Hi all. My dad (62 yr old male) diagnosed 4/16 with GBM in left temporal lobe. Surgery at UCSF with full resection and then 6 weeks radiation and temodar at local hospital. Was also doing a very light cocktail mostly supplements and cannabis.
Extreme fatigue and bad nausea began around week 4 or 5 of treatment but was manageable. Finished treatment last Monday and has since been feeling worse each day.
On Saturday he became very confused, messing up words, not knowing peoples names. Sunday took 8mg dex as local oncologist thought it could be swelling. No improvement, up all night, Monday morning SEVERELY agitated. Went to local hospital and was admitted. At this point he was hallucinating and hearing things. They did an MRI and the analysis said:
Scattered small T2/flair bright foci are randomly scattered in the periventricular white matter, not significantly changed.
Abnormal signal in the left mesial temporal lobe and uncus. Suggest correlation for encephalitis possibly herpes orgin
Chronic ischemic small vessel white matter disease, not significantly changed.
They are now testing him for an infection? No one seems to really know whats going on and he is soooooo miserable, still very confused. I"m waiting to hear back from his doctor at UCSF but in the meantime I was just wondering if any of you guys have any idea what could be wrong??
Any infection (such as a UTI or cut) could cause severe agitation, and this is what we found for ourselves with a UTI. Dexa depresses the body temp so anything near 98.0 or higher should be considered a possible fever.
ReplyDeleteAlso, if he's taking keppra, keppra rage is a very common thing. The two together could result in some really violently high agitation.
The agitation and hallucinations seems likely to be steroid psychosis--not rare at all. Seems the radiologist was hinting at possible herpes encephalitis--possible with immune suppression from any/all of the treatments.
ReplyDeleteThough we all worry about tumor recurrence/growth, there are many other pitfalls that can arise with glioma, sadly.
Infection caused lots of strange symptoms for my husband - "word salad" (difficulty with getting correct words out), seizures, confusion, etc. his tumor was temporal and the infection was at surgical site (serratia obviously from initial surgery). Took doctors almost 6 weeks to figure out it was infection. Tried dexamethasone, seizure meds, etc. it would come and go with my husband until all the symptoms stayed and pusses started oozing from the original surgery site.
ReplyDeleteThanks guys. He's improved a little. Still a little bit of a mystery. Hes tested negative for every infection so far. Still waiting on one test...
ReplyDeleteStaying away from the steroids. I do think it was the steroid psychosis that made things much worse.
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