Does this happen to you?

Hi everyone, wife of hubby (57) Steve - GBM stage iv  dx 11/07 - here.  I swore I wouldn't get involved with support groups b/c I didn't want to focus on cancer, but when I happened on this site and read the entries...I began to cry tears of relief.  I guess I've kept a stiff upper lip for almost two years, and I now admit that I needed a community to share.  

While Steve is tumor free after surgery, radiation, and chemo through Duke, and while he's back to work as a full-time paramedic (miracle), he's been having dull headaches and some slurred speech that sends adrenaline coursing thru my veins - feeling just like the day he was diagnosed. Docs at Duke say he might need a seizure med, and that his episodes show that he's overdoing things...however...I can't shake the fear that we're headed backward.

Has anyone else experienced this?  And...am I faithless for worrying?

God bless you all, and I promise not to try to go it alone anymore.

jan

Hi Jan, welcome to our world.  I'm relating with your message, mainly because I did like you, went it alone for the first 2 years, only getting on this site about 6 months ago.  I'm learning something on a regular basis now.  Sometimes I can share what I know too.  My husband is also a 58 year old who was dx in 07, but he was left with deficits of his left side, so he can't work anymore, but otherwise has done ok.  All MRIs have been stable, all his treatment have been over for a year, and the reason I finally came to a site like this was because 'I' couldn't understand why we still had issues that came and went, after so long of being stable. 

I don't know how long ago your husband had his last MRI, but assuming it was stable, recurrence ruled out, then seizures might be the cause of his new symptoms.  The effects of radiation can be ongoing for a few years.  In fact, although I already knew that, I just had a doctor remind me of it this morning.  My husband has some hormone imbalances, and the doc we saw this morning wants to do testing to see if there is more damage to the pituitary.  Also I notice from time to time the change in his cognitive ability.  He is ok, but his memory losses are greater when he is tired, stressed, worried and his ability to problem solve is not what it was a year ago, things that only a wife or close friend would notice. 

I guess we are really lucky to have our husbands here with us, but we learn to live with fear, expect the ups and downs to continue, and as our husbands change, our lifestyle changes.  I'm surprised he can continue to do a job like paramedic, it is physically and emotionally challenging, so it might be just that he is overdoing.  Stay with us, keep up the good fight, let us know how you are doing.

Donna L

God bless you Donna!

I have noticed that his job takes too much out of him, and most people can't believe he's still doing it.  He is just not ready to give it up, and he's capable as long as the young guys help with the lifting.  He does have memory issues and can't remember words for things, but with a patient, he is sharp and everyone says he's on autopilot - go figure.

Also, docs tested his hormones, and his testosterone was down b/c his pituitary was, as they said, "fried in radiation".  He's been on the patch for about 4 months and has gotten some energy back, but he has trouble regulating his temp.  It seems to be low all the time and he complains about being cold. Let me know how your hubby makes out with the thyroid - regulating it will hopefully bring some relief.

I appreciate your encouragement.  Our friend w/an inoperable GBM passed away last week after a 33 month battle, and it hit home just how fragile and precious life is.  I knew I needed a community of those who understand.  God bless you, and I hope you keep in touch.

jan

My husband also had some episodes of slight confusion followed by exhaustion. My initial reaction was also to think that the "other shoe" was about to drop. He continued to have these episodes occasionally, between clear MRI's, often when he was under stress or tired. It took 2 years for his doctor to realize that he was having partial seizures. The local neurologist looked shocked when we nearly jumped for joy when he diagnosed my husband with epilepsy. He's been on Keppra for a few months now and doing fine! 

Thank you...I think we need to have that talk with our neurologist.  I think they might be mini seizures as occasionally his mouth droops as well.

God bless.

Jan can you share what treatments your Husband had at Duke, I am considering taking my son there,,glad to hear he is tumor free for this long..

Best to you both ! Diana

my son Chris dx gbm 11/08