one down 23+ to go

ONE DOWN 23+ TO GO

last friday i wrote this blog titled here is to a new start today
we got about half way down to ucla from santa barbara then i got a phone call
sorry
we have to cancel
it seems that the official clearance based on my amyvid amyloid pet scan had not gotten its final approval
we will have to reschedule
bummer i thought to myself
actually i said something out loud not printable here

i started thinking back to 4 years ago when i arrived for my first ever infusion in biogens aducanumab study when i was going to ut southwestern in dallas
i was real excited that day 
after a long 3 hour drive from austin to dallas fighting through the dallas traffic
i was told almost the same thing
some lab or protocol paperwork had not been done and needed final approval
we might have to reschedule
luckily that time
we waited an hour or so 
then later that day i got my first infusion in this study

fast forward 4 years to last friday
sorry
we will reschedule for tuesday
hopefully we will get the approval by then to start the first infusion of the restart biogen aducanumab now called aduhelm study 

so
on monday i got a call 
we are on for tuesday
im more than ready

so 
yesterday
off we went at 6am
dreading hitting that 405 traffic around 800am 
that last 10 miles can take longer than the first 80 miles

its was a sign
we zoomed right down to ucla the fastest we have made it there
in fact we got there early 
so
we took a walk for 30 minutes

i
saw the neurologist for a visit
got labs
had an ekg which i snuck a glance at yes it was normal
had some memory tests
my wife she was interviewed
i asked if they would memory test her
no
shes not in the study 
then
off to the infusion center

the nurse was the first nurse i saw at ucla for my first ucla infusion 


she easily started an iv and used the blue wrap to hold down the iv
blue is my favorite color
i always feel better when they use blue

then 
the iv as above was hung
its a 1mg/kg dose of aduhelm (aducanumab)
the full dose is 10 mg/kg
the dose will be tapered over time from 1 mg/kg to 3 mg/kg to 6 mg/km then eventually to the 10 mg/km dose that has been shown to be effective
i have had the 10 mg/kg dose before the study was stopped prepandemic
the infusion contains 100 ml of normal saline and is ran in over 1 hour then a 30 minute saline flush is done

so
yesterday 
the iv was run in 
then
after an hour and a half we were back on our way to santa barbara

total time in clinics
5+ hours
total travel time
4 1/2 hours

in the future the visits will be only 2 hours long
every 6 months i will have these longer visits
later this year i will have to have a couple of mris of the brain after i get my 10 mg doses

the reason for the mri is to assess for aria where there can be microbleeds and some swelling that usually resolves
if it shows up the infusions are stopped until they resolve then the infusions are restarted

these aria areas occur as the aduhelm (aducanumab) binds to the amyloid plaques that have accumulated in the brain and removes them
this tearing away of the plaques causes these microbleeds

i will be receiving these infusions about every 28 days for the next 2 years then either the study will be continued or i will get it in the private world if it looks like its working

my amyvid amyloid pet scan in 2 years should show no measurable amyloid in the brain

sadly about half the folks that were in the study at this location arent restarting the study
some because they have progressed too far to continue to qualify for the drug
somes health deteriorated in that 1-2 years this study got delayed

my memory has remained stable in those 2 years i have been waiting
heres hoping it stays that way

yesterday i was interviewed by another local newspaper about my involvement in the study 
i have another photo shoot today for that article
it will probably be similar to the ny times article with a more local flare

then
i was contacted by a popular alzheimers newsletter and podcast for an interview about the same thing
that will happen probably in about a month

i will post links to these when they are available

this all helps to get the word out

yep
we are are stoked

no
i dont feel smarter today

the organicgreendoctor