thought i'd give an update on my experience with this study. i got my first infusion on oct 17th and had no ill effects other than my blood pressure getting super high. but i think that was from the last minute fumbles in planning thru science 37. my infusion medicine was supposed to arrive the afternoon prior to my infusion date. never showed up until about 2 hrs prior to my infusion viist. needless to say there were alot of frantic emails, texts and calls that went on to make sure my visit didn't get cancelled
i was in the very last day that i could get infused else i would have to go thru the 5 hr qualification process all over again!!!! no wonder my bp was super high. i decided if that happened i would decline to go ahead with the trial. i figured if they couldn't get the logistics right about delivering supplies what else could they screw up right?
but in the end my visit wasn't cancelled (i know of others that did have that happen, there is a fb group for this science 37 study that someone started btw which has been very helpful!
they did not send enough bandaids, covid test kit to ensure i was covid negative did not have enough reagent in it so we had to use MY home test kit.....lots of stuff like that.
but my nurse was great! i've had her for follow up draws. super fast super competent. very skilled. like her alot. best part of the study. but in general its not well managed. we are supposed to get $100 compensation gift cards for each visit and i had to really nag my clinical coordinator to get my last card. not that i'm doing it for the money BUT it does come in handy and i shouldn't have to do this kind of thing! i'm not so sure i would ever do anther science 37 study again. i like the concept but the reality is much differnt. i find it to be high stress and alot to juggle and it takes more time then just going to a brick and mortar place where everything is organized and ready to go and you get more $$ too apparently!
But in many cases the brick and mortar places have been hundreds of miles from me and unless i needed to be in clincal trial for treatment i cannot travel for a study...an extra study aside from treatment related. that's my update. i'll get my next infusion next month? and i'll give another update. hopefully all will go smoothly. nervous to be traveling to mda and i've not yet gotten my covid booster. you have to wait 14 days after the infusion to get the flu shot (done!) and 28 days to get the covid booster. i will get it when i return from mda....have it scheduled for next sunday! ugh i get so sick from those boosters!