask questions to dr about all the different options, get a second opinion, and contact your dr when you become concern with behaviors (You can request MRIs also)etc.etc.
So, I still believe knowledge is power, so we will have the comfort in knowing we have done everything humanly possible, but sometimes it overwhelms you and worries you much you wonder ignorance is better.(My husband never tried to find much about brain tumor or worried, he trusted his doctor and followed the treatments. He never liked to talk about his tumor and acted like everything is in control).

Hope my experience helps you in some way of your thinking process. The mystery of brain tumor is that each person reacts to the treatment so differently, you can not predict anything.Good things can also happen; having brain tumor in the family, we will suddenly learn to appreciate little things and we overlooked before:-)

Take Care
Raani

BRADTB3030 said:

Oligodendraglioma 3
Hello , this is my first time making contact with anyone with the same issues that I have. I just want to let you now that I have had this same issues since 2004.I had a tumor removed in 04 and had chemo treatment after. I just had a return tumor removed in january of this year. I was out of work for 2.5 weeks. Everyone was amazed that I was back that fast. I am currently going through chemo and all seems to be going good. back in 04 when I had the first tumor I was looking up the survival time on the interenet and the best I could find was aproximately 3 years at the best. I am over 8 years now and things are going well. I just dont want anyone to go by what they read on the internet. Just keep in mind you can kick its butt. Take care.