Today is day 1 of the new clinical trial. At least we hope it will be (see 60, below).
For now, some numbers
0
- number of masks being warn at the clinic. Apparently the end of the COVID emergency has changed masking requirements at the clinic. It's been a long time since we were at a healthcare facility and didn't see everyone wearing masks.
2 (a busy number)
The number of pills Penny will take each day while in this trial. The trickiest part is that she can't eat for 2 hours before and 1 hour after, so we'll have to figure out how to fit this into the daily routine. [Update: Turns out it is 2 pills twice each day. Good thing the dose isn't in one pill -- each of the half-dose pills is already pretty large.]
Dose level the study is currently at. It sounds like they plan to have 3 or 4 dose levels, and the expectation is that the effects of the drug should be apparent at this dose level. Dr. Lakhani said that he would expect to see a response in "days to weeks, not months".
Number of people in the trial at dose level 2. The first person began last week. Penny will be the second. The biggest perk of being second is that the first person has to come to the clinic for monitoring 5 days in the first week. Penny only has to do that today and again next week Wednesday.
3
- The average number of calls per day the START clinic in Grand Rapids has been receiving from across the country with inquiries about getting into this study. Interest/demand is high. Penny has the only available slot in Grand Rapids.
5
Number of nights we spent in the UP in that gap between the last tests and scans and the start of the new trial
Also the number of different shops we got pasties from on our UP pasty tour.
14
- Approximate number of hours we will be at the clinic today (and again a week from today). The treatment just requires taking a pill, but we will be hanging out at the clinic for heart monitoring and blood draws. As I understand things, the blood draws are to measure how the drug is metabolized over time.
60
- required creatinine clearance to start the study. Penny's measurement came in at 59.9 this morning. So... She's getting some fluids and this will be recalculated in an hour. The hope is that we'll be just on the other side of 60 and everything will be good to go. It's unclear just what happens if the number remains just below 60.
Update: The new measurement is just over 60, so we are good to go!
Comments
Teri Warners: So glad Penny can move forward with treatment and that this slot is available in GR. Glad you could enjoy a U.P. trip too! Prayers as you journey forward.
Randall Pruim: Because this is a clinical trial, there is a whole diary/log to fill out for each dose, last time eating, various other notes, etc. The first dose today didn't happen until after 11, and there are limits on how much the time can be shifted in one day, so it might take a couple days to get to a normal routine. The biggest issue is that due to other issues, it works better for Penny to each small amounts throughout the day. So those 3-hour windows of no eating are going to mess with that.
George Monsma, Jr.: praying that the treatment is effective and has few side effects.
Marie VanderLinde : Scott and I are grateful Penny could start today, and grateful for her GR spot! Praying for good response and no side effects.
Susan Langeland: Hurrah for 60! and ALL the pasties and other good numbers. the #2 pill requirements are difficult. I've been on meds like that, IMO the companies that make them should provide charts with lots of ways to plug in and achieve eating AND taking those pills. (I think you meant eat instead of each in your post.) Getting started with those are always mind boggling to me, an unorganized, unregimented person.
Alisa Tigchelaar: Thanks for the update, Randy. Grateful to hear that the new measurement means that things can move forward. Praying for Penny's day today. 💗
Chriss Pruim: praying for minimal side effects and a good outcome from the treatment!!!
Terri A Boer: Continued prayers for you all. Praying the trial will be successful for you Penny!!
Talon Rindels : Really appreciate the updates, Uncle Randy and Aunt Penny! So wonderful that she's been able to proceed with the treatment. Continuing to pray. <3