So... despite my previous prediction Mom received her 11 pm Thursday dose which led to a really, really rough night for her. Thankfully Carolyn was there to sit by her bed and remind her of where she was and what was going on. Mom was really fuzzy and out of it during the morning , drifting off again in the middle of sentences or actions. By mid-afternoon she was doing a lot better and was regaling us with stories. Then as the evening progressed things worsened again and a new symptom popped up: excruciatingly achy joints in her shoulders and knees. In addition, a lot of the neuro symptoms from the first cycle started to come back (though thankfully not to the same degree). In addition to fuzziness, she had anxiety, itchiness, antsiness, confusion. So not fun.
Based on all that the doctors gave her a choice of whether to have one last dose for the cycle and she (wisely i think) declined. So she ended up with 7 doses out of the 14 (after getting 9 the first three cycles) which was really good.
Today (Saturday) has been another tough one. She's certainly not going home today. The good news is that the electrolyte levels and diarrhea are all getting better. However her neuro symptoms (due to a combination of sleep deprivation, IL-2 toxicity, and impact of the other medications that were treating the IL-2 side effects) and achiness remain in full force. She is having great difficulty completing sentences (mostly because she drifts off in the middle of them) and they're not always making sense.
It's frustrating and distressing for someone who is always so on top of things and whose mind is so sharp to be in this position but at least this time she recognizes what's going on (most of the time) and knows it will pass.
So send good thoughts to her today, she needs it. Hopefully by tomorrow more of this will have worked it's way out of her body and she'll either be ready to be released or will at least be feeling better and resting up waiting to get out on Monday.
I'll keep you posted.
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