Round 1 Clinical Trial Updates – Friday

I’ll post updates on this blog post if I have anything new to report throughout the day, so check this again for new content if you re-visit the blog.

Morning update… Karen is sleeping soundly, having recovered from another evening of the immunotherapy drug trial. She had another bout with the chills, but it lasted a bit less time than previous nights. It’s still completely unpleasant, in a way I’m sure I can’t describe sufficiently, but I’ll do my best.

The drug is administered over a half hour period, and that goes pretty well. She doesn’t feel anything out of the ordinary for a couple hours, and then WOW! The change comes on rather suddenly where one minute she just feels the normal icky, and then the next where she feels FREEZING cold, queasy, and starts shuddering with fever chills. It’s only minutes into it when her muscles start to ache because of the shuddering, and then not to long after that, the muscle pain starts.

The episodes are down to three hours now, from about seven the first night. And the nurses come in regularly to check her vitals, so she gets poked and prodded throughout. Even though the chills only lasted a few hours, she also feels weak for several more hours, and generally ill until morning. I can tell how she feels by the way she sleeps. There’s a certain way her snoring sounds that means she’s actually resting. She’s been sounding that way by around 5 or 6AM.

I’m sure Karen would want me to follow up that comment with an affirmation that her snoring is very “dainty and ladylike.”

Tonight, we’ll see if we can start the Advil a little earlier to help with the muscle pain. She felt a lot better after that took effect last night, but she can’t take that at the same time as the Tylenol, so it’s a bit of a juggle knowing when to take each, and the fever gets priority over muscle aches. It’s no fun at all.

The doc should come by to see her yet this morning, and then I’m off to the lodge to freshen up. Today is the last infusion for round one, so after one more day of this we can go home. The cats have probably noticed we’re missing by now.

Evening update… So much for seeing the cats tomorrow. We failed to take into account that we need to be back up here bright and early Monday morning. The Hope Lodge will let us stay as long as necessary, so it looks like we’ll spend our Sunday in Cleveland. The nurses here recommended a few eateries, but some relaxation might be in order too!

Karen’s a few hours into the post-infusion period, but so far she seems improved. I think the Advil earlier in the process has helped. I’ll add info in the next update.

1 thought on “Round 1 Clinical Trial Updates – Friday”

  1. Thinking about you today… I know it is so hard to do this stuff. Just remember the: one day at a time… and if you need, one step at a time. You can only deal with the important stuff. You are allowed to side step everything else.

    I am thankful you have Charlie there and that he is so loving and wonderful. I am praying for strength and healing.

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