Looking for some answers for Grade 4 Glioblastoma

August 12, 2009 I had surgery on 1 of 2 brain tumors which I found out a week later were grade 4 Gliobastoma. The surgeon got 99 % of the 1 tumor but the other is inoperable due to it's location. During a meeting with the surgeon, I was advised that I would probably be back in for surgery every year. The next day, my family and I were told by the radiation and cancer doctors that I had 14 months to live, 2 years if radiation and chemo went well.

I finished the 6 week radiation and the 42 day Temador 3 weeks ago and am slowly weaning myself off the Decadron. I have a MRI and follow up with the doctors in November. The problem I'm having is during treatments, I was fine with the exception of a day here and there. Since I've been off the treatments I seem to be going backwards. Headaches, speech problems, numbness, balance issues, all leading back to my original symptoms that started all this.

Has anyone else had this ? Does it get worse before it gets better ? Is it possible to get off this rotten steroid without side effects ?

Robert, so sorry about the GBM. Hopefully things are working, even if doesn't feel very good. The radiation seems like it might be the cause of the issues you named. Take a look at the American Brain Tumor Association webpage:

http://www.abta.org/index.cfm?contentid=105

and I think you'll see what is pretty typical. Sure was for my son. The foggy thing does get better.... but they say on that website that it takes about 8-10 weeks (you are at 3 weeks) for the worst of it to pass. Did you have whole head radiation for the tumor that was inoperable? If so, yup, same as Andy, and that is no fun. But it worked for him and I hope it will for you too.

All the best,

Sarah

mom of Andy 27 dx gbm/pnet 1/09

Robert,

I, too, have heard that radiation can cause some of the symptoms that may mimic the GBM symptoms.  Radiation can cause swelling.  In regards to your doctors' prediction of your life expectancy.....they don't really know for sure about any GBM patient. The average is 12 - 14 months but, honestly, each patient is an individual so take their prognosis with a grain of salt. I hate when doctors give that prognosis when they truly cannot predict the future. Be strong, think positive, eat well, exercise in moderation (walks are nice) and get plenty of rest so your body can heal.  You could be one of the many longterm survivors out there -- and there are many! I will keep you in my prayers. Hang in there!!!!

Holly

Husband dx GBM IV February '09

I experienced many of the same symptoms I originally presented with. Yes, it could be the radiation/temodar combo, which is a debilitating 42 days, but it could also very lkely be the decadron withdrawal. Have a nurse practicioner look at your taper schedule. Maybe they can tweak it to get you through with a little less pain.

As for the prognosis, I was given 2-3 years at first and--er00that was just two years ago. I have 2 recurrences this year and the chemo options are thinning out, so they just might be right. I try not to think about it, just concentrate on how I feel today. Really, that's all we can do.

Stay in touch, Mary

I have wondered how the doctors or nurses can say 12 to 14 months when they can't tell me if I have had the tumor for one month or 30 years. Mine was found July 26, 08, GBM 4 on left side, and removed Aug. 11, 08. No one knows when it started. I had bad headaches in that spot for 30 years and my 32 years old daughter remembers me putting glasses of ice against my head in that spot when she was young. We live until the Lord is ready for us. My MRI's have shown no new growth and I live each day for the Lord, my family and me. My 12 to 14 are up and I feel I am still going strong. My wife and I left for a trip 2 1/2 weeks ago and still have the rest of the week before we head home for my next MRI. Enjoy life all you can and don't worry about how many days or weeks they give you. They don't always know. When the Lord is ready, He will let you know. LIVE LIFE.