Novartis Clinical Trial Protocol 11-007: Phase I, Multicenter, open-label dose escalation study of LDK378, administered orally in adult patients with tumors characterized by genetic abnormalities in anaplastic lymphoma kinase (ALK)
Cycle 1, Day 1 (March 28)
5:00 AM: “It’s wake up time” as Joe would say. I don’t really do 5 AM, but it wasn’t very hard waking up this morning.
6:17 AM: Departed the Hampton Inn in Central Philadelphia. I did manage to grab a cup of coffee and cold pastry in the lobby while waiting on our car. The pastry was so gross I pitched it in the trash after one bite. It’s really just as well, because Chip can’t eat, and I always try not to eat in front of him on days like this.
6:53 AM: Arrived at Fox Chase Cancer Center
7:15 AM: Vitals recorded, 1st blood draw of the day and urine sample collected. Chip finished reading Francona: The Red Sox Years that Calabro sent him while we waited on his labs to return while I got caught up on e-mails and texts.
9:00 AM: Visit from the oncologist’s nurse who is managing our trial. She walked us through our upcoming schedule, so of course the “scheduler” in me had my FDP out trying to figure out who can fly up or down when to stay with Joe and Crosby. We have to be here the next three weeks in a row and three out of five weeks in May. I see many fun Wednesday night dates in our future!
9:15 AM: EKG and 2nd blood draw
9:26 AM: Chip swallowed his first dose of five LDK capsules. Yeah!! I’m starving though. Being a supportive wife isn’t always easy.
10:26 AM: 3rd blood draw
10:43 AM: Chip just fell asleep so I scarfed down a cup of warm yogurt I swiped off the Hampton Inn breakfast buffet and stashed away in my purse.
11:26 AM: 4th blood draw. Now Chip can finally eat. Yeah!!
11:52 AM: Nasty ass lunch in the cafeteria and quick call to Mom and Dad to check on the kids. One might think you would be able to find healthy, nourishing food in a hospital of all places, but it’s exactly the opposite. The caf’s offerings included hamburgers, hot dogs, pizzas, onion rings, etc., but not the delicious ones you find at a ballpark. It was nasty 1 1/2″ thick crust cafeteria-style pizza. If you are going to cheat, you at least want it to be with delicious and quality badness. Maybe that will become my mission in life–to promote nutrient-rich entrees and install juice bars in hospitals and cancer centers so their food can compliment the healing powers of the medicine.
1:05 PM: Back to our curtained room in the clinical trial unit. Chip is really cold and tired but feeling fine otherwise.
1:26 PM: Blood pressure and temperature check, 2nd EKG and 5th blood draw
2:14 PM: Chip is getting cranky. I told him he better be nice to me if he wanted a ride back to the hotel tonight. Usually I would flash him to boost his morale, but it was SO cold in there. The flashing will just have to wait.
2:43 PM: Reading the March issue of Harper’s Bazaar while Chip watches The Fugitive. Just ate a peanut butter and jelly Lara bar. It was pretty gross, but I just tried to focus on the fact the wrapper promised to “lift my vitality and provide energy with every bite.” Nom, nom.
Me. “It’s really boring watching you get treated for cancer.”
Chip. “What are you doing over there?”
Me. “Nothing. Killing time.”
Chip. “Don’t you get snippy with me.”
Me. “I will get snippy! My butt is going numb from sitting in this chair while you are over there in a recliner!”
Chip. “I’ll trade you a recliner for cancer. Well, actually, I wouldn’t give you cancer.”
3:26 PM: Blood pressure check and 6th blood draw
Chip. “You are sucking the fun out of this room. Will you please just go for a walk?”
Me. “No, that would be the cancer. I AM fun.”
Chip. “Good point.”
Me. “I am full of good points. Will you please turn the tv down? I would hate to get kicked out of here.”
Chip. “Now that would be some shit, wouldn’t it?”
4:26 PM: One more hour to go. We are absolutely delirious at this point, but we can do it.
5:00 PM: Finished my magazine and now ready for spring. Structured blouses in, jackets out. This is not good for me. Pajama-wide or skinny pants in. Check. Can rock both of these. Geometric prints, arts & crafts, textured fabrics and neon snake skin. Check, check. Ruffles in. Can do. Also learned my haircut is in style so glad to have that going for me. Also banged out a few thank you notes for baby gifts to Crosby.
5:26 PM: Final EKG and blood draw of the day. PTL!! We made it. Let’s blow this pop stand.
Me. “Good work today. We make having cancer fun.”
Chip. “Well, I don’t know I’d go that far, but I see what you are trying to get at.”
6:15 PM: Returned to hotel
6:45 PM: Chip was feeling well, not coughing much, had an appetite, wasn’t experiencing any nausea, and we both wanted to move and get some fresh air after being cooped up inside of our curtained room all day long, so we decided to walk the 1 1/4 miles to dinner.
7:20 PM: Celebratory sushi and sake at Fat Salmon
9:00 PM: Walked back to hotel and grabbed a few Philly pretzels out of the lobby to take home with us, and it’s soon to be lights out.
It’s been a long but good, good day for us. We are just as happy as can be tonight that we are finally fighting back again. The stronger the cancer gets, Team Kennett just manages to get even stronger.
We report back to FCCC at 9:00 AM tomorrow. They will check all of Chip’s vitals, repeat the EKG, draw blood, administer his second dose of LDK and send us home until this time next week.
We got this.