Over a year ago I posted a note about my husband, 59 yrs old, approaching his 4th anniversary with a left temporal GBM. He is still alive, but I want to warn about a common treatment that nearly did him in this summer. You can die from NON-TUMOR and treatment related problems.
May 8th he had right side facial weakness and CT showed a blood clot near the tumor cavity but no tumor by MRI, or PET scan. Rather than surgically remove the clot, they treated with high dose dexamethasone to reduce cerebral edema. It initially worked well. Within 72 hours his facial movement was nearly symmetrical, he could drink, swallow, walk,etc. and I drove him home from the hospital. His speech was the main impairment.
At about 12 days from the start of steroids (24 mg of Decadron/day), my husband mysteriously started to become weaker, then so much so, I was calling his neurologist several times a week. He did not think it was a steroid problem, but said I could decrease his dose a day ahead of scheduled two week decrease. On May 28, I took him to the emergency room, got another CT, thinking he had another bleed. All clear, so they doubled his seizure meds trileptal and depakote. This made him unresponsive. I went back to the old dose after calling the neuro-oncologist again. I took him to his internist, the neurosurgeon who prescribed the steroids ( and was his attending physician) and his neuro radiologist ( whose opinion I value) over the next three weeks.
The advice:
Internist- his sodium is a bit low, limit water and drink gatorade. Repeat the sodium level in a week. I don't know why he looks so weak.
Neurosurgeon- I am sure his tumor is back, perhaps hiding behind the nicely resolving clot. We can consider gamma knife later sometime. He is clearly not doing well, I could do a VP shunt since his ventricles look a little big on the new scan." You can try to reduce the steroids if you want. If he can tolerate it. My nurse will give you a prescription. I'll see him again in 3 months for an MRI".
The neuroloncologist- The new MRI shows no tumor, you look terrible, but this is NOT a steroid problem. You could try a ventriculoperitoneal (VP shunt, if the neurosurgeon suggests it). Keep up the anticonvulsants.
Neuroradiologist- I'm sorry you are getting so much conflicting advice. Just do aggressive physical therapy and wait a month. Don't do the VP shunt. I don't think the ventricles have changed.
Long story made short. I called the ambulance a week later when he could not stand up at all. He was admitted to the hospital's ICU with pneumonia, and atrial flutter and was left on steroids for another 6 weeks. After 51 days in the hospital ( and placement of a PEG for tube feeding, cardioversion, insulin for steroid induced diabetes, etc), he was transferred to an acute rehab center with the diagnosis of STEROID INDUCED MYOPATHY. It took a lot of fighting to get them to admit the diagnosis. They want so badly to prove the odds that his tumor recurred.
After 5 weeks , he can now hold his head up, sit without support, and use both hands to eat a regular diet. I am hoping for a full recovery to our pre-clot state. We are at 4 years and 8 months since his surgery. He was and is living on prayer.
This is a potentially deadly medicine used on a survivor. We are not out of the woods yet. We also stopped anticonvulsants since he had hit rock bottom in the quality of life category. When he was accidentally taken off his Depakote in the hospital (yes, by accident), he became a new man, totally alert and communicative.
I am interested in other late effects, complications, signs of recurrence, etc. especially in long term survivors. Thanks