It's been over a month since I've posted…caring for Kristine has become all-encompassing for me. Kristine tolerated four ipi/nivo treatments, although not without complications. In fact, it seems as if it's been one complication after another and we're just trying to put out fires in order to keep her alive long enough to show a response.
She has deteriorated in many areas: her upper body has significant weakness now, in addition to her lower body…that has caused us to go to only using a hoyer lift to move her; she has also deteriorated neurologically…she's severely lethargic and is really confused.
She had an MRI/CT done on Tue 8/29 to see if there's been any response to the treatments. That evening, Dr. Freeman called saying that the radiologist found a dvt in her leg and a pulmonary embolism. We called 911 and went to our local hospital with the idea that she'd transfer to a hospital where Dr. Freeman could see her in the following days.
A filter was placed to catch the blood clots…thought we were done. Nope.
*She became almost comatose…unable to wake up, but does respond to pain. They have tried everything to get her to wake up: drain in her brain, taking her off fentanyl patch. She's breathing on her own, heart rate is ok.
*Her neutrophils are zero…they put her on Neupogen last Wed…not seeing any response.
The drs here believe her current state is due to the tumor burden in her brain and nothing can be done.
On top of all that, Dr. Freeman says her MRI shows a 20% reduction in tumor size…she's actually responding to treatment!
Dr. Freeman had been in daily contact with the drs here up until Saturday. I'm hoping she weighs in tomorrow on where we are.
Not sure anyone can help, I'm just feeling we're at the end.
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