Today I spent seven and a half hours at the cancer infusion center. That’s how long the entire Ocrevus infusion took, including an hour for pre-meds and an hour afterward for observation. If I were to apply Lean Manufacturing Principles (an engineering thing) to this process, I think we could have done it in about 90 minutes.
Ocrevus is the new, and only MS drug approved for primary progressive multiple sclerosis. It seems to work best on people earlier in the disease and younger than me, but I’m giving it a try nonetheless. I thought I would share with you the basic setup I had for the day.
A: The reason was there — about $30,000 worth of Ocrevus, one of two infusions per year that I receive.
B: IV pump which delivered the Ocrevus.
C: Perfectly sized pillow from home
D: The spot on the back of my hand where the Ocrevus entered my veins. The first nurse, when she tried to find a vein, gave up without even poking me once. The charge nurse failed on her first try but succeeded on her second. Better than average.
E: Hospital issue pillow for me to rest my left arm on.
H: Plastic urinal for me to pee into. Same as I use at home.
I: Tablet. Not sure why I brought it since there’s no Internet there.
J: Water which I didn’t touch because I had so many fluids going into me anyway.
K: Equally useless mouse for the tablet.
L: Clunky TV remote for tiny hospital TV.
M: Smart phone which waffled between zero and one bar of reception — my only link to the outside world for seven and a half hours.
N: I can’t forget my trustee Permobil wheelchair, which kept me comfortably reclined for the duration.
Missing from the photo are the people who took such great care of me: a team of nurses and technicians and of course my lovely wife.
Overall, it’s not a horrible experience. The cancer patients got in and out more quickly than I did, but I won’t go home with terrible side effects like they do. I won’t be able to tell if this treatment is helping for about another six months or so. You people will be the first to know. That’s a lie. I will let you know… let’s say… promptly. Definitely promptly.
Oh I so hope it works! even if 6 months. The scene reminds me of my nightmare days in the hospital receiving IVs of steroids (pre MS meds). I hated the IV, bored out of my mind with TV only technology back then….
ps. I like your useless mouse lol
Kim, you are definitely dating yourself with horror stories of IV steroids as the only option.
You look quite comfortable and as always, very positive! I too hope it works. (pretty stark room)
Ms. Carrie, I am good at being comfortable, especially with the wheelchair I have.
Mitch, I so hope this works for you. I know how hard you've worked to find a solution. As to the infusion set up, it fulfills my engineering philosophy of " no sense doing it the easy way." Or maybe this is the easy way. Either way, you go, guy!
Stephen, I think we are old enough to remember IVs that were gravity fed. This is so much cooler.
Sothe real torture was being without communications technology for seven and a half hours? Good think you're a people person!
a friend has since informed me that there is a secret Wi-Fi network at this hospital. Next time…
Crazy you bring up Lean. In my 'declining years' (when I was given less and less responsibility due to my MS), my last job title was Lean Engineer. I would do all the value stream maps and all that and get people out of processes if able, yada, yada. It looks like you were engaging in a 5S exercise with all the numbers!
I'm holding out on Ocrevus until I hear others results. I know intellectually it's the same molecule as Rituxan but is less of a Chimera and more humanized. I hope to God it works as nothing has worked for me either with my two lonely old, non enhancing spinal lesions that we all know are the hallmarks of PP. I was so disheartened after breaking down the trial and seeing step III trial inclusion criteria; progressive diagnosis plus enhancing lesions observed under MRI. So I'm out as a trial participant but my fingers and toes are crossed big time.
My local buddy has lesions in the exact same spot on the spine as mine and has similar symptoms but on his right side, we'd kill it in a sack race, and he just finished round 2. I was the CCSVI guinea pig and he's the Ocrevus guinea pig for us! Just hoping beyond hope they are onto something with this drug.
Lew, great to hear from you. Yes, this is kind of a long shot for me, given that I do not have enhancing lesions. But, I'm desperate. Hey, by the way, I still see Randi once in a while. Should I say hello from you?