Hey everyone, not looking for advice, just documenting my husband’s story here since it’s been a while since I’ve checked in with updates.
After doing really well on prednisone, about a week after he was done with that (end of May) he developed severe fatigue, increasingly bad headaches, severe nausea, double vision, and increasing confusion and memory loss. It was very reminiscent of dementia. There were a couple false starts and uncertainty about what to do but he finally ended up in the hospital this week after an MRI showed ventriculitis, or inflammation in one of the ventricles in his brain.
The doctors aren’t sure of the cause yet. It could be an infection (bacterial or viral or fungal), or it could be disease progression. He’s been at the hospital most of this week while the docs do tests on his cerebral spinal fluid to figure out what’s happening. He’s on antibiotics in case it’s an infection. If it’s disease progression, I don’t think there are any more systemic treatments for him since he has tried taf/mek, ipi/nivo, pembro, and ipi/pembro at this point. He’s also very weak and confused so I don’t think he’d be up for another strong drug. But right now we’re still hopeful (!) for a brain infection, which we can at least treat with antibiotics or antivirals.
As the days pass he’s become less coherent and harder to rouse. He just had another CT scan of his brain to see if something might have changed again.
I miss him very much. The past month has been very hard while he’s been so confused and unlike himself. I’m scared this is the beginning of the end.
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