Ogliodendroglioma

On 4/15/2008 stressedwife wrote:

I'm new to this website.  My husband was diagnosed with a ogliodendroglioma April of 2001.  He is now 38 yrs old.  June of 2001 the removed the front left lobe of brain along with tumor.  Followed by external radiation.  In our home town, we were told that chemo was not a option, we decided to go to MD Anderson for 2nd opinion.  MD ordered chemo to be done in our home town.  After completion of chemo in July 2002, the tumor did not change until July 2005, at this time we went to LSU in New Orleans and had the gamma knife performed.  Again it stood still for about another year.  August of 2006 we returned to MD Anderson to be told that they could try surgery but the risk were to great for us to take the chance.  April of 2007 started a down hill spiral.  He is still somewhat ambulatory.  We have 4 children ages 17, 15, 12, & 8.  Either I'm home or one of the two oldest children are always home with him.  The seizures are starting to increase.  We have been told we are heading toward the end.  This was a very viable man 7 yrs ago.  He worked in plant building tanks for the government.  He fished, hunt and worked on motors.  He still did some work on motors and other things until a year ago.  I was shocked on how fast things went down after 6 yrs of almost nothing.  I guess my question is does anyone out there have any other information on treatment options or just some moral support.  We live in a small community and people try to understand, but it is hard when they haven't went through it.

I am a 44-year old female diagnosed with stage III oligodendroglioma in 2002.  I actually received an original diagnosis of stage IV glioblastoma multiforme.  I was 38 at the time.  My surgeon told my sister I would need to look outside of my local community for help and my survival statistic was 10 months.  My tumor was located in right frontal lobe.  I had tumor resection, radiation and one and a half years of chemotherapy which was oral chemo called Temodar.  I received a second opinion and a second pathology review at the University of California San Francisco, where I also received this treatment plan.  I am currently on seizure medication - Keppra.  I don't know if this information helps you, but I can tell you that this was hell on my family.  I was a divorced single mother with one child.  I remember apologizing to my family often.  My sister went back to California a week after my surgery and spoke to her therapist.  Her therapist said it was an honor for my sister to be able to be a part of my life at this critical moment.  When someone is facing a major illness and the possible end of their days on earth, the caregiver can be exposed to very intimate gifts from their loved one with cancer.  I certainly didn't see my cancer as a gift to my family as their hearts were broken.  But we chose to make the most of every moment, I chose to live, and realized this illness will be a life-altering experience for me.  My heart goes out to you, your husband and your children completely.  I never forget the people who have helped me get here today.  I don't know what to offer you except to say cherish every day as much as you can and know that somehow your children will take this experience into their adult years and it will shape them and impact them in a positively profound way.  This experience will provide them with unexpected coping skills to guide them later in life... the ability to love unconditionally, find their inner strength, achieve difficult goals, view life's obstacles with an open mind, learn acceptance, value true forgiveness and give of themselves to those who have less.  As parents, we try to teach our children all the life skills necessary to guide them, we simply never expect to teach through incredibly difficult circumstances.  Embrace this time with your husband and children.  Do not prepare for death, live only for today.