Penny's scan was moved up to tomorrow morning bright and early. (Arrival time 7 am.)
The current study drug has a pretty low effectiveness rate (roughly 5% of people who have taken it have seen a benefit). Given her recent symptoms, we are not anticipating Penny is in the 5%. But we are curious to see what the scan reveals. We should find out Tuesday or Wednesday (a) if there has been disease progression that will disqualify her from continuing in the current clinical trial, and (b) if anything on the scan sheds light on her recent difficulties in getting enough calories and the extreme fatigue she has been experiencing.
A scan tomorrow means that tonight is prep night. Prep consists of drinking a barium smoothy and also taking prednisone and benadryl to counteract her allergy to the IV contrast she will get tomorrow for the scan.
I think she is going to give up on the smoothy. She's only had half of the bottle, but given her recent weight loss, she probably doesn't need as much as the average person anyway. It has been hard enough to get enough to eat and drink the last few days, and the smoothy-in-a-bottle is not settling well. The current plan is to avoid pushing too hard lest it induce vomiting which would interfere with taking prednisone.
Normally the day of a scan Penny has prednisone-induced alertness. This often keeps her up late the night after. It will be interesting to see how it balances out against the fatigue she has been having. She has only been awake and alert for a few hours each day the last several days, and hasn't had much energy even when awake. Palliative care would have prescribed a course of steroids to help with this, but steroids interfere with the study drug, so they aren't permitted while in the study (with an exception for the pre-scan prep).
Usually there is also a bit of a "crash" the day after the day of the scan, but it isn't clear that that will be noticeable given the recent levels of fatigue.
One bit of good news: the feeling of stomach fullness has been less frequent the last couple days. That has perhaps translated into eating a bit more today than the last few days -- a small step in the right direction.
Comments
Dawn Mulder: Praying💛
Sara Vander Bie: Praying for you both! In Christ's Love <3
Kimberley Carlos Belez: Praying for you both!
Marie VanderLinde : Praying today
Andrea Turner: I am awaiting the news of what the scan reveals. These last few weeks it seems Penny has been so very tired, and eating such a chore...I know you say it's not likely she'll be in the 5%...but still, sometimes it is good to get a sense of things; it is somehow orienting. Thanks so much for the updates! I benefit from hearing about your and Penny's approach, slow and very, very steady.
Patricia Boer Fischer : Thank-U So Much 4the Updates, We Really appreciate them all as Ya's go through this Journey!! Just know Y'all n-Our Prayers, Remember God's Got 🙏 Ya's, We Love ❤️ Ya's both, Hugg's
Tony Holmes Curran: Praying for you both today…praying for an awareness of God’s love over you and in you. A line from Psalm 139 comes to mind, “You hem me in behind and before, and you lay your hand upon me.” I pray that you may sense and know this love today.