GBM desires communication with another GBM

My husband Bob was diagnosed on Feb 22, 2009: Grade 4 GBM, inoperable 4.1 x 1.6 x 1.9cm tumor at the basil ganglia and another 3.2 (plumb shape) at the frontal temporal lobe (cystic component 3cm), small satellite enhancing nodules affected

Radiation began on Thursday, March 12 to 40% of his brain, 5 days a week for 6 weeks. Temodar (oral chemotherapy) for 12 months (five days on 23 days off). MRI results on May 28, July 28 and Sept 29 indicate his tumors are stable. He continues to have side effect from the tumor, steroid and radiation, but he has no new growth.

He is on 2mg decadron a day, and is very tired, and unable to work.  He has asked if he could discuss his condition with other GBM patients.  Specifically he wants to know how others feel, if you ever regain your energy, discuss symptoms, etc.

Please let me know.

thanks!

Even though he is tired it sounds like he's doing very well right now with his tumor not having any growth and that's wonderful!  

Mom's tumor was large and involved two lobes already so I know that having to radiate such a larger spot in the brain probably certainly adds to the lengthy recovery time.  Unfortunately it's often the long term effects of the radiation and chemo that wear you down even when the tumors are under control.  I read about so many people who have been able to carry on regular working lives following this but both my parents weren't.  I am guessing some people react much differently and possibly your husband might be more like mine in bouncing back much more slowly.

I still read the posts here for the encouragement.  It always give me such hope that maybe tomorrow will be the day she starts to get her energy back.

My mom is on 16 mg decadron a day right now.  We have not been able to wean her down yet...every time we try she has a set back.  I'm glad to hear that he is only on 2 mg.  I HATE Decadron.  It has so many side effects and drains a person.  I will be so thankful to get her down some.

Feel free to contact me...I certainly do not have answers but I have had two parents with GBM so unfortunately is has become a "new normal" in our home.

Good luck!

Cris

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I've been battling GBM for over 2 years and have been up and down the rollercoaster ride a few times. He is free to contact me at any time to discuss anything.

Mary

Hi...stop by our Caring Bridge site and say hi...remember to leave your email.  We've definitely been dealing with fatigue and work...you'll see when you visit.

http://www.caringbridge.org/visit/stevecalloway

God bless, janni (wife of Steve gbm dx 11/07)