glioblastoma - post resection lethargy

My Dad had surgery to remove most of his tumor 3 weeks ago, and he is in a very bad way.  I'm not sure what is normal (or if any of this is?), but he is only slightly responsive - can squeeze a hand to answer something, and can open his eyes if we ask him to.  He hears everything, but is sleeping ALL THE TIME.  After 18 days in ICU, he is now in a rehab hospital, and the physical therapists cannot even get him to wake up long enough to work with him.  Has anyone experienced this type of lethargy associated with glioblastoma before?  I am so afraid this is the way he will be indefinitely...  any advice or ideas of why this might be happening?  

My mum had her craniotomy on May 23, she is also very lethargic, but not to the extent of your dad's. Is he on decadron, or was he prior to surgery. Decadron, in combo with the surgery, can make you really lethargic. It sounds like he had complications if he was in ICU for 18 days? At least he is in a rehab hospital now. My mum is now hemiplegic on her left side, and we have not yet started rehab. It takes time for the brain to heal. Is she seeing a therapist for neurorehabilitation? I am looking into this, as I think it might be better for my mum than regular physical therapy.

Is your father on Dex. Did they anticipate neurological damage from the surgery? Did they remove all or most of the tumor?

Some folks are up and around in 24hrs other don't do so well. It’s hard to predict but age, general health, tumor location and total % removed all play major roles when recovering.

Hux

 

There isn't any neurological damage from the surgery - he's a little weaker on his left side but is able to move everything. His vision is good - the right eye better than the left. He is 69 years old and was in okay shape a month ago. ( he went to the gym but was not a runner or major exerciser). He started to show stroke-like symptoms and thats how we discovered the tumor They removed most of the tumor but couldn't get all. There is less than a square cm left. I'm not sure whether he is on dex or not but I will find out. This afternoon he was a bit more responsive than this morning so I'm somewhat encouraged... He isn't able to walk or do much of anything on his own - have you seen someone go from my dads state to walking and being a little more independent? It breaks my heart to see him this way. We are hoping he can be 70% functioning so that he can participate in a clinical trial of the gene therapy vaccine. He has a deadline of 6 weeks post resection surgery - so he only has 3 weeks to be up and (70%) at 'em. And he's supposed to start chemo and radiation at the same time. Ugh - not sure what that'll do to him. Thanks for any input - it is so nice to get information, learn from experiences, and to feel general support from this message board. - Janie

From what you said it sounds like he should be on at least a small dosage of Dex. The drug is definitely a double edge sword but it does work well in reducing swelling and can provide relief of symptoms associated with swelling. There is also Avastin, which can help with symptoms and potentially slow the growth of the existing tumor.

Over time damage caused by the surgey can heal to a certain extent.  The brain is fairly resilient.

You can also consider certain antideypresseants or anti anxiety medicine. This diagnosis can be very traumatic and these sorts of medication can help.

Hux

Just a note!  Please check the gene therapy clinical trial for exclusions.  Sometimes you are unable to receive the therapy after you have been on chemo/radiation.  All of the trials contain very specific criteria.  Hope this helps!!!