Tomorrow I shall drive to Dover NH for my second COVID-19 swab. Not because I am symptomatic but rather because I am now scheduled for an endoscopy on Monday and this is a requirement.
The endoscopy is indicated by the fact that my throat/esophagus is yet painful, almost five and 1/2 weeks out from my last infusion. Not the usual course of events. So the plan is to see if something else–perhaps a secondary infection–is responsible for my discomfort.
I am on board because part of being a participant in a phase I clinical trial is parsing out the safety profile/side effects of drug. Although I am the only person to (thus far) report mucositis effects of such sustained extant, it does not mean I am an anomaly. I might simply be the first.
This is the responsibility of being in a clinical trial that is often under appreciated. Phase I is not to test for efficacy but rather for safety. My primary responsibility is to not only take drug, but also to report back side effects.
It is empowering but also can cause one to doubt oneself. In phase I you are often the first (and sometimes only) person to report a particular side effect. However, I take this seriously. Like an astronaut, I am traveling to places uncharted and it is my obligation to note and record what I see and experience.
You certainly are the embodiment of said “Astronaut” Linnea ,except you’re flying solo in a sense, though of course not. You are experiencing these effects, as you stated, probably for the first time.You are truly an amazing person, I know you won’t stop being who you are!✊🏼❤️
Thinking of you!
Your strength, determination and caring for others is what attracted me from the start. Phase 1 studies are gutsy, though I understand the attraction when there are limited options. Thank you. Hope you find answers and more relief for your pain.
We love you and your including us in your uncharted journey. It can be any of us at any given unknown time.you teach us not to fear. You are fully alive and present in this moment.