GBM Spreads To "Pons" Area of Brain . . . Help!

My husband was diagnosed in June 2008 with GBM, had surgery which removed 85 to 90% of the tumor, had 30 treatments of radiation, then almost a year of chemo with Avastin and CPT-11. His MRIs had been "stable" and the doctor was pleased, but last week's MRI shows growth and infiltration in the "pons" area of the brain. Our oncologist is conferring with our neurosurgeon to see if he'll perform another surgery, which he probably will not because the "pons" area is so risky. Has anyone else dealt with GBM spreading to the "pons"?

My husband had to retire from his job because he just wasn't able to do anything. He's been steadily declining, especially in the past 6 weeks with "chemo brain", practically unable to walk at all, doesn't recognize me (his wife of 31 years) a lot of the time, etc. My husband is 55 years old (his birthday was yesterday, Nov. 5), has always been active and physically fit. I hate this d*** GBM monster! It is taking away the man and life I loved.

If anyone has experience with the "pons" of the brain, I would appreciate any advice/comments. Thanks for listening . . . I'm sorry you're in this boat with me, but I appreciate being able to vent my frustrations and seek advice.

Debbie

Husband diagnosed GBM IV June 9, 2008

Oh Debbie, this sounds scary. And it must be heartbreaking for you to not be recognized.

I had to look it up. "The pons (sometimes pons Varolii after Costanzo Varolio) is a structure located on the brain stem... above the medulla, below the midbrain, and anterior to the cerebellum. The pons regulates relaxation, and is associated with the sense of higher purpose."

Between the fact that each person's tumor affects a slightly different combination of functions, and the fact that some tumors respond to one thing and some to another, it must be really hard for the doctors too. They just want to keep everyone ticking until there's a cure, but they know how rough it going to be on all of us. *sob* 

 I hope that there is something they can do.  Meanwhile keep breathing, keep loving, keep talking to him. Don't waste any time, you know? Say all the things you want to say to him.

Courage and TLC to you ~
Sarah

mother of Andy 27 dx gbm/pnet 1/09

Oh, such devastating news for you. I don't know much but know that the pons area also has a lot to do with motor coordination and the intake of information.

 I starting having left hadn and foot numbness and weakness last week. An enhancement has shown up on my last mri, near the original tumor site, which was occipital/parietal. My guess would be it's moved more toward the parietal, which also controls some motor function. Anyway, enough about me. My point was they decided to put me on a relatively low dose of decadron to stop the weakness from worsensing until something works to shrink the tumor. Is your husband on decadron at this time? I hate the d...drug, but sometimes it's necesarrry to keep us up and about.

I wish I was of more help. Hopefully someone will post who's been there. My heart goes out to you to keep up the good fight.

On Nov 07, 2009 3:08 AM I_Love_Jack wrote:

My husband was diagnosed in June 2008 with GBM, had surgery which removed 85 to 90% of the tumor, had 30 treatments of radiation, then almost a year of chemo with Avastin and CPT-11. His MRIs had been "stable" and the doctor was pleased, but last week's MRI shows growth and infiltration in the "pons" area of the brain. Our oncologist is conferring with our neurosurgeon to see if he'll perform another surgery, which he probably will not because the "pons" area is so risky. Has anyone else dealt with GBM spreading to the "pons"?

My husband had to retire from his job because he just wasn't able to do anything. He's been steadily declining, especially in the past 6 weeks with "chemo brain", practically unable to walk at all, doesn't recognize me (his wife of 31 years) a lot of the time, etc. My husband is 55 years old (his birthday was yesterday, Nov. 5), has always been active and physically fit. I hate this d*** GBM monster! It is taking away the man and life I loved.

If anyone has experience with the "pons" of the brain, I would appreciate any advice/comments. Thanks for listening . . . I'm sorry you're in this boat with me, but I appreciate being able to vent my frustrations and seek advice.

Debbie

Husband diagnosed GBM IV June 9, 2008

Just want you to know I am thinking about you, Debbie. My husband is also 55 (will be 56 in January). Boy, you married young! We will be married 19 years in February (our anniversary is 10 days before the diagnosis). I don't have any answers about the pons area of the brain but wanted to touch base and see how you are holding up since you posted this message on Friday.

Holly

Husband dx GBM IV 2/09